Thanks be to God for giving us one day to recover! Max has no appointments and almost no schedule minus meds and blood work every once in awhile so we will spend the day relaxing after the long few days we have had. We jump back in tomorrow with PET scan at 8:15 and getting a central line put it sometime in the afternoon, which will involve surgery and anesthesia again so we can start chemo asap. 

The latest news is that his kidneys already looks better after a night of fluids so they will give him a 4 hour break from fluids and back off blood work until every 12 hours. They still do not know what the cancer is. The oncologist explained it this morning....pathology will look at the symptoms, location of tumors, and make their best guess on what it could be. Every one of their best guesses has been negative. So they have requested genetics testing on the biopsy to give them a better idea of what it could possibly be. That will be a few days delay. Which is why they need to start chemo asap. They will choose to go with the high level hard hitting chemo initially just in case, then readjust if needed in case results come back with something that doesn't require as much. We are still very much at peace, allowing Our Lord to direct the doctors and Max's path. He is not surprised that the doctors are surprised. We are grateful for a day to not think about testing and uncertainty but instead being able to focus on enjoying Max, who is in a great mood after getting visits from friends and from the local fire dept to cheer him up today! 

Today we pray all of our wonderful prayer warriors get a day of family, friends, feasting, and giving thanks to Our Lord, through whom all good things flow! We love you! 

-Amanda & Matt

‭1 Thessalonians‬ ‭5:16‭-‬18‬ ‭

[16] Rejoice always; [17] pray without ceasing; [18] in everything give thanks; for this is God’s will for you in Christ Jesus.

All glory to God to delivering some more wisdom to our medical team! They decided to do a few extra blood tests this afternoon to verify how his body was doing post radiation and noticed elevated potassium, phosphorus, and LDH. High levels of those signifies that the body is killing off a lot of cells, usually from chemo but in Max's case, his steroids and radiation treatments. If left alone, they could cause kidney issues. So in the interest of being proactive on this front, Max will be on more fluids around the clock and they are adding an extra medication to help and he will have blood draws every 6 hours to monitor it. Please pray Max is able to rest through all of this and this intervention is exactly what he needs.  We are reminded that every thing that happens is known by Our Lord and He is not surprised by anything. Today shows that we hold onto hope through Him through His love for us. All glory to God! 

We love you! 

-Amanda & Matt

‭Romans‬ ‭5:3‭-‬5‬ ‭

[3] And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; [4] and perseverance, proven character; and proven character, hope; [5] and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.

Thanks be to God for giving us the right perspective. Max is here and we are still getting to hear his laugh every once in awhile so we are good. Thanks be to God!

We all got sleep last night since Max was allowed to stay off fluids all night, which was amazing. Max rolled  over, looked at the wall and said "I slept until 7:50!" And we realized it was the first time he could read the clock on the wall since we got here! We have been having him watch movies on the iPad because he can't even really see the TV.  Hopefully his eye improves enough in the next 24 hours he will be able to see that again as well! The optometrists stopped in and said his eyes look great and he's back to 20/20 vision in that eye too! The radiation has helped reverse the course of that tumor and we are grateful God brought us up here quickly to get it addressed quickly. 

So yesterday the team informed us that it was most likely PTLD and all their data points to that so far. This morning, we met the lymphoma doctor since we would most likely be moving to her team. Well, this afternoon, the attending oncologist and even our oncologist from the last 6 months came by to tell us that the pathology test for lymphoma is negative.  Which means it is not PTLD. They have no idea what it is because it looks and acts just like it. So we are back to waiting on the remainder of the tests from the biopsy.  And we have a PET scan Friday. And Max will be getting a central line put in again to be able to receive chemo as early as Friday evening. Now that it is not lymphoma, they have to treat it like a solid tumor cancer so they need to get chemo into Max asap as whatever it is is spreading. His MRI and CT scan confirmed there are more nodules in the chest cavity, near the stomach, liver, kidneys.  If this was PTLD, all the locations are insignificant because its all treatable and responds to chemo regardless of where they are.  At the end of the day, Max looks like a mess and there are no answers.....and yet...Matt and I have peace. And are not worried. A grace from God absolutely because thinking about this from our heads alone, we would be panicking with the doctors.  Jesus, we trust in You! Please see Max through this....help him to see You, know You are here with him, and please guide the doctors on the path they need to take to bring healing to Max.  Max is Your child. We place him at Your feet and leave his destiny in Your loving hands. 

Today was a full day with MRI, CT scan, echo, EKG, and his last treatment of radiation so we got to get a break by 4pm to go for a walk and eat in the cafeteria again. Max is exhausted and ready to lay down and rest again. We pray tonight is another good nights sleep and that Max receives the peace Our Lord promises to all of His children that surrender to His will. 

Thank you for continuing to pray for Max and all of us. We couldn't do this without you! We love you! 

-Amanda & Matt

Surrender Novena: Jesus to servant Donlindo Routolo

"You see evil growing instead of weakening? Do not worry. Close your eyes and say to Me with faith: "Thy will be done, You take care of it". I say to you that I will take care of it, and that I will intervene as does a doctor and I will accomplish miracles when they are needed. Do you see that the sick person is getting worse? Do not be upset, but close your eyes and say "You take care of it". I say to you that I will take care of it, and that there is no medicine more powerful than My loving intervention. By my love, I promise this to you.

O Jesus, I surrender myself to you, take care of everything! (10 times)

Praise Jesus for the end of the day today!! It was a LONG day, for all of us, and we are excited it is over. Sorry if I repeat some updates but here we go. Max started NPO in preparation for biopsy at midnight. They came to get him at 6:45 this morning to bring him to surgery center so they could do biopsy on his head and the liver.  They took him back and an hour and a half later, the surgeon came out to deliver the news that it went great and he made the decision to pull 3-4 samples from the head tumor, just to make sure Max didn't have to go through this again, which is perfect. Max was in recovery for an hour then we headed back to the room. At that point Max was pretty awake and started his every 5 minute asking how much longer. Unfortunately, he was so upset he had to lay down, he cried the last 2 hours. By the time transport showed up to take him to the radiation appointment, he was exhausted just from crying. Once we got to radiation, he was asleep and we assumed it would be great but his eyes swelled from the crying so the super tight mask was too tight! They had to cut out the eye holes so Max could get it on. This appointment that should have taken 10 minutes now lasted 30 minutes. By the time we got back to the hospital, he was just done. He slept the rest of the day, didn't eat anything and really had no desire to even get out of the room. Tomorrow, we pray for Max to have a better day...more of a reason to get up and walk and eat some food. 

Matt and Amanda had our own struggles today just trying to get one plan out of the team to see if we had a chance of getting home for the holiday. Final answer is no. It took all day to get that answer that we finally agree is the answer. The nature of Max's medical issue is that there are 4 doctors that all have to be in the loop and agree before anything is decided. Max is seeing all 4 daily and today, all 4 had a different update until they finally were all aligned by 7pm tonight. Here is the last updates we received after A LOT of discussion today and most of this may change once we get final biopsy results and a PET scan on Friday. The initial guess based on prelim head biopsy is that we are seeing PTLD. Essentially, it is a lymphoma cancer that is caused by transplant meds and an over reactive immune system response. The good news is that it is treatable and most likely will not come back. But bad news is we treat it like lymphoma, with chemo. So Max will go through more chemo. The combination of chemo and temporarily lowering rejection med doses usually takes care of it. Because we have to monitor rejection med doses and rejection with the liver, we probably will need to stay close to Cincinnati. Radiation can be used but typically is not in most plans. So after tomorrow, we do not have radiation on the plan assuming his tumors in his eye and head are stable and we get on a chemotherapy plan quickly. We do not have initial liver biopsy results back yet. 

Because we have to have the PET scan that shows us all the areas where PTLD is, we will be waiting around to do that. We also will be waiting for biopsy results, which should be Friday as well. If anything changes, they will be able to reassess and react quicker, like doing the radiation on the tumors on his head to keep them from getting too bad while we wait to start chemo. 

Sorry for the long update but there was a lot that happened today. Tomorrow is another busy day with Max's MRI and CT scan for his liver that were scheduled for next week. They are taking care of them while we are here now. We are also fitting in EKG,Echo, and GFR, a kidney test, to get baselines for Max before starting chemo again. 

Please pray for peace. We had such peace this morning during surgery and it became a battle by the end of the day. Please pray Max has a better day tomorrow. Lord, You know our hearts, You know what we need. Jesus, I trust in You; Take care of every thing.  

We love you and truly couldn't do this without you! 

-Amanda & Matt

‭‭Deuteronomy‬ ‭31:6‬ 

[6] Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Thanks be to God for a successful biopsy and Max has one hour left of his lay flat time. Please pray for peace for Max....making him lay flat for 6 hours after dealing with so many hard appointments the last 24 hours is weighing on him. Lord, give Max Your peace. 

We love you! 

-Amanda & Matt

‭‭John‬ ‭16:33‬ ‭

[33] I have told you this so that you might have peace in me. In the world you will have trouble, but take courage, I have conquered the world.

Thanks be to God for having this biopsy proceed without any further delay! It will be an hour and a half long and they will come get us when he is in recovery. He will be required to lay flat for 6 hours after to limit the risk of bleeding after the liver biopsy.  Please pray for the surgeon and nurses to be guided by God's own hand and give us results we can act on to fix Max's liver and brain.  Pray Max is kept calm and at peace and handles the surgery and recovery well. We will update when he is done.  We love you! 

-Amanda & Matt

‭‭Philippians‬ ‭4:6‭-‬7‬ ‭

[6] Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. [7] Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.

Thanks be to God for seeing to a wonderful end of day. We did not get the biopsy completed (they called for him to the OR while we were at radiation this morning) but it is scheduled for 7:30am tomorrow  morning. Max was so excited to be done with his first radiation treatment that he spent the rest of the afternoon from 4pm until 8pm talking non stop, taking a walk to the cafeteria, shopping for whatever food sounded good, eating almost none of it because his eyes were bigger than his stomach :) But he was cracking jokes and asking a million questions and Matt and Amanda just enjoyed having our Max back, even for a little bit. Thanks be to God!! 

The radiation treatment was a little rough getting used to the machine and the mask being on his face so he couldn't move but it was only a 7 minute  procedure. They let Max pick songs he wanted to listen to and he only got through 2  songs before it was over! Tomorrow, we will do the same thing at 3:20pm and they have promised us it will only be 1 song long this time! 

The biopsy scheduled for tomorrow will be of the tumor on the back of his head and his liver as well. They did not touch that tumor in radiation today, instead focusing on the eye one to get Max some relief from the symptoms and allow the biopsy to still be able to collect tissue sample to tell us what we are dealing with. Max is still successfully keeping the doctors guessing, by having none of his symptoms be the norm of prior patients. At this point, we just laugh when they say he isn't following the typical path. Our Lord is certainly directing Max's path. Thanks be to God! They are also opting to do the liver biopsy at the same time to take advantage of Max already being under anesthesia and to not delay finding out the issue with the liver. Right now, everyone is scheduling appointments with the expectation we will be able to go home for Thanksgiving Wednesday and come back Sunday to continue treatment Monday. We will see how the biopsy goes and what the results are to see if that is still possible. All in His hands and we will do whatever path He has us on. 

Please pray for a smooth surgery tomorrow, that both samples will give us results on what is going on with Max's body. Pray for wisdom and guidance for the doctors and staff completing the surgery and reviewing the results to know best steps easily. And pray for Max to be able to handle the 6 hour lay flat time post biopsy with ease before tackling another radiation treatment tomorrow with less nerves. 

Thank you for continuing to pray for Max and our family! We are so grateful for each one of you! 

We love you!

-Amanda & Matt

‭‭Romans‬ ‭12:12‬ ‭

[12] Rejoice in hope, endure in affliction, persevere in prayer.

We are back from our first ambulance trip to get his radiation CT and mask done! Max did great! Thank you Lord!  Biopsy was scheduled for 10:30 but just got pushed.  We don't know when it will be so Max is still NPO with no food or drink.  The Radiation Oncologist said that worse case, they will just hit the tumor on his eye to get him some relief and he will leave the back of the head alone so we could still get a clean biopsy later. 

Please pray the Lord gives us the strength for the rest of the day.  And give us discernment as updates come in from all the procedures today. 

We love you and couldn't do this without you! 

-Amanda & Matt 

"If you suffer with Him, you will reign with Him. If you cry with Him, you will have joy with Him. If you die with Him on the cross of tribulation, you will possess the eternal dwelling place in the splendor of the saints. And your name, written in the book of life, will be glorious among men."

— St. Clare of Assisi

Thanks be to God He has made His presence known again today! It is clear that He is with us and providing Max what he needs. We all got decent sleep last night, enough to handle facing the day of uncertainty. And Our Lord delivered a wonderful day!  We have mentioned we have been able to physically watch Max's eye grow larger by the day. Today, it looks the same size it has been since last night. He has had increased pain today but that can be controlled with some pain meds so it seems we are going to be able to get a biopsy before having to intervene with radiation! Thank you Lord!! Everything that will happen in the next few days is waiting on that biopsy. It will confirm exactly what they are treating and how we need to proceed. 

The optometrist came by and will be coming by daily to check on the function of his eye given the location of the tumor. They want to make sure they can see any issues coming before it gets bad. Right now, his eye function is all good. The tumor is outside the eye itself and only pushing the eye out of alignment, which is why he has the double vision. But the eye function itself is still all good thanks be to God. The radiation oncologist came by to confirm that we will do the radiation simulation tomorrow morning at 8am and he has already scheduled the first radiation treatment at 3pm. They will be fitting the biopsy in as soon as we get back from the simulation before the treatment. Radiation, for those not aware, is highly targeted treatment. It is faster than chemo at killing tumor cells too.  Max will get a CT scan in the morning so the radiation oncologist can come up with a plan on which cells need to be targetted and Max will be fitted with a mask made for his face to wear during treatments to ensure he does not move at all and the radiation hits the bad cells, not any good cells, like his eye. The side effects they are having us plan for is some itchy skin but that is it.

Max is in good spirits and as long as they keep his eye pain under control, he even managed to eat a little breakfast and some dinner, which is more than he's had in a week! 

Our Lord has delivered a team of doctors that have already openly stated they are praying for Max. Our picture of Jesus in our room might have helped :) Thank you Lord for arranging just the right team of people Max needs to move forward. We trust in Your will to deliver us, no matter how it looks from our perspective. We have had the peace without understanding all day and we know it is because of so many moments He weaved into our day to remind us He is here and He is moving. What a blessing! 

Please pray for Max to get some relief from the eye pain and some sleep tonight.  Pray for the tumor to continue to be stable so we can get to 3 pm tomorrow before intervening. Please pray for Max's nerves tomorrow as he rides an ambulance, gets fitted for a mask, goes through a biopsy, and back to the ambulance to start radiation, all in one day.  And please pray for all the  medical staff, that they be guided by the Holy Spirit to do God's will, and nothing more. 

Thank you for your prayers!! We love you and truly couldn't do this without you! 

-Amanda & Matt

‭‭Proverbs‬ ‭3:5‭-‬6‬ ‭

[5] Trust in the Lord with all your heart and lean not on your own understanding; [6] in all your ways submit to Him, and he will make your paths straight.

Thanks be to God for giving us the strength to make it through this day. Matt drove the whole way and got us here safely at 3:30am while Max and Amanda got to nap on the way up. Then we had to hang out in the ER for a few hours, complete a CT scan to be able to compare tumor sizes over the last 3 days.  After we were moved to the oncology floor, Max and Matt were able to get sleep while Amanda handled updates, med changes and rounds. It has been a sprint since 10am and on little sleep for all of us. So thank you Lord for lending us Your strength.  

There are a few issues all the teams are working on. All the teams include oncology, radiation, and liver. Max's liver has been unhappy again for 3 days. The tumors on his head are growing quickly, with more headaches and vision issues popping up each day, and his kidneys are also unhappy. The kidney issues they think is because he is dehydrated so they have started him on fluids to see if that solves the problem. The liver team scheduled an ultrasound at 11 to check on liver function and it all looks great. So the next step in the liver is testing for viruses to see if Max has one that could elevate his liver enzymes. If that doesn't help, we will need to proceed with a liver biopsy but we will deal with that as we need to. For now, things are stable, they will do the blood tests they need and just watch and see what happens over the next few days. The primary focus will be on the tumors on his head. 

First thing they are scheduling is a PET scan. To make sure they get a full look at the body and see every problem area that needs to be addressed. Next, they got the initial blood test results back. It includes the AFP marker, which is Max's cancer marker from last year that was 2.5 million when we started this journey last year. It is <1. Basically zero. Which means whatever is in Max's head is not the liver cancer from last year. This was a surprise. Both the radiation doctor and oncologist were scratching their heads on this, saying Max is very atypical. Thank you Lord!!!  So they trying to schedule a biopsy for the tumor on the back of his head so they know what they are dealing with. It will all come down to scheduling on when all this can fit in and how cooperative the tumor under Max's eye is, if it gives them enough time to have the biopsy before they need to intervene on his eye. 

Now in terms of the tumors, they will do a PET scan to see if there are any more, they will do a biopsy if they have time to do one to see what it is. If the tumor by his eye grows too fast, they will need to intervene quickly with radiation. Radiation had a quicker effect so they could shrink the tumor and alleviate his symptoms but once they start radiation, they cannot do a biopsy because the tissue would be compromised.  If we do go down the path of radiation, Max will need to have 10-14 days of it and see how it goes. So they are preparing all paths of treatment, and we will see what Max's body allows us time for. They can intervene quickly if the tumor gets too close to causing eye damage so it is such a blessing we are already here to make sure they can intervene the minute they need to. 

Thank you for all the prayers. God is already working....Max has never been typical and it seems we are keeping with that trend thanks be to God! Please pray for wisdom for the medical team on coordinating all of these efforts and a treatment plan that will be effective for whatever it is that is in Max's head. Please also pray for strength and peace for Max and Matt and Amanda.

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Ben Sira‬ ‭2:6‭-‬11‬ ‭

[6] Trust in God, and he will help you; make your ways straight and hope in him. [7] You that fear the Lord, wait for his mercy, do not stray lest you fall. [8] You that fear the Lord, trust in him, and your reward will not be lost. [9] You that fear the Lord, hope for good things, for lasting joy and mercy. [10] Consider the generations long past and see: has anyone trusted in the Lord and been disappointed? Has anyone persevered in his fear and been forsaken? has anyone called upon him and been ignored? [11] For the Lord is compassionate and merciful; forgives sins and saves in time of trouble.

Praise God we made it with no incidents and through some snow that slowed us down a bit. Will update when we have a plan!  Please pray for peace....being back at the hospital and tired is making Max anxious.  Please also pray for wisdom for the doctors to treat Max quickly and effectively.  We are watching the tumor near his eye grow in real time and Lord, we need You.

Thank you for continuing to be with us on this journey! We love you! 

-Amanda & Matt 

‭‭Philippians‬ ‭4:7‬ ‭

[7] Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.

Praise the Lord what a send-off He sent us today! Just as last time, we were blessed with a special healing Mass for Max full of our friends and family and prayer warriors in the area and we will be smiling for days from the love that was there. What a blessing. Thanks be to God! 

Max's blood work did not improve. And actually, he started going downhill, throwing up twice this morning and complaining of a constant headache. He slept most of the day after we got home from Mass and healing service so we made the decision to go now rather than wait until tomorrow. Matt ran to the pharmacy to grab another steroid to help with inflammation so Max could get some relief from the headache. Then we packed and are on the road. Both Matt and Amanda are driving up now, with Max, and Cincinnati Children's is ready for us. We are to go directly to the ER and check in when we get in and they will admit Max right away. We don't know much else except that a lot of things are happening quickly in the background, as Matt and Amanda keep getting phone calls from various departments we have yet to work with, like the neurosurgeon.

Please pray for safe passage to Cincinnati for us tonight. Pray for healing and comfort for Max. Pray for peace and strength for Matt and Amanda. And pray for peace and comfort for Aurora, Anna, and Memphis who are upset about being left at home and not getting to go to OH this time. 

We love you and truly couldn't do this without you! 

-Amanda & Matt

 ‭‭Psalms‬ ‭46:11‬ ‭

[11] “Be still and know that I am God! I am exalted among the nations, exalted on the earth.”

All glory to God for still making His presence known to us. He is reminding us constantly that He is in control and He's got this. We lean into Him. 

MRI was finally completed at 1pm this afternoon. We spoke to the doctor around 3 with not good news. There are 4 tumors in Max's head, one by his eye that we saw and that brought us in, two in the back of his head, and one behind his nose at the base of his brain. The doctor here is assuming it is the cancer that has returned given that there were no signs of this even a month ago and the type of cancer Max had was very aggressive. Although the tumors are pushing on the brain and eye, it is not yet an emergency situation as it is not affecting function yet so he opted to send us home for the night. We will have to return in the morning for blood work to check on other issues. His kidneys are going downhill and his hemoglobin is as well. The guess is that the anti rejection med level is too high but we won't know that until tomorrow morning. Next steps after tomorrow include followup blood work Monday and a PET scan Wednesday to see if the cancer is anywhere else. Then we will be heading to Cincinnati. Any treatment options that could be attempted would have to be up there. 

Please pray for peace. Max is very tired after the last 24 hours and the prospect of going back up to Cincinnati for longer than a few days is daunting. But our family will do whatever God is asking of us. So please Father, if you are willing, take this cup from us. Still, not my will but yours be done. 

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Luke‬ ‭22:42‬ ‭

[42] saying, “Father, if you are willing, take this cup away from me; still, not my will but yours be done.” 

Thanks be to God for granting us a renewed perspective. He knew we would need a reminder! He has asked Max to once again to be brave and step up and Max is doing it so well. Amanda emailed our Columbia doctor this morning to double check on Max's bump and he agreed that something seemed off and preferred we came into the ER to get a CT scan. CT scan results showed 2 masses in his head. One by his eye and one on the back of his head. We do not know what the masses are yet but the assumption is that the cancer has returned. Max is admitted to Prisma Children's tonight and will be getting an MRI done and potentially a PET scan.  Tomorrow, Prisma and Cincinnati will figure out a plan.  Max is in God's hands and has already been at peace the whole day, even through the ER visit, which is a miracle itself given last time we were waiting in the ER, he didn't leave for 3 weeks! Praise the Lord Max doesn't seem to even think about that. He's just ready to get more pictures taken and get out of here. But he has reminded me a few times already that God is in control so everything is fine. If nothing else, an 8 year old having the grace to learn that lesson is worth all the prayers. What a blessing within the chaos. 

Please pray for Max to keep the peace our Lord is giving him. Pray for Amanda and Matt to also have peace as they prepare for whatever God's will is next. And pray for Aurora, Anna and Memphis, that they may continue to be resilient while Max's needs take priority again. 

We know all things work for good for those that love the Lord and do His will. We trust in Him to lead us through this as He has every other trial. And what an amazing group of prayer warriors He has lined up for us after the last year of our lives! 

We love you all!

-Amanda & Matt

 ‭‭Proverbs‬ ‭3:5‭-‬6‬ ‭

[5] Trust in the Lord with all your heart and lean not on your own understanding; [6] in all your ways submit to him, and he will make your paths straight.

All glory to God!!  We have no idea how we got here....but with God's grace, we did.  We still regularly look at each other and ask if the last year has happened.  Sometimes, it almost seems as though we were transported back to over a year ago and we are just going about daily life.  But yet....everything has changed.  Things in life that so keep us busy and occupied all of a sudden don't seem as important anymore.   Normal events, like the changing of seasons, seem that much more joyful and awe-inspiring.  Our perspective has completely changed.  Thanks be to God!  It seems He used this past year to re-orient us to what is truly important.  May we always remember this important lesson.  The world can so easily pull us away from what matters to what is important right now.  In the absence of viewing our lives through the lens of eternity, insignificant annoyances can be devastating, let alone difficult trials.  Lord, help us to remember to view things as You do.  Through the lens of eternity. So that we may always have the proper perspective on what is important and spend our time on what matters for eternity!  

Max's liver has finally started to behave.  The last blood work we had last week post surgery showed it trending back down to normal levels.  Thanks be to God!  Max figured out that his port removal was actually the 7th surgery.  God's perfect number of completion.  His first surgery was to put his port in to get ready for chemo to treat liver cancer....and number 7 was to remove the port to signify the end of cancer treatment.  What a blessing.  God continues to show us He is with Max and we continue to praise Him for it!  As we continue down the path of transplant maintenance, let us remember that no matter what may come, He is here and intervening when necessary to ensure His will is accomplished!  And may we continue to say yes to His plan, no matter how difficult it seems, because His plan is always the best plan.  How can it not be when we have such a loving Father orchestrating everything for us to be able to join Him for eternity!  

We do have a few prayer requests.  Max is so back to normal he had too much fun on his bike and crashed it, bumping his head and giving him a nice goose egg.  Only because of the last year's events do we worry....but he is acting normal and his blood work is normal so we are praying for it to heal and everything to be well.  His medications are making the healing process hard though so we pray Our Lord intervenes and heals Max.  He has blood work on Monday before Thanksgiving.  Last year, the Sunday before thanksgiving Max went into the hospital and didn't leave for 3 weeks.  Please keep him and all of us in your prayers to give us peace as we venture into the hospital for a routine visit and health check Monday.  And please pray the doctors are given the wisdom to know when to change Max's medication doses as we start venturing down the path of removing medicines he has been on for the past 6 months.  Steroids should finally be weaned next week as well.  Lord, we place Max's life in Your hands.  Thy will be done.  

Thank you so much for sticking with us for the year.  What a blessing each and every one of you has been.  We will never be able to repay all the prayers, kindness, cards, gifts, donations, meals, and babysitting but please be assured, if anything is needed in your life, reach out.  We would love to help and return the kindness you gave us in our family's time of need.  We love you and truly could not have done this without you!  

Please enjoy this photo....an early Christmas picture taken by Amanda a week ago that perfectly captures our family's current joy :) 

-Amanda & Matt

"Blessed is the crisis that made you grow, the fall that made you gaze up to Heaven, the problem that made you look for God!"

-Saint Padre Pio

Thanks be to God!! He has delivered us an easy day and a day to rejoice that Max no longer had a port! What a celebration as we near our one year anniversary. Today, we rest up and Wednesday, we see how his liver is doing. Thank you for the prayers! Continued prayers today for his pain to be tolerable, as Tylenol isn’t good for his new liver yet and motrin shouldn’t be used with his high platelet counts, so he will be tough for the day! God, grant him the strength to make it through the day with minimal discomfort. 

We love you and couldn’t do this without you! 

-Amanda & Matt

“Praise the Lord, for the Lord is good! Sing to his name, for it brings joy!”

‭‭Psalms‬ ‭135‬:‭3‬ 

Blessed be God! He has given us such reprieve the last few weeks that we have been able to enjoy all the October festivities like normal!! What a blessing!! We are so grateful for every day we have a chance to just focus on school, or friends, or chores, or building trails in the backyard :) all are signs everything is OK and we are all healthy and together. Thanks be to God! 

Tomorrow, Max gets one more step away from the last year of our lives....hard to believe it has almost been a year! Tomorrow morning at 5:30am, we will report to Prisma Children's in Columbia to go into surgery for his port to be removed. Surgery should be around 7:30am. He is a more complicated case, as the surgeons put it, since he is a transplant patient and had quite a bit of medication, so they are fitting him in first so he gets full attention and as much time as necessary to remove his port. This is a great sign that chemo is far enough away and they feel comfortable in allowing Max to remove it! We humbly ask for prayers for the surgeons and staff to be guided by the hand of God and for Max to be given peace before and during surgery. We look forward to one less complication when the port is removed! Max will be discharged and coming back home after surgery, which he is excited about too. We see the surgery as a minor inconvenience to look towards the future of as normal of a Max as we can get, so he can be a living, breathing display of Our Lord and what He can do with our surrender in every part of our lives! 

Thank you for your constant support and prayers for our family!! We could not do this without you! 

We love you! 

-Amanda & Matt

‭‭2 Corinthians‬ ‭4:16‬ ‭

[16] That is why we never give up. Though our bodies are dying, our spirits are being renewed every day.[16] Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. [17] For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, [18] while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

Praise the Lord Max made it safely back home! And they are giving him a break from blood work by not making him go in this week so he gets to jump right back into normal thanks be to God! Thank you for all the prayers! It's a miracle Max is home with a healthy liver after it was bad enough mid week last week to need to drive to OH for a biopsy :) 

We love you! 

-Amanda & Matt

‭‭Psalms‬ ‭146:1‬ 

[1] Praise the Lord! Praise the Lord, O my soul!

Praise the Lord they are on the way home! The hospital gave Max the IV steroids first thing this morning and immediately discharged him so they could get on the road! They will be home tonight around 8. Please pray for a safe trip back home with us. Also pray for Max to have peace...the extra steroids are already taking their toll and he is struggling to manage the emotions that come with it. We pray being back home will help him adjust better to the difference in medications. 

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Jeremiah‬ ‭29:11‬ ‭

[11] For I know the plans that I have for you,’ declares the Lord, ‘plans for prosperity and not for disaster, to give you a future and a hope.

All glory to God for delivering Max out of surgery and having no complications!  He is back to normal energy levels, asking why he's there :) The initial result this morning showed no rejection but they weren't sure what the issue was then, so they were going to sync up and come up with a plan. Then by later this evening, the plan became giving Max IV steroids today/ tomorrow/ Sunday morning then send him home. There is not rejection, but Max's liver is unhappy. And unfortunately, they don't know why. So they are opting to give Max the steroid the next few days to fix the liver inflammation and be able to start over with a different med plan and see how it goes. The doctor mentioned this morning that Max is not following the normal transplant patient protocol...I think we can all guess why that is :) but it looks as though Our Lord is keeping the secret of what's plaguing Max's liver to Himself at the moment.  We will learn the reason in His time, not ours. So we trust and wait. And pray they are able to stabilize Max's new liver soon.

Please pray for peace and strength to persevere for Max. And for his liver to respond to the steroids as they expect, to help it calm down. And please pray for a safe drive back home, God willing, on Sunday. 

We love you and truly couldn't do this without you! 

-Amanda & Matt

‭‭Isaiah‬ ‭55:8‭-‬9‬ 

[8] “For My thoughts are not your thoughts, Nor are your ways My ways,” declares the Lord. [9] “For as the heavens are higher than the earth, So are My ways higher than your ways And My thoughts than your thoughts.

Thanks be to God all went well and Max is out is surgery and awake and settled into his regular hospital room! Thank you prayer warriors!! Now we wait....Max will stay the night and God willing, we will know tomorrow what the issue and the plan is! 

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Psalms‬ ‭27:14

[14] Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.

Thanks be to God for the good trip and for fitting us in around lunchtime. Max is on liquid only diet until 10:30, then nothing. Reporting to the surgery center at main campus at Cincinnati Children's at 12pm. 

Please pray for peace for Max for the day, that the surgeon is guided by God's own hand, surgery has no complications, and the doctors are guided by the Holy Spirit for an easy solution to whatever is plaguing Max's liver. In Jesus' name, Amen! 

-Amanda & Matt

Psalms 46:11

[11] “Be still and know that I am God! I am exalted among the nations, exalted on the earth."

All glory to God and His angels for getting Matt and Max up to OH with no issues! There was quite a lot of traffic but no incidents thanks be to God! 

Now we wait. Max is to be NPO starting at midnight and the surgery team will call first thing to let them know what time to check in. Thy will be done Lord.

-Amanda & Matt 

‭‭Proverbs‬ ‭3:5‭-‬6‬ ‭

[5] Trust in the Lord with all your heart and lean not on your own understanding; [6] in all your ways submit to him, and he will make your paths straight.

Thanks be to God for making the plan obvious. Our transplant doctor agreed a biopsy is required. They do not have room in the schedule to place Max however so they are fitting him in some time on Thursday. What an opportunity Our Lord is giving us to learn to give up control and planning. We will get a phone call Thursday morning to tell us what time to show up at the hospital.  

Please pray for safe travels for Matt and Max driving up to OH tomorrow. Also pray for the doctors to be guided with the biopsy results on what is causing the issue and how to effectively treat Max. 

Thank you for sticking with us so far. We are so blessed to be a part of such a wonderful family of God that lifts us up when we most need it. Thank you Lord for ensuring we never have to face things alone! Not only are You here Lord but You send many children of God to assist us when we need it as well. 

We love you! 

-Amanda & Matt

‭‭1 Peter‬ ‭4:12‭-‬13‬ ‭

[12] Beloved, do not be surprised that a trial by fire is occurring among you, as if something strange were happening to you. [13] But rejoice to the extent that you share in the sufferings of Christ, so that when his glory is revealed you may also rejoice exultantly.

All glory to God to give us periods of rest between chaos. It was a wonderful few weeks of "normal" and after the past year (few years really), we appreciate the normal so much!  But God is calling us again and we will respond according to His will. For as Paul reminds us, when we are weak we are strong! Max's liver numbers spiked up in the complete wrong direction.  Something is wrong. So we are mentally preparing for a trip to Cindy this week for a biopsy. We will hear the plan when Children's starts booking things, like the biopsy. It will require at least one overnight stay post biopsy. And if it is rejection again (Max is still on the steroids), they will keep him for a week just as last time. 

We pray for peace. And for the strength to persevere.  And as Jesus taught us in the garden, God, not our will but Yours be done. 

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Philippians‬ ‭4:6‭-‬7‬ ‭NABRE‬‬

[6] Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. [7] Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.

Thanks be to God it has been a quiet few weeks! How it is already October, we have no idea.  We get so excited to be able to just slip into "normal" or as normal as we can get anyway, that our days fill up with school, friends, activities, and doctors visits become just another activity on our calendar. What a blessing! Max is still on the steroid from the rejection episode a month ago, but they are slowly weaning him off of that. His liver has been unhappy the past few weeks though, so we have been scratching our heads trying to figure out why the AST and ALT keep going up. Last week, we got an answer as Max was positive for CMV virus! It seems like a bad thing but when we are talking about liver transplant patients, it is a great thing because it is treatable with medicine, and the last time this happened and Max had CMV, his liver improved within a few days. We were praying for the same result but it seems there is something else that may be going on as well. Instead of starting to decrease, Max's liver numbers increased again this week. Cincinnati called us yesterday to let us know they were giving Max's liver until Monday to correct itself. If that didn't happen, we would need to come up and do a biopsy and figure out what the issue is. So prayer warriors, you know what to do!

We humbly ask for prayers for Max's liver numbers to decrease, for his new liver to adjust properly to his body, and for doctors to be given the wisdom to know how to treat Max most  effectively, if something is in fact wrong. 

Thank you for sticking with us so long and for all of you that reached out to us the past few weeks about news! We appreciate you so much more than you know....and thank you for giving us patience and grace if you see our crazy crew out and about!  We love you all and we truly couldn't do this without you. 

-Amanda & Matt

"Consider it all joy, my brothers and sisters, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."

‭‭James‬ ‭1:2‭-‬4‬ ‭

All glory to God!! He has granted us good news to share that Max is still cancer free! Hallelujah! What a blessing it is to share with our wonderful prayer warriors. 

The only small thing that was different on these scans was the pancreas being atrophic. Our oncologist this morning said she is not concerned at all. They see this fairly often in chemo patients. But they will order an additional test just to get a baseline for his pancreas and continue to monitor it. But she made it apparent that we would know if Max's pancreas had issues. We are so grateful that was the news. Yesterday's appointments included a hearing test, where Max is about the same so no concerns there. And a follow-up with the transplant team. There was a lot of conversation around rejection and what happened and it really is a matter of them learning Max's body and how he reacts to medication. They increased his tacro and sirilimus anti-rejection meds again to make sure his target range is a little higher since he has had rejection. And we will watch his numbers on Monday. Since he is back on the steroid, they mentioned that he will wean off of it faster than post surgery but slower than usual to avoid another episode of rejection so pending Mondays bloodwork, he will wean starting next week over 5-6 weeks. It is in God's hands and we thank Him for the opportunity to practice more patience and trust Him and His plan. He has never left us and we don't expect Him to now! 

Thank you for all the prayers the last few days! They have given us peace and joy in the midst of what could have been a stressful time. We made it safely and even had a pretty fun, not crowded stop at a park for the kids to run off energy on the way up, a one bedroom suite at Ronald McDonald house, which made the stay so much easier with 6! And getting to see some familiar faces made this the "vacation" we were hoping it would....so Cincinnati trips don't turn into depressing trips for Max because they are only associated with hospital stays. Such blessings!! Thank you Jesus!! 

We love you and couldn't do this without you! 

-Amanda & Matt

‭‭Jeremiah‬ ‭29:11‬ ‭

[11] For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

[11] For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Blessed be God we made it a few weeks before any major issues surfaced! Max is back in the swing of things and all the kids are finishing up the last of their school work before we dive into the new year. His blood work has shown some chaos the last week, but we already had his 3 month check-up and scans scheduled for September 9/10 so we head up to OH tomorrow for a few days. Prayers appreciated for safe travels for Amanda and the kids that will all join Max in making the trip this time! Max will have blood work Monday morning, MRI and CT scans Monday evening. And we have appointments with liver and oncology teams, as well as a hearing checkup. It will be a busy few days!   We thank you for the continued prayers and support you continue to give us each day. What a blessing it is to be in this body of Christ together, persevering to make it to the end to joy! We hope God blesses you and your families! We love you! 

-Amanda & Matt 

"We must often draw the comparison between time and eternity. This is the remedy of all our troubles. How small will the present moment appear when we enter that great ocean."

- Saint Elizabeth Ann Seaton

They made it!  Thank you Lord and thank you prayer warriors!  

-Amanda & Matt

“I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.”

‭‭Psalms‬ ‭9‬:‭1‬

Max is on his way home thanks be to God!! His liver continues to be happy, with all of his numbers almost back in normal ranges and trending in the right direction. He’ll spend the weekend relaxing and go back on Monday for lab work to make sure all is still good. 

Thank you prayer warriors for getting us here! All glory and praise to Our Lord! 

Prayers for safe travels for Matt and Max and also for Grandma and Grandpa who ran down to see them before they came home! 

We love you! 

-Amanda & Matt

“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.”

‭‭Romans‬ ‭5‬:‭3‬-‭5‬

All glory to God Max’s liver is finally happy again! The doctors received the final biopsy results that did in fact confirm it was mild rejection so the course of action they took starting Saturday was exactly what Max needed. He received high dose steroids via IV twice a day through today and God-willing, tomorrow he will be discharged to come home! His liver numbers, like ALT, AST, and GGT, are all almost back in normal ranges, having started their downtrend on Tuesday. He will come home on the oral steroid, just like post surgery. And we will have the same plan of weaning him off of it, although he will be weaned slower since last time was too soon for his body to adjust to the new liver. 

We appreciate the prayers up until now! Physically, Max is doing great! Mentally, he is struggling. Being up in the hospital and those steroids are rough on most people and Max is no exception with the anger and the mood swings that accompany it. We would love some prayers for his mental health, that Our Lord limits the side effects of the steroids so Max can come home to peace and calm and enjoy being back in his environment without the added stress of the medicine changes. And please pray he is still released tomorrow and for safe travels back to South Carolina 🙏 

Thank you prayer warriors for seeing us through the last 2 weeks! We truly couldn’t do this without you! We love you! 

-Amanda & Matt

P.S. we have heard that some folks have not been getting email updates, which makes it easier to hear if something happens! There is a “Follow” button under the updates where you can enter your email and every time we post, you will receive an email notifying you!  It is free to do this so feel free if you would rather get emails than manually check the website. Thank you!! 

“We know that all things work for good for those who love God, who are called according to his purpose.”

‭‭Romans‬ ‭8‬:‭28‬ ‭

Blessed be the name of the Lord!  No matter what happens, we know He is in control and all things work for good for those that love Him and do His will. So we  continue to trust. As much as we didn’t want to hear today’s news, our Lord was not surprised and His providence will prevail. So we take a deep breath….and trust. And hope in Him that He will see us through and Max will be ok. 

Rejection is a scary word when it comes to transplant. For a vast majority of the time, rejection does NOT mean a new liver is required. It just means that Max’s immune system has woken up to the fact that the liver is not his DNA and of his body and as it is designed to do, starts attacking the liver. It is a mild case of rejection so we caught it early. All that occurs is that the doctors suppress his immune system, calm it down with steroids, then send him back home with those steroids that we’ll work on weaning him off of again as before, although probably a little slower than last time. Max will have to be there until Friday. Our Lord always provides blessings during trials though and our favorite doctor is on the floor this week. She always looks out for Max and has assured him that he will not be stuck in the room and have plenty of day passes to get out and have fun while being there this week so he’s getting a list together already on what he wants to see while he’s back in town. She is good at cheering him up. Max is doing ok considering he’ll be in the hospital for a week, which is expected. His first words when he woke up from anesthesia were “I hate the hospital” and we cannot blame him. But, God willing, the doctors enthusiasm at making this a “fun” week, or as fun as it can be, most certainly will help. 

Thank you for the prayers and support! We are so blessed to have all of our prayer warriors with Max and all of us. We know that Our Lord is with Max and us so we patiently wait for His plan to unfold, trusting there is a reason this is in the plan. Please continue to pray for peace for Max while he gets back on the steroid and deals with the hospital for a few extra days. And please pray for limited side effects this time around….steroids are rough on most people and Max is no exception. We love you and couldn’t do this without you! 

-Amanda & Matt

“We must often feel weary and tired yet God brings us through all these things.” - Saint Mary MacKillop

All went well thanks be to God!! Thank you for the prayers! We’ll post another update later when we know more info. Preliminary results should be in by tomorrow, final results take a week. 

Lord, please be with us while we patiently wait for our next step. Give us wisdom to know the right decision for the updates that will be coming to us over the next several days. In Your name, Amen 🙏 

We love you! 

-Amanda & Matt

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.”

‭‭Hebrews‬ ‭10‬:‭36‬ ‭

Thanks be to God for giving Max such peace the last 24 hours. Max has been happy and positive, despite getting limited sleep and being back in Cincinnati reporting to the hospital. He has been fasting since late last night except for a few of his meds this morning so he is ready to go.  Please pray for a successful biopsy with no side effects and no issues with anesthesia for Max and that it gives doctors the answers they need to decide what the next steps will be to getting Max better and back home. 🙏 

Thank you for continuing to be there with us! We love you and couldn’t do this without you!! 

-Amanda & Matt

“Remember the things I have done in the past. For I alone am God! I am God, and there is none like me.”

‭‭Isaiah‬ ‭46‬:‭9‬

Thanks be to God for seeing Matt and Max safely to Ohio. They will be reporting to the hospital at 9am for an 11am biopsy.  We appreciate the continued prayers for a successful biopsy and an answer as to what is plaguing Max’s liver 🙏

We love you! 

-Amanda & Matt

“You see evil growing instead of weakening? Do not worry. Close your eyes and say to me with faith: “Thy will be done, You take care of it.” I say to you that I will take care of it, and that I will intervene as does a doctor and I will accomplish miracles when they are needed. Do you see that the sick person is getting worse? Do not be upset, but close your eyes and say, “You take care of it.” I say to you that I will take care of it, and that there is no medicine more powerful than my loving intervention. By my love, I promise this to you.”

- Jesus Christ through the Surrender Novena

O Jesus, I surrender myself to you, take care of everything! 

Thy will be done 🙏 and at times, it is hard to see which path is His will. But today, He took the guesswork out of it for us. Max’s liver numbers spiked so much that there is no doubt something is wrong and we need to go to Cincinnati to figure out what it is. So tomorrow we head north for the biopsy planned Friday and trust He is with us and will intervene when needed. If this does turn out to be a case of rejection, Max will be admitted to the hospital for a week and be given some high dose steroid to calm his immune system down and he’ll be back on steroids we’ll have to wean him from slowly again once the team feels it is safe to do so. We ask for prayers of safe passage to Ohio tomorrow and for it to be obvious to the team in Cincinnati what the issue is so it can be fixed. Thank you for the prayers!! They continue to sustain us and give us peace in what would be one of the most stressful times. We love you! 

-Amanda & Matt

“For you have been given not only the privilege of trusting in Christ but also the privilege of suffering for Him. We are all in this struggle together. You have seen my struggle in the past and you know that I am still in the midst of it.”

-Philippians 1:29-30

Thanks be to God He gave us peace today. And thanks to all of our prayer warriors for interceding on our behalf!  He heard us and granted us a peace that can only come from Him when Max faces the prospect of another surgery (although small) to have a biopsy in Cincinnati on Friday.   Right now, the biopsy is scheduled for Friday morning at 11am.  Max will have to be at Children’s at 9am to ensure enough time to work with anesthesia and the surgeon before 11am start time. His liver team up there agreed to let us do one more round of bloodwork tomorrow (Wednesday) morning to collect some pre-op info and make sure his liver doesn’t recover enough to avoid us driving up there. We pray for His will to be done and for peace in whatever path Max needs to be on 🙏 ideally, his liver starts cooperating! But if there is an issue, we would rather have it fixed so we can move closer and closer to our new normal. Lord, see us through the next few days with as much grace as we need to handle the path Max will be on.  We will update everyone tomorrow once we hear back on bloodwork on what the final plan is. 

Thank you for continuing to be with us on our journey! We couldn’t do this without you!  We love you!  

-Amanda & Matt

As iron is fashioned by fire and on the anvil, so in the fire of suffering and under the weight of trials, our souls receive that form which our Lord desires them to have.

-St. Madeline Sophie Barat

Blessed be God forever! We may not know the plan….but we know He is with us through it all. It is an opportunity to lean in and trust in Him. Max’s liver is still unhappy. His AST and ALT both increased, the opposite direction we need them to go. Last week, Cincinnati warned us this would mean a trip up there for a biopsy to see what the issue is. We have not yet heard the plan to know if that is still what is needed. Please pray for patience and peace while we wait to see the Lord’s plan for Max in this next step 🙏 

We love you! 

-Amanda & Matt

“The righteous cry out, the Lord hears and he rescues them from all their afflictions.”

‭‭Psalms‬ ‭34‬:‭18‬ 

Blessed be God forever! We may not know the plan….but we know He is with us through it all. It is an opportunity to lean in and trust in Him. Max’s liver is still unhappy. His AST and ALT both increased, the opposite direction we need them to go. Last week, Cincinnati warned us this would mean a trip up there for a biopsy to see what the issue is. We have not yet heard the plan to know if that is still what is needed. Please pray for patience and peace while we wait to see the Lord’s plan for Max in this next step 🙏 

We love you! 

-Amanda & Matt

“The righteous cry out, the Lord hears and he rescues them from all their afflictions.”

‭‭Psalms‬ ‭34‬:‭18‬ 

Blessed be God forever! Max's blood transfusion was canceled since his blood work was right in line with where it was last week! Even the lab tech commented that if she could have taken labs yesterday, we could have avoided a trip today. But its His plan and we are sure there is a reason.  Max's liver numbers, however, are still elevated, meaning his liver is angry about something. After chatting with the Cincinnati team, it appears they are giving his liver one more week to adjust to the lack of steroids (it started increasing once he was weaned from them). If by next Monday, his numbers go up again, we will have to head to OH for a biopsy to see what the issue is. We continue to ask for your prayers.  Prayers for perseverance and peace as we patiently wait for results and His plan to unfold. 

 Thank you for the continued prayers and support! We love you! 

-Amanda & Matt

‭‭Psalms‬ ‭27:14‬ ‭

[14] Wait for the Lord, take courage; be stouthearted, wait for the Lord!

Blessed be God forever!! He has brought Max home and our family back together and for a few weeks, we had the opportunity to find our new normal. So normal that it included signing the girls up for dance and potty training a 3 year old! (Pray for us it's still ongoing lol)  Max was able to get weaned off steroids 2 weeks ago and we finally got to see a glimpse of the Max from last summer after making it through the withdrawals a few days ago...he was patient, kind, helpful, and genuinely happy to be back in the chaos and adjusted to doing his thing in midst of the noise. What a blessing. It has been bumpy getting back into routine but our family lived two different lives for 5 months so we're expecting 5 months to get back in the swing of things. Lord willing, maybe it won't take that long. But the important thing is we've been able to spend the time trying. 

We have been blessed to really just go in for blood work and appointments on Monday mornings and spend the rest of our week getting into our routine. Today, we were reminded that Max still has medical needs....and that we are not out of the woods yet with issues. But we always say this when last minute changes happen that throw off the day. God is up to something....He is intervening. So we trust and wait and see. Max went in for normal blood work today and for the first time, we were told we couldn't get blood work at the lab but instead had to go to oncology to get his port accessed and blood taken out there.  His port has to be accessed every month and it had been over a month since the last time. The only issue is that oncology doesn't open until 8:30, which is Max's med time. The lab tech said oncology refused to allow them to do the labs so we had no choice but to go across the hall and wait. As a result, Max was 45 minutes late on blood work and his meds. The last time this happened, his blood work was all off before discharging us from Ohio and it was a mad scramble to get labs done the next day to make sure Max was good. Today was the same....all his numbers were so off they have him scheduled for a blood transfusion in the morning. We got them to agree to do lab work again and wait for results before proceeding. And we had a conversation to remind them the importance of transplant meds being on time and we have to go to labs to get it done so it is on time going forward. But we will see what tomorrow morning's numbers show. 

We appreciate the prayers we continue to receive! They got us weeks of peace at home where we almost could forget the last 9 months of our lives. But we humbly ask for continued prayers. That Max's liver calms down and does its job and that Max is spared of any illnesses and he continues to  improve. God is still with Max so we trust and wait and watch His plan unfold. 

Thank you for supporting our family through the last 9 months! It has been such a blessing to see our prayer warriors and know you're all still with us after all this time. We love you!

-Amanda & Matt

[12] God blesses those who patiently endure testing and temptation. Afterward they will receive the crown of life that God has promised to those who love him.

-‭‭James‬ ‭1:12‬ ‭

Praise Jesus!! Max's trip to Ohio is over and was uneventful!  What a blessing. Matt took Max up yesterday and stayed the night and woke up nice and early to be getting blood work at 7:45am this morning. Everything looked great, minus magnesium and phosphorus... But it seems Dr Taylor finally trusts us to fix things through Max's diet so she reminded them of the list of foods to eat and said she didn't have any concerns! Max gets to move his steroid to every other day now! We're to watch for nausea and unusual sweating that could indicate an issue with weaning him but otherwise, there were no concerns! They also moved the anti viral he was on from the last hospital visit down to once a day. Dr Taylor is also waiting for the ultrasound results and a discussion with the surgeons to make a decision on keeping Max on aspirin. Since his spleen is missing, his platelets are up, so that increases his risk of blood clots so they are being extra cautious in removing the aspirin to not cause any clotting issues. We pray for God's will to be done....He has been with Max the whole time and will continue to be so we trust in Him to guide the doctors on the right decision. 

Now, we get to focus on weekly blood work Mondays at home and enjoy being in SC until September 10th, our next followup in Ohio along with scans!  We pray Max is kept safe from illnesses and that his liver continues to be happy. 

Thank you for the prayers and support, even now, as we transition to a maintenance phase. What a blessing we are here. Max is here. And thriving. Thank you Lord for the opportunity to continue to guide Max to You. Help us all to see You in our daily lives and see Your love everywhere so we all know where to turn, in good times and harder times. And let all be for Your glory Lord! In Jesus' name, Amen. 

We love you! 

-Amanda & Matt

‭‭1 Chronicles‬ ‭16:34‬ ‭

[34] Give thanks to the Lord, who is good, whose love endures forever;

P.S. please enjoy this photo of our whole family together at our home church in Camden, SC!  Thank you to our church family who helped welcome Max home!   

All glory to God for bringing us back here. Mostly in one piece. But all together absolutely!! We weren't sure we would see this day.....and honestly never thought far enough ahead to even imagine what it would be like. We have been trained so well to focus on today that all of a sudden, we look up and we're home. And if you don't pay attention to Max's bald head, you would have thought we transported back to last summer or fall. A completely different time before all this happened. And then everything changed.  It is a good lesson most of us try to avoid...appreciate what you have today because you just never know what tomorrow will bring. Hold those babies and grand babies tighter and thank God for giving you such blessings.  So we continue to thank God for giving us more time with Max...and pray He helps us guide him. 

 The kids are loving being home. Each was occupied playing with their own toys for at least the first 2 days. Even Aurora, Anna and Memphis haven't been home in a month. We haven't even started unpacking all the totes from RMH yet because we're enjoying being home too much. Max slid right back into normal... Building Lego's on our dining room table or playing with letters at the kitchen counter. Running around the yard for about 5 minutes before declaring it too hot to be outside (we agree....being in Ohio means we are not used to South Carolina summers anymore).  A new normal will take a lot of time....Max just isn't used to his siblings being around all the time and they aren't used to the dynamic of having him back. It will be an adjustment. But at the same time, everything is different. Max has patience he never had before...so do we all. We just pray for the grace to continue getting accustomed to being a family again and that this makes us stronger. 

Max's blood work is back in normal ranges, which is wonderful after our chaos last week in getting out of there! We already had our first appointment with Dr Cramer, who couldn't believe how great Max looked! He's working with Cincinnati on managing Max's transplant care along with followups for oncology. Max's AFP tumor marker is nonexistent, so his cancer is gone. Dr. Cramer warned us as the months go to expect some anxiety when we test for that marker or get scans done every 3 months... But we know who is in charge and it certainly isn't us. We just keep saying yes. So Thy will be done Lord and thank You for the opportunity of another day with Max.  

Max will head into Prisma on Friday to get a dose of antibiotics that has been a monthly occurrence since chemo. And Monday, he and Matt have to go back to Cincinnati for one night. Dr Taylor is ordering an ultrasound to check on his liver and make sure there are no concerns for potential blood clots so they can see about taking Max off baby aspirin. Max only has one more week of steroids before he is weaned off of those and a lot of his medicine will fall off the schedule just because of that milestone!  After next week, we will go back to meeting with Dr Cramer and getting blood work weekly until September 10th, the next time we need to be in Cincinnati! We did talk about protocol for Max getting sick...which is a hospital stay for 48 hours and 2 antibiotics. And if his liver starts showing signs of stress, we would likely travel up to Cincinnati for biopsy and treatment. But if his liver keeps behaving, we'll have a nice break at  home! 

Thank you for the prayers and support that got us to this moment! What a blessing our community has been. We truly couldn't have done this without you!  We love you! 

-Amanda & Matt

[13] "May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit."

‭‭Romans‬ ‭15:13‬ ‭

Thanks be to God we are enjoying our freedom from Ronald McDonald House today as all the Stephen kids are reunited! We drive tomorrow to be reunited with Dad at home! Prayers appreciated for a safe last trip before we are finally home.  We hope you enjoy the day with your family and pray that our nation under God remembers that our independence is only from tyranny and dictators in this world. We are  dependent on God, Our Father, and let us make Him the center of our lives again. 

We love you! 

-Amanda & Matt

"Our Declaration of Independence affirms that liberty is an ‘unalienable’ right, because a gift of the Creator. In other words, it makes us independent of tyrannies and dictators by making a Declaration of Dependence on God...We are independent of dictators because we are de­pendent on God. God is the necessary factor of our salvation. As a result, he is to be the center of our lives. His ways ought to permeate every aspect and area of our lives: education, employment, pleasure, mourning, socializing, etc. All is done in sight of the omnipotent Lord, and all we do should be done reflecting this knowledge. Our every interaction should be filled with the love of our Savior."

-Venerable Archbishop Fulton Sheen

After an eventful 24 hours with extra blood work this  morning, we have been released and are heading to PA to be reunited with Aurora, Anna, and Memphis! After almost 5 months and we are moved out of RMH. It only took 2 cars to get everything out!  Thanks be to God!! And thank you for the prayers!!

-Amanda & Matt

‭‭Psalms‬ ‭9:1‬ ‭NLT‬‬

[1] I will praise you, Lord, with all my heart;I will tell of all the marvelous things you have done.

All glory to God for another quiet few days! Max did great with the scans! There was a moment when the nurse tried to get him to change into scrubs because they feared his clothes would interfere with the MRI, which Max hates because they are itchy. Totally get that....but once it was explained and his shirt was examined to see it was cotton, they allowed him  to keep his shirt on and only wear the scrubs pants. A win for both Max and the nurse I think!  We were done by 5pm and Max was excited to finally eat. We have not had a phone call yet regarding the scans but the notes online look good so we'll say no news is good news at this point in our journey!

Right now, we have blood work on Monday and our last doctor appointment for the month on Tuesday where we should be given the go ahead to go home! Matt is coming up this weekend to move Max and Amanda out during his days off and head back home. Max and Amanda will head north to Erie once released to grab Aurora, Anna, and Memphis hanging out with family up there and head home on Friday the 5th! Prayers appreciated that all the travel over the next week to get us moved out of Ronald McDonald and all of our family back together at home under one roof goes well and God is with us.  God willing, this will be over and we'll be celebrating another milestone next week with all of our prayer warriors that Max is finally home after almost 5 months away! 

Thank you for the prayers and support during this whole thing. I know its said often but we truly couldn't have done this without all the prayers! God is with Max and we couldn't be more grateful you are too! We love you!

-Amanda & Matt

[13] But we ought to give thanks to God for you always, brothers loved by the Lord, because God chose you as the firstfruits for salvation through sanctification by the Spirit and belief in truth. [14] To this end he has [also] called you through our gospel to possess the glory of our Lord Jesus Christ. [15] Therefore, brothers, stand firm and hold fast to the traditions that you were taught, either by an oral statement or by a letter of ours. [16] May our Lord Jesus Christ himself and God our Father, who has loved us and given us everlasting encouragement and good hope through his grace, [17] encourage your hearts and strengthen them in every good deed and word.

-‭‭2 Thessalonians‬ ‭2:13‭-‬17‬  

Thanks be to God for some quiet and normal! It seems like a lifetime ago we had that quiet and normal and we are exponentially more grateful to have it now.  We have been doing every activity in Cincinnati it seems to stay busy in our wait to be able to go home. Then we decided, since its only 4 hours away, we'd escape to Erie for the weekend. RMH let's us have one 24 hour period a month without a scan without losing our room so we took Saturday off and headed north. As soon as Max got out of the car, it was like the last 8 months hadn't happened. He kayaked all weekend, got some jetski rides, went swimming. And was a normal 8 year old boy! Thank you Jesus!! His attitude completely changed....he was joyful! Not the frustrated boy that is tired of a hotel room and being stuck here. What a blessing. 

Today, we have scans from 1pm - 6pm.  All of Max's bloodwork looks amazing. His cancer marker that started at 2 million was down to 4 last week. Thank you Lord!!   We'll continue waiting for the Lord's plan to unfold....and Tuesday's appointment results.  Thank you for all the prayers!! We love you and couldn't do this without you! 

-Amanda & Matt

[72] Light and darkness, bless the Lord; praise and exalt him above all forever.

-‭‭Daniel‬ ‭3:72‬

All glory to God for the quiet week! Most of our visitors left….just Aurora stayed behind to keep Max company. So it’s been a quiet week full of activities to keep us from getting bored waiting for our release day! Our appointment with Dr Taylor Thursday gave us the news that we won’t see her until July 2nd and the expectation is that appointment will be releasing us home! We humbly ask that if it is Your will Lord, please send us home 🙏 Scans are still on the 26th….the oncology team ordered those so we will get a phone call with results after they are completed. 

We received the photos and videos from the Reds game last week! Here is the video link: https://mlbn-distro.mlb.com/20240611CIN-HONORARY-CAPT-452934.mp4

And photos courtesy of the Cincinnati Reds! 

We pray you are well and continue to be so thankful for our prayer warriors! We wouldn’t be here without you. We love you all! 

-Amanda & Matt

“And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful.”

‭‭Colossians‬ ‭3‬:‭15‬ 

All glory to God for such an amazing few days, with our family in town and having so much to celebrate!  Max got to officially ring the bell yesterday and it was a welcome event for the rest of us, although Max hated the attention on him so you'll notice his lack of excitement :) There also was a mix up because of Amanda assuring Max all day this was supposed to be a fun appointment only, but the hospital, unknown to us, scheduled a 2 hour med for while we were there that we didn't know about until the nurse showed up to access his port....so it definitely threw Max off.  Don't worry...the med was rescheduled to today so yesterday could be fun and the rest of us didn't let it dampen our spirits!  Now it's official: Max is done with chemo!  Praise Jesus!  Here's the video!  https://youtube.com/shorts/yy3ELRK1cuw?si=1JnmsG_uvlERqZ29

We also have other great news - we met with Dr. Taylor in the morning on Wednesday for our weekly visit and found out Max's lab work is looking so well and consistent, we get to move to weekly bloodwork appointments, instead of twice a week appointments, which is huge!  Of course, that prompted the question of when we get to head home.....and the answer was they were still targeting by the 4th of July!  Max doesn't need to be weaned off steroids before we go so as long as we get regular bloodwork at home and they can make adjustments over the phone, we can be free to head home after his next scans, which are scheduled for the 26th, assuming all goes well.  On the 26th, Max will have a CT scan, MRI, and Ultrasound, as he'll have those every 3 months for the first year at least.  Once we get those results back and everything looks ok, and if Max can avoid more sicknesses, then we will be released back to Dr. Cramer at home!  We'll still be making the journey back to Cincy every month for at least the first year as well, so we'll be back.  But it is exciting we are getting closer to Max finally being able to come home and sleep in his own bed! All things are in Our Lord's hands so we humbly say Thy will be done Lord and wait patiently, something we have a lot of practice in, before we make plans.  But it is exciting that we are closer to being home than we are from when we first arrived back in February :)

Thank you so much for the prayers and support these last few days.  We are so grateful for a few days of just plain fun, days that finally felt more like a vacation, than the mess of surviving we've all gotten used to over the last 8 months.  Thank you Jesus for the joyous occasions the last several days.  We are truly blessed to have such an amazing communion of Saints here and in heaven praying for Max and our family!  We love you and couldn't do this without you! 

-Amanda & Matt

"May of the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit."

-Romans 15:13

Praise Jesus!! Did He give us a wonderful evening. One many of us will not forget! Thank you for those of you that made it out to the ballpark tonight!! What a blessing it was to share it with you! Max did great and had some fun between his nerves while we waited for his field debut. The highlight was when the announcer said Max was officially in remission and the stadium erupted in cheers! What a blessing. The Reds promised to send us photos and an official video but for those that were not there, here's our phone video and a photo to hold you over! Thank you for the prayers that got is here....that and God's grace and miracles through Max allowed us to experience tonight and we cannot be more grateful. We love you!

https://youtu.be/noQdpwW4G-k

-Amanda & Matt

‭
[4] Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.
-Isaiah 26:4

Glory and praise to Our Lord, who alone gives light to our day! He has blessed us the last few weeks and we cannot praise Him enough. No news is good news now. Max is doing great. He is running around the playground, walking the zoo, eating great, drinking his smoothies daily. He is doing so well we've just been hanging out. His liver enzymes that had been an issue for weeks have been NORMAL. Praise Jesus our hospital stay ended up helping the staff finally figuring out what was plaguing his new liver and the new medication is working. We are grateful and now working on getting back to being a family again....Max relearning how to be around siblings and Amanda remembering the chaos that having all the children back together brings and it is such a blessing!

This is a big week for Max! He has his baseball game Tuesday where he will be honorary Captain for the Reds and Wednesday he gets to ring the bell to officially end his cheml treatments! And a follow up appointment with his liver doctor is on Wednesday as well. The 26th of June he will be getting all of his scans updated, which includes CT scan, MRI and this will be the first time we've seen them since his transplant! Prayers for all good news so Max can finally head home would be amazing.

Thank you for all your prayers and support for Max! God willing, we will have several days of good news to share over the next week. But this is His plan so His will be done....we are just along for the ride saying yes every day.  We love you and couldn't do this without you!

-Amanda & Matt

[1] A psalm of thanksgiving. Shout joyfully to the Lord, all you lands; [2] serve the Lord with gladness; come before him with joyful song. [3] Know that the Lord is God, he made us, we belong to him, we are his people, the flock he shepherds. [4] Enter his gates with thanksgiving, his courts with praise. Give thanks to him, bless his name; [5] good indeed is the Lord, His mercy endures forever, his faithfulness lasts through every generation.
 -Psalms 100:1-5

All glory to God. Thank you Lord for such a wonderful few days. We have been blessed to have a restful few days, enjoying each other’s company as a family for the first time since February 18th. Wow. Seeing that in writing is truly astonishing. What seems impossible was accomplished and accomplished only through the One that can do the impossible 🙏 Our Lord and Savior Jesus Christ has seen us through the longest 3 months as a family, being separated and some of us not being home since mid February. What a blessing this week has been. We were able to see our wonderful friends at Our Lady of the Holy Spirit Center, that has become our home away from home in Cincinnati. We had a family pizza party on the roof of RMH and dinners with friends and some fun at the zoo getting our exercise in trying to find the Okapi animals (look them up they are fascinating!). It was full of fun and just enjoying each other’s company. Thank you Lord. Knowing He is with us watching over all of us made this reunion all that much more joyful…and restful! 

We have a few fun things to announce!  Max was selected as an honorary captain for the Cincinnati Reds baseball team in honor of being a cancer survivor for the cancer survival month of June! He will get to walk the lineup out to home plate with the coach and have his photo and bio read to the stadium of fans before the game on June 11th! We will all get to join him on the field and enjoy tickets courtesy of the Reds for the game. We would love to see some friends at the game if you are in the area! 

Next, Max decided last night since he has been taking all of his meds orally that he was ready to let his feeding tube go. With no more feeds and no more meds going in, there was no need for it anymore so Max pulled out his own feeding tube! He panicked about halfway through concerned the doctors would install a new one but after Amanda told him she’d fight for him to not have one anymore, he pulled the rest of it out. What a surprise for the doctor and coordinator today! But they were impressed he doesn’t seem to need it anymore and the dietician even said with his diet being great and no more feeding tube that she didn’t need to come by and see us anymore either! So enjoy the first of many pictures of Max smiling without his feeding tube on his cheek 😊

Thank you for the prayers for the last week. They have delivered us to these amazing past few days and we are so grateful for you!  Thanks be to God for all the blessings and the amazing group of prayer warriors that have joined us in honor of Max. We love you all and truly couldn’t do this without you! 

-Amanda & Matt

“You have made us for yourself, O Lord, and our hearts are restless until they rest in You.”

-Saint Augustine

Blessed be God! Our almost week long wait is finally over and Max has been discharged and with us at RMH! Thank you for the prayers! We love you and couldn’t do this without you! 

-Amanda & Matt

“I prayed to the Lord, and he answered me. He freed me from all my fears. Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces.”

‭‭Psalms‬ ‭34‬:‭4‬-‭5‬ ‭

Blessed be God forever! He is with Max and will continue to be with Max and all of us even in the midst of more trials. 2 hours after Max’s biopsy was canceled because his liver numbers had indeed improved again (thank you Lord!!), Max had a fever. The team is still working on a plan because they too were taken aback that instead of discharging Max today, he now has another 48 hours of hospital stay to make sure his fever is gone and liver is ok before he can leave. Amanda and the kids are staying at RMH determined to get at least a few days of family time so as long as it takes, we will be here. Thanks be to God for Saint Paul, one of many saints that have walked the path of trials and sufferings before us and can help guide us on God’s purpose for all of it. We take a deep breath and have faith in Our Lord that will deliver Max in His timing, according to His plan, not ours. And, like Saint Paul, we trust not in ourselves, but in “God who raises the dead” to rescue us yet again. 

Thank you for the prayers! Today, we humbly ask for prayers again….for strength and perseverance. And prayers for thanksgiving. Knowing Our Lord will deliver Max 🙏 

We love you! 

-Amanda & Matt

“We do not want you to be unaware, brothers, of the affliction that came to us in the province of Asia; we were utterly weighed down beyond our strength, so that we despaired even of life. Indeed, we had accepted within ourselves the sentence of death, that we might trust not in ourselves but in God who raises the dead. He rescued us from such great danger of death, and he will continue to rescue us; in him we have put our hope [that] he will also rescue us again, as you help us with prayer, so that thanks may be given by many on our behalf for the gift granted us through the prayers of many.”

‭‭2 Corinthians‬ ‭1‬:‭8‬-‭11

All glory to God Max’s enzymes decreased enough to cancel the biopsy! Thank you for the prayers! Max should get discharged today 😁

-Amanda & Matt

“Praise the Lord! For he has heard my cry for mercy.”

‭‭Psalms‬ ‭28‬:‭6‬ 

Thanks be to God for hope. Hope in His promises. Hope for a better day to come. In our situation, hope seems near impossible. But we have a God that gives hope to the hopeless. And did He provide hope to our family today. 🙏 

Aurora, Anna, and Memphis woke up feeling better. So much so they were bouncing off the walls ready to start the day. Max has been great for a few days so we decided we would make him some eggs and drop off a smoothie for him this morning! Our first surprise was Max’s transplant bear in the cabinet! They put it in there between yesterday morning and this morning 😁 the kids thought it was so cool to see a picture of Max with his Mario bear in the hallway! Max enjoyed his eggs and drank his smoothie before we even left! And we promised we’d bring him dinner and left to go play at RMH and get some laundry done. 

On a whim, Matt decided to ask the nurse if Max could have a day pass. We assumed the answer would be no since we’ve been down this path before and Amanda had to get Max discharged before he was allowed outside with this same virus. But surprisingly, no. That was not the answer. It was sure! Have fun! THANK YOU JESUS!!! Matt and Max walked over to RMH at 4pm with the expectation to be back by 7. Max ran around the playground with the kids, hung out in the room relaxing while Amanda finished laundry, then enjoyed pasta and meatballs for dinner cooked by Amanda before heading back to the hospital! A hopeless start to our day….filled with hope from Our Lord just when we needed it…hope that good days will come too. 🙏 Thank you for prayers! They work!!

Max’s bloodwork numbers came down a little this morning. But not enough to cancel the biopsy. It is in Our Lord’s hands, as it always is, to decide if Max needs biopsy intervention or not. All the paperwork is signed in case he will need to go under for the biopsy tomorrow morning at 8:30am. But they will make the call at 4am based on lab results from the middle of the night….Thy will be done 🙏 

Thank you for the support!! And the texts and phone calls from our prayer warriors today. Our Lord reaches out to us in various ways and today it was through His children. Thank you for being His voice when we so needed it! 

We love you and couldn’t do this without you! 

-Amanda & Matt

“May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit.”

‭‭Romans‬ ‭15‬:‭13‬

Perseverance. Especially in the midst of trials is a must. Our Lord tell us this much. We must persevere. So we surrender to Our Lord, give everything to Him, and just keep saying yes, walking one step at a time. All good things come to those who trust in the Lord, so we pray and we hope. 

Max’s liver enzymes that were supposed to start falling with the discovery of the CMV virus yesterday did not fall. They doubled. Max is now on schedule for a biopsy Friday. They are concerned the 3 viruses he is battling increased the risk of rejection. The only way to confirm if it is indeed rejection is to biopsy and check for immune system cells in the liver. If his numbers don’t turn around by tomorrow, the biopsy will happen. Max is doing great. He feels much better and no longer appears sick. He had an appetite and is working on taking his medication orally so he can get his feeding tube out. He’s really doing wonderful. Thanks be to God he doesn’t seem to feel the chaos that his bloodwork is showing. 🙏

Matt came up to help Amanda out with the kids and Max since we’ll lose Grandma and Grandpa for a few weeks and Max will be in the hospital.  It seems the other kids are now all sick with what Max had. So we are all having fun all around. We offer up our sicknesses to Jesus and pray He uses them for His glory, to turn hearts to Him. And we take one step at a time and just get through the next hour, the next day. 

Our whole family could use all the prayers today. Thank you so much for sticking with us and offering your prayers and support throughout the last 6 months. Our communion of saints in heaven and on earth are one of the reasons we’re still here fighting. We love you all!

-Amanda & Matt

“Consider it all joy, my brothers, when you encounter various trials, for you know that the testing of your faith produces perseverance. And let perseverance be perfect, so that you may be perfect and complete, lacking in nothing.”

‭‭James‬ ‭1‬:‭2‬-‭4‬ 

Thanks be to God it seems to be just two viruses that are spiking Max’s fever! And they are not something they will treat. HMPV is one of the causes, which is really just a common cold virus. And corona virus, not covid. The test actually stated that! The protocol for monitoring for viruses is 48 hours just to make sure Max’s limited immune system we are purposefully suppressing can handle the virus and keep it at bay and the staff can step in if it cannot. So we will be here at least through tomorrow to make sure Max’s body handles it ok. As long as he goes 24 hours without a fever, he can be discharged. 

It seems God may have brought us back to the hospital for another purpose. One of the test they monitor is tracking for another small virus that typically infects everyone by the age of 5 and usually you don’t get symptoms. It’s called CMV. Max has had a positive CMV test off and on since transplant, even though both him and his donor were negative prior to transplant. They monitor this because in transplant patients, CMV can be deadly. Each time they would get a positive result in Max, they would retest and it would be negative. We had assumed it was just a false positive test, but today, they had a different guess. That Max was indeed infected with CMV and that his immune system was actually managing to keep it at bay, which is why we’d get a negative test after the positive. Now that he is sick with something else, his immune system can’t keep it at bay and it is causing Max to be sick as well. There is a treatment available for this one. And one of the main issues with CMV in transplant patients is that it can cause liver enzymes to elevate. Which is the exact issue we have been battling for the past 2 weeks. We’re not sure why this didn’t ring any bells to anyone in the last few weeks we’ve been seeing the increased liver enzymes and positive CMV tests but thank you Jesus for now making it obvious to the team! They will begin to treat the CMV and we will pray that is our issue with the liver and it can get back to being happy and doing its job. 🙏

Max is pretty mellow today and really only complains about a headache every once in awhile, which they can treat with Tylenol. So we’ll continue to hang out here and hope this new regimen will help get his lab work back in line. But some good news is that they removed the need for his feeding tube! No more overnight feeds and beeping machines and sleeping in weird positions so he doesn’t lay on his feeding tube! As long as he can take the next few doses of medications orally, he’ll be able to get rid of the feeding tube! If nothing else, this news made the hospital stay worthwhile!

 Since we were already here and had some concerns with hearing, they decided to schedule his hearing test today as well. She came by to test him this morning. It seems Amanda has been noticing a difference for a reason….his speaking frequency hearing has dropped significantly. To the point he can’t really hear the “f”, “th”, or “s” sounds. She mentioned that it can affect speech for those sounds as well. So we will see a speech therapist as well to evaluate his speech and see if they are seeing issues related to his new hearing problems. Max is right at the edge of where they would recommend a hearing aid and since he doesn’t go to school in a classroom setting where he would have issues hearing his teacher, they recommend we just try to limit background noise (as much as possible in a house with 4 children!) and make sure we’re within 6-8 feet of him to talk to him and expect him to respond to us. If there is a lot of background noise or we are further away, we can blend in with the noise and he will be unable to distinguish us from the background noise. Hearing loss can continue to worsen up to a year after chemo but in some cases, it can improve as well, so we’ll just continue to monitor and opt for hearing aids if it starts interfering with Max’s daily life. As always, we’re reminded we’re not in control. And God is not surprised. So we have faith and trust that He will see Max through this  and that His will is perfect. 

For now, we control what we can. Which is keeping Max comfortable and happy and patiently wait for him to be discharged to be reunited with his siblings that came up for a visit! Dr. Mo stopped by for some Mario time with Max to help with the patiently waiting part….we are so thankful we have such a wonderful staff here at Children’s that care about the patients. Thanks be to God for bringing us here! 

Thank you for the prayers and support! We love you and couldn’t do this without you! 

-Amanda & Matt

“Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. 

Be at peace, then, put aside all anxious thoughts and imaginations, and say continually: ‘The Lord is my strength and my shield; my heart has trusted in Him and I am helped. He is not only with me but in me and I in Him.’”

– Saint Francis de Sales

All glory to God we got 5 days of celebrating in! Even though we have the all clear for cancer, Max’s liver transplant is still keeping us busy. His enzymes have been holding steady, not going back to normal, so us being local in Cincinnati makes more sense.  He is also in the process of getting admitted for 102 fever. Something is wrong and we are waiting on cultures to return to tell us what it is. But given the chemo has kicked in and taken out his immune system, he will be admitted for at least a few days to monitor him and wait for his immune system to come back up. Prayers appreciated for Max to be comforted and the knowledge for the medical team to know how to treat him most effectively. We know God is not surprised, this is all orchestrated by Our Lord that loves us and cares for us and ultimately He will see Max through this as well. 🙏

We love you! Thank you for the support you continue to provide to Max and our whole family! 

-Amanda & Matt

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

‭‭Proverbs‬ ‭3‬:‭5‬-‭6‬ ‭‬‬

Thanks be to God for delivering us so much good news today. Boy did we need some good news….Our Lord knew we needed good news. Max is officially done with chemo. Dr. Somers, the oncologist, just came in to deliver the best news of the day….Max is in remission. His cancer tumor marker (AFP) is at 90 and will be zero by the end of the next 2 weeks. We started at 2.5 million. So she made the call that chemo is done, and Max gets to “ring the bell” to finish all of his chemo treatments whenever we would like to schedule it! We are overwhelmed with joy and peace and emotions from the last 6 months road. At this point, Max is owned solely by the Liver team for his transplant and he will get bloodwork and scans every 3 months for the next 2 years to monitor but that is it. Praise the Lord!! Tonight, we really will celebrate! 

Love you all! 

-Amanda & Matt

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

‭‭2 Corinthians‬ ‭4‬:‭16‬-‭18‬ 

All glory to God!! Max’s liver numbers came back low enough to cancel the planned biopsy tomorrow and we will get more bloodwork Friday to make sure they still decrease. Thank you Jesus!!  

There are a lot of things to update on but we will do that later. For now, Max has his appetite back and a spring in his step knowing he doesn’t have to get in a hospital gown and go under anesthesia for a biopsy so we’ll enjoy the evening. And Praise the Lord for delivering Max a wonderful break from the doctors appointments and another hospital visit 🙏 

Thank you for the prayers!! We love you all! 

-Amanda & Matt

“I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.”

‭‭Psalms‬ ‭9‬:‭1‬

Thanks be to God for another chemo round with limited short term side effects….not too much nausea and Max even had an appetite and ate a great dinner Friday night! He was pretty sleepy, per usual, but we’ll take that! 

Friday, we received a call from the liver team about his liver enzymes that keep increasing. Unfortunately, it is not good and they don’t want to explain it away with chemo caused it. So Monday, at our next bloodwork appointment, we’ll take a look at the numbers again and if they are still trending in the wrong direction, they want to do a liver biopsy. It is particularly frustrating given they just told us we were good to go only on Thursday….but we again are reminded that we are not in charge. But thanks be to God He is and we know all things work for good for those that love Him. So we trust….and try to have patience while we wait for news. Lord, we place Max at Your feet. 🙏

So we focus on what we can control, like getting him back on full feeds from chemo and making sure to keep the nausea at bay with Max’s nausea routine. 

Please pray for Max’s liver. That whatever is causing this issue will be obvious and stand out to the doctors so they can fix it. Pray for God’s wisdom for the medical staff and Matt and Amanda as they again navigate some tough decisions the next few days. And please pray for Max. That he feels God’s love and peace throughout this constant roller coaster of emotions so he is mostly unaffected by the back and forth of everything being fine then not again. 🙏

Thank you so much for all your prayers. We truly couldn’t do this without you. And Happy Mother’s Day to all the amazing moms out there! Being a mother is such a gift and a blessing to be cherished from Our Lord. We love you all! 

-Amanda & Matt

“The Most Important Person on earth is a mother. She cannot claim the honor of having built Notre Dame Cathedral. She need not. She has built something more magnificent than any cathedral - a dwelling for an immortal soul, the tiny perfection of her baby’s body….The angels have not been blessed with such a grace. They cannot share in God’s creative miracle to bring new saints to Heaven. Only a human mother can. Mothers are closer to God the Creator than any other creature; God joins forces with mothers in performing this act of creation….What on God’s good earth is more glorious than this; to be a mother?”

-József Cardinal Mindszenty

All glory to God all of Max’s tests came back great! He had the GFR test yesterday morning for 3 hours to test his kidney function. This test was administered before transplant the last time we were concerned about his kidneys. The results this time were the same as last time…..which showed kidneys are doing what they are supposed to do and there is something else making the blood tests look off.  So chemo proceeded today at 1pm for 7 hours. He will get 2 hours of hydration, 3 hours of chemo (carboplatin and doxorubicin) and another 2 hours of hydration at 100%. If there was a kidney issue they would have decreased the amount of 75% of what he should have received but since there aren’t any concerns, they are proceeding as planned. Thanks be to God!

Max also had an ultrasound yesterday to check his liver function since his bloodwork looked off. His appointment with Dr. Taylor, the liver doctor, also gave great news that everything looked great with the liver! They were guessing Max’s tacro levels being so low for awhile and chemo were just really rough for the liver and making it harder to process. But anyone’s liver would have issues with that. So they’ll keep monitoring but for now, there is no concern! Thanks be to God!

It is wonderful to be able to share some good news….Max has been doing so well. He went to the zoo Tuesday and walked to see the manatee, which is at the end of the zoo down a huge hill, which means ended the visit with a nice uphill climb but he did great! We were thankful that despite his bloodwork being off, he looks great and is behaving normal and actually getting stronger every day! It seemed confusing the bloodwork wasn’t matching what we were witnessing. Thank you Jesus for seeing Max through a lot of these side effects and keeping his new liver and kidneys functioning 🙏 

What a blessing it is to have our prayer warriors still with us! Know that your prayers are keeping us going every day….by God’s Grace, we will come out on the other side of this stronger in our faith and stronger as a family, with the ability to trust in Our Lord to see us through any obstacle we will face in the future. Thank you!! We love you! 

-Amanda & Matt

“God blesses those who patiently endure testing and temptation. Afterward they will receive the crown of life that God has promised to those who love him.”

‭‭James‬ ‭1‬:‭12‬ 

Thy will be done Lord 🙏 We are so grateful He has made it know He is here because it makes it so much easier to deal with changes to the schedule because of unforeseen issues. Max was supposed to receive chemo this morning. Upon getting the blood test, it showed his kidneys are still not happy. The attending doctor didn’t want to make the call to proceed without clearing it with his primary oncologist so we wait. And Wednesday’s calendar just got a bit busier with a kidney analysis test done in the morning, along with the ultrasound to check on his liver. We know God is here so we trust His will be done 🙏 

Thank you for all your support and prayers the last several months. What a blessing it is to have so many faithful prayer warriors on Max’s team to intercede for us in heaven. We are so grateful for all of you! Please pray for peace for Max and the whole family as we wait for news on Thursday from Wednesdays tests. 🙏 we love you and couldn’t do this without you! 

-Amanda & Matt

“Let all that I am wait quietly before God, for my hope is in him. He alone is my rock and my salvation, my fortress where I will not be shaken. My victory and honor come from God alone. He is my refuge, a rock where no enemy can reach me. O my people, trust in him at all times. Pour out your heart to him, for God is our refuge. Interlude”

‭‭Psalms‬ ‭62‬:‭5‬-‭8‬ ‭

All glory to God Max has had a wonderful week! He’s moving and walking and not missing his wheelchair.  His color is back, his feeds have been lowered because he’s hitting all of his nutrition targets, so he only has the feeding tube at night. It’s been a really great few days! 

Unfortunately it seems we don’t get all good news. Max’s numbers on Wednesday’s appointment dropped by a lot. So much so that Max had to have platelets and a blood transfusion. We spent 6 hours in the day hospital getting both so Max would be healthy enough to start chemo on Monday. His body definitely needed both….he was bruising easily and white….not even a little color in his cheeks showed his hemoglobin is low. All day today, his energy has been better and he looks much better so they definitely helped! Thank you for the prayers!! They were answered that yesterday’s events were healing for Max and what his body needed to be strong enough for chemo again. 

We had a conversation regarding the tacro (anti-rejection) med with Dr Taylor and was told they will not be addressing it yet because all their other children on tacro that do chemo have the tacro levels increase once chemo starts. Anticipating that increase on Monday means they don’t want to overreact and cause it to go way too high and wipe out his immune system. It seems this will be a hard balance for a while. So for now, we wait and pray for God’s will to be done and that He watches over Max and his new liver and intervenes when needed.

We also got a phone call today…Max’s ALT and AST numbers, 2 that are used to track liver enzymes and liver health, are both elevated. They are ordering an ultrasound next week Wednesday to see if they can see a cause for these numbers increasing when they shouldn’t be. We won’t know until after the ultrasound if there is an issue. Once again, we are reminded that we are not in control. There is only so little we have control over. And we can make a choice: either fight this situation with stress, anxiety, or depression….or surrender to Jesus and let Him take over and handle it. Surrendering sounds much easier so that’s what we’ll do. Jesus, take care of everything 🙏 and help us to know and  follow Your will. 

Next week is turning out to be a busy week with chemo Monday and Tuesday, ultrasound on Wednesday, Appointments on Thursday for bloodwork and Liver teams. We pray we have the strength to proceed with any news we receive. We pray the doctors are given the wisdom to guide Max through treatments effectively. We pray for Matt and Amanda to be given the wisdom they need to make the decisions Max needs to keep him the healthiest. And the patience to wait on God’s will to be done 🙏 

Thank you so much for your support! We truly couldn’t do this without you! We love you! 

-Amanda & Matt

“Do not fear what may happen tomorrow. The same loving Father who cares for you today will care for you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginings.”

-Saint Francis de Sales

All glory to God for Him seeing Max through one day at a time, one problem at a time. We trust in Him because He has shown us He is with Max. So we trust whatever we are facing today is part of God’s plan and His will be done, no matter if we understand it or not. We have received the grace to not think about too far into the future, so we stay in the here and now. And right now, there are many, many things to be grateful for! 

Max dropped off the wheelchair to the hospital today! He hasn’t used it in 3 days and now, agreed that it can be available for another child to use it.  He has been walking almost everywhere and it really was a comfort thing to still have it here. We are so proud he made that decision! 

The nurse came by this morning to take bloodwork. There were a lot of changes to medications Friday night so Max agreed to drinking smoothies once again knowing that they help and will prevent him from adding more medication to an already full list he has now. It worked! Thank you Jesus! His magnesium is back in line without adding medications back in. His phosphorus and potassium look beautiful, as the NP mentioned when she emailed with results. Exactly what we needed! Max’s hemoglobin even stayed steady at 7.4! His only issue now is platelets. That’s residual from chemo 2 weeks ago. Because his platelets are so low Max might need a blood transfusion, but they set a time on the calendar for Wednesday morning and we’ll recheck and make a decision then. Prayers appreciated that God’s will be done and if a blood transfusion is needed, it helps to heal Max’s body. Chemo is a week from today already so Max needs all the help he can get to get his body ready for another round. 

The other issue with his bloodwork was his tacro number. It is half of what it should be despite them increasing his dosage Friday evening. We’re not sure what the plan is for this yet but our appointment tomorrow morning with the liver doctor will tell us what next steps are. Please pray for wisdom for the doctor on how to best even out this anti-rejection medication that is so crucial for Max’s body accepting his new liver 🙏 

Thank you for the continued prayers and support! We love all the letters and cards and care packages reminding us we are in thoughts and prayers. We truly couldn’t do this without you! We love you!

-Amanda & Matt

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.”

‭‭Romans‬ ‭15‬:‭13‬ ‭

All glory to God for being with Max always. He is directing Max’s path and his body and his recovery. We are so grateful for our prayer warriors continuing to intercede for us. Thank you Lord to continuing to bless Max on this journey 🙏

Max continues to amaze the medical staff. The liver doctor Tuesday commented that Max must have set a record because she’s never known a transplant kid to get out of the hospital so fast….and do so well! He walked over from Ronald McDonald to the hospital and they couldn’t believe it! He is gaining weight and strength every day. They fixed some of his meds….removing the ones he’s having tummy issues with and tweaking the feeds so Max gets more time off so he feels like eating. Slowly we’re getting back to eating…he’s nowhere near where he was before surgery but yesterday was the first time he actually had a craving and wanted pretzels. Our Lord made sure he got it…the entire snack area was empty except for one thing: a bag of non-gmo pretzels 😊  It’s the little things that are constant that we so appreciate because it makes it apparent He is here. Thank you Jesus!!  Today is the first time he wasn’t forced to eat lunch, he wanted it. Day by day, he will get there. 

Oncology saw us yesterday with the expectation that they would be giving Max a blood transfusion but his hemoglobin was still at 7.8! He’s 9 days post chemo….this is typically the low point! We’re not sure why his bone marrow is able to keep up the fight but we are grateful! Thanks be to God we seems to be getting through the rest of Max’s treatments with minimal issues and side effects. There’s been no changes to hearing or kidneys either so Max is holding steady! We pray our Lord continues to keep Max safe from these long term side effects. 

We continue blood tests and appointments again next week! And just recovering….and in 2 weeks another round of chemo that will actually be done outpatient! For the first time, Max will be allowed to come back to his bed between his chemo days! All glory to God they’ve been able to control all his chemo symptoms so they’ll just manage it again and not have any concerns sending him to RMH. 

Thank you for the prayers and support!! We are so grateful you’re still with us on this journey. We pray tonight for patience in finishing our stint in OH as Max is anxious to get home. 🙏 we love you and truly couldn’t do this without you! 

-Amanda & Matt

“So we praise God for the glorious grace he has poured out on us who belong to his dear Son.”

‭‭Ephesians‬ ‭1‬:‭6‬ 

Thanks be to God it has been a wonderful few days!! Thank you prayer warriors for your prayers and support the last few days while we adjusted to being on our own in RMH. Max LOVES not having his vitals taken every few hours and being able to walk down the hall to get a snack if he wants. It is the freedom that we knew we needed for Max to accelerate his recovery and it is working. Over here, walking is not a chore, something being forced on him by PT. Here, walking is just what we do to go get dinner. Or go make popcorn. Or go get warm milk to have for an evening snack. And all of the walking the last 2 days that Max hasn’t even been thinking about doing is more than the last 3 weeks combined of walking. He feels good and is getting stronger every day. Thank you God for getting us further on the path of recovery! 

Amanda has acclimated to becoming Max’s nurse now, with twice a day blood pressures, documenting Max’s diet and symptoms, and delivering medications as needed. Thankfully, the hospital synced all of his meds on a 9am/9pm schedule! It makes it much easier. But he’s getting 13 different medications, so prep work for the 9am/9pm medication times starts 15-20 minutes before to make sure they are delivered on time! It is an adjustment. 2 of the medications are anti-rejection meds. They suppress the immune system to prevent it from attacking the new liver Max has. One they will wean him off of in the next few months, the other he will be on for life. These medications come with many side effects, which we also have to treat with more medications. Those side effects includes high potassium, high blood pressure, low magnesium, heartburn, and blood clots. So as they wean Max off some of the anti rejection and his immune system doesn’t start attacking that new liver, they’ll wean him off of the others as well. He is no longer in pain medicine!! 3 weeks post transplant, 2 weeks post second surgery, 1 week post chemo and he is completely off pain meds and only has Zofran remaining for nausea. What a blessing. Mighty Max amazes the medical staff and all of us daily. He truly is a warrior. 

There are just a few things we are working on tweaking. Max is required to have a certain amount of anti-rejection meds in his system and he is slowly working his way back up to the goal amount. He also has been experiencing some bloating and a lack of an appetite. He is still getting feeds so he’s getting some nutrition but we’d rather he got nutrients from food and not formula. But there are so many different things in the last few weeks, it is only a guess in what could be causing the issues. We have an appointment tomorrow with Dr Taylor, the liver doctor to review. We pray the Lord helps us find the issue and rectify it 🙏

Thank you for all the support and continued prayers for Max. He is exceeding expectations every day….all glory to God!! 

We love you and couldn’t do this without you! 

-Amanda & Matt

“Rejoice in our confident hope. Be patient in trouble, and keep on praying.”

‭‭Romans‬ ‭12‬:‭12‬ ‭

All glory to God He saw to it we got to escape to RMH!! His numbers are a little off but we are going to do daily bloodwork and they will see us in clinic Monday, Tuesday, and Wednesday between all the different teams we are still between. But at least 24 hours of our day isn’t going to be spent sitting in 4 walls….Hallelujah!! 

Thank you for all the prayers!! What a blessing today! We love you! 

-Amanda & Matt

“Praise the Lord! For he has heard my cry for mercy.”

‭‭Psalms‬ ‭28‬:‭6‬ 

Thanks be to God for another good day yesterday and today! He saw to it that yesterday’s medical team understood the need to get Max out of the hospital to really heal, and today was a new team that pushed it even harder than Amanda so Max will be discharged tomorrow! It has been a crazy 24 hours of meetings with transplant coordinator to make sure Amanda has all the phone numbers and info on what to call for, if issues arise. And meetings with Home Healthcare to make sure Amanda knew how to take blood pressure and manage Max’s port since he will be accessed about half the time away from the hospital. Then today was a 2 hour meeting with pharmacy reviewing all the medicines and doses Max will need to be on. Transitional care starts tonight at 7pm. All transplant patient caretakers have to literally be the nurse and take all vitals, do medications, feeding tubes, etc. they want to make sure you are good to go before they discharge. One of the few benefits of Max having been on feeds for so long is Amanda only has to learn the medications and the wonderful nurses have been helping her the last few nights to get comfortable so it shouldn’t be a big deal tonight and tomorrow morning. 

Please pray for peace for Max and Amanda as they deal with a lot of changes the next 12 hours as they try to transfer back to Ronald McDonald House. And for Max to remain stable and great like he has been the last few days since chemo 🙏

Everyone is so surprised and amazed at how well he is doing that there are no concerns from the team today! And Max has appointments every day this next week so we won’t be on our own for too long 😊 

Thank you for the support the last few weeks! God’s Grace and the intercession of our prayer warriors has gotten us to this point that we are discharging from the hospital 2 weeks after 2 different surgeries and a chemo treatment! Thanks be to God! We love you!

-Amanda & Matt

“Fear not, I am with you; be not dismayed; I am your God. I will strengthen you, and help you, and uphold you with my right hand of justice.” 

-Isaiah 41:10

“The secret of happiness is to live moment by moment and to thank God for all that He, in His goodness, sends to us day after day.”  

-St. Gianna Molla

Blessed be God forever. Our Lord was with us all day yesterday and stepped in to help save the day and we couldn’t be more grateful!  

Max is doing great. So great….he has no nausea and his pain is way down so we’re weaning him off pain medications. He is eating normally. His tube feeds are back up to the goal feeds to gain back from weight he’s lost in the last 2 weeks of surgeries. He is ready. Unfortunately, the doctors and nurses are not yet ready. We had been pushing for a discharge since Max tested positive for rhino virus (cold virus) and we realized they were going to be strict on isolation. Well, during chemo, Max slept most of the time, and didn’t really ask to move around since the medication makes him tired. But since yesterday was the first day without more chemo, he was ready to move. And go do something. And get out of the room he had been in for chemo for 2 straight days. And the answer we got was no. Not even outside is allowed. And both the oncology team and the liver team both gave us that answer. Infectious disease relayed their strict 7 day isolation policy. After 7 days he is allowed to go in the halls to get outside as long as he goes directly outside. No exceptions. To say we were frustrated was an understatement. At some point, common sense needed to kick in and realize that keeping a healthy child locked in their room for a cold virus was asking too much. And what Amanda spent yesterday telling every doctor and nurse was that she wouldn’t even be having this conversation with them if Max was sick or feeling nauseous from chemo or not eating even. This conversation is happening because he’s doing great! And he needs to move in order to continue healing. The answer was still no. Sorry, there’s nothing we can do. We said a prayer and focused on learning about astronomy, Max’s new passion. 

5 minutes after our prayer we get a knock on the door. Kate, our social worker from oncology, stopped by. She hadn’t seen us since our first surgery back in February but since we were back on the oncology floor, she figured she’d drop by and see how Max is doing. She commented how great he looked because he was sitting up in a chair eating lunch! Amanda explained the situation and Kate agreed that keeping him in this room is not an option. Mental health is just as important as everything else and she would talk to whomever she needed to talk to in order to figure out how to get us out of the room and off she went. Thank you Lord for sending her!! Then 15 minutes later, the Child Life specialist Jillian, from oncology came by to talk and see if Max was interested in booking private playroom time, which he was allowed since no other kids would be there. We couldn’t believe it. YES please was our answer!! Max got to walk there and play with some new toys and games, then walk back! THAT was what he needed yesterday and Our Lord provided it through Jillian. What a blessing!! It gets even better though….

While we were waiting for our private playroom time which was a few hours away, another child life specialist that we had booked a week ago just happened to find time on his calendar yesterday and figured he’d stop by and see if Max was up for a visit. This is 2 hours after our prayer for help. Matt, another Child Life Specialist, is known as the cool tech guy. He has all the video games, remote control cars with cameras so kids can drive cars around the hallway without having to leave their beds. He was booked a few weeks out when we last asked so we had assumed we wouldn’t see him. Yesterday afternoon he happened to have a spot open up. Max stood and played the new Mario video game with him for an hour. Matt set Max up to win every level. What an opportunity to be helped to win each level of Mario! Max was so happy by the end of all of this activity in the afternoon, he was talking and making jokes and challenging people to Mario kart again. What blessings….Our Lord comes through every. Single. Time. When will we learn to not doubt? Lord, thank you for watching over Your children. Please forgive our weak, forgetful selves. Help us to remember never to doubt You are here and will intervene when necessary. All glory to God! In Jesus’ name, Amen 🙏 

So today we have a new strategy as we face another day in isolation. Trust the Lord will provide when Max needs it. Amanda will keep asking, but the frustration won’t come today. Because He has Max. And it will be ok. Thanks be to God for the many blessings He showered on us yesterday! 

Thank you prayer warriors for lifting us up when we have needed them too. We are so grateful you are walking with us on this journey and pray that you also start to see blessings in your lives. No matter the circumstances, He delivers blessings amidst suffering for those that surrender to His will. 🙏 We love you all and couldn’t do this without you! 

-Amanda & Matt

“I have told you this so that you might have peace in Me. In the world you will have trouble, but take courage, I have conquered the world.”

‭‭John‬ ‭16‬:‭33‬ 

Thanks be to God Max slept through the night and most of the morning! The doctor was happy with him “sleeping it off” and so are we! He did wake up in time to help Sierra, the tv studio host, come up with Truck Trivia for Monday’s show! What a blessing this morning to help Max cheer up from the last day being inside the room and today will be another day of the same.  Next dose of chemo at 4:15pm then we’ll see how he does tonight before they transfer us back to transplant tomorrow. Thanks be to God the new chemo and new nausea medications just seem to be making Max tired so far! 

We love you!

-Amanda & Matt

“All glory to God forever and ever! Amen.”

‭‭Galatians‬ ‭1‬:‭5‬

All glory to God He has been teaching us how to go with the flow and not try to predict what will happen. Today was one of those days where everything was last minute decisions and hurry up and go! We were ready 😊 As of 8:30 this morning, even our nurse had heard nothing and oncology hadn’t replied to anyone with a plan. Then at 9:30am everything started happening. We had OT show up to help Max stand and stretch then willing to play Mario kart while Amanda talked to the transplant doctors that had heard chemo was happening today. So all the tweaking with meds and fluids went out the door and they said we’ll discuss the plan once you get back from chemo in a few days. Then the oncology doctors came to check on Max and let us know we were going ahead with chemo as soon as we could get on the floor and find out what the history of his nausea routine was. Given he is on steroids for his transplant, we have to change his nausea meds to accommodate so we pray this is as effective as the last few cycles have been. Once they left, our nurse brought in a cart for us to start packing and informed us a bed was ready so it would be quick. We got to pack for 30 minutes and next thing we knew, they were calling for transport and we moved upstairs for chemo! Did we mention chaos? 😂 

Once we got here we got started on fluids and his pre-chemo meds, along with keeping up with his transplant meds. Then they ordered an X-ray. Max has been complaining about belly pain and Amanda has been bringing up for 2 days her concern that the surgery pain wasn’t improving, it was staying the same. They ordered an X-ray just to make sure everything was moving along fine and it is, which is wonderful. We got started on chemo at 4:15pm today and we’re done by 7:15. The plan tomorrow is one more dose at 4:15 to 6:15 then we’ll be done for this cycle! They do want to watch him overnight just in case so we won’t transfer back to transplant team until Wednesday right now. Then we’ll continue transplant education so Amanda can learn all the medications and when they are needed in order for us to get discharged. We’ll be doing blood tests fairly often, 2-3 times a week just to stay on top of Max’s numbers and just like before, this chemo really kicks in on days 7-10. We put everything in God’s hands to direct. We surrender to You Lord. Take care of everything. 🙏 

Please pray with us tonight that Max is spared from nausea. Please pray that Max and Amanda are able to get some much needed rest. And pray that the remaining cancer in Max’s body will respond to this chemo drug and be removed without issues or side effects from this drug. In Jesus’ name, Amen 🙏 

Thank you for the prayers and support!! We love you all and could not do this without you! 

-Amanda & Matt

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.”

‭‭Hebrews‬ ‭10‬:‭36‬ ‭

Thanks be to God we got approved to escape outside! It was a do not pass go, proceed directly outside mandate, but we took it and the second Max was unhooked from his feeding tube, he was off! Wheeling himself through the halls so fast to get out the door 😂  what a blessing!! Gosh what perspective we have been given….being stuck inside a hospital room for 36 hours makes a walk outside seem like winning the lottery! 

Thank you for all of the prayers!! Our Lord found a way to get us outside for a bit and we are so grateful! No news on the chemo plan….but we’re told we will hear in the morning before we may have to move if it is happening.  God knows Amanda needed help letting go of planning and He is offering sooooo many opportunities for her to give up that habit and rely on Him alone. 😁 

Thank you for the continued prayers and support! We love you and couldn’t do this without you! 

-Amanda & Matt

“Pray to be ever ready for God’s will even when it takes you by surprise.”

-Saint Mary MacKillop

Thanks be to God for the great 48 hours before! The reason seems to be that we will have to suffer a bit more. It started last night with an IV machine that was so awful, it was beeping every 20-30 min. All night. Even we were ready to turn the machine off. They replaced our machines in the morning because the staff couldn’t even figure out why they kept beeping. We were so sleep deprived Saturday morning that by the time rounds came with all the doctors, Amanda was pushing to get rid of the IVs! Like really pushing. And after some hardcore negotiation, they agreed to let Max come off of the IV nutrition 😊 there were stipulations on how much he needed to drink (1000mLs) and sticking with more proteins and fats in food. Max did amazing!! He had all of his liquids and every meal he ate all the protein….scrambled eggs, peanut butter. He had a grilled chicken taco for dinner. He was a champ! This morning’s review from rounds was great! They were all extremely happy with where he got to yesterday and there is no need to go back on IV nutrition for today. Thanks be to God!!

Yesterday morning, after the intense IV nutrition debate, we also talked about a concern with Max developing a cough. He doesn’t have any other symptoms so the first day we brought it up Friday, the team was unconcerned. Seemed his body was just getting rid of stuff from the surgery and breathing tubes. Yesterday’s NP however, was a little more concerned. She ordered a humidifier and a viral culture. While we were waiting on the culture we couldn’t leave the room so his disconnected time yesterday from feeds and IV was stuck in our hospital room. But we finally got the results back and he was positive for HMPV. It’s a common cold virus. Most people get it before they are 5 and if they are reinfected, it’s usually really mild, which explains why Max has a cough and nothing else, not even a fever. But that means hospital protocol kicks in and everyone is gowned and masked up when they come in and Max is required to be quarantined for the next 28 days. No playroom. No hallway walks or concourse walks. Yesterday we spent all day in our room. And it shows mentally. Getting out of our room is key to getting Max back to good health….we know there is a reason for everything. And we know we are exactly where we are supposed to be, doing exactly what we are supposed to be doing. So we wonder what Our Lord is up to…..we got a small taste of potential this morning. Dr Tiao came by before rounds and mentioned the virus and said they have to reach out to oncology to see if they want to postpone chemo. If they do, Dr Tiao would have the team work on transitional care so we could get discharged and wait at RMH for chemo, rather than being quarantined to a hospital room. Maybe that is the goal with this random cough….get Max out of here as quickly as possible so he can heal better out of the hospital! But we patiently wait on Our Lord on what His plan is. And we’ll see what oncology comes back to us with. Even if he had chemo, they’d be transitioning us out of here quickly. Which is a big improvement than the weeks we thought we’d be stuck in the hospital. Thy will be done 🙏  

Today’s picture is a great comparison photo….it helps when we get frustrated with a day like yesterday to see the progress Max has made just in the last 2 months. The first photo (left) was taken after the lung surgery February 20th. And the other photo (right) was a few days ago! In the overall view of his progress, Max really has come so far….and that’s with 3 surgeries under his belt too! So we are blessed even when we have these hurdles. And we are so thankful with how well Max has been able to do with everything.  Praise the Lord!

While we wait, we trust in the Lord and His plan for us and know that we are His children and as such, get to share in His glory one day. We pray for Max to beat this virus with nothing more than the cough affecting him. We also pray for some relief from the hospital room, in one way or another, to be able to get back outside and have more incentives to get strong and walk and heal from surgery. 🙏

Thank you for the prayers and support! Once there’s a firm plan, we’ll post another update 😊 God bless you all on the Lord’s day today and May He bring you peace 🙏 we love you! 

-Amanda & Matt

“And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering. Yet what we suffer now is nothing compared to the glory he will reveal to us later.”

‭‭Romans‬ ‭8‬:‭17‬-‭18‬ 

All glory to God Max got to continue his amazing 24 hours with another restful, productive day!! What a blessing! He slept in until 8:30am, got to wake up with some snacks and the news he would be free from all machines for 4 whole hours today! We got to decrease pain meds since we are day 4 post op and increase feeding tube and hopefully his appetite follows. All of his bloodwork is looking so normal, they are back to scheduling bloodwork as needed, except for the standard CBC we need for chemo starting Monday. We spent our 4 free hours off the IVs exploring the hospital concourse (yes it is big enough to be considered an airport lol not Atlanta but maybe Columbia 😊). They have a scavenger hunt for kids to do with prizes! Two days in and Max is 5 away from finding all 40 items! He’s becoming a pro at operating the wheelchair by himself but he’s still learning the rules to the road and about not cutting people off 😂 we’ll get there! He’s great getting up and down off the wheelchair and walking too. We also had PT and OT visits today with walks and some games to stretch his stomach out a little. Reaching across his body with his opposite arm to grab things, or getting things that are higher to make him stretch up. It was good and showed us what to focus on the next few days! Thank you Lord for all of these wonderful people to help guide Max back to good health. Thank you for giving Max the grace and healing to get better so much faster than anticipated! What a blessing! 

Our Surgeon Dr. Tiao and our Oncologist, Dr. Somers came by today to talk about chemo starting Monday. The pathology from the tumor from last week’s surgery is coming back in part. The good news is that they are confident they got all of the tumor out at the surgery, which is great! Unfortunately, what they can confirm is that there were indeed cancer cells that were alive and well and replicating in the tumor when it was removed. That means that there are cancer cells that were not responding to the chemotherapy we were using. Since Max is blowing all of them away with his recovery, they decided the best course of action was to switch the chemotherapy drug to one these cells haven’t yet seen. It is a stronger drug too so it will be a harder recovery but once the cancer cells prove they can ignore a chemo drug, it’s useless to keep trying the same one. Everyone is in agreement that since Max has just surpassed expectations on recovery, he will be strong enough to handle the new drug on Monday. So that is the plan. The genetic testing is still pending for the tumor but they said that typically takes 2-3 weeks before they hear back from that. They will let us know when they hear back on that. The goal is that these last chemo treatments after the transplant will any remaining cancer cells so Max has less likelihood of any of it returning. We pray that is the case 🙏

Thank you Lord for the wonderful day You blessed us with again today. We pray our joy radiates Your joy and love to everyone that sees. Please help Max to have peace the next few days in anticipation of chemo on Monday and continue to heal him so he can crush all expectations with his progress. In Jesus’ name, Amen.

Thank you for all of your prayers and support the last few months but especially the last week. All the graces flowing from this week truly have given us such joy in the midst of so much suffering ❤️ We love you! 

-Amanda & Matt

“Let all that I am praise the Lord; may I never forget the good things he does for me.”

‭‭Psalms‬ ‭103‬:‭2‬ 

Thanks be to God we had such an amazing 24 hours we had a hard time finding time for an update! Last night all of us were so exhausted, we passed out and missed on updating our amazing prayer warriors! Sorry about that…and sorry in advance for the long update but He so blessed us we have to share 😊

After Max was cleared for food, he tried everything he wanted….but as we were laughing with our nurse, it is impossible to chart one bite of everything! Literally a bite of grilled chicken, one strawberry lol by the end of the day though, he ate quite a bit of mac n cheese and decided that’s when he was done, before his hotdog! So his hotdog request was moved to today. The doctors know him well enough to know he self regulates well..:.if he eats a bite and his stomach is not happy, he won’t eat anymore. Must be all the training from chemo the last few months in being cautious. He did great! 

We had 3 special guests yesterday. The first was Kelsey, Child Life Specialist, that talked to Max about decorating a little bear for the floor. The hallway that is leading up to the transplant floor has cases of teddy bears decorated by the transplant kids. Now that Max has had his transplant, he can officially join the wall! He’s thinking already about what outfit will go on his bear 😊

The second guest was Morgan, the Child Life Specialist from PICU. They invited Max to come to Seacrest Studios, the tv studio in the hospital. They broadcast on a channel in the hospital and do things like trivia, interviews, story time and bingo for all the kids here! Max was invited to go sit in on story time, one of two patients selected! He was nervous about being on camera so he sat off screen but got interviewed, answered questions, picked a book and even sang songs with the show host! It was such a blessing for us to watch….Max was back. For an hour, staying in the hospital, being stuck in a wheel chair with an IV pole, surgery….none of that was even a thought while he just enjoyed hanging out being a normal kid with the studio crew. Thank you Lord for such an amazing blessing. 

Our third guests came and met us in the lobby after dinner to bring some toys and talk and hang out. Max wanted to give them a tour but we ran out of time before we had to leave to take our medicine. It was a big day and wonderful we had an early night. All glory to God after so many hard days we had such an amazing 24 hours. 

We had one meeting yesterday with Tina, our transplant coordinator. She had to review all the things that can go wrong with transplants and the things no longer be able to do…..which should have stressed us out. But it was such a perfect day, nothing could bring us down 😊 Max will only be able to swim in the ocean, Great Lakes, and in private chlorinated swimming pools from now on because of risk of infection. He also can’t eat a lot of raw foods, like sushi. Vegetables and fruit need to be washed very well and organic. Crowds should be avoided. There’s a whole list….and organ rejection actually happens in 50% of kids. Rejection just means Max’s immune system is mounting a response, so it is treatable. They just suppress the immune system again and he’s back to normal. As long as we are diligent with taking meds twice a day every day for life and getting bloodwork regularly and calling if any symptoms pop up, Max shouldn’t have any issues 🙏 thanks be to God He has kept us in the present. Tomorrow’s worries are for tomorrow. So we focus on today’s worries, which are controlling pain after our exciting day yesterday, getting the stomach tube out today, and walking so we can stretch and work our muscles! 

Thank you so much for the prayers and support!! We love you all! 

-Amanda & Matt

“Do not look forward in fear to the changes in life;

  rather, look to them with full hope that as they arise,  God, whose very own you are, will lead you safely through all things;

 and when you cannot stand it, God will carry you in His arms.

  Do not fear what may happen tomorrow; the same understanding Father who cares for you today will take care of you then and every day.

 He will either shield you from suffering or will give you unfailing strength to bear it.

  Be at peace,  and put aside all anxious thoughts and imaginations.”

– St. Francis de Sales

Thank you Jesus for the restful night! No monitors beeping, minimal sleep interruptions for blood work or ultrasounds or X-rays (which in PICU was always scheduled at night!). Max really only got up a few times for bathroom breaks but that was it! It was a much needed break from the last week. 

Great news from the rounds this morning! Max has been begging for food and since he’s so good at having eyes bigger than his stomach and never overeats, they cleared him of all restrictions!! With the note to not go crazy of course but Max usually listens to his body and doesn’t eat if his stomach is off. Course no restrictions means he reached for the Cheetos puffs he’s been eyeing for over a week! And ate one and now he’s done 🤦‍♀️ 😂 it’s good he is so in tune that he doesn’t overdo it though. We’ll try some strawberries and yogurt this afternoon and work towards his next ask of a hotdog by dinner and see how it goes! Tonight may be the start of tube feeding, as long as he’s not nauseous trying all the foods today. If we go back to tube feeds, they can wean him off of TPN/lipids through his IV, which would be wonderful. But given they just did the intestine resection Monday, the surgeon wants to take it slow, so we’ll take it step by step today. More news is they will be removing his central line! He still had his port and an IV that can handle the medication so that’s one less thing on his chest he won’t have to deal with. He still has the drain too, which will be at least a few more days. OT already came by to have him walk the floor and throw a ball around. Max had fun and she got a few smirks when he was trying to knock down some cones and kept hitting other objects 😊 Thanks be to God. Some normal. What a joy and a blessing it is! 

Today’s other activities include some time in the playroom or a walk in the concourse to get Max out of his room. He’s been stuck in 4 walls for awhile and it shows in his stress level so we’ll see if we can escape to the chapel and maybe the cafeteria too just to get him out and about again, even if he can’t walk it yet and just visit in a wheel chair. 

Thank you for all the prayers and support!! It’ll taken a lot of God’s Grace to get to this point and we couldn’t be more grateful for it! And for you! We love you!

-Amanda & Matt

“Whatever is good and perfect is a gift coming down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow.”

‭‭James‬ ‭1‬:‭17‬ ‭

Thanks be to God for getting us here! It was a LONG wait, but we made it to A4N, the transplant wing of the hospital and out of PICU around 6pm tonight!  Max could not wait to escape the hourly monitoring checks, constant vital checks, and people in and out all day and night (and neither could we!). Praise the Lord for giving Max a short PICU stay. It’s hard to believe he had surgery yesterday. He’s walked twice today down the hall while we were waiting. He’s been sitting up in chairs and in bed. It’s amazing. What a blessing. 

Now, we get to enjoy hopefully getting some sleep that we all desperately need! And Max will enjoy some normal….like hanging out and building legos 😁 

Thank you for all the prayers and support! We love you and couldn’t do this without you! 

-Amanda & Matt

“Praise the Lord God, the God of Israel, who alone does such wonderful things.”

‭‭Psalms‬ ‭72‬:‭18‬ ‭

Thanks be to God we made it!! All Max needed was the surgery yesterday and everything has quickly fallen into place and Max gets to graduate from PICU today!! Today’s picture is a screenshot of the bilirubin labs we were so diligently watching. The high point was Monday morning 4am before surgery. You can see how much it has dropped just since the surgery! All glory to God, who directed all of our medical team and surgeons to do what needed to be done to get Max back where he needs to be. They have no other liver concerns, it is working beautifully 😊🙏 

Once we move to the liver floor over in A4N, we will be focusing on recovery. Meeting with PT/OT twice a day to make sure we’re working on walking and standing up straight so we don’t have any issues develop from abdominal surgery. Max will also be on a clear liquid diet for the next 24 hours and a liquid diet for 48 hours after that to make sure the section of intestines that is now connected to the liver has a chance to heal before we put solid foods in his system. So he’ll also pick up tube feeds tomorrow to start gaining the weight back on he lost from the last week of surgeries and recovery.  We’ll work on pain meds as well as we expect the pain to get worse over the next day or two. But then Max should have some relief and it should get better from there! 

Thanks be to God for the great 12 hours seeing all the results we need for Max’s surgery to be considered a success. And thank you for all the prayers!! We love you and truly couldn’t do this without you! 

-Amanda & Matt

“Praise the Lord! For he has heard my cry for mercy.”

‭‭Psalms‬ ‭28‬:‭6‬ 

Blessed be God we had such a successful surgery!! The bilirubin labs that were ever increasing that caused us to go back into surgery have already dropped by almost half!! Praise Jesus that was the issue! The surgeons were great and got Max out of the OR in 4 hours this time and he was returned to PICU with 3 less tubes than last surgery. No chest tube, no catheter, only 1 stomach drain instead of 2, and no A-line! The recovery for this surgery should be 24 hours of no food, then liquid diet, then 48 hours no restrictions assuming all goes according to plan. Much better than this last surgery. What a blessing! Max was returned to the PICU at 3pm just in time to have the sky go dark here in Cincinnati for the eclipse so all the doctors and nurses got to experience it too.  He’s been super sleepy since being back but not sleepy enough to not insist he needed to be cleaned up and put normal clothes on. If he’s dressed normal, it means he’ll feel better so he was on it 😊 the pain should be the same as last time, where the worst of it is day 2/3 then we’ll get to really recover quickly we hope. They started Max on TPN and lipids, which are IV feeds to avoid Max losing too much more weight as we patiently wait for when he can do tube feedings and real food again. Once he can, we’ll switch back to those so he can gain some weight back just from the last week and a half of being in recovery from surgery. Dr. Tiao also indicated Max will be starting chemo a week from today so we will be moved to the liver floor in a day or so, then be transferred to oncology for the first round of chemo post surgery. We’ll get a run down on what that looks like as we get closer. For now, we recover!  As we get through a second recovery, we remember that the suffering that Max is enduring is temporary. We must go through Calvary before we can share in the glory of the Resurrection! And we cannot yet imagine how glorious it will be 🙏 Please Lord, help Max to suffer well for you and understand that this pain is temporary and no matter what trials we face, You are there every step of the way.  Please spare Max some of the pain but give him the grace to know the purpose of all this is for Your Glory.  

Thank you for all the prayers and support today! We love you!

-Amanda & Matt

“And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering. Yet what we suffer now is nothing compared to the glory he will reveal to us later.”

‭‭Romans‬ ‭8‬:‭17‬-‭18‬

Blessed be God forever! Surgery was successful! They fixed what they needed to and Max did great. They are bringing him back to ICU now so we should see him in a few minutes. We will post an update later when we have more time 😊 thank you for the prayers!! 

We love you!

-Amanda & Matt

“I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.”

‭‭Psalms‬ ‭9‬:‭1‬ ‭

Thanks be to God for guiding the medical staff here to make the appropriate interventions to keep Max healthy. God also prepared Max last night for this next surgery, given his hemoglobin is up, white blood cells are in a good position and his platelets went up! That bilirubin though keeps increasing, including at the 4am bloodwork time, so Max is going into surgery at 10:30am this morning. We know the Lord is with Max this morning as he sleeps through all the prep, calm and relaxing. Blessed be God for never allowing us to face any of this alone! This surgery will be shorter than the last surgery, but everything else will be the same in that they will be reopening the incision to complete it so it will be an open surgery. And all the lines and drains Max has now will be utilized for it. He will also have a breathing tube again too. We’re expecting everything to be the same, just take less time since they don’t have the complications of removing the old liver and cancer this time around that they did last time. 

Thanks be to God for the Grace to face another surgery with no anxiety. And thank you for interceding for us for a successful surgery! 

We love you!

-Amanda & Matt

Loving Father, we entrust Max to Your care this day; guide with wisdom and skill the minds and hands of the medical people who minister in Your Name, and grant that every cause of illness be removed, Max may be restored to soundness of health and learn to live in more perfect harmony with You and with those around him. Through Jesus Christ. Amen.

Into Your hands Lord, we commend Max’s body and soul. Amen.

Blessed be God forever! Post #100 on this crazy journey and there are so many of you prayer warriors still with us on this path, determined to help lift us up as we face each day.  God bless each and every one of you!! Thank you for reading and praying along with us. Thank you for your support through phone calls, texts, gifts, cards, care packages.  What a beautiful thing to witness God’s children all coming together to support each other. Thank you for being a part of it! 

Thanks be to God Max is getting better each day! He actually ate 3 chicken wings for dinner….he hadn’t had that much to eat in a week! He had a great attitude today, playing connect4 with Matt and watching Bluey. He went for a walk down the hallway and walked to the bathroom and countless times he sits up in bed by himself! Just in time to potentially go back in the OR. The doctors plan today was to make sure his bilirubin number started going down. There was the 4pm blood tests and the 4am blood tests in the morning where they will make the final call. As of the 4pm bloodwork, his bilirubin kept increasing so everyone is  operating under the assumption the 4am blood tests will look the same and we will head to the OR. Max will be cut off from food and drink from Midnight tonight in anticipation. The donor bile duct and Max’s bile duct were just not the same size and the team is afraid it is creating a bottleneck in the bilirubin draining from the liver. So they will be going in and replacing the bile ducts and connect the liver directly to the intestines. Something they do often but they were hopeful they could get away with using the bile ducts this time since they were so close in size. We leave it in God’s hands.  We pray for healing of his liver and bile ducts so the body starts expelling the toxins on its own to bring down that bilirubin number. 

Thanks be to God we have peace tonight. All of us including Max. Thank you for all the prayers they are working on preparing us for God’s plan, whatever that may be 🙏 We will update everyone in the morning when we have a decision and a time for surgery if that’s the direction we go in! 

We love you!

-Amanda & Matt

“Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭7‬ ‭

Thanks be to God all the other liver numbers we were tracking are continuing to trend in the right direction!  And Max is getting stronger every day post surgery, which will be huge in getting him out of recovery, and back to the transplant floor and then Ronald McDonald to wait out the rest of our time here. Every step gets us closer to that goal. Thank you Jesus for allowing us to finally see the light at the end of this very long tunnel! It is motivating the clock is finally ticking to when we get to head home. 

There are a few issues we are tracking though, one of which is new. So bilirubin tracks the bile which is the output of the liver. Max’s numbers have been increasing, that show his liver is holding onto more bile and not draining it through the bile duct into the intestines. There is a concern from the surgeon based on the fact that the donor liver had a smaller bile duct than Max but they still connected it anyway as it fit together beautifully. Now they are wondering if going to that smaller bile duct is causing a backup of bile because it’s not able to drain as fast. The way to fix this would be to bypass the bile ducts entirety and connect the liver directly to the intestines. This requires surgery if that is the issue. The surgeon indicated that he would give Max’s body the weekend to try to resolve itself in case there’s another factor at play that is making the bilirubin high but if on Monday there hasn’t been an improvement in his bilirubin, they will take him back into the OR and fix that connection to the intestines so it drains the liver better. He will stay in the ICU a few more days until they find out if that surgery is required otherwise we’d be moving to the transplant floor he’s doing that well! So we pray and wait and see what happens and know God is with us and knows the plans and it will work for Max. 

The other issue they are tracking is nutrition. Max was cleared yesterday to eat and he didn’t really…..not that we blame him but he has to have some nutrition to help his body heal. Amanda even made sauce and homemade meatballs with spaghetti and he didn’t even eat half a meatball. He’s already lost almost 2 pounds. So they will be starting feeds in the evenings all night to make sure he’s getting something. 

We are so grateful to the Lord for getting Max this far after the surgery in keeping his new liver functioning. But we ask for the grace and patience as his body makes this liver his own and all of these issues are in the past 🙏

Thank you for all of the support! We love you and couldn’t do this without you! 

-Amanda & Matt

“Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God.”

‭‭Philippians‬ ‭4‬:‭6‬ 

Thanks be to God for a productive day that got us back on the path of recovery towards out of ICU and out of the hospital! Max had so many things removed that it was weird, aka wonderful, to get up and move to the chair or just go to the bathroom without hauling everything him. The trip to CT scan the other day took 5 nurses to handle all of the tubes and IVs and chest tube suction stuff with him. Today’s walk required 3 nurses so we’re improving! Max was able to walk around the bed and sit down on the chair for a few hours and then later this evening, walk over to the chair and sit and get back in bed after. It is pretty difficult to do now, which is amazing considering he was running around at the playground just the other day! But hopefully this will get much easier each time we do it. 

They tried changing the pain meds this morning in the hopes of helping with his pain that he dealt with yesterday. So now he is on Oxycodon and it is working wonders for his pain. But it makes him very cranky so prayers for side effects to not be as intense as they typically are ❤️ 

Max successfully swallowed pills today! We started with learning to swallow candy, since it is medication size! That didn’t work that great so we just put the pills in pudding and had him swallow them with the pudding. So that was great!

Unfortunately, Max didn’t eat or drink much but he still managed to throw up tonight at 9:30. They aren’t sure why….but they prescribed a new nausea medication so we’ll see if that works. What a day. Full of so many steps backwards but more steps forwards. Thanks be to God! 

Thank you for all the prayers and support the last day! We love and appreciate each and every one of you! 

- Amanda & Matt

“For if we are faithful to the end, trusting God just as firmly as when we first believed, we will share in all that belongs to Christ.”

‭‭Hebrews‬ ‭3‬:‭14‬ 

Praise Jesus He intervened last night!! The numbers that were trending up yesterday that meant parts of the liver just still weren’t awake, those numbers have been trending back down over the night with the 4am blood draws. Everything is turning around!! The doctors were very happy this morning! They said we’ll stick with antibiotics an extra week just to make sure Max doesn’t get any infections from the liver cells that may be dying off, which is what that number indicates as well, but that is our only risk here and antibiotics should cover it. Now that Max is finally trending in the right direction for his liver, they are moving fast on getting him back to “normal”. IV fluids will stop today and he had no more diet restrictions. So he’ll have to eat and drink all his input. They are removing some of his IV’s (he has 4 on top of the port and a central line) so some of the tubing will go down and he’ll be freed up from lugging around everything he has now. He will have to leave his chest tube in. They found a pocket of air in X-ray so it is still set to suction. Tomorrow they will reevaluate to see if they can switch it to water bath and clamp it a few hours later in hopes it can come out after that. The stomach drains (he has 2) will also stay as they are still having a lot of output but it’s getting progressively better so as long as that trend continues, we should be good in a day or two. Max also has to learn to swallow pills! He will have to take his transplant maintenance pills he’ll be on the rest of his life orally so that’s the first pill we’ll tackle. 

Thank you for all the prayers and support!! Max’s body is slowly adjusting to its new normal! Hopefully we will get a good picture of him walking today to post later 😊 

We love you and couldn’t do this without you! 

-Amanda & Matt

“We are confident that as you share in our sufferings, you will also share in the comfort God gives us.”

‭‭2 Corinthians‬ ‭1‬:‭7‬ ‭

Thanks be to God for a good afternoon! Max got to sit in the recliner for about 3 hours today playing Mario and watching Bluey. It was a nice change and good for him to use his neck muscles and abs to sit up. His liver still is seeing some issues with some of it being “angry” still. But the other numbers in bloodwork that determine how well the liver is functioning are trending down, which is great! That means it is working. It’s just not all working. We pray the parts that are not yet working wake up and don’t cause an infection. After the confirmation that OR was not needed this afternoon, that his liver needed to fix itself, they moved Max to liquid diet so he can start trying to use his tummy and bowels. He still has the catheter in as well. He took full advantage of being able to have anything liquid and got a vanilla ice cream! We figured he earned it 😊 it’s the first almost smile we’ve gotten out of Max since surgery. What a hard cross this boy is carrying. 

The only other issue they are battling is pain. Day 3 post op means muscles are angry. Very angry. Our pain regime seems to need a change because it just isn’t touching the pain. They are working on tweaking what he can get when….course it is limited number of medicines since they can’t use the ones that are filtered by the liver. We pray Max is spared from his pain tonight as his BP will spike when he’s in pain then he has BP medication.

Please pray for Max’s spirit today - he had a rough mental day and really just doesn’t understand why. Please remove the fear and doubt from Max so he can see Our Lord and the graces He is showering down on Max. Hopefully, when we get the pain under control, the rest will follow. 

Thank you for all your support today! We love you!!

- Amanda & Matt

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”

‭‭Romans‬ ‭8‬:‭28‬ ‭

The Lord watches over His children. And He is good, all the time. We trust in Him to deliver us according to His will. We have no control in life except our reactions. Thanks be to God He is good and we can trust Him. 

Max is such a fighter. “Mighty Max” as the medical team here has started calling him. He quietly takes his suffering until it is too much for his little body and then he asks for relief. He is so strong and through him, by God’s Grace, so many of us are getting perspective and learning how to take up our own crosses. We have heard this sentiment before and we’ll echo it now because it is so apparent this morning in the midst of ALL the bad that he remains steadfast. He will move mountains with God’s help one day. What a blessing it will be to witness it. Thank you for hanging in here with us to lift him up in prayer and help him carry this cross. 

We had 2 visitors today. Dr Evans, one of the main surgeons on Max’s case, stopped by this morning after the ultrasound to explain the need for the CT scan. She just left after explaining the issue. His liver enzymes are the issue that keeps increasing. It determines how “happy” the liver is and high numbers mean it is stressed. They were concerned the liver was stressed because of lack of blood flow or bile backing up into the liver. The CT scan confirmed the blood vessels are functioning and in a good place so that is not the issue. The issue it seems is actually inside the liver itself. They said sometimes this happens and the liver just needs more time to sort itself out and do its job properly. They cannot do anything inside the liver so it is up to God and Max’s liver to sort out the issue and start functioning properly. 

Dr. Tiao also stopped by today. He was with pathology where they were evaluating the tumor. He discussed the need to take the spleen and diaphragm section. Both of those decisions were not expected but were the only path forward with the cancer Max has. It is an aggressive cancer and the chemo was not working on part of the tumor which means eventually, that cancer would have done whatever it wanted regardless of treatment.  So he was confident they made the only decision they could have to not leave any cancer cells behind. We’ll deal with the after effects of a missing spleen and weaker diaphragm as we move forward. But the most important part here is that all the cancer is gone out of Max 😊 In terms of next steps, because his tumor wasn’t really responding to the chemo, he will need to do a full 4 cycles of chemo post surgery recovery. Dr. Tiao mentioned some kids have such success with chemo that most of their tumor is dead so they only have to go through chemo 1 or 2 rounds after. That is not Max’s case. We want to make sure he doesn’t have relapse so he will do all 4 rounds that are treatments every 4 weeks. His surgery recovery should end right at chemo starting. We will not need to be local to Cincinnati for chemo but the transplant keeps us here for 3 months. At that point we should be able to go home and finish any remaining chemo at Prisma in Columbia. 

What a whirlwind the last 3 days have been. We pray and wait patiently for the Lord to intervene when He needs. 

Please pray for Max’s liver to function as it should. Pray the remaining cancer cells that we may not see be destroyed by the upcoming chemo cycles so we don’t have to see them again. And pray for peace beyond understanding for Max, Matt and Amanda as they deal with everything the next few days. And pray for some good relief from the symptoms for Max so he can get some rest. 

We love you! We couldn’t do this without you ❤️

-Amanda & Matt

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.”

‭‭Psalms‬ ‭27‬:‭14‬ 

Thanks be to God we have some of the issues resolved but the liver is one that is sticking around for the moment. Yesterday his labs were decreasing for liver enzymes and bilirubin, which was good. Last night’s labs at 10pm saw a slight increase, the opposite of what we need to happen. They were waiting to see this morning’s labs that just came back and they have all increased again. We’re trending in the wrong direction. So Max will be headed to CT to get a picture of what is wrong and depending on what is going on, he may need to go back in OR to fix it. We are at Our Lord’s mercy and we trust He is not surprised by this. Jesus, we surrender to you. Take care of everything 🙏 

Please continue to pray for his medical team. And pray that this liver is healed so that it can function for Max the way he needs it to function. 

-Amanda & Matt

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

‭‭Proverbs‬ ‭3‬:‭5‬-‭6‬ ‭

Thanks be to God for the much better day today! His liver numbers are coming back trending in the right direction, which is good. It’s not improving as much as they would like but as long as it’s improving they’ll be patient with it and wait it out before intervening. They also ordered an extra ultrasound to make sure blood flow is ok and it looks about the same as the ultrasound this morning. Not worse, which is key.  So they’ll keep monitoring the liver function and keep us updated it they need to change anything. 

Max had a big afternoon! Since the liquid retention issue solved itself and his blood pressure has been looking decent, OT and PT decided he needed to at least get in a chair for a little bit for a change of scenery and to move those muscles and remind them they can move. Again, moving also wakes up organs which is key. It was rough and Max was very angry about it but he managed to get into the chair and sat there for almost an hour then got back in bed after that! He was so tired from those episodes that he has been sleeping since 5 when it happened 😊 Tomorrow they will try moving him twice during the day instead of just once. 

Prayer intentions for the night: that Max continues to not have blood pressure issues. That his liver will wake up and start really doing its job. That there are no major concerns that come up tonight. And that Max’s nurses and doctors are guided by the Holy Spirit for all medical decisions and interventions. 

Thank you so much for your support today! Our prayer warriors are the best and by God’s Grace can move mountains! We love you and truly couldn’t do this without you!

-Amanda & Matt

“Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.”

‭‭Psalms‬ ‭91‬:‭1‬-‭2‬

Hallelujah!! Thanks be to God Max has had big improvements in the last few hours. Within an hour of our last post and all our wonderful prayer warriors storming heaven, Max’s body decided to start peeing out all the excess fluid. All of it. And now it’s yellow, the color it is supposed to be, not tea colored. All glory to God!! They gave him no meds for it to change, the nurse literally said “I don’t understand but I’ll take it”. 😊 Isn’t our God amazing?  Max looks much better, he’s less puffy and the urine being the right color tells us it’s working as it should. 

No updates on liver function yet as we’re waiting for blood tests. The blood pressure is also solved! The meds they gave him dropped it initially, but between his body expelling all the extra fluids and them changing his pain meds to scheduled so he didn’t get behind if pain management as much as he was this morning, we expecting that blood pressure number to now be stable. He’s currently 110/80 range which is his usual. 

Thank you prayer warriors for your intercession!! We are so grateful we have so much help with Max’s journey. And when God intervened in such a visible way, it is that much easier to walk this path and surrender everything to Him, because we know He can and will when we need it. 

We will post another update when we have one! For now we wait for blood test results and we pray Max continues to improve, his body and organs continue to wake up and do the job they were designed to do and he experiences limited side effects to all the medication and procedures. Please also continue to pray for Max’s nurses and doctors, that they be guided and listen to the Holy Spirit on how to best intervene and what are the best decisions for the problems. 

We love you all! 

-Amanda & Matt

“Be still and know that I am God! I am exalted among the nations, exalted on the earth.”

‭‭Psalms‬ ‭46‬:‭11‬ 

Thanks be to God for the wonderful day yesterday full of challenges but mostly good news! Today we will look hard for the positives in that Max is here, he is a fighter, and we trust that God will see us through all the challenges of the day. Overnight things started to shift. Since we had chemo a week and a half ago, this week is week 2 of the cycle and usually the worst for Max on this new chemo drug. So his hemoglobin and RBC are dropping still. They ordered a blood transfusion that came in early in the morning. Once the blood transfusion was complete, Max had had an elevated blood pressure. They thought it might be from the blood transfusion, it could be from pain, as they found out he wasn’t pushing his button even when he had pain. So they are still figuring out why that number is so elevated. In the meantime, they have him pain meds and blood pressure medication in the hopes both of those things get his BP back down to normal levels. The next issue is his liver numbers are decreasing. They aren’t sure why yet here either but it could be a kink or blood clot somewhere dropping his liver output. We may have to get more imaging done, ultrasound was already done this morning. We’ll see what next step is on this. They will be closely monitoring it. Another issue we are seeing is Max’s body is retaining fluids. His urine output is very dark and limited so they have him fluids to make sure he wasn’t dehydrated and his body retained the fluids and instead made him puffy. His body didn’t direct the fluids to where they needed to be. Liver function controls a lot of this directing fluids job. 

For now, we pray for the medical staff that is working on Max. For the Holy Spirit to guide them on making decisions that will fix these issues and not cause more. And we pray for Max’s body. That his liver wakes up and starts really doing its job in his body to direct everywhere where it needs to be and pick up the slack for his missing spleen as well. And we pray that Matt and Amanda are given the wisdom to know when and what issues to push and any decisions they have to make He guides them appropriately. With everyone caught up on sleep last night, this last task should be easier today. 

Thank you so much for your prayers and support! Through your prayers and God’s Grace, Max will get through this day better than he started it. We love you!! We couldn’t do this without you!

-Amanda & Matt

The Serenity Prayer: 

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

Thanks be to God for such progress with Max today and giving him the rest he needs as he has been sleeping peacefully for the last hour or so. This is a huge change from before surgery as Max was super restless before surgery. Now he’s peaceful and catching up on sleep and it’s nice! 

He was able to get a bath (using wipes) so he is cleaner and more comfortable. And he even got to play some switch and watch some movies so it was almost like daily life back in the A concourse.  We are grateful it was a “normal” day. Tomorrow the focus is on getting him to walk, working on feedings. Tube feeds will probably be restarted first although they did say they wanted him to eat real food too so they would find a balance.

Thank you for the prayers of peace and hope! Amanda, Matt, and Susan are all getting power naps. Hopefully tonight it will be a restful night 🙏 we love you all and could not do this without you ❤️

-Amanda & Matt

“But the Lord is faithful; he will strengthen you and guard you from the evil one.”

‭‭2 Thessalonians‬ ‭3‬:‭3‬

Praise Jesus, Max is already breathing on his own! The breathing tube was removed around 11am this morning. Matt got to the hospital at 9 and they woke Max up right before 11am to make sure he was awake and alert enough to breathe without the tube before they moved it. It’s nice to see his face and have him talk again! Of course, he’s still out of it and now is able to ask for water continuously since he’s thirsty! They are limiting his liquids as they don’t want anything in his stomach in case they have to send him back to OR for any blood clots or other issues. Tomorrow, the PT and OT teams will be working on getting him walking so his organs can “wake” back up and start functioning to be able to eat and drink again. But it is a slow start. 

Max has a chest tube again from the diaphragm fix and he has 2 tubes coming out of his liver to drain and watch for infections. He also has a catheter in. Since he just had a liver transplant and most medications get filtered through the liver, the pain med options are very limited so he has one button he can push as much as once every 4 minutes and that works ok. We’ll see how it works tomorrow when they have him moving. 

The surgeon came in again this afternoon and commented that the labs are looking great, even the liver labs, which is great news! They’ll just keep working on him getting up and moving to wake up the rest of those organs so he can start eating and drinking normal. 

Thank you for the continued prayers!! We love you and couldn’t do this without you!

-Amanda & Matt

“We know that all things work for good for those who love God, who are called according to his purpose.”

‭‭Romans‬ ‭8‬:‭28‬ 

Thanks be to God!! Max has made it through surgery and is in PICU right now. We are waiting to be able to go back and see him. The surgeon came by to update us. Overall, the surgery went great! They had to give him some blood products and control his blood pressure some, both which are expected in this type of surgery. The liver was successfully installed and is working great! And they were actually able to stitch him all back up so he shouldn’t have to return to the OR unless there is an unforeseen issue that needs to be addressed, like a blood clot. Which is great because he will be able to focus on recovery. He had a breathing tube in and likely will have that for the next few days. He has a chest tube to drain the chest cavity and make sure air doesn’t collapse the lungs. He also has drains near his liver to make sure they can monitor bleeding and drainage and can act quickly if something doesn’t look right. Over the next day, he will be pretty out of it so they’ll just let him sleep and keep him comfortable. After today, they’ll start evaluating when to remove the breathing tube first. And over the next week in PICU, those drains will be removed. His PICU stay should be around 5-7 days, depending on how he does. 

In terms of what they removed, they successfully got the tumor but the tumor had attached itself to the spleen, so they had to remove the spleen. It wasn’t worth the risk to leave it there. They also removed the gallbladder, which is standard with transplants to avoid future issues with it. And the tumor also was pretty stuck on the diaphragm. They had to remove part of the diaphragm that was connected to the tumor then stitch up the hole, which his body handled well. Because his body will be purposefully immunosuppressed, any small cancer cells that were not detected or removed will seize the opportunity to go crazy so Max must complete 3 months of chemo while he is on the heavy duty immunosuppressant meds that keep his body from rejecting his new liver. The initial plan is to get him out of PICU and into the transplant wing of the hospital and then try to discharge after 2 weeks back to RMH while we wait for the 3 month mark when we can return home. But all this is depending on how Max is actually doing. We will assess every morning and slow down the discharge process if he is not ready yet. 

Matt stopped in KY to sleep for a few hours and is heading up now and should arrive around 9 this morning. 

I cannot begin to thank everyone that prayed with us late into the evening or early into the morning or whenever you are thought of Max throughout the day. Your prayers worked. God was with Max the whole time and saw that everything that needed to be taken care of, was and he now has a working liver without cancer! Praise Jesus!! 

Please continue prayers for the donor family, Max’s recovery, and support for Amanda, Matt, and Susan, who will all be supporting Max on limited sleep for the next few days. We honestly could not do this without you. What a blessing it is God gives us a communion of saints readily available on this earth to step in and support when we most need it ❤️ we love you! 

-Amanda & Matt

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

‭‭Jeremiah‬ ‭29‬:‭11‬ 

Max is doing wonderful thanks be to God!! No more blood products have been required. The surgeons have blood moving through the liver and bile being produced. It is behaving beautifully. They are starting the last pieces of the surgery and will have Max in PICU in the next hour and a half. Once he is settled and handed over to PICU team, we will be allowed to see him. Someone from the surgery team will also stop by and give us a rundown on how it went. Praise Jesus we are almost through surgery and it seemed to have gone so well!! 

Thanks be to God for all of our prayer warriors that have hung in with us for the night and morning to come. We are being lifted by prayers as well as Max is and we are so grateful God is keeping us upright to be able to be here for Max. We love you all!

-Amanda & Matt

“Heal me, Lord, that I may be healed; save me, that I may be saved, for you are my praise.”

‭‭Jeremiah‬ ‭17‬:‭14‬ 

Max’s old liver is out! He has received 2 units of blood, 1 unit of plasma and a presser to control his blood pressure during the procedure. Everything else has been stable. The team also has the new liver in and is running blood through it and it looks nice a pink and already is producing bile! This is a good sign this liver will “wake” up and function well for Max! Praise the Lord!  The whole team is still working diligently and progressing well.  At this point, they will be focusing on getting all the blood vessels and arteries and bile ducts reattached from the new liver into Max’s cavity. 

Thank you for the continued prayers!! God is still with Max 🙏 

-Amanda & Matt

“I will praise you, Lord, with all my heart; I will declare all your wondrous deeds.”

‭‭Psalms‬ ‭9‬:‭2‬ ‭

Max’s old liver is out! He has received 2 units of blood, 1 unit of plasma and a presser to control his blood pressure during the procedure. Everything else has been stable. The team also has the new liver in and is running blood through it and it looks nice a pink and already is producing bile! This is a good sign this liver will “wake” up and function well for Max! Praise the Lord!  The whole team is still working diligently and progressing well.  At this point, they will be focusing on getting all the blood vessels and arteries and bile ducts reattached from the new liver into Max’s cavity. 

Thank you for the continued prayers!! God is still with Max 🙏 

-Amanda & Matt

“I will praise you, Lord, with all my heart; I will declare all your wondrous deeds.”

‭‭Psalms‬ ‭9‬:‭2‬ ‭

First update has arrived. Max is doing well. They have made the incision and are working on removing his liver and the tumors from his cavity. This may be the part that takes the longest as the disassembling is complicated and there is usually a lot of bleeding involved with the liver that they will need to stop and replenish Max with necessary blood. We will get another update in an hour or so. Thank you for praying with us tonight. Max is in God’s hands, as he always has been, and there’s no better place to be 🙏 

We love you all!

-Amanda & Matt

”Pray, hope, and don’t worry.  Worry is useless. God is merciful and will hear your prayer.”

-St. Padre Pio

Max was just taken back. It will be 10-12 hour surgery and we will get updates periodically. Matt is driving to OH now to be here when Max is out of surgery. Please pray for the medical teams, Max, the donor family, and anyone that God involves to watch over Max and help him to have a successful surgery 🙏 Lord, we are at Your mercy and we trust You. 

- Amanda & Matt

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭6‬-‭7‬ ‭

Dr Tiao just came in and said we are a go! MRI looked good. The tumors have actually decreased in size, which means the lung nodule would not be spreading cancer so it is from his last surgery. The donated liver has been verified off site by another doctor and is in great shape and a great size for Max. They are taking the opportunity to get the cancer out of Max and this liver in him and we will gladly face the new set of challenges over continuing to let the cancer stay in Max. Dr. Tiao was very pleased with how Max looked and how much weight he’s managed to gain so he was happy that he’ll handle surgery so much better than he would have. Max even gave him a smile, which made his afternoon 😊 Max is amazing. He’s happy, smiling, joking and on only 4 hours of sleep! Thanks be to God!! The peace everyone is praying for is with us and especially with Max. Thank you!!

Updated surgery time is 6pm but that will probably be delayed a bit too logistically so I’ll post when Max is taken back to OR. But for now, everything is ready, all forms are signed, and we wait for all the pieces to be where they are supposed to be before Max is put in his place in the OR last. 

Please continue to pray for that peace that we are so enjoying. And pray God guides the surgeon and teams hands through this whole process so Max is healed through the surgery. We also pray recovery goes well and Max is spared from most of the complications that exist on all the forms Amanda had to sign. 🙏 

Lord thank You for being with Max throughout the whole process and showing Your children the truth that we are never left alone. Thank You for giving us the ability to see Your guiding hand in everything.  We know that Your will be done no matter how today ends and what tomorrow brings and that all things work for good for those who love You. In Jesus’ name, Amen. 🙏 

Thank you for all the prayers and support you’re providing us today. We love you and couldn’t do this without you!

-Amanda & Matt

“Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭7‬ ‭

Prayer warriors - a lot is happening very quickly so I’ll try to post an update as often as I can. Right now, Max has had all his blood tests and CT scan. There are a few issues so we’ll work on correcting these in the next 2 hours in the hopes we can still continue with the surgery. Given we are 10 days out from chemo, Max’s numbers are dropping fast. His hemoglobin is 7.1 and his ANC fell to 300 just since Saturday. They are rushing a blood transfusion in to take care of part of that and he will be getting a shot of medicine to get his ANC above the minimum needed for surgery. That is happening now.  During the CT scan, the tech noticed a nodule on the lung near where the surgery site was. They can’t confirm that it is from surgery or if it’s the cancer that has spread again so we are proceeding with the MRI we had scheduled this morning so the surgeons can get a better picture and figure out what it is. If it’s cancer, the surgery is canceled and we figure out next steps. If it is from surgery before and just scar tissue, we will proceed with next steps on transplant. Right now, transplant surgery is scheduled for 4pm. They will have the donor organ to physically verify around lunchtime. 

Prayer appreciated for Max to stay strong during this already exhausting time. He was up until about a hour ago and finally just fell asleep. We pray he can sleep through most of this prep so his stress level stays low. Prayers for nurses and doctors and surgeons that they listen to the Holy Spirit and work according to God’s will to get Max to where he needs to be. And prayers for Amanda and Susan who are at the hospital on little sleep, that they may be given wisdom and discernment on what Max needs and be directed by God according to His will. 

Thank you for the texts and words of encouragement this morning. We hurry up and wait, at His mercy in where today ends up. Thy will be done Lord 🙏 

- Amanda & Matt

“but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me.”

‭‭2 Corinthians‬ ‭12‬:‭9‬ 

We got a call at 11:41pm Easter evening that they had approved a liver for Max and we needed to report to the hospital at 1:30am to be admitted and start the prep for surgery. Having been down this path before, we can still have it canceled up until the moment of surgery, but we will update everyone when we can. 

Please say a prayer for Max, that he has peace and courage in the face of another surgery. That Amanda is given the strength and wisdom to prepare Max as well as she can. And prayers that the nurses, doctors, surgeons are all guided by the Holy Spirit to care for Max as Our Lord intends. 

-Amanda & Matt

“Be still and know that I am God! I am exalted among the nations, exalted on the earth.”

‭‭Psalms‬ ‭46‬:‭11‬ 

“But the angel said to the women, “Do not be afraid, for I know that you seek Jesus who was crucified. He is not here, for he has risen, as he said. Come, see the place where he lay. Then go quickly and tell his disciples that he has risen from the dead, and behold, he is going before you to Galilee; there you will see him. See, I have told you.””  - Matthew 28:5-7

What a glorious day! Hope in a what seems like hopeless world. Our Lord and Savior brought us life when we were destined for only death. He gave us purpose for our suffering, to bring us to new life with Him. Thanks be to God!  We remember that Jesus conquered death so we could have life and we follow Him all the way to the end, through whatever He may bring us through. And as He tells us, “pick up your cross and follow Me,” it seems hard then you realize He is with you every step of the way. What a blessing it is to always see God pulling strings, changing circumstances, providing guidance to everything around us. Today was one of those days. We were excited at being able to have “normal” plans of dinners and Easter brunches with friends that have become family here and yet, God had other plans. Max woke up with a fever this morning and was generally crabby. Once he started complaining about headaches and his fever persisted for over an hour, we decided to call and were told to head into the ER. Max‘s port puts him at a high risk for infection that can escalate very quickly so they promptly got us to a room and pulled some bloodwork and started an antibiotic before even getting results back. By the time some results came filtering back to us, Max’s fever had gone. His ANC, the number that tells us if he is healthy enough to fight off infections, actually increased in the last few days. Then all the cultures came back negative and the remainder of the tests looked great. The doctors couldn’t figure out what caused the fever and had no reason to keep us there, so they sent us back to RMH with the understanding we’ll have to come back tomorrow if his fever returns. It’s a phrase that is often said around here but when a day’s events make no sense, we know God is intervening. And it seems to happen often with Max. So we know He is here and He is directing everything with Max and we are so grateful He is.

We would appreciate prayers that today’s events are an exception and that Our Lord spares Max from an illness that would be hitting right when his numbers will be dropping from chemo. And that He reveals His will for us over the next few days.  Our next step is Monday morning MRI to take our first look at the cancer since Max’s lung surgery so prayers all goes smooth for that as well are appreciated! 

What an honor it is to suffer with our Lord on this Triduum. For we know that without the cross, there is no way to get to the resurrection and life to come 🙏 

We love you all and wish you a very Blessed Easter season!  He Is Risen! Go out and proclaim the Good News!

-Amanda & Matt

”It is part of the discipline of God to make His loved ones perfect through trials and sufferings. Only by carrying the cross can one reach the resurrection.”

- Archbishop Fulton Sheen

Blessed be God forever! And thank you Lord for delivering good news today! Max’s kidney functions are in normal ranges! His GFR came back at 106 and normal range is 90-120 so he’s doing great. And there’s nothing more to investigate at the moment with them as we are good for now. We pray it stays that way, since chemo is so the kidneys. 

Max is doing great so far. We have started weaning him off of nausea medicine. We drop one at a time per day and see how it goes. So far so good. He has so much energy and his appetite is back and it is wonderful to see how well he is doing. At this point, it takes a lot to keep him occupied and happy because he feels so good he’s ready to go back home and be with his siblings! All in God’s timing, not ours. But Max cannot wait 😊 

Thank you for all the prayers and meals and support you’ve shared with our family the last few days. It has helped both at home and in Cincinnati! We truly could not do this without you! We love you!

-Amanda & Matt

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭6‬-‭7‬ ‭

Thanks be to God for Max still not dealing with nausea side effect! We had a liver doctor appointment and they were amazed he didn’t have any issues this time! His weight stayed the same but that’s actually good news post chemo since they dropped his feeds by half in his tube and I really don’t push any particular thing to eat post chemo days to not overload his stomach. So maintaining is great! Hopefully this next week, we’ll be doing great gaining weight.

Tomorrow morning Max has a GFR appointment to follow up with his kidneys and find out for sure if there’s a kidney issue or not. We’ll get those results within the next 24 hours once completed. Please pray the kidney damage is minimal 🙏

Thank you for the prayers and continued support on this journey! We love you and couldn’t do it without you! 

-Amanda & Matt

“A song of ascents. To you I raise my eyes, to you enthroned in heaven. Yes, like the eyes of servants on the hand of their masters, Like the eyes of a maid on the hand of her mistress, So our eyes are on the Lord our God, till we are shown favor.”

‭‭Psalms‬ ‭123‬:‭1‬-‭2‬ ‭

Thanks be to God!! Max is a little tired but that is the extent of his symptoms the past 2 days post chemo. No nausea. No pain. What a blessing it has been to get out of the RMH compound and enjoy the nice weather in Cincinnati before the rain hits tomorrow. Thank You Lord for our answered prayers for Max’s limited side effects for the moment! We pray He continues to guide Max and limit those side effects as we get further into chemo being active. 

Max had a blast after church yesterday playing at a friends house, running around their yard and playing on the tractor. Today’s adventures included Skyline Chili, a Cincinnati staple, and the Zoo! We walked the whole length of the zoo and was Max tired by the end lol but he did great and he should sleep well tonight 😊 

Thank you for all the prayed and support!! The prayers are working! This is an even better post chemo experience than the last time….what a blessing!  We love you all and God Bless!

-Amanda & Matt

“Let all that I am wait quietly before God, for my hope is in Him.”

‭‭Psalms‬ ‭62‬:‭5‬ 

Thanks be to God we have had another 24 hours with no nausea!! Max made it through all chemo treatments and besides the medicine making him extra sleepy and a little grumpy, those are the only side effects we see. He slept most of the day and he fell asleep fairly early for him, but given he has no pain and no nausea, we are so excited and happy to let him sleep it off. Thank you Lord for delivering another short hospital stay with limited side effects. We pray You continue to intervene on all the side effects with chemo, like kidney function and hearing, and help Max to avoid anything permanent. 

The doctors have put him on a pretty strict nausea medicine schedule, and he had extra fluids while we were in the hospital so we are hopeful things go well the next few days. Given the last round as an example, his symptoms from chemo should start waning by mid to end of the week, just in time for Easter! Unfortunately, 7-10 days is typical for his numbers to drop so we also pray for protection from sicknesses for Max and that he avoids any medical interventions from the chemo this round. 

Thank you for the prayers and support the last 24 hours! Max ran out of the hospital tonight he was so excited to leave.  😊 what a blessing to see the world through his eyes sometimes….what great perspective he gives us when we get stuck in the weeds of the day to day. Thanks be to God for helping us learn to slow down and enjoy the little things through Max’s trials the last few months. For He uses our suffering for our benefit, and this is definitely one of the lessons we have learned. 

We love you and truly couldn’t do this without you! God bless!

-Amanda & Matt

"Let us understand that God is a physician, and that suffering is a medicine for salvation, not a punishment for damnation."

-St Augustine

Blessed be God forever! He has given us a reprieve from waiting and what a gift it has been. Thank you Lord for the last 10 days of having our family reunited! 

Max had the blood transfusion last week and it’s been smooth since then medically. Aurora got to come over and spend the night at the RMH with Max and Amanda a few nights and we had fun with movie night and a few crafts. They definitely have missed each other. We also got to go on a pilgrimage to Our Lady of the Holy Spirit Retreat Center and Our Lady’s Farm. What amazing sites near the Cincinnati area and worth a visit to either one if you haven’t been! Our Lord definitely had some things for us to learn and some more prayer warriors to assist us in our journey so we are thankful to have had these opportunities while we wait. 

Grandma and Grandpa Garries took Aurora, Anna & Memphis back home to South Carolina yesterday to be reunited with Dad. Farmor Stephen is back with us to assist this weekend with Max and Amanda in being admitted to the hospital today. Chemo will start this afternoon and Max will get 2 doses today and another third dose tomorrow. The team is prepared with a nausea plan that will, God willing, prevent Max from throwing up his feeding tube this round and we pray we have a smooth round of chemo. 

There are a few medical updates as well. First, and most importantly, Max is back on a growth curve!! All the doctors and nurses have been so excited about his weight gain so he is doing great between the feeding tube and eating food. He’s back up to 53.5 pounds. 55 was the goal so we’ll see what the next plan is when we hit 55! Next, the kidneys have taken a beating with chemo over the last few months and his kidney function has been dropping. Not significantly, not permanently. But enough that they are ordering extra tests, increasing his hydration levels while we are here to make sure we’re flushing him out, and any future scans he is getting, he will also be getting fluids to give the kidneys extra help in processing the contrast from scans. For now, we wait and pray the kidneys hold out while we get through the treatments we need to get through to get to the other side of this illness. And that the extra set of steps they are taking will keep them healthy enough 🙏

Our Lord continues to provide for us throughout this suffering. We have mutual friends that have become family, churches that have become home, and so many wonderful prayer warriors that add to our numbers of members of the body of Christ praying for Max. It is humbling. We are so grateful to have all of your support. The prayers, donations, gifts, meals, text messages, phone calls, and just conversations over the last few weeks have been the support we have needed to keep walking. The cross is particularly hard today, as Max faces the hospital and another chemo round, after the family leaving yesterday, but we pray that “peace beyond understanding” is granted to us by Our Lord’s grace and our faith, that is being tested like gold, will prove to be for the Glory of God. 

We love you all! God bless!

-Amanda & Matt

“Blessed be the God and Father of our Lord Jesus Christ, who in his great mercy gave us a new birth to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you who by the power of God are safeguarded through faith, to a salvation that is ready to be revealed in the final time. In this you rejoice, although now for a little while you may have to suffer through various trials, so that the genuineness of your faith, more precious than gold that is perishable even though tested by fire, may prove to be for praise, glory, and honor at the revelation of Jesus Christ.”

‭‭1 Peter‬ ‭1‬:‭3‬-‭7‬ ‭‬‬

Thanks be to God for our “normal” week of being with our whole family!! Max desperately missed his siblings and they missed him and it had been apparent all week as Aurora and Max walk around the museum holding hands, and Anna asking Max EVERY question, instead of any adult, and Memphis showing Max his toys first 😊 what a blessing. Thank you Lord for delivering us such a reprieve from the new normal!!

Max had still had his appointment follow-ups. Tuesday, we saw Dr. Taylor, our liver doctor, who was so excited to report Max had gained 4 pounds over the last week! And his appetite is great so as long as he’s tolerating the feeding tube and eating normally, we’ll keep it up to get him to gain and get up to weight. Their calculations had him getting to 55lbs and he’s at 52lbs so he’s almost there. Although they did mention he will be keeping the feeding tube for the foreseeable future. It helps them start feedings fairly quickly after surgery, since he probably won’t feel like eating. Good thing we’re used to it and Max is even learning how to take care of error codes and alarms that go off 😊 He will be a pro in no time and Amanda is willing to let him do that lol

He had bloodwork appointment on Thursday.  This is the intervention. We got a phone call yesterday afternoon around 2 that all of his numbers tanked. His hemoglobin was 6.7. A blood transfusion was required and we needed to come in at 2:30 to get started. So Max, Matt and Amanda went into the hospital, intending on spending Matt’s last evening at the hospital instead of relaxing inside with everyone during Cincinnati’s storms yesterday evening. God had other plans. The nurses accessed Max’s port, drew some blood to check numbers, and we waited for results before ordering blood. And waited. And waited. Nurses were calling every 20 minutes trying to figure out where the blood tests had gone and why we still didn’t have the results. The NP tried unsuccessfully to get the results. We waited for 2 hours before we finally got to the point where the clinic was closing and the NP made the decision to send us home and bring us back in the morning instead. We’re not sure why God intervened and what the intention was, but it was obvious His intervention when no one could explain what was going on and why and they instead chose to send us home so we could enjoy our last night as a family for awhile! Thanks be to God!! We may not understand but we trust. 🙏 After all, His ways are not our ways. 

Matt is now driving back home and Max and Amanda are back in clinic getting a blood transfusion to get Max back up in safe levels again. Prayer appreciated that Max is receiving all the healing he needs and there are no issues with the transfusion. 

We still wait. And enjoy the last few days of siblings and grandparents before we’re back to our new normal. Thank you for the care packages, letters of support and encouragement and everything we have received in our new “home”! Max loves checking the mail and it is fun to get things to open 😊 thank you for all the support you’ve given us so far and we could not do this without you! We love you all! 

- Amanda & Matt

“Seek the Lord while he may be found; call on him while he is near. Let the wicked forsake their ways and the unrighteous their thoughts. Let them turn to the Lord, and he will have mercy on them, and to our God, for he will freely pardon. “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

‭‭Isaiah‬ ‭55‬:‭6‬-‭9‬ 

Thanks be to God for our little break from hospital visits! We are taking advantage of being in a new city with freedom and planning on seeing some sights. Matt’s mom flew home for a break between surgeries…she’s been a blessing and has been with Amanda and Max for almost 2 weeks so she’s getting a well deserved break! And Matt, the kids and Amanda’s parents made the drive up to spend the week with Amanda and Max! We’re so excited we finally get to see each other again! And it’s between chemo treatments and surgeries so Max is feeling great and ready to explore 😊 Thank you Jesus for delivering all of our family safely to their various destinations!! And for giving us such a wonderful support system….everyone that has stepped up and offered food, rides, gift cards to buy clothes we forgot to pack, toys, healthy snacks….you are all the hands and feet of Jesus on this Earth and we appreciate you all so much! 

For now, we enjoy the time we have and we wait for a phone call! 

We love you all and truly couldn’t do this without you! 

-Amanda & Matt

“Through him [then] let us continually offer God a sacrifice of praise, that is, the fruit of lips that confess his name.”

‭‭Hebrews‬ ‭13‬:‭15‬ ‭

Thanks be to God for the break from the hospital and allowing us to settle into a new normal. One that doesn’t involve 24 checks and is getting Max more opportunities to do something besides sit in bed. It is truly a blessing we don’t need to be in the hospital right now. Max is getting to work on homework for school, in between building Lego sets and exploring downstairs at the RMH. We were blessed to be given a car to use while we’re here and it’s been wonderful to be able to go to the grocery store to get food or pick up some clothes. Since we had planned on this only being a week long trip, our packing was insufficient….but we’ve been able to remedy that thanks to our new found freedom that allows us to leave the “compound” as we now call it 😊. Perspective is an amazing thing….thanks be to God He has given us great perspective lately so we truly see all the blessings we would have normally taken for granted just one month ago. 

Max had 2 appointments yesterday. First, most importantly, he gained a pound and a half over the last 2 days!! His stomach is used to the feeding tube consistency and he’s been able to eat a lot actually on top of that amount. He can no longer sit and have a meal like he used to, but he eats a little bit all day and it seems to be working at bulking him up for surgery. Dr Taylor is our liver doctor and she was very excited to see our progress! She’s also very big on nutrition and made sure all his vitamins are good to go, so we’re back on prescription C and D. She made a comment about how most cancer patience have very low vitamin C levels so it’s standard for her to prescribe but you can take a multivitamin too. Definitely something we’ll research the next few days….we follow up with her weekly, or biweekly if any concerns come up. But right now, we’re doing great and we’re just waiting. She put it perfectly yesterday…every day Max goes without a transplant offer is another day of gaining weight and being one day more prepared for surgery. So we focus on what we can, which is Max gaining weight, and we give the rest to God, trusting He has us right where we need to be 🙏 

Thank you for all the prayers!  We are back to having peace. Waiting for Him to deliver us. And your prayers are helping us keep that peace. We appreciate you sticking with us, however long this journey will be. We love you and truly couldn’t do this without you! 

-Amanda & Matt

“Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭6‬-‭7‬ ‭

Praise Jesus!! Max is in a normal bed and does not have vitals being taken every 4 hours. He got a shower, a real shower, for the first time since arriving in Cincinnati for the first surgery.  Oh Lord, thank you for the break from the hospital, even if it is only temporary between surgeries. Max was so excited to leave he hardly said good bye to our wonderful nurses and skipped down the hallway to hurry up and push the elevator button! 😊 what joy today…..and what a wonderful break from the stress of the last few weeks knowing at least tonight, we’ll get to sleep in a real bed. Thanks be to God! It is a great reminder that our struggles, no matter how deep, do not last forever. There will be another side to the road we’re crossing. We just need to keep having faith and trust in our Lord to get us there. 

We spent most of the day talking to every doctor trying to make sure Amanda was set with everything to be successful at Ronald McDonald House. There was training for the feeding tube and monitor and how often and how much if that he needs. Then there was all of the maintenance on if his port was accessed…..thankfully they de-accessed him so that’s a lot of info that can be filed away for another day. Cincinnati Children’s Home Care schedules all the home medicines and equipment and actually comes over to RMH for appointments while we’re here, which is amazing. Our first appointment with them is Thursday morning so all the stuff that arrived here where we’re not sure what it is for, can be clarified then. And if doctors want blood work, they can actually access his port and draw labs if needed. We also got a stricter nausea regimen going given Max had some issues the last few days. They’d like to avoid the feeding tube being thrown up (so would Amanda since that’s another install that would fall on her) so they went back to most of the medication he was taking over chemo that worked so well. We do have a clinic appointment on Thursday in the hospital at 1pm and they’ll check in on those medications and see how it’s going. At any point, we can call and they can walk us through anything. So we’ll meet with the Liver team Thursday afternoon. They are managing Max’s feedings and making sure he’s gaining weight before surgery. They’ll see how he’s gaining and might make adjustments to feeds based on how many calories he’s eating as well.  And we’ll meet Oncology Friday to pull labs to check his numbers and make sure those ANC and hemoglobin and playlet numbers are still ok.  It’s a little overwhelming only because there’s no nurse to fallback on to assist but it’s so exciting to have a chance at sleeping normally, we’ll deal with it happily 😊 

Thank you for all the prayers and support the last few days! It has been the busiest 48 hours we’ve ever had but hopefully this little reprieve will be enough to charge us up for when we go back for a transplant!

We love you all and could not do this without you! 

-Amanda & Matt

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

‭‭2 Corinthians‬ ‭4‬:‭16‬-‭18‬ 

Praise God, in all things. This was brought to me a few times today and it is a wonderful reminder. Because our doctors are very picky with the organs they pick for their children. Maybe that liver would have caused issues in Max down the road. We will never know what God may have saved Max from with the last minute change last night. But we do know He is good. And in all things, we trust in Him and praise Him.  Thank you to our prayer warrior team!! What a blessing to have so many people carrying even us through Max’s battle. Max did not need any help today seeing the positive 😊 He was so excited at 4am to find out we were NOT having surgery and that he could in fact eat, he promptly ordered every snack the nurse could supply right away and had a feast of cheerios and crackers at 4am! And then, instead of being in surgery all day, he was able to be outside in 70 degree sunny weather playing at the playground at RMH with lots of new friends. So Max beat Amanda to the right perspective today….what a gift it is to see things from our children’s perspective sometimes, rather than our own. Thanks be to God Max was given peace and helped Amanda get there too 🙏 

Since this morning’s cancelled surgery, they moved quickly back to “normal”, which means feeding tube and a day pass to get Max out of the hospital. They also initiated discharge orders, which means things are rolling to work on getting us over across the street to RMH while we wait for another liver. This requires Amanda to learn how to handle the feeding tube, how to install it if it comes out (or he’s thrown it up which has happened 2 days in a row). Amanda also had to know how to deal with his accessed port, being able to flush it twice a day so they can still use it to pull labs every other day to keep monitoring his numbers. At this point, we will take getting to sleep in a real bed without waking up every 4 hours for vitals! 

Max has had quite a bit more nausea the last 24 hours but his tummy is handling a lot of changes, like not being allowed to eat for 12 hours yesterday afternoon to full feeds this morning. Typically they work their way back up to full feeds just so his tummy doesn’t get overwhelmed. So we’re learning we have to work our way back up to normal levels after any changes. We pray this is the issue. But Jesus is still with Max. Max said a prayer for Jesus to help him not need another tube install and when he just threw up again an hour ago, his tube stayed down in his belly for the first time. Max smiled when he realized Jesus had answered his prayer 🙏 Oh, to have a child’s perspective. Thanks be to God!

Thank you for all your support the last 24 hours. You were all on this rollercoaster with us today and we’re so grateful you are so we don’t have to ride it alone. So we pray, hope, and don’t worry! Because God is our refuge and our hope is in Him 🙏 

We love you!

-Amanda & Matt

“Let all that I am wait quietly before God, for my hope is in him. He alone is my rock and my salvation, my fortress where I will not be shaken. My victory and honor come from God alone. He is my refuge, a rock where no enemy can reach me. O my people, trust in him at all times. Pour out your heart to him, for God is our refuge.”

‭‭Psalms‬ ‭62‬:‭5‬-‭8‬ ‭‬‬

There was an issue with the donor liver when they were able to see it in person that prevents it from being ok for Max to use. They did say they are very picky with their children’s organs, because they need to last a very long time and outlive us ❤️ We pray for the strength to keep trusting and keep walking forward and knowing that He is guiding every step we take on this path we are on. 🙏

We love you all!

-Amanda & Matt

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”

‭‭Romans‬ ‭8‬:‭28‬ ‭

Blessed be God forever. We are always amazed at watching His plans unfold, in awe of the perfection of it. Our human nature makes us so awful at remembering how great our God is, no matter our circumstances. None of this should be a surprise yet it is, every single time. Forgive us God. 🙏 

Max’s surgeon came in and updated us on a few things. The donor is the same size as Max. This makes the surgery exponentially easier, not having to cut the liver. Lord, please be with the soul that is donating their liver to Max so he may have life to live for You. This donor is the perfect match for Max, an opportunity the surgeon couldn’t pass up. He also said that Max getting chemo on Thursday and Friday is perfect because we’re early enough that Max’s numbers haven’t dropped yet, so they look wonderful, but the chemo is still in his system and will be circulating with the new liver. All I could think during the entire conversation is how great our God is. His will is causing all of these “perfect for Max” scenarios to all occur today, which put everything in motion. What a blessing to see it all unfold. Lord, we are at Your mercy. We surrender to You. Take care of everything. 

The Anesthesiologist came in to warn us the surgery will be about 12 hours and the start time is set for 5:20am so they’ll start prepping Max around 4:00am. He will need pretty extensive monitoring given the length of the surgery and a breathing tube that he will have in for a bit in ICU when we get to see him. He’ll be in ICU for a few days. The first 48 hours are critical. If there’s an issue, it will happen then so around the clock monitoring is essential.

Once Max is stable, he’ll move back to the liver floor where we are for a few weeks. Well coordinate the next chemo treatment based on his recovery and the schedule so he’ll have it here. Then we’ll talk going to RMH…..there are a lot of medications Matt and Amanda have to be trained on and Max’s protocol will change quite a bit just in the first 2 months alone. Then, after he’s stable then, we’ll talk about home. Everything is subject to change and nothing is for sure until it’s happening so we put our trust in God to deliver us when it is His will. Not ours. 

Thank you for the support. We have the best prayer warriors and we truly couldn’t do this without you. God bless you all we love you! We will update throughout the surgery whenever we are given updates. 

-Amanda & Matt

“My child, when you come to serve the Lord, prepare yourself for trials. Be sincere of heart and steadfast, and do not be impetuous in time of adversity. Cling to him, do not leave him, that you may prosper in your last days. Accept whatever happens to you; in periods of humiliation be patient. For in fire gold is tested, and the chosen, in the crucible of humiliation. Trust in God, and he will help you; make your ways straight and hope in him. You that fear the Lord, wait for his mercy, do not stray lest you fall. You that fear the Lord, trust in him, and your reward will not be lost. You that fear the Lord, hope for good things, for lasting joy and mercy. Consider the generations long past and see: has anyone trusted in the Lord and been disappointed? Has anyone persevered in his fear and been forsaken? has anyone called upon him and been ignored? For the Lord is compassionate and merciful; forgives sins and saves in time of trouble.”

‭‭Ben Sira‬ ‭2‬:‭1‬-‭11‬ ‭

Blessed be God forever. We are always amazed at watching His plans unfold, in awe of the perfection of it. Our human nature makes us so awful at remembering how great our God is, no matter our circumstances. None of this should be a surprise yet it is, every single time. Forgive us God. 🙏 

Max’s surgeon came in and updated us on a few things. The donor is the same size as Max. This makes the surgery exponentially easier, not having to cut the liver. Lord, please be with the soul that is donating their liver to Max so he may have life to live for You. This donor is the perfect match for Max, an opportunity the surgeon couldn’t pass up. He also said that Max getting chemo on Thursday and Friday is perfect because we’re early enough that Max’s numbers haven’t dropped yet, so they look wonderful, but the chemo is still in his system and will be circulating with the new liver. All I could think during the entire conversation is how great our God is. His will is causing all of these “perfect for Max” scenarios to all occur today, which put everything in motion. What a blessing to see it all unfold. Lord, we are at Your mercy. We surrender to You. Take care of everything. 

The Anesthesiologist came in to warn us the surgery will be about 12 hours and the start time is set for 5:20am so they’ll start prepping Max around 4:00am. He will need pretty extensive monitoring given the length of the surgery and a breathing tube that he will have in for a bit in ICU when we get to see him. He’ll be in ICU for a few days. The first 48 hours are critical. If there’s an issue, it will happen then so around the clock monitoring is essential.

Once Max is stable, he’ll move back to the liver floor where we are for a few weeks. Well coordinate the next chemo treatment based on his recovery and the schedule so he’ll have it here. Then we’ll talk going to RMH…..there are a lot of medications Matt and Amanda have to be trained on and Max’s protocol will change quite a bit just in the first 2 months alone. Then, after he’s stable then, we’ll talk about home. Everything is subject to change and nothing is for sure until it’s happening so we put our trust in God to deliver us when it is His will. Not ours. 

Thank you for the support. We have the best prayer warriors and we truly couldn’t do this without you. God bless you all we love you! We will update throughout the surgery whenever we are given updates. 

-Amanda & Matt

“My child, when you come to serve the Lord, prepare yourself for trials. Be sincere of heart and steadfast, and do not be impetuous in time of adversity. Cling to him, do not leave him, that you may prosper in your last days. Accept whatever happens to you; in periods of humiliation be patient. For in fire gold is tested, and the chosen, in the crucible of humiliation. Trust in God, and he will help you; make your ways straight and hope in him. You that fear the Lord, wait for his mercy, do not stray lest you fall. You that fear the Lord, trust in him, and your reward will not be lost. You that fear the Lord, hope for good things, for lasting joy and mercy. Consider the generations long past and see: has anyone trusted in the Lord and been disappointed? Has anyone persevered in his fear and been forsaken? has anyone called upon him and been ignored? For the Lord is compassionate and merciful; forgives sins and saves in time of trouble.”

‭‭Ben Sira‬ ‭2‬:‭1‬-‭11‬ ‭

Thank you Jesus!!! Every time we seem like we are at the end of our rope, He steps in and assists. Max was matched with a liver this morning at 10am. The team has been working like crazy behind the scenes and things are happening so fast it’s overwhelming. We are targeting surgery tomorrow morning at 4am. Please pray for peace and strength. And in the event that something happens that pushes this surgery, we may be given the grace to accept it and work on getting to the next surgery date. Please also pray for the donor and their family. 

Love you all!

-Amanda & Matt

“Be still and know that I am God! I am exalted among the nations, exalted on the earth.”

‭‭Psalms‬ ‭46‬:‭11‬ ‭‬‬

Thanks be to God!! This has been the best 48 hours after chemo Max has ever had. He slept through his chemo treatment yesterday and woke up when it was over! It did make him extra tired so he slept most of the day and still slept last night. Today started with being a bit crabby but that it typical with the medicines they have him on to help control the side effects. Around lunch he complained about buzzing in his ears and we were told that is typical for carboplatin chemo drug that he now receives.  There’s nothing they can do about it and it does wear off for now but they said they would record it to verify if the next treatment in 3 weeks could have reduced dosage. The drug that is killing the cancer could be causing permanent hearing loss…and at a rapid pace.  Thy will be done Lord 🙏 there are no words to describe the helplessness you feel when you have to make a decision to have your child keep suffering and potentially lose his hearing in order to keep fighting a disease that could take his life. So we give it up to God. Max is Your child Lord; help him to bring glory to Your name through his life and whatever path You guide him on. We know Your will is for all of Your children to live with you for eternity so we trust the path You have Max on will bring him to You.  In Jesus’ name, Amen 🙏

We are back downstairs tonight on the 4th floor, back with the liver team. We will get an updated plan in the morning during rounds. And at this point, a phone call any day with news of a liver or news of a match for a living donor. We pray God gives us the strength to wait patiently and hope in His plan. 

Thank you for the support! We truly could not do this without you! We love you!

-Amanda & Matt

The Serenity Prayer

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

Praise Jesus!!! Max made it through the whole night with no nausea and no vomiting!! This has literally never happened. He is extra sleepy, which is probably a combination of the chemo drug and his lacking sleep in anticipation of yesterday for the last few days. He hates chemo days and gets so stressed out leading up to them…can’t say we blame him given his experience with chemo. We’re not sure if it’s the new chemo drug carboplatin, or the new nausea medicine combo, or just God’s Grace, but thank you Jesus for delivering us a wonderful, restful night! We pray this afternoon’s chemo goes as smoothly as yesterday’s. Tomorrow we move back to the 4th floor under the liver team while we wait for a transplant.  Thank you for the prayers!!

We love you!

-Amanda & Matt

“Praise the Lord! For he has heard my cry for mercy.”

‭‭Psalms‬ ‭28‬:‭6‬ 

Thanks be to God!! We have had a wonderful day and Max went to bed at a normal time and it is as though chemo wasn’t even a thing today…..thank you Jesus!! We started the day making sure all tests were run, numbers were ok, dosage and nausea medication was all in order and at 1pm, Max started hydration in anticipation of chemo. By 3pm, chemo had started and it was over at 4:30. They stopped his tube feedings anticipating the typical nausea and vomiting we deal with and his nerves really prevented him from eating or drinking too much until chemo was over and Max realized he felt fine! He ate cheerios and he still felt fine! He happily built an entire Lego set and was finished right before chemo was done. They also taped up his port so he could take a shower tonight and he got into bed all clean and feeling great and passed out by 7:30. I cannot begin to describe how wonderful it is to not be in edge after a chemo treatment. He did have a different chemo drug, carboplatin. It is not as strong as the cisplatin that he was getting. They also completely redid his nausea protocol with an exception of the zofran, which he still gets in IV. But hopefully the combination of changes and our Lord’s wonderful grace means chemo will not be as big of an affair for Max 🙏 We pray it will be a restful night tonight! 

A few updates. Max did have a hearing test in anticipation of chemo starting today, and he is already showing hearing loss because of the chemo drugs. High frequency sounds are the issue and it seems it will affect his hearing while there is a lot of background noise. If you know our house, you know background noise is a normal day for us. Since we aren’t stopping chemo, it will probably get worse but we pray for God’s mercy and strength for Max for the first of many permanent side effects he will have to deal with as a result of the last few months. 

We also found out the plan officially in terms of where we will be. We will be receiving chemo tomorrow and they will hold him on the chemo floor until Saturday to monitor him. Saturday, we will get transferred back downstairs to the Liver team. They will take back over nutrition to get Max ready for the transplant. Insurance approval has gone through and Max is officially listed as of 4:55pm this evening. We have a few living donors being evaluated already so we wait and see which comes first. And it seems we will be waiting in Cincinnati. Max and Amanda will be staying locally until after the transplant is completed and recovery is done before they return home.  The best case scenario being given to us is to allow Max to stay in RMH after next week if the liver team is comfortable with his feedings and he’s showing improvement. We are right where we need to be and we have faith God is watching over us and directing His will in all parts of our lives here. We pray for strength for the whole family, as it will be difficult to be split up for so long. But Max needs to be here so here he will stay. 

Thank you so much for the support you continue to give all of us. We are so grateful God has surrounded us with such an amazing community, ready to jump at a moments notice to help relieve some of our burden we are carrying in this trial! Prayers are still the best gift…..God’s graces flow through prayers and we are a testament to that every day. We love you all and truly couldn’t do this without you!

-Amanda & Matt

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.”

‭‭Proverbs‬ ‭3‬:‭5‬-‭6‬ 

Thanks be to God for another day of rest! Max was tired after his fun filled day yesterday and late night last night so today was much more laid back. His numbers are looking good and his move to oncology wasn’t scheduled until this afternoon, so we got another 4 hour break from the hospital at RMH before moving. Today was a different experience… Max was tired and anxious for tomorrow so he was content just to hang out and watch tv, read about the solar system, and open his care packages (thank you!!) and enjoy not being in a hospital bed with vitals every 4 hours and a feeding tube connected to a pole to take with you every time you have to go to the bathroom. It was much more relaxing. We moved rooms and are now settled in A548 on the oncology floor. The plan is to start the post surgery chemo plan in hopes it keeps the tumor under control while we wait for surgery. That means he’ll get 2 different drugs tomorrow and one on Friday then he’ll have a 3 week break before doing it again. We don’t know what that means in terms of where we will be after the weekend but we trust that God is with us and He has us right where we need to be 🙏  We will find out more thoughts tomorrow once we speak to the oncologist. But we do know tomorrow will look very different than what we have seen, as it will be a different chemo drug and they are going to try a new nausea medicine on him to see if it will help.  We pray Max handles it better than the first 3 rounds of chemo, just given it’s a new drug and new nausea medication 🙏  Lord, have mercy on Max. Calm his nerves and give him Your strength to withstand the next 2 days of chemo. 

Thank you for the calls, texts, emails and support over the last few days!  When we have plans, we will update but this process has been such a practice in humility and patience because there are no plans until we have to hurry up and execute. Keeping a calm attitude when everything around us is so chaotic is difficult but God is with Max and He is the foundation we need to not pay attention to the chaos. 

We love you and couldn’t do this without you!! God bless you all!

-Amanda & Matt

 “Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭6‬-‭7‬ ‭‬‬

Thanks be to God we’re still in the calm before the storm!  What a beautiful mid 60 degree day to enjoy out of the hospital! Max is on auto pilot with his feedings and no meds so we got a day pass yesterday to explore the whole hospital and a day pass today to be able to take Max over to Ronald McDonald House! He’s been hearing about this place for awhile so it was nice to be able to show them everything there. Farmor (Grandma Stephen) came from Seattle to hang out with us and give Amanda a hand so we got to explore with her too! Max beat her in chess and got to play on the playground and pinball in their arcade. Then we got to have lunch and dinner there, which he ate, including his vegetables! Dinner was even his favorite pasta and tomato sauce! He also got to pick a toy and bear out and see the room and laundry room and lounge to hang out in and play Jenga and Sorry. It was a ton of fun and a wonderful break from the hospital! He was so excited by the time we were back in the hospital at 6:30 he was wired and ready to keep playing and proceeded to play 2 different nurses on Mario kart 😊 We’re so grateful for days like this where it seems all is normal and we get to enjoy being together and just having fun without the worry of cancer and chemo and surgery. Thank you Jesus for providing us some recharging time! 

We finally have a plan this evening and it made today that much more wonderful knowing it will be rough for a few days again. Max will be moving rooms tomorrow to the cancer floor so that they can start chemo on Thursday with him. He’s on the liver/GI floor right now and since we’re through surgery and recovery, they won’t be needing us back here until we’re at liver transplant. So the team of doctors here will be in the background keeping up on Max only because they’ll be getting him back when it’s time for surgery again. The nutritionists that have been tracking calories and supplementing feedings are following us so they can assess and update recommendations based on how well Max does during chemo in the hopes we won’t lose too much progress.  They and the liver teams have been pleasantly surprised at how much Max is eating! I tell them it’s only until chemo comes back in then all the planning will go out the window so we’ll see how it goes. We pray Max is able to at least maintain weight during chemo so we don’t lose too much ground in our race to get him healthier prior to liver transplant. Lord - please see and help us in our need 🙏  We trust in You Lord as You have already filled us with joy and peace beyond understanding. 

Thank you for all the support you have offered our family! We could not do this without you! We love you! 

 -Amanda & Matt

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit.”

‭‭Romans‬ ‭15‬:‭13‬ ‭

Thanks be to God for a calm and relaxing day! He was able to arrange for us to escape for a few hours with Max so we could go to Mass! There is not Mass on Sundays at the hospital and the person assigned to our building to deliver communion was out sick….so out we went! We got to visit Old St. Mary’s Church in downtown Cincinnati and what a treat. It was like stepping back into another time….what a blessing. 

Nothing really new happened today except they are continuing to increase his supplements to get him up to where he’s needed. Tomorrow we’ll find out what the goals are in terms of weight and what the plan is for chemo. Thanks be to God for delivering us a calm and relaxing day, starting with Him and ending with some family movie time just enjoying each other. Tomorrow we lose Matt as he heads home tomorrow, but Max and Amanda are ready to tackle the plan for the week. Please pray for safe travels as Matt goes back home and strength and courage for Max as his next challenge to face will be chemo again. We wait for the Lord to deliver us 🙏

We love you! 

Amanda & Matt

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.”

‭‭Psalms‬ ‭27‬:‭14‬ 

What a blessing it was for us Southerners to see snow this morning! Thanks be to God for this treat, especially since it didn’t stick and make driving awful lol but it was fun to see since we rarely get snow at home! 

Max was content being in the warm hospital until they decided they were putting the feeding tube in today….his appetite has been great! But they need him to gain weight so supplementing has to start today. It was unpleasant to say the least. But Max is so strong….10 minutes after, he was calmed down and trying to figure out how to deal with this new tube. And unfortunately he was only free for the 24 hours because now with the feeding tube, he’s hooked back up to the IV pole so he’s always getting calories. They’ll start small and work their way to a full amount in the next few days based on how much they need him to gain. And they’ll be tracking his numbers closely, at least the next few days, just to make sure his body is handling the extra calories ok and they can readjust as his body needs. 

We pray Max has the ability to gain enough weight before a liver is available and he has to go into surgery. We pray he continues to follow Jesus through the path He has Max on and that He lets Max know he’s not alone. The graces Max has already received as a part of this journey are amazing and far too many to count. Thank you Lord 🙏 And we pray for Matt & Amanda to trust fully our Lord that He knows what will be and He is giving Max everything he needs to complete this journey 🙏  

Thank you for your support and prayers the last few days in particular! Each new day brings a new challenge and we still have peace regardless 🙏 We love you! God bless!

-Amanda & Matt

“Without the burden of afflictions it is impossible to reach the height of grace. The gift of grace increases as the struggle increases.” St. Rose of Lima

Thanks be to God all the wires and tubes from the last few days of post surgery are finally gone! It has been a long 3 days with not being able to get out of bed even so today was wonderful Max got to be disconnected from his IV pole! Max was in great spirits all day today 😊 We also had some wonderful visitors while we were here that came to the chapel to talk and pray with us! What beautiful souls for Christ these sisters are….thank you for the visit!  We had more people in the chapel this afternoon while we were there than have ever been there since we’ve been in the hospital!

God has shown us the next part of the plan through a conversation with Dr Taylor this evening after getting back to our room. Matt and Amanda both had a feeling prior to coming that we would be here longer than a week and it seems like that was the Holy Spirit preparing our hearts to accept it prior to it happening. They want to keep Max here because he is well below weight targets and being a healthy weight directly affects how well he does post transplant surgery. The healthier he is, the more successful the surgery and recovery are. And given Max has been dealing with nausea weekly, he’s just not consuming the calories to gain any weight. Dr Taylor and Dr Tiao are planning on Max getting a liver soon, in which case we are behind on getting some weight back on Max. So Max and Amanda will be staying in Cincinnati for the next few weeks at least, tentatively longer if a liver becomes available while we are still here. They will keep us in the hospital to insert a feeding tube and track calories and electrolytes to ensure they are maximizing Max’s calorie intake and supplementing with feedings in the feeding tube even at night. They understand our goal of not being in the hospital if it is not required so they are willing to work with us if they can get Max on a schedule to let us stay next door at RMH and just go to the clinic daily for blood tests etc, assuming Amanda can manage the night feedings and calorie counting. If they are confident in our ability to do that and Max is gaining, then they will send us home to continue that assuming Prisma can support us there for the follow ups on nutrition. We are exactly where we are supposed to be and we rely on God to take care of Max and get him what he needs to successfully get through the next phase. Thankfully, we know Jesus tells us that no matter what trouble we have in this world, we can take heart because He has already conquered the world! So we can have peace….and He will provide 🙏

Thank you so much for the support you continue to provide our whole family, even the ones not in Cincinnati….we couldn’t do this without you! We love you! 

-Amanda & Matt

“I have told you this so that you might have peace in Me. In the world you will have trouble, but take courage, I have conquered the world.”

‭‭John‬ ‭16‬:‭33‬ ‭‬‬

Thanks be to God because we have much to be thankful for in the midst of our suffering. Max has gotten rid of all his IV’s and his catheter, and only had his chest tube remaining! It is pretty painful but the doctors are hopeful everything would have sealed off enough by tomorrow we can remove it. Max was in great spirits today despite the pain because he moved forward so fast compared to yesterday! He got to build legos today (first time since surgery) without an IV in his hand, and he ate some food. It was a pretty boring day given most of it was sitting and waiting while Matt and Amanda talked to 5 different departments of people for the transplant eval, but he did great. We even got to FaceTime the other 3 siblings and they got Max laughing like we weren’t in a hospital across the country 😊 They all miss each other and we think Max even misses the chaos lol it’s at least a good distraction from the suffering. But today was a much better day than yesterday so we’re improving!  And Max was approved to be listed on the registry for a liver transplant today so we could get a call any day for a transplant that becomes available!  God knows what we need and when and we are sure He will provide when it is the right time!

Matt and Amanda spoke to Dr Tiao again to walk through transplant steps. He talked through the process for living donor vs a deceased donor. 95% of liver transplants in the US are actually deceased donors because organ donation is seen as a welcome culture norm, as opposed to the East, where he does some international studies, where it is mostly living donations. The team has no preference if it’s one way or the other but they pursue both and it’s really about timing in Max’s case. The sooner the better so whatever becomes available first is the direction we will go. He also brought up the risks with liver transplant but given this hospital has the highest number of successful liver transplants in children, they are much more comfortable with every scenario and adjusting to it because they have seen it. Max is in good hands here. Timeline was mentioned briefly but only in regards to when a transplant is available, we will fly up here and go into surgery. Max will spend about a week in ICU so they can closely monitor him. Then about 2 more weeks in the hospital before they will think about releasing him and that is best case scenario. We will need to be here in the area for 3 months to attend outpatient meetings a few times a week as well as chemo treatments for at least one block (one month) so they can monitor that as well. Once we get through those milestones and we have a plan and the ability to manage Max’s medication plan at home (it will be a lot of medications for the first few months and some will be forever with a transplant), we will be able to go home and finish chemo with Dr Cramer at Prisma. Max will be seen regularly for his transplant and for cancer for the rest of his life so they can check and make sure everything is still functioning as it should. Thinking too far into the future is just too stressful with a procedure like this on top of cancer, so we surrender this to Jesus to take care of 🙏 

We also spoke to the infectious disease department and got a lot of insight into Max’s immune system post transplant that will purposefully be weakened in order to make sure it doesn’t turn on his new liver. That means limiting crowds and people we see for the foreseeable future until we can build his immune system back up post chemo. They also mentioned things to avoid, like well water our house is on, since it’s not filtered through a city filtration system, and hence has the potential to carry parasites and illnesses that our immune systems can typically tackle but Max’s will not be able to. We’ll have to figure this one out….boiling water or using bottled water it a lot to manage for everything Max may need water for, down to juice mixes and brushes his teeth. Another problem we turn to the Lord to guide us as it seems impossible. 

We met with the living donor specialist as well and she gave us some information on how to find living donors and who is eligible and how they can apply. They actually keep us separate from the donor side because Cincinnati treats them as their own patient with their own advocate to avoid any conflicts of interest, which is good for both parties! But it was important to note all medical expenses are covered for the donors, either through our insurance or anything outside of that, the hospital has a fund to cover it. 

Finally, we met with the social worker and psychiatrist to talk through how they can best help Max adjust to life at the hospital and eventually to life with a new liver and all that entails. They said it seemed like we had Max adjusted great to life with chemo but with a liver transplant, it’s a whole other set of challenges that will last the rest of his life, as opposed to chemo, which will end eventually. Our problems all seemed to switch today.:..from chemo and cancer to liver transplant and all that it entails. 

Last update, we were finally accepted into the Ronald McDonald house next to the hospital! It is an amazing facility with a kitchen for us to cook in and meals for all of us for free twice a day, which is amazing as Matt and Amanda haven’t had meals covered since getting here Sunday! So between the meals they provide, and the kitchen for Amanda to cook in for Max, we should be in much better shape to get Max some food he likes so he can start gaining weight! The team here is very concerned that he starts gaining weight so he can be ready whenever the surgery happens. 

Sorry for the delay in updates today but it was a very busy day! Thank you for all the  prayers and support! We are so grateful God has provided us with such an amazing community of prayer warriors from across the world. We know the suffering we are going through now is nothing compared to the glory God has waiting for us for eternity, so we keep moving forward. Trusting in His mercy. We love you!

-Amanda and Matt

“Therefore, we are not discouraged; rather, although our outer self is wasting away, our inner self is being renewed day by day. For this momentary light affliction is producing for us an eternal weight of glory beyond all comparison, as we look not to what is seen but to what is unseen; for what is seen is transitory, but what is unseen is eternal.”

‭‭2 Corinthians‬ ‭4‬:‭16‬-‭18‬ ‭‬‬

Thanks be to God for technology!! To allow us to update our extensive network of wonderful prayer warriors with a single post. Even when said technology randomly will log me out and erase all the updates I had been typing for 30 minutes lol I am still thankful it exists. Here’s take 2 and I hope it sticks!

Max had a rough night. He was up most of the night uncomfortable between the chest tube and urine retention from the anesthesia. He ended up needing a catheter about 6am this morning because he couldn’t empty his bladder on his own all night. He is not happy about this development, but it is much less stressful knowing he’s not causing any additional issues in not being able to go. So now he has a chest tube and a catheter.  On top of all the IV tubes and sensors. The poor guy is stuck to the bed, God willing, until tomorrow when they can remove both the chest tube and the catheter. We pray this will happen but we also are using this as an opportunity to learn about redemptive suffering. Offering Jesus every bit of suffering on this road, which is more apparent for Max right now. We pray God continues to give him the grace to persevere without losing hope. 

We had many appointments and visitors today. The surgeon team came in 3-4 times to check the chest tube and find out how he’s doing. The anesthesia team came in twice to remove the PCA button since he wasn’t using it (no more morphine yay!) and find out if the other pain meds they had described were working. We are still tweaking those. Max swallowed his first pill! So many milestones that get glossed over in the chaos of surgery and cancer treatment. We also met with Dr. Tiao. He’s anticipating tomorrow’s transplant board review to have no issues approving Max for a transplant. He’ll see us again in the morning prior to that meeting for a consult for the transplant. We also met Dr Taylor, the liver doctor that will be working with us  on managing the liver transplant, what to do to prepare for it, and what to do post transplant to make sure he’s successful. He will need to be on medication for the rest of his life post transplant in order to keep his body from rejecting the new liver. Again, we are choosing to focus on what is in front of us that we can control (which is very little), and give the rest to God to be concerned with. She also spoke about the importance of nutrition! This is the first doctor that has been able to have a conversation with Amanda on Max’s diet and what he needs to be eating to be optimal calories with the limited amount he eats these days. It is vital he gets some weight back on prior to transplant so he had the best possible outcome with the surgery. If eating is just not working with Max, aka he just doesn’t want to eat enough calories, then we will proceed with a feeding tube. This allows us to bypass the mouth and those taste buds that reject so much of the good food and go directly into the stomach. They could even feed him at night when he’s asleep this way to get him to those calorie targets. Of course, in the next breathe, they said all of this tweaking is for home as the hospital can’t make custom things to meet the needs of these kinds of patients so we’d need to find a supplement that he can have while he is here that the hospital can get. We’ll see where we go from here on this but for now we focus on getting him back to normal without a chest tube and catheter, and then we can get to focus on diet. There’s a whole nutrition team that will assist us with this over the next few days, weeks, and months. 

Thank you for all your texts, phone calls, and emails, and support that you are giving our family at this time. We truly couldn’t do this without you! Please be patient with us for tomorrow’s update as it is another full day of appointments with various doctors and teams as well as some more work with getting Max off the chest tube and catheter so the update may come a bit later. For now, we ask for prayers for Max to have the Grace from God to keep persevering in this suffering. We pray he may receive some relief and be able to sleep tonight. And we pray for Matt and Amanda to get some rest so they can be guided by the Holy Spirit on all the decisions and conversations that will occur tomorrow 🙏 We pray in Jesus’ name and do not worry while we wait for God’s plan. We love you! God bless!

-Amanda & Matt

“Pray, hope and don’t worry. Worry is useless. God is merciful and will hear your prayers.”

-Saint Padre Pio

Thanks be to God He kept Max’s surgery from being the more complicated open surgery!! Dr. Tiao was able to use the cameras to operate successfully and removed all nodules on the right lung that was seen. There were a few extra markers found on the left lung that he also was able to remove that did not show up on any scans so he will be sending those to pathology. If they come back negative, then we are good to proceed with transplant. If they come back positive, we will need to take a look at the left lung as well, just in case. Dr Tiao wasn’t concerned with them and expected them to be a false positive for the marker but is erroring on the side of being sure. Max did great and because it was not open surgery, should have a quick recovery and minimal pain, thanks be to God! 

The next step for Dr Tiao is to continue the transplant evaluation and hopefully get approval from the transplant team here to list him on Thursday just in case a liver becomes available. They will still proceed with the evaluation in case living donor is possible, but he would rather get him on the list sooner rather than later just to make sure if one becomes available, it will go to Max.

Dr Tiao is considering Max his top priority because of the nature of the tumors and how many there are and how little they responded to the most aggressive chemo Max has been on.  He is concerned we are at the edge of being able to beat this cancer and hence will be very aggressive in pushing forward on the transplant. We are at our Lord’s mercy here, as we always have been and we expect Max to be a shining example of our Lord’s strength and mercy. 🙏  For we know all things work for good to those who love God! 

Thank you to all of you prayer warriors!  We could not do this without all of you lifting us up! God is good, all the time, and everything is in His timing, not our own. We will patiently wait for His plan. 

We love you!

-Amanda & Matt

“For examples of patience in suffering, dear brothers and sisters, look at the prophets who spoke in the name of the Lord. We give great honor to those who endure under suffering. For instance, you know about Job, a man of great endurance. You can see how the Lord was kind to him at the end, for the Lord is full of tenderness and mercy.”

‭‭James‬ ‭5‬:‭10‬-‭11‬

Thank you Lord for the wonderful start of our day. Matt and Amanda have had the peace without understanding and have been able to be an anchor for Max, who was very nervous this morning. But once we entered the waiting area before they took him back, all Max’s anxiety seemed to have disappeared and Matt and Amanda enjoyed joking with him and hearing his laughs ❤️ Thank you Lord for giving Max peace as well. The surgery will last 6 hours. Max is in Your hands Lord, just like he always has been 🙏 

-Amanda & Matt

Thy will be done Lord 🙏 surgery was pushed to 10:30am this morning. They will start prepping Max in about 30 minutes. Thank you prayer warriors! We started our day with “peace without understanding,” even with our delay. Thanks be to God ❤️ We love you and couldn’t do this without you! 

-Amanda & Matt

“Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭7‬ ‭

Thanks be to God for all His blessings in our lives! Amanda and Max were able to receive communion today as Amanda happened to be in the chapel when a Eucharist Minister came by. What a blessing! Our Lord is ensuring we have everything we need in anticipation for tomorrow. 🙏 

We had quite a few visitors today. In addition to surgery, we are here for a transplant evaluation. That means every team that is involved with the transplant will take a look at Max, order any tests they need, and provide us with what our options are when we proceed. This is the process that will tell us if we can get a living donor or if we have to wait for a deceased donor. We will have many of these appointments over the next several days. So far, it has just been paperwork and introductions. It kicks into high gear tomorrow. 

Regarding surgery tomorrow, we met with the anesthesiologist and Dr. Tiao came in.  They are concerned that the nodules that are in his lungs are too deep and in between the lungs that they may have to actually do open surgery tomorrow, which changes a lot of the plan. So instead of a 1 day recovery, it would be 2-3 days and a lot more pain to deal with plus a pretty big incision. They won’t know until they try in the morning of course but they will reassess and call and let us know the direction right before they do it so we know what kind of recovery Max will have to face. We pray Dr. Tiao and the other staff in with Max in the morning be guided by the Holy Spirit during the procedure. We pray Max has rest tonight and is able to handle the anesthesia well and the pain is tolerable after the procedure. We pray for peace for Matt & Amanda to know our Lord is watching and taking care of Max. 

Thank you for the continued prayers!! We feel them and God’s presence everywhere in this place and it is helping ease the anxiety we all feel about tomorrow 🙏 We love you all and couldn’t do this without you! 

-Amanda & Matt

“Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection. Do not be afraid of the terrors of the night, nor the arrow that flies in the day. Do not dread the disease that stalks in darkness, nor the disaster that strikes at midday. Though a thousand fall at your side, though ten thousand are dying around you, these evils will not touch you. Just open your eyes, and see how the wicked are punished. If you make the Lord your refuge, if you make the Most High your shelter, no evil will conquer you; no plague will come near your home. For he will order his angels to protect you wherever you go. They will hold you up with their hands so you won’t even hurt your foot on a stone. You will trample upon lions and cobras; you will crush fierce lions and serpents under your feet! The Lord says, “I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble. I will rescue and honor them. I will reward them with a long life and give them my salvation.”

‭‭Psalms‬ ‭91

Thanks be to God for our current blessings. Like Jesus being in the hospital with us in the chapel downstairs so we can stop and see him at any point! Like Max being mostly healthy at this point. Healthy enough to walk down to the cafe and eat some lunch without any issues! Being in a major hospital, which is one of the best hospitals for children in the country, puts life in perspective again. There are so many children that are long term kids on this floor and have been here for months. Or children that have no immune systems and must not leave their rooms and the only people they see are nurses and doctors in gowns, hats, and masks. Lord, please be with all of these families. Help them feel your love and your presence so they know they are not alone on this journey.  It is why one of the things we will do when Max makes it out of this state of life is donate time and try to donate gifts to our children’s hospital. When you can’t leave a hospital room, it is life changing having legos or toys or blankets being brought to you. Something to do besides video games or watch TV.  Please say a prayer for any families that have children with chronic health issues. They can use some lifting up today, as everyone has lifted us up the past few months. 

Max is doing great. He is a little nervous now that the surgery is on but overall, still in great spirits. Because his ANC number jumped up so much the last few days, Dr.Tiao is proceeding with the planned surgery tomorrow morning at 7:30am. Max has way too low of hemoglobin since it dropped so we have no choice here except to use general blood bank blood. We just don’t have the time to do anything else given surgery is in the morning. We know that God is not surprised by anything so we trust in Him that He will see Max through everything. 

We will update again when we have scan results. Thank you for the prayers! We couldn’t do this without you….we love you!

-Amanda & Matt

“Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God.”

‭‭Philippians‬ ‭4‬:‭6‬ ‭

All glory to God we had an amazing send off at home before heading to Cincinnati! What a blessing the last 12 hours have been 🙏 we woke up bright and early for a special mass for Max at 7am to be able to receive his First Holy Communion. We had a small group of family and friends there to help us celebrate. Being able to have Max get his “food for the journey” was such a blessing before such an important week. Thanks be to God!  We drove straight to the airport after church where Amanda and Max were blessed to ride in a private plane. It was the best flight we ever took with arriving 30 minutes before the flight left and then the pilot updating the departure time since we were ready early! Max had fun getting his own window and aisle seat 😊 We flew in and arrived at the hospital by 12:30 and Matt drove and arrived at 7pm. Max got an X-ray, his port accessed and some bloodwork done. His hemoglobin is down a bit, which is a little concerning since we’re not home with our normal food to help him get back up, but his ANC is up to 840! Our target is 1000 for surgery so he’s close. We pray the Lord helps Max with his numbers to keep him healthy and He guides Matt and I how to best assist Max given the resources we have. 

We were able to spend the afternoon finding the chapel inside the hospital (complete with service on Sundays so we don’t even have to leave the building!), exploring the playroom, and finding the cafe. We went “out” to dinner at the cafe a few buildings over with Matt when he arrived, which was wonderful end to a wonderful day. Thanks be to God for this perfect day to start this next journey. We pray this joy and praise sustains us over the next several days of difficult appointments and long days ahead 🙏 

Thank you for all of your prayers, texts, phone calls, and support during the past 24 hours. We are so blessed and will be spending the next few days praising and praying as the hours progress, knowing full well that God is in control and He knows what is best for Max and for us. We love you and couldn’t do this without you! 

-Amanda & Matt

“Is anyone among you suffering? He should pray. Is anyone in good spirits? He should sing praise.”

‭‭James‬ ‭5‬:‭13‬ ‭‬‬

Thanks be to God for all the blessings that continue in our lives, even in this suffering we are in. He has moved so many hearts to help us in this trial it is truly humbling. Thank you for being the hands and feet of Jesus on this earth. We were able to get a private flight so we will leave in the morning at 10am and we will be in Cincinnati by 11:30am! We will head right to the hospital to be admitted and we have a full week of appointments. Thanks be to God for another answered prayer as well because Max is excited and not nervous! He can’t wait to fly and go in an adventure 😊 Please pray for a safe journey for Matt, Amanda, and Max and that this journey is fruitful and we get further down the path to the end of this illness 🙏 please also pray for the graces needed to handle the busy week for our family both in SC and OH and for the doctors to be guided on how best to heal Max.  We are so thankful to everyone helping us tackle this week especially! We love you and could not do this without you ❤️

-Amanda & Matt

“For nothing will be impossible for God.”

‭‭Luke‬ ‭1‬:‭37‬ ‭‬‬

Lord have mercy 🙏 What a day. We had surgery canceled on us. Confirmed twice it was indeed canceled. Then at 5:30 tonight we were told that even though surgery is not happening Tuesday, they decided they still needed us there to go through the transplant evaluation and God willing, Max’s numbers will go up during the weekend and early next week to fit surgery in at the end of the week. The back and forth is frustrating but we have reverted back to our old ways of expecting the world be constant. Nothing is constant here….but especially in the world of a child with cancer. This plan will probably change again. But at the moment, we are still leaving on Sunday for Cincinnati for a week of doctors appointments until his numbers get stronger. We wish we could say we handled this with the patience James reminds us we need, but we did not. Lord, please give us the grace to not have expectations with this next week so nothing will surprise us 🙏  Please help Max be at peace with going up there in a bit. 

Thank you for all of your support and prayers!! We love you and couldn’t do this without you!

-Amanda & Matt

“Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.”

‭‭James‬ ‭1‬:‭2‬-‭4‬

God has delivered Max again! Praise Jesus we did not have to have a blood transfusion because his hemoglobin went from 6.6 Monday to 7.2 today!  It has never increased that much in 3 days. So we were able to go home right after his appointment!

His ANC number, which is a measure of his immune system, was 160. 1000 is required for surgery so we will be getting rescheduled and not be going to Cincinnati Sunday. We should get a phone call this afternoon about next steps. We know there is a reason we are home this weekend and next week and He knows best. And His plans are for good and to prosper. We have faith Max will get the surgery when he needs it. We will update everyone when we have a plan. We will continue to help Max get his strength back during this break from chemo!  Thank you for all the prayers!! We love you! 

-Amanda & Matt

“Trust in God’s Providence, interfering–as it always does–for our own good.” 

-Saint Mary MacKillop

Thy Will be done Lord. We are constantly put up against a wall it seems with Max’s plan and getting to execute it without issue. But God has ALWAYS delivered us from these impossible to pass instances in this journey so we pray He will again deliver us from this next one. 🙏 

Max went in for bloodwork yesterday for a checkup as this is his off week from chemo. A recovery week prior to surgery next week. Unfortunately, it was not good news. Max’s hemoglobin that was increasing last week with no explanation tanked by yesterday to 6.6. We have an appointment on Thursday with the expectation that he will be getting a blood transfusion. But a blood transfusion would solve this problem. The other issue is that Max’s ANC is low….at 80. Average is 1500, if you are below 500, you don’t go anywhere and your diet is greatly restricted so to avoid an infection because the immune system just can’t handle anything. This is the first time the doctor has even brought up this number. And unfortunately, this number means Max is not strong enough for surgery so it may be delayed. There is not much that will fix this number except time. It is a result of the chemo killing all the rapidly producing cells, which of course include your good immune system cells.  Having a break from chemo this week will help but it may not be enough to fix it to still proceed with surgery Tuesday of next week. We are at our Lord’s mercy and we wait for Thursday’s results to tell us what our next step is. Please pray for God’s Grace for Max and all of us on the front lines fighting this battle with him. Pray that Max is spared from the side effects of his low immune system and God continues to keep him safe from sicknesses. Please pray that Matt and Amanda are guided by the Holy Spirit to know God’s will and follow His plan over the next few days as things shift.  We may not understand why we constantly keep hitting these roadblocks, but we trust that God has plans for us, “ plans for good and not for disaster, to give you a future and a hope.” 

Thank you for the prayers and support over the last few months. We could not do this without you! We love you!

-Amanda & Matt

The Serenity Prayer: 

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace;

Taking, as He did, this sinful world

as it is, not as I would have it;

Trusting that He will make all things right

if I surrender to His Will;

That I may be reasonably happy in this life

and supremely happy with Him

Forever in the next.

Amen.

Thanks be to God we had a normal day yesterday! It really is a blessing to have a normal day and be so overjoyed about it….because we know the depths of suffering and have been given a new perspective.  Lord, please continue to grant us peace that surpasses all understanding so we may follow You no matter what. 

We have a few updates regarding the surgery. The lung surgery is set for February 20th. That is Max’s second week off chemo so we will only have a follow up appointment in Columbia to check bloodwork, then next weekend, head to Cincinnati for the week to take care of the lung surgery and transplant evaluation. We also have been working closely with Red Cross and Cincinnati on blood donations, anticipating Max will be needing some transfusions up there but it seems Cincinnati Children’s does not work with Red Cross but local blood banks only. So we may have to coordinate with a few local people in Cincinnati. If you live there and have A+ blood type and don’t have any problems donating to a little boy that needs it, please reach out to us and let us know! 

Last update is in regards to something fun…Amanda’s extended family in Pennsylvania has organized tshirts for Max where all proceeds go to our family.  They want to submit a bulk order by Tuesday so take a look and see if you would like a shirt and make sure to put your order in before Tuesday! They do have a shipping option for those of us not located in Pennsylvania! 

https://faulkners-screenprinting.company.site/TEAM-MAX-Liver-Cancer-Support-Tee-Join-Us-in-the-Fight-p624727810

Thank you for all your support, texts, phone calls, emails, donations that have all been lifting us up the past few months. As we move into the next phase of this journey, know that your prayers are making a difference. We have joy and peace in the midst of the most awful suffering and no one can offer that except our Lord. Thank you for interceding on our behalf. We love you all and truly couldn’t do this without you ❤️ God Bless!

-Amanda & Matt

“Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

Thanks be to God for He knows what is best for us, even when we ourselves don’t. We spoke to Cincinnati Children’s Dr. Tiao this afternoon and wow, was he impressive. The best part about the discussion was hearing about the cases he has taken on, including the children that have similar cases to Max, and the higher risk cases that have all ended successfully. What a blessing we were referred to Cincinnati by our doctor here. They will be calling us back with specific dates but in general, we will travel up to Cincinnati in the next week or two in order to do a set of scans, lung surgery and a transplant evaluation. The lung surgery typically has a 1-2 day recovery and the remainder of the time they will be walking us through all the options and decisions regarding transplant and what that process is. We are planning on spending a week up there for this trip then we will head back home and continue more rounds of chemo. The trial Max is on is actually 6 months of chemo so he has another 3 months to go after surgery but they don’t want him to not have any chemo while we wait for a transplant so he will have chemo treatments to keep the cancer at bay while we wait for a liver. We do not yet know until the eval if we can have a living donor or not. If we must wait for a deceased donor, we will be put on a list and kids tend to move to the top of the list and we will fly up as soon as we get a call that it is available. 

Once we have the liver transplant, we will need to spend 3-4 months in Cincinnati in order to allow Max time to recover and the doctors time to make sure Max’s body does not reject the new liver. They will also give us the first round of chemo up there to again allow them to monitor him. Then we will be allowed to return home to finish the last 2 rounds of chemo at Prisma before being complete. We have no idea when the timing will be or how we will do this, but we have faith God will provide and we will figure it out when the time comes. 

Thank you for all of your support these last few months. It seems we’ll be in this state for the next 4-5 months at a minimum. But we pray God is using this suffering to bear great fruits in the future for not just our family but those around us as well. And we pray for the wisdom to know His path when we will be making decisions over the next few days and weeks so we follow His will. We love you and could not do this without you!

-Amanda & Matt

“For I can do everything through Christ, who gives me strength.”

‭‭Philippians‬ ‭4‬:‭13‬

For the second day in a row, God has delivered us 🙏 blood work numbers came back again higher than before! His hemoglobin increased to 7 which removed him from the blood transfusion concerns so we were able to leave right after the test! Thanks be to God!!  Now we wait for our call with Cincinnati on our next steps and praise the Lord while we wait 😊🙏

We love you! 

-Amanda & Matt

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.”

‭‭Ephesians‬ ‭3‬:‭20‬ 

Praise Jesus we had another miracle yesterday! Forgive the late post but we were so enjoying having Max home and dealing with the nausea waves that we made it to the end of the day without even thinking of all our wonderful prayer warriors! And y’all pulled through for us yesterday so thank you!! Max made it through chemo Monday night finishing at 11:30pm. He dealt with nausea that got progressively worse until about 12 hours after, then he could go for a few hours a time without getting sick. The doctors did a blood test again Tuesday morning as promise to check his hemoglobin and it was 6.9. Yes, it went up .1. Something that does not make sense post chemo treatment. Since Max hasn’t been showing any symptoms typical for needing a blood transfusion, the doctors made the decision to send him home with the stipulation that we would need to come back in Thursday for a blood test check. We happily agreed and Max was discharged in the afternoon! Thanks be to God!!  We are still battling with the Red Cross on the directed donor program and God has kept Max from needing a transfusion since we got the denial a few months ago. We trust when we need it, He will provide. 

Most of the day when Max comes home from the hospital it is a battle of beating the nausea waves with the 2 different medications and bracelet. We’ve been losing that battle the last two weeks. It takes a lot to get him to keep calories down that first 24 hours after chemo. After that though, we’ve been hyper focused today on all foods and smoothies that will bring the hemoglobin numbers up in anticipation of tomorrow. His appointment is at 9am so prayers are appreciated!! It is, after all, in His hands and not ours. 🙏

Also tomorrow we have the zoom call with the lung surgeon for Cincinnati children’s at 3pm. That should give us timeframe and plan for dealing with the first surgery to take the tumor out of the lung. The liver tumor is a different oncologist and that is being coordinated now by our Prisma team to figure out if we need more chemo or what the plan is. All in God’s hands and we trust we are exactly where we are supposed to be 🙏

Thank you for your continued support on this journey. We leave you with a prayer and a dance party with siblings to bring a smile to everyone as we wait patiently for His will. We love you! 

-Amanda & Matt

 “Lord, help me to live this day, quietly, easily. To lean upon Thy great strength, trustfully, restfully. To wait for the unfolding of Thy will, patiently, serenely. To meet others, peacefully, joyously. To face tomorrow, confidently, courageously.” – St. Francis of Assisi

Praise God for all that is good, all the time! In general, we have been blessed. Max is really only dealing with chemo side effects at this point, which is mostly nausea. We are on nausea medicine all week now to make sure he can keep food down and not throw up. But when we get past the worst of the nausea, he has energy. He can run around outside. He can walk into the hospital carrying his backpack like normal and we are so grateful for those moments. We were able to see our fire family this week, as well as our church family. What a blessing it was to have ALL of us there and it was wonderful seeing Max fit right back into life with no issues. We pray this continues as we get further down this path of battling the cancer. 

Max has low bloodwork numbers, which is what we expected given last week was 3 treatments in 24 hours. The doctor wanted to do a blood transfusion, but given Max is not showing signs of issues, like headaches or being lethargic, they agreed to proceed with chemo without it and retest blood in the morning. Given this is also the last treatment for 2 weeks, Max will have time to recover before he potentially has to receive chemo again. 

Cincinnati called and scheduled a virtual appointment for Thursday afternoon so we will find out the plan with surgeries and chemo treatments going forward. At this point, after today, we are done with the treatment they had discussed with us prior so we know none of the next steps until Cincinnati updates us on it. We pray we have clarity on Thursday. 

Thank you for all the texts, phone calls, prayers, and support today and every day! We truly could not do this without you. We love you! 

-Amanda & Matt

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.”

‭‭Psalms‬ ‭27‬:‭14‬ ‭‬

Praise God for all that is good, all the time! In general, we have been blessed. Max is really only dealing with chemo side effects at this point, which is mostly nausea. We are on nausea medicine all week now to make sure he can keep food down and not throw up. But when we get past the worst of the nausea, he has energy. He can run around outside. He can walk into the hospital carrying his backpack like normal and we are so grateful for those moments. We were able to see our fire family this week, as well as our church family. What a blessing it was to have ALL of us there and it was wonderful seeing Max fit right back into life with no issues. We pray this continues as we get further down this path of battling the cancer. 

Max has low bloodwork numbers, which is what we expected given last week was 3 treatments in 24 hours. The doctor wanted to do a blood transfusion, but given Max is not showing signs of issues, like headaches or being lethargic, they agreed to proceed with chemo without it and retest blood in the morning. Given this is also the last treatment for 2 weeks, Max will have time to recover before he potentially has to receive chemo again. 

Cincinnati called and scheduled a virtual appointment for Thursday afternoon so we will find out the plan with surgeries and chemo treatments going forward. At this point, after today, we are done with the treatment they had discussed with us prior so we know none of the next steps until Cincinnati updates us on it. We pray we have clarity on Thursday. 

Thank you for all the texts, phone calls, prayers, and support today and every day! We truly could not do this without you. We love you! 

-Amanda & Matt

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.”

‭‭Psalms‬ ‭27‬:‭14‬ ‭‬

Thanks be to God Max was able to come home! Usually, they require him to not be throwing up but this time, they discharged him without worrying about that, knowing he will be better at home away from the hospital. He happily opened a few gifts and got right to work building his new legos and almost seemed back to normal for a bit! He was so tired he fell asleep sitting up in the chair but thanks be to God because his exhaustion made him sleep through the night with no issues!  Now we start today trying to get him through the last day of nausea and still keep some food in him so he can continue to gain weight and help his nutrition get back up before doing this again Monday. Prayers he’s able to keep down some good food to get his bloodwork numbers back up would be appreciated. 

Thank you for all the birthday messages today! Matt and Max say thank you and are grateful they were able to spend their birthday evening had at home! We couldn’t do this without you and we love you!

-Amanda & Matt

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

‭‭Jeremiah‬ ‭29‬:‭11‬ 

Happy Birthday Max!! Hard believe you’re 8 and you have already experienced so many things in life that many adults can’t even say they have lived through! You are such a blessing to our lives and we are so grateful God decided we needed to be your parents in this life 🙏

Thanks be to God for the many blessings we can still see in our lives amidst the chaos of cancer. Like family and friends that will step up and do anything to support us in this season so we don’t have to face this battle alone on Earth. Like Max gaining 2.5 lbs over his break and avoiding a blood transfusion yet again!  Like Max celebrating his birthday today with the best possible attitude of being thankful and grateful for these and many other blessings we enjoy. Thanks be to God for the Grace to see these many blessings amidst this suffering 🙏 

Chemo started yesterday with the 2 doses at 3:30 in the afternoon. The doctor was happy with his bloodwork so we proceeded with no delays as soon as Max passed the hydration test. Dr. Cramer sat down with Matt and was able to go over several details. First, the Cincinnati team will be reaching out in the next day to schedule the appointment they promised, since we’re still waiting on that and a lot of questions will be answered by them. Second, from what they have discussed, the plan has shifted quite a bit. Because the liver tumor isn’t reacting as quickly as they had hoped, they will be splitting up surgeries. Max will have to travel to Cincinatti for a surgery to take care of the tumor on his lung first. And then we will have to go back later to take care of the liver. The reason the team is now talking about a liver transplant is because this type of cancer is aggressive and most often comes back, even if we get it all taken out via chemo and surgery, the odds are good it will return. So Cincinnati is preferring to just take the whole liver out and give Max a new one to start fresh and decrease the odds that the cancer will return. We are in the arms of Jesus and do not walk through this alone. And are eternally grateful He does not leave us alone to deal with all the suffering.  God is good all the time so we have faith and we trust He will take care of us throughout this whole process. And we are grateful that the suffering we endure in this life is nothing compared to the glory that awaits us in heaven! 

Max has one more chemo treatment today at 3:30pm then hopefully he will be able to come home soon after that to recover at home before we do it again in 6 days. Prayers appreciated for Max to have relief from nausea enough to keep down some calories and nutrition that will make him stronger to do this again so soon 🙏

Thank you for the prayers, donations, calls, texts, food, meals, etc that you all have sent our way to help us to know we are not alone in this. Thank you for being the arms and feet of Jesus in this world! We could not do this without you and we love you all ❤️

- Amanda & Matt

“I consider that the sufferings of this present time are as nothing compared with the glory to be revealed for us.”

‭‭Romans‬ ‭8‬:‭18‬ ‭

All glory to God for all in our lives! We are only given what we can handle and we know our God is a just and good God that only uses suffering to help us increase in grace and virtue. Lord - give us the strength for the next step in this plan. 

The scan had mixed results we found out this afternoon. First, Max will be doing a third round of chemo starting Monday. This third round looks a little different in that he will get 2 treatments on Monday and 1 treatment on Tuesday, then another treatment a week from Monday. Then we’ll do scans and reevaluate again in 3 weeks.

The team in Cincinnati will be setting up a video appointment with Matt and Amanda to review options for surgery, including a liver transplant. The tumors on the lung and one side of the liver decreased but a tumor on the other side of the liver stayed the same or increased. So we’re guessing they are exploring options in case a transplant is necessary when we get up there. But we will find out more at the chemo appointment Monday with our doctor here on what the Cincinnati team is relaying. 

Max is actually happy Cincinnati was delayed as he is very nervous about that trip so he has a great perspective going into Monday’s treatment!  We pray he keeps this positive attitude into the next 2 weeks of treatment. Prayers for Matt and Amanda to lean on our Lord when making decisions in the next few days so they follow His will and lean not on their own understanding, but in everything, pray. 

Thank you for the continued prayers and support! We are so grateful you are all with us on this journey, however long it takes to get to the end of it. We love you!

-Amanda & Matt

“Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God.”

‭‭Philippians‬ ‭4‬:‭6‬ ‭‬‬

Thanks be to God we were successful tonight! The radiologist was even on standby and signed off on them before we left so we did not have to return again. The tech was one of the experienced techs and did a great job limiting Max holding his breath for longer than 13 seconds. Max did great! It helped that he was there before and Amanda figured out the timer so she could count down for him while he was holding his breath. Thank you for all the prayers!! They were definitely more well prepared for us tonight and Max was much calmer than before. It may have helped that we bribed him with building a new Mario Lego set if he was successful 😊 Incentives always help and Max is happily building his Lego set already!

Now we wait for the phone call with the decision tomorrow. Prayer appreciated for strength and patience while we wait.   Father - Thy will be done. 🙏

We love you! 

-Amanda & Matt

“Jesus does not demand great actions from us, but simply surrender and gratitude." -St Terese of Lisieux 

Everything happens for a reason. We may not always know that reason, but our faith tells us we trust our Father that the reason is for the ultimate good. So we trust. The MRI images from Monday night were not good enough to do a proper evaluation by the team in Cincinnati. So they are fitting us in tonight at 6pm after their schedule is done so we can get the last half of the images redone. Dr. Cramer informed us they will wait to make a call after the updated images and expect a phone call tomorrow with the decision. But he did share that the chemo is doing its job and the tumors are reduced, so he was excited to see that progress! 

Prayers for Max to remain calm tonight and not get too upset, which is what made the images hard to obtain on Monday. Hopefully, since this is not the first time anymore, he will know what to expect and be ok sitting still and holding his breath. We have been practicing already and he can go for a whole minute so God willing, his nerves won’t prevent him from doing his best 😊

Thank you for the continued prayers and support! We couldn’t do this without you! We love you! 

-Amanda & Matt

“We know that all things work for good for those who love God, who are called according to his purpose.”

‭‭Romans‬ ‭8‬:‭28‬ 

Thanks be to God for Max making it through today’s CT scan and MRI without anesthesia! He was very brave with the MRI and had to do about 45 minutes, holding his breath for 10-15 seconds at a time, to ensure they were getting clear photos. He did well enough that he does not need to come back! So now we wait. The scans will be sent to Cincinnati Children’s Hospital surgeons and they meet Tuesday’s to review all the cases so Max’s results should be reviewed by them tomorrow. The doctor assured us we would get a phone call from him on Wednesday with the plan based on Cincinnati’s review. We’ll either proceed with chemo starting on Monday for round 3 or be planning a trip to Cincinnati for surgery within the next week. 

Continued prayers for healing are appreciated! The doctor continues to be amazed at how well Max is doing and even got Max to smile today, which the doctor and nurse loved to see. We will take advantage of this week off of medication to continue putting good nutrition into Max to build his strength and body back up. We also pray that God gives us the wisdom and points the path of anything else we could be doing to help Max heal as much as possible before the next step. And God gives us the grace to deal with whatever the next step may be 🙏

Thank you for the prayer and support! We could not do this without all of you! We love you!

-Amanda & Matt

"Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace, then, put aside all anxious thoughts and imaginations, and say continually: 'The Lord is my strength and my shield; my heart has trusted in Him and I am helped. He is not only with me but in me and I in Him.'" 

-St Francis de Sales

Thanks be to God today was back to normal! Those 4 chemo treatments in 7 days really were rough on Max this round because even yesterday he was getting sick. Today is the first day he made it without throwing up any food or smoothies he was able to get down. Thank you Jesus for the relief finally! Since Max’s bloodwork appointment was canceled for tomorrow, he will be enjoying hanging out at home and the next hurdle is Monday mornings scan to see the size of the tumor. We are praying for a miracle still, if it’d be God’s will 🙏 Monday is our next step. So the rest of this week and weekend, we get to focus on getting Max some strength and nutrition back! Thank you everyone for your prayers throughout all of this. We’re still standing after the last 2 months and we know it’s not from our own strength 🙏 we love you! 

-Amanda & Matt

“Praise the Lord, my soul; I will praise the Lord all my life, sing praise to my God while I live.”

‭‭Psalms‬ ‭146‬:‭2‬ ‭

All glory to God because we had a miracle this morning! God intervened to get Max home to heal ❤️🙏

Max spent most of the night and morning sick this time. He couldn’t even keep water down. This usually means they will not let him go home until he can at least keep water down for an hour. With his numbers being so low, we were also told we’d have bloodwork in the morning and then decide when he needed the blood transfusion.  Matt spoke to the nurses that indicated it is common for kids with cancer to start associating the hospital with being sick and actually start throwing up before they even start chemo just because of the stress and association of getting chemo there over time. Well, his bloodwork came back at the same levels as yesterday so there was no improvement. Yet, the doctor came in this morning ready to discharge Max. He said there was no need for a blood transfusion today and they will be canceling Thursday’s bloodwork appointment as well. And he wanted to make sure Max got home as soon as possible to start recovering. We have no explanation. The numbers and evidence all point to a long day at the hospital today. But Max and Matt were home by noon thanks be to God!! And thank you for all the prayers!!! We’re still stunned that’s how the morning went 😊 

Max asked for pasta the second he got home and he happily played with toys and ate spaghetti with no issues. He’s napping now as he didn’t sleep much last night but he hasn’t thrown up since he got home! Prayers appreciated that he’s done being sick now that he’s home and we can start building his strength back up with good nutrition to recover from the last 3 weeks of chemo. 

As of right now, our next goal is the 22nd, which is the CT scan to check the tumor size and figure out our next step. If chemo is needed for one more round, we will start that on the 29th so Max gets at least a 2 week break! We’re excited at how much better he can get with 2 weeks off as opposed to how well he did with just a 1 week break! 

Thank you for all of the prayers!! God is working miracles and we’re so blessed to witness it ❤️ We love you all and couldn’t do this without you! 

-Amanda & Matt

“Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.”

‭‭Proverbs‬ ‭3‬:‭5‬-‭6‬ ‭

All glory to God, the Father, whom all good comes. We know that in the end all things work for the good of those that are His children. But in the middle of suffering, this is so hard to remember. So we walk by faith. Trusting every step that He is watching out for us and directing every step so we end up where He needs us to be. And we remember we are not alone in our suffering. 

Max started chemo at 4pm and should be done soon. But his numbers dropped. By a lot. To the point where we are talking about a blood transfusion tomorrow or at Thursday’s appointment , depending on how the morning numbers look. He has struggled this week after those 3 chemo treatments in 24 hours to get his smoothies in or even eat as much as he needed to. And Max’s stress level is just through the roof because he just hates that hospital. Not that we blame him….home is much better for healing. But we know we are right where we are supposed to be. So the update tonight is for prayer requests. Pray that Max is able to have minimal nausea to keep most of the food in his stomach and get some decent sleep. Pray that his numbers don’t drop too much that we’ll be able to postpone a blood transfusion to Thursday to give us time to get him the right foods for recovery. Pray that Matt and Amanda are guided on the right path for what Max needs. Thy will be done Father 🙏 and Pray that the whole family is given the grace to accept whatever the next step is in this process. 

Jesus, we surrender ourselves to you. Take care of everything. 

We love you all!

-Amanda & Matt

“God had one son on earth without sin, but never one without suffering.”

-Saint Augustine of Hippo

Thanks be to God for almost being done with 2 rounds of chemo. This whole process has been the slowest but at the same time, we blinked and 2 months have passed. In fact, it’s been longer than that since chemo didn’t start until week 2 of being in the hospital. 

Max will receive his final dose of round 2 sometime this afternoon, after he passes hydration tests and gets his bloodwork back. He had a rough recovery last weekend getting 3 treatments in 24 hours so it wasn’t until Tuesday he felt somewhat normal in order to get proper nutrients in to prepare for today. Prayers appreciated he is well enough to just receive this last dose of chemo and we can focus on him getting ready for the next steps of bloodwork and scans.

We pray for the strength for Max this weekend to make it through this last chemo of the round before he gets at least a week break. We pray he is granted the grace and wisdom from the Lord to bear this cross, however long he is asked to. We pray for wisdom for Matt and Amanda to know which path is God’s will, as future plans will be made in the next week that will determine the path Max will take. 

Thank you for the continued prayers and support! We are so grateful for this wonderful community that continue to keep Max at the top of prayer lists. God is moving and we see it first hand every day! 🙏 

We love you! 

-Amanda & Matt

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”

‭‭Isaiah‬ ‭41‬:‭10‬ 

Forgive me for the delay but it has been a busy 24 hours so I’m behind my updates! Thanks be to God Max was able to make it home yesterday!! He had his 3rd chemo treatment of the visit at 4pm Saturday and was home by 8:30 that night! What an amazing surprise. He has struggled this weekend with that many chemo treatments so Friday night was rough and he got sick a few times. Saturday he just generally did not feel well. And today he spent most of the day catching up on sleep. But this is the first time he had these treatments while getting to come home. Last time we were still in the hospital for those first few weeks.  God willing, this will be the last time we have to do this combination and number of chemo drugs. Next week is just the normal one dose that takes 6 hours. Prayers appreciated that tomorrow is a return to normal for Max so we can work on building up his strength and filling him up with good foods to get a boost before going in again on Friday. 

Our family was blessed by a recital benefitting Max at our church in Camden and oh my, did they bless us. The music was fantastic. There were prayers and blessings for our family. There was a reception after with food and drinks and a prayer blanket for people to do knots when they said a prayer for Max and folks left notes and donations. It was wonderful. I said it last night, but I’ll echo it again for those of you that were unable to hear it then that the love that has been directed at us is unimaginable. What a gift. Scripture tells us to share each others burdens and every one of you that has lifted us up with prayers, meals, donations, cards, groceries, or Christmas gifts has shown us that God is not far. What a testimony to His love. What a blessing to be the supported by such bright lights of God’s children. Thank you doesn’t suffice but just know you are making a difference. Not just in Max’s life but his family’s as well. And in all the lives around us that see the kindness and generosity directed to our family and to Max especially.  Our world needs more light….thank you for being a part of it! All glory to God for His kingdom! 

We couldn’t do this without you! We love you!

-Amanda & Matt

“Share each other’s burdens, and in this way obey the law of Christ.”

-Galatians‬ ‭6‬:‭2‬

 "Christ has no body now, but yours. No hands, no feet on earth, but yours. Yours are the eyes through which Christ looks compassion into the world.Yours are the feet with which Christ walks to do good. Yours are the hands with which Christ blesses the world."

-St. Teresa of Avila 

Praise the Lord in all times! And thank you Jesus for giving us good news to share! Max went in this morning for his next chemo treatment and his bloodwork came back all in normal ranges.  Not only that but the numbers that typically decrease with chemo treatments (which he got last week), such as red blood cells or hemoglobin, went UP. What?!  His numbers improved after he had a chemo treatment last week?! I cannot believe or explain it either except to say thank you Jesus for another little miracle!  And thank you everyone for all the prayers! Keep them coming 🙏

Our sweet boy is a champ with all the diet changes we’ve been asking of him and went into today as strong as he could be. He had 2 chemo drugs today, that started this evening around 5. He’ll have one more chemo drug in the morning, then he’ll get another 6 day break. We’re expecting him to come home on Sunday since tomorrow is also a chemo day, but the doctor said we’ll see how he handles it in the morning before making a decision on tomorrow or Sunday. Max has spent the day working on a new Lego set so he’s ready for whatever the plan may be! 

Prayer requests for tonight include being able to control Max’s nausea so he may come home as soon as possible.  Prayers also for a good night’s rest for both him and Matt, who is manning the hospital shift.  

Thank you for all the prayers, support, calls, texts, and in person hugs. You have kept us going through all of this and we couldn’t have done it without all of your support! If you are local, please come join us for a Cancer Benefit Recital for Max that our church has organized. I would love to thank each of you in person if possible Saturday night at 6:30pm at 1709 Lyttleton St, Camden, SC 29020 ❤️

We love you! 

-Amanda & Matt

Thanks be to God we made it to a new year! Another day, another holiday gone. It seems like time is flying yet moving so slow. We blink and it’s been over a month since Max’s diagnosis, but we still want to jump ahead to when all this is over, whenever that is. But we keep ourselves in the present, only looking as far as today, to avoid getting overwhelmed. 

Max is back to his normal self 😊 It is amazing how quickly that switch flips from chemo and he goes from bad to amazing so quickly. He was asking for food every hour or two today! We’re still focusing on low carb low sugar diet….smoothies are the best way to get him that. And thanks be to God he likes them!  Now we will work on making sure he gets a lot of nutrients into him before Friday in anticipation of the next weekend. He had a chemo treatment Friday and Saturday both this weekend so he will probably be in the hospital until Sunday. Although, per usual, we play it by ear and don’t make many plans. He is a little nervous about the extra day, and he is already starting to think about Ohio and what will happen there. It is very difficult to give enough information to a 7 year old to satisfy all the questions but still keep it light enough that he can’t have expectations because we know very little at this point about the timing of all of this. We also are starting to look into other clinical trials that Max is eligible for just as a maintenance for his cancer. We have only one option we’ve found so far. It seems Max’s rare type of cancer does not have many options.  At this point, we give it to God and let him handle it so we can continue to live in the present and not stress and enjoy today’s wins of being able to eat normal again! 

Prayer requests for tonight: that Max is granted the grace to know his suffering is not in vain. And he is given the grace to carry this cross as long as God is asking him to without letting his faith fall. That Matt and Amanda are granted the wisdom to know how to best help Max after the next few weeks. That all of Max’s medical staff are granted the wisdom to best treat Max to heal him with all glory to God! 

Thank you for all the prayers and support for the past month. We could not do this without you! We love you! 

-Amanda & Matt

“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.”

-‭‭Matthew‬ ‭6‬:‭34‬

Praise the Lord always! No matter the circumstances.  But thanks be to God today we truly have a joy to celebrate! Max’s bloodwork yesterday, which was pretty bad the week before, improved enough over the past week to avoid a blood transfusion! Thank you Jesus! The last week of a break from chemo has been amazing for Max. He had his full appetite back. He had zero pain! He was busy building legos and playing with siblings and laughing at Dad just like normal. What a joy it was 😊 and to have this good news yesterday was another wonderful joy! Between that and the doctor being so surprised at the good progress Max has been making and how well his stomach felt, we can just thanks be to God for all the good today! 

Max spent the day being hydrated again in anticipation of chemo. Chemo started at 4:15pm yesterday and continued for 6 hours. Amanda delivered dinner for Matt and Max as the hospital food really doesn’t have much to offer when we’re trying low sugar and low carbs. Max ate normally and got to rest. Around the middle of the night though, he started feeling really sick. The nausea watch had run out of batteries and the medicine from the hospital really doesn’t touch the nausea from chemo. So last night was a struggle until Amanda delivered breakfast and batteries this morning and he was able to keep enough down to be cleared to come home around noon today. He has only managed to eat a yogurt, he still just feels so weak and sick. But home is better than the hospital for healing. 

Schedule wise, Max has chemo scheduled for Friday/Saturday this next weekend, then Friday the week after and we will have completed round 2 of chemo! The doctor stated we will do the scans around the 15th so we can get a clear view of our progress then the surgeons in Cincinnati will let us know if he’s ready to be operated on or if he needs one more round of chemo. So for now we focus on finishing this round of chemo and we give all of our anxiety to God to deal with on any plans beyond that. Living in the present is truly a blessing during a time like this. 🙏 

Please pray for Max to have relief from the nausea so he can get back to good food to try to help heal his body. Pray for Amanda and Matt to have restful sleep tonight to help tackle the next few days of sickness. And grace for Aurora, Anna, and Memphis to understand that even though normal is not here, they are still loved and cared for as children of God. And as always, pray for miraculous healing for Max 🙏 

Thank you so much for the continued prayers and support. We couldn’t do this without all of you. We love you! 

- Amanda & Matt

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

-‭‭Philippians‬ ‭4‬:‭6‬-‭7‬

Thanks be to God for the wonderful last few days of Max feeling zero pain and having an appetite to eat as much good food as possible! He is going into the hospital in so much better shape this round than he ever was at any point last round. We have a few updates already this morning! Dr Cramer was very impressed with Max and how good he is doing and the fact that his stomach already looks way better! God is already healing Max 😊 the next scan will be scheduled the week of January 15th after this next round of chemo. We will see how it looks then. 

Max was denied for the clinical trial in Cincinnati because the doctor here opted to do the embolization. Given the liver bleeds when dealing with cancer, it was the best avenue for Max and we’re happy the doctor opted to take that route. Children’s hospital in Cincinnati surgeons are still following Max’s case and will still be handling surgery. He just won’t be in the trial with them. 

Prayer requests for today: Max’s bloodwork and hydration levels to be in acceptable ranges to be able to start chemo as soon as possible. Max to be able to handle the nausea that will be following the next few days. And for Matt and Amanda to be guided on the right steps in treatment from the various sources that are working on healing Max. Thy will be done Lord 🙏 

Thank you for the continued prayers and support! We love you all!

- Amanda & Matt 

“Blessed is the crisis that made you grow, the fall that made you gaze up to heaven, the problem that made you look to God.”

- Saint Padre Pio of Pietrelcina

Merry Christmas!! What a wonderful week it has been with Max and the Stephen family we have just been taking the time to enjoy it 😊 Thank you for the continued calls, texts, messages, and most importantly prayers for Max during this holiday season! God’s love is everywhere; all we have to do is look around to see. ❤️  We are so grateful God had surrounded us with such a wonderful, supportive community! The children were given an extra special holiday this year, complete with a visit from Santa to help cheer everyone up. We are speechless when trying to find the right words to say thank you so to all that sent gifts, donations, or actually shopped for gifts and wrapped presents.  Please know that our children were so excited this morning and even overwhelmed with how much they were loved today. Thank you and may God Bless you all! 

A small update on Max is that he had an appointment on Thursday to get blood work done and came right home. All of his numbers came back very low. Hemoglobin, white blood cell count, red blood cell count, even electrolytes were low. The staff was surprised we hadn’t been back because of Max having a fever given how weak his immune system is. Thank you Jesus for sparing him sickness so we could enjoy Your birthday as a family! But that means we are not really going out and enjoying many visits.  Max has taken his week off from chemo wonderfully though. He finally had an appetite back!! It is taking all of my time to make him good food every hour he asks to make sure he’s getting the right mix of nutrients that will help increase his numbers. We pray it helps give him a good boost before going back in for chemo on Friday. He’s up to 2 adult size smoothies a day! On top of food! What a blessing to have him actually eat Christmas dinner with us. 😊 

We hope you and your families had a wonderful Christmas celebrating the birth of our Savior Jesus Christ! As His children, we hope we can deliver light to the darkness of this world 🙏 Remember the reason for the season and spread light and joy to those around you!  Merry Christmas! We love you all!

- Amanda & Matt

“Dearly beloved, today our Saviour is born; let us rejoice. Sadness should have no place on the birthday of life. The fear of death has been swallowed up; life brings us joy with the promise of eternal happiness. No one is shut out from this joy; all share the same reason for rejoicing. Our Lord, victor over sin and death, finding no man free from sin, came to free us all.”

-Saint Leo the Great

Praise Jesus!!  Yesterday was a memory of the days months ago when our family could go and do. Except this time, an outing and an errand brought exponentially more joy! Thanks be to God always.  In this current state of life, we must give thanks for the blessings. If only to keep from drowning in the rotating door of problems, fears, concerns about the future. We can only choose to focus on what we can control, which is very little. And in all else, give it to God because He promises to deliver us. 

Max woke up, brought himself downstairs and got breakfast and milk and decided to tell us he felt like going bowling. What?! Bowling?! Matt and I figured why not, schools are still in session so it couldn’t have been too crowded. We went bowling. And man, was it fun! Max only bowled about half the frames and used the dinosaur ramp to bowl so he wasn’t picking up or throwing the ball. Just the act of walking back and forth from the bench to the lane was more than he’s done in a month! Then after bowling, he decided he wanted to play in the arcade and drove a car and motorcycle. Matt won the kids some bouncy balls and Max walked out of that place standing straight, holding his new ball, smiling and laughing and it was the best 😊 Then we came back home, had lunch, Max had his smoothie, and we headed back out to drop some stuff at the thrift store and decided to let the kids shop for each other for Christmas gifts while we were there! Max picked out gifts for his siblings and only sat down at the end since his sisters took so long to make their choices lol. Then we went home and had a wonderful dinner. Max stayed up the whole day, laughed, joked, and almost seemed normal. Boy was he tired by the end of the day lol but what a blessing. Thanks be to God!!  It was a wonderful break from the “norm” the past month of hospital visits, doctor’s appointments, medicine and side effect management from said medicines. 

Back to our new normal, Max had a hearing test on Monday and was told all was good. Which is great because now we know when he doesn’t hear us, it’s selective hearing 😉  We’ll also know if the chemo negatively affects it now, as hearing loss is a side effect of the chemo. He has an appointment tomorrow morning at the hospital to get blood work done to make sure everything is in normal ranges during his “off” week from chemo. It will just be lab work then coming home. Then we’ll enjoy Christmas until he has to go back on the 29th for this next chemo round. In the meantime, we’ll focus on good nutrients to try to get him back up to where he was before chemo and the hospital and God-willing, he can gain some weight back before he’s back to fighting to keep any food he does manage to eat down again. 

Our family cannot thank you enough for all the support and love you have showed us the last month. We are amazed at how far and wide Max’s story has gone and how many blessings God has delivered to us through all of your prayers, donations, meals, chores, taxi rides for activities that continued while the rest of our lives have been on pause.  Thank you Lord for focusing our attention on the endless blessings at the moment 🙏 

We love you all! 

-Amanda & Matt

“I will bless the Lord at all times; his praise shall be always in my mouth. My soul will glory in the Lord; let the poor hear and be glad. Magnify the Lord with me; and let us exalt his name together.”

‭‭Psalms‬ ‭34‬:‭2‬-‭4‬ 

Thanks be to God for a short hospital stay this time!! God knew Max needed to be home. Max was so stressed going in….which we get since the last time he just went in to get checked out, it started 3 weeks of tests, awful medicine, being sick and not sleeping. Max was so happy to come back home and even asked for some food last night! Usually it’s not until day 4 (Monday this time) that he feels ok enough to eat. So we took it slow with some yogurt and a smoothie and he kept it down and didn’t throw up all night! Thank be to God for the quiet, uneventful night.  We are also thankful that he is still not on pain medicine and doesn’t seem to be complaining about pain anymore!  So many things to be thankful for….it makes the harder days easier to handle when we realize how many blessings we have. Like the fact that Max’s diagnosis means our time at home as a family is just that….no activities to keep up with, meetings to go to, events to attend. We just get to be….to enjoy each other. I pray everyone takes time this season to do that. There is a lot of healing in just being together. 

Thank you for all of the support and prayers especially during this season in our lives. We couldn’t do this without all of you! We love you! 

- Amanda & Matt

”Brothers and sisters: Rejoice always. Pray without ceasing. In all circumstances give thanks, for this is the will of God for you in Christ Jesus.”

- 1 Thessalonians 5:16-18

Thanks be to God for the beautiful few days we’ve had! We were able to get Max outside and Christmas decorations up outside! Today, Max is supposed to come home and it will be a wonderful day to bring him home. 

Last night was hard. Max’s chemo treatment started at 5pm after he cleared the hydration test. He didn’t feel up for eating yesterday or last night. He threw up this morning early around 3am because the nausea bracelet we had received had to be taken off to clean him off. He had an accident because he was so tired from the anti nausea medicine, he didn’t wake up in time to get to the bathroom. The amount of suffering Max is enduring throughout all of this is so difficult to watch…..helpless doesn’t begin to describe it as a parent. But thanks be to God that He is with us. That He is in control. And we can trust that in His plan all things work for good for those who love God! 

Today’s plan is to never take off the nausea bracelet as it appears to be helping so far 😊 Max will receive a nebulizer treatment of antibiotics as a precautionary. In the past he had pills that he could not keep down. So that should improve. He’ll be able to take that home and as of right now, he’ll only be on that and the anti nausea medication. 

One of our small wins we have to share is Max is off pain medicine! The tumor must be shrinking in order for him to no longer have the awful pain that had us bring him to the ER in the first place so thank you Jesus for the pain relief! We are not due another scan until end of January, so until then, we’ll pay attention to symptoms and assess accordingly. 

Thank you so much for the continued prayers and support sustaining us throughout this whole thing. What a season. But the amount of LOVE being directed towards us from all angles and even people we don’t personally know is nothing short of miraculous and shows us that He is with us every step of this process. 

Prayer intentions for the day: that we may finally have the nausea under control enough to get Max some calories so his body can have energy to fight back. That the medical team be directed to the right path of medicine that will help heal Max. And that Matt and Amanda be guided by Him through every decision that they are making to ensure they are following His will. 

Thank you all! We love you! 

- Amanda & Matt

“We know that all things work for good for those who love God, who are called according to his purpose.”

‭‭-Romans‬ ‭8‬:‭28‬ ‭‬‬

Thanks be to God for the last few days of normal! As normal as we could get anyway 😊 it has been wonderful having him here to sit down for dinner, do family movie nights, play games, and dance to Christmas music like nothing had gone wrong the last few weeks. But we press on after our few days of reprieve. 

Max is still battling nausea and actually wanting to eat. We’re trying to figure out how we will adjust our diets so to give him high protein and high fat content so he can gain some weight but it needs to be easy enough on his tummy. It’s a battle daily but one we are hoping we’ll solve soon! 

We had a big milestone today! Max got his haircut in anticipation of his hair falling out in the next few weeks. Matt of course joined him 😊 Max is more concerned about how long it will take the grow back but besides that, thankfully didn’t mind too much. Here’s a picture! 

Tomorrow morning, Max will go back to the hospital at 9am to start IV fluids and chemo #4 once he’s hydrated enough. They will be admitting him so he will at least spend one night there, maybe 2. But assuming all goes as normal, that should be all. And then he gets a break until December 29th so we’ll be able to enjoy celebrating Jesus’ birthday! 

Prayers for tonight: that God grants us the wisdom to know how combat Max’s nausea and find foods that will give him strength but not be too much for him. That chemo goes as well as it can and for Max to handle it better than last time. That Max is granted the grace to know his suffering has a purpose so he can be positive and strong throughout all of this. That Matt and Amanda are given the strength to continue to be present for Max and his siblings, not worrying about the future, but giving it all to God so they can enjoy the present. 

Thank you for all the prayers, texts, phone calls, emails, donations, dinners, and hugs that we have received. We are so grateful for all of you! We love you! 

-Amanda & Matt

“The endurance of darkness is the preparation for great light.”

- Saint John of the Cross

Thanks be to God for having us all under the same roof again. It is amazing how much of a joy the little things are when you’ve been missing it for 3 weeks! We even missed Thanksgiving as an opportunity to celebrate what we’re thankful for every day but I’m sure our list will be a little different now that we have had these 3 weeks away from each other. Perspective is a wonderful thing to be thankful for….hard times bring the most joyous occasions afterwards because we learn to appreciate every single little thing. Like having Max sit at the dinner table with us. Both Matt and I being home at the same time. Aurora and Max playing with legos. Max laughing at Memphis and Anna playing. Grandma getting to read stories to everyone. What a wonderful evening. Thank you God for giving us a renewed perspective so we don’t take any of it for granted. 

Max was able to successfully receive the third treatment of chemo late Saturday night. They stayed on top of all 3 kinds of nausea medication and he woke up Sunday morning not doing too bad. So they started the process if trying to get him home in the morning and it took all day until 4:45 when they were finally heading back home!! 

Max will have to return to the hospital to stay the night Friday when he has his 4th and finally chemo treatment for this cycle. He will get one week off then we’ll be back again the last week of December for treatment #1 for the second round of chemo. We’ll live one day at a time for a bit but perspective, we are thankful for that one day, every little joy that we can find.  Thank you all for the support and the prayers!! We love you all! 

-Amanda & Matt

“So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

‭‭2 Corinthians‬ ‭4‬:‭18‬ ‭

Praise Jesus because Max is home!! I will update everyone on the plan tomorrow but tonight we’re enjoying the whole family being under the same roof! We love you all! 

What a past 36 hours but thanks be to God always because we are here to be a light in the world another day!  I have been unable to access the website since yesterday afternoon until this afternoon when I was able to check so I’m behind on updates and a lot has happened. Please forgive me for the long update today 😊 

Max ended yesterday strong! But he was not hydrated enough all afternoon to be able to get chemo done. Then it was close to shift change so it had to wait until after. Then there was a consent form missing…..oh the delays. BUT Matt finally got it sorted out to get Max his second chemo last night at 11pm. The second and third treatment need at least 24 hours between so the earliest he’ll be able to get his third treatment will be tonight at 11pm. 

This morning started well! We got to FaceTime with Max and he spent most of his time asking what everyone was doing, or to see the cars Memphis was playing with, or the pictures the girls were coloring. You can tell he just missed being around all of us, chaos and all. Because even after he stopped asking questions, he got out letters and was quietly playing while the chaos continued here, almost like he was already here and just settling into his routine 😊 Needless to say, we cannot wait to have him back home.  But, at the moment, we are exactly where God needs all of us to be ❤️ 

Max started to feel bad this afternoon. He had a PT appointment today to help him start moving, and didn’t do that much since he didn’t feel good. I’m not sure why PT was scheduled for the day after a chemo treatment but I digress….since then though, he’s gone downhill. He is no longer able to eat. Everything comes back up again, including the nausea medicine and pain medicine. And he somehow has to stay hydrated for tonight’s chemo to be signed off on. I’m failing to see how this will all work, but our God has performed many more difficult miracles so I’m praying it is His will to relieve some of Max’s suffering to be able to get this third chemo treatment done so he can come home. Patience hasn’t ever been my strength though, which is why God offers me many opportunities to work on it. 

PET scan results have been returned and according to the doctor, there are no additional areas of cancer we need to worry about so it seems to be only the live and lung we know about already, thanks be to God! 

Prayers for tonight: For the medical staff to be granted the wisdom to treat Max as he needs to be treated and know when they can’t push him anymore. For Max to be relieved of his nausea enough to keep hydrated so he can have this next chemo treatment and come home to us. For Matt and Max are able to get enough rest to make it through another day of after-effects of chemo.  For the entire family…that our perseverance is rewarded 🙏

Thank you so much for the prayers! We love you all!

-Amanda & Matt

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”

‭‭James‬ ‭1‬:‭2‬-‭4‬ 

Thanks be to God Max handled the fasting last night and today, ambulance ride, and PET scan like a champ, completing all of it successfully! He is so strong and we are so proud of how he’s handling this complete change in life….what a blessing it is to watch him beat negative words in his head and still be able to joke and ask questions. We finally have our curious Max back lol soooo many questions. He’s always thinking! 

He got disconnected from the IV and the port and even got to have a shower this afternoon! That’s the first shower since being in the hospital 2.5 weeks ago….and he was enjoying laying any way he wanted in bed without worrying about which tubes were stuck or pulling. It’s the little things 😊 Thanks be to God we have so many little things lately to celebrate!

Tomorrow, we should find out the results of the PET scan that will tell us if the cancer has spread anywhere else in the body. Max will also start his second chemo treatment so they will start the day re-accessing his port then he will get treatment in the morning. He will have his third treatment Saturday morning. Prayers that chemo goes smoothly and we’re able to combat the nausea better this time after seeing how it affected him last treatment. Also would appreciate prayers for Max and Matt who’s staying at the hospital to get a good night’s rest tonight before the long 2 days that are next. 

Thank you for all the support over this journey! We love you all! 

-Amanda & Matt

“The secret to happiness is to live moment by moment and to thank God for what He is sending us every day in His goodness.” – St. Gianna Molla

Thanks be to God for a few days of positive changes. He knew we needed a break from the grind. Yesterday started with removing morphine completely and switching Max over to oral medicine in anticipation of us going home. While not as bad as last switch, this switch definitely wasn’t smooth. The nurses are having to figure out if pain is increasing too much or if Max is just crabby from not sleeping, or if it’s a combination of both. And if the oxycodon isn’t working like it should, we should reassess the medication. Max is having a hard time conveying these specifics too because he just doesn’t feel good and really just wants us to fix it. Like I said, this transition is better than the last time we did this 2 weeks ago, but still rough. For now, he’s managing but we’ll see how he wakes up in the morning. 

Today is PET scan day. Max will get to go on an adventure in an ambulance to another hospital to do the procedure and it shouldn’t take more than 15 minutes to do the scan. They will not put him under so we’ll pray he stays still or sleeps during so we can get a good scan before he comes back here. Matt will go with him and be there during the entire procedure, which should help keep him still as well. The scan is at 11:30 this morning so prayers are appreciated it all goes well. 

Friday and Saturday are still scheduled chemo treatment #2 and #3. And we’re still talking about being able to go home after #3 assuming Max improves after being switched to the oral pain medicine. 

Today’s prayer requests are for the PET scan to go well and for Max to stay still so he doesn’t have to do it again. For Max to handle the transition to oral pain meds and for them to help eliminate some of the pain that the tumor and his lack of movement are causing his little body. Laying in a bed all the time is not good for anyone, but especially a 7 year old boy. Prayers that God grants the wisdom to the medical staff to treat Max effectively and discern when medical intervention is needed or if in the case of pain, time is the best medicine for it reducing. And that  God grants Matt and Amanda the wisdom to know how to help Max and finally get him home so he can heal in a place he knows and is comfortable with and around people that love him. And as always, if it’d be God’s will, healing for our sweet boy 🙏 

Thank you for all the support and messages over the past several weeks. We couldn’t be more grateful for this amazing community God has surrounded us with!  We love you! 

-Amanda & Matt

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”

‭‭Philippians‬ ‭4‬:‭6‬ ‭

Praise Jesus Max had a wonderful day today! Having hard days, like we have been having, makes the good days seem even sweeter. It’s amazing what perspective does on our outlook isn’t it? Max went for 3 walks around the halls today. He hasn’t done that many since we came to the hospital 2.5 weeks ago! He sat up on the couch. He ate lots of good food, like yogurt and more of Grandma’s pasta. Matt and I are so unbelievably proud of him for persevering. Thanks be to God for delivering the grace Max needed and thank you to all of our prayer warriors and saints for interceding for us 🙏 

Max has almost weaned off the morphine, which has been an adjustment dealing with pain, but it means he’s one step closer to coming home by getting off that IV. He also is having his fluids reduced. The doctor was thinking Thursday we’ll be able to take the IV out, which would just leave the port for Friday and Saturdays chemo treatment. He does have a pet scan scheduled for Thursday so he’ll get to ride in an ambulance to another hospital for that in the morning. But those are the only items really left before we are able to head home!

I can’t tell you how amazing it is to see our sweet boy smile today, despite everything he’s being called to do. I figured that’s why I at least had to share this picture with all of you. This sweet smile is why we are praying without ceasing. And always giving thanks, no matter the circumstance. Because it is all God’s will and Thy will be done. Thank you for all of your support, prayers, sharing of our story to spread awareness, and any personal texts or calls this week. We’re so thankful for this community stepping up for our son and we could not be more grateful for it. We love you all! 

- Amanda & Matt

“Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus.”

‭‭1 Thessalonians‬ ‭5‬:‭16‬-‭18‬ 

Thanks be to God Max’s nausea subsided today!! He ate an entire plate of Grandma’s pasta! At this point, we’ve given up on hospital food in the hopes that Max’s appetite will return and his stomach will be happy with food it is used to seeing. So far so good! Thank you for the prayers!

Max also went for a walk today! He was able to walk down the hall to the snack closet and pick out his own snacks! That’s the first time he’s be able to do that in the past week….we’re so proud of how much he is pushing himself in the hopes of being able to go home this weekend! 

The doctor reduced the dosage of morphine again trying to get Max to be able to switch over to an oral medicine. They are hoping to make this switch sometime today so we’ll pray Max’s pain is controlled on the oral medication so he can get off the IV for a bit. Friday and Saturdays chemo treatment will still be IV but they can utilize the port. Right now he had to have his port and an IV line in his forearm. So, God willing, we can get rid of the IV in his arm today. 

So overall today was a great day but there is a lot of work for Max over the next several days. So this will be the hardest part for him….he’ll have to make himself walk. Make himself sit up. Make himself deal with a higher level of pain as we wean him off of the pain meds and into new ones. A lot of things that are uncomfortable and he will not want to do. God, grant Max the Grace to take these challenges head on and do so with love and a positive heart 🙏

Please keep Max’s siblings in your prayers along with Max to have the strength to deal with the challenges he will be facing. Please also pray for Max’s medical staff. That they are granted the wisdom to know how much they can push Max and any setbacks are addressed with whatever is in his best interest. 

Thank you for all the support and prayers! We love you! 

-Amanda & Matt

“May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use the gifts you have received and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones and allow your soul the freedom to sing, dance, praise, and love. It is there for each and every one of us.”

- St. Therese

Sorry for the delay! Matt graciously offered to take hospital duty Saturday afternoon - Sunday afternoon so I could go home and be with the other 3 children and set up Christmas decorations and attend church and dance rehearsal so it was a busy but much needed 24 hours! The other kids are starting to feel the difficulty of having both parents and their brother gone. My parents are doing amazing holding down the fort, but it’s finally catching up to everyone all the difficult changes and completely new life we find ourselves in.  I know this immense challenge has a purpose for each of us. It just may be awhile before we realize some of the fruits of this time. God, grant us the grace to patiently wait and trust that there will be fruits. 🙏

Max is not doing so great on days 2 and 3 of chemo. He hasn’t been able to keep anything down. The little food he is able to eat comes right back up when he has to take medicine. The doctor indicated we’ll give him an extra day to recover and he has paused some of the medication and not reduced the morphine dose yet, hoping by tomorrow (day 4), the nausea will subside. Max is on 3 different anti nausea medicines trying to help him but it’s not working too well. We’re told once he shows improvement it’s all downhill and quick return to normal from there so we’ll pray that starts tonight! Thank you to everyone that has talked to me about ideas to get Max to eat and to help with the nausea!! We’ll work on trying a few of those tomorrow. 

The plan to go home right now is to wait until after the next chemo treatments Friday and Saturday. So Sunday he would be able to return home. If Max can start feeling better, we can work on the goals of getting him off the morphine and onto an oral medication, walking and eating semi- normal meals. He’s already off of oxygen! One thing down, 3 to go!

Prayer requests today are for 2 things: for Aurora, Anna, and Memphis at home to have God’s grace to deal with all the changes at home. May He show them how much they are loved so they feel secure, no matter how chaotic it is out here. And prayers for Max to be able to start to feel better in order start eating and working on these other goals to allow him to return home! 

Thank you so much for all the support and the prayers 🙏 God bless all of you! We love you! 

- Amanda & Matt

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

‭‭Romans‬ ‭8‬:‭28‬ ‭‬‬

Thanks be to God for all the support, donations, love, meals, toys, gifts, and prayers that have held our family up since we started this journey. I could not be more grateful. Please know each of you are making an impact on our lives ❤️.

Yesterday went a little different than we expected, but at this point, we should know better than to have expectations! Everything changes is the best expectation to have with anything medical. Max received his blood transfusion with no issues yesterday thanks be to God! But then we had to change out his port needle (precaution to avoid infections), disinfect his room, give him a bath, and get him to drink enough water to not be dehydrated in order to start chemo. Hydration is very important for chemo so the drugs don’t stay in your kidneys and cause damage. There are no issues if you’re hydrated enough for your body to get rid of the drugs quickly. Max failed his hydration test 2 times and finally was able to pass around 2am when they were able to start chemo. Chemo lasts about 6 hours so around 8 this morning, he was done and sitting up and eating!! This is the first time in a week Max has been able to eat a full meal thanks be to God!! The doctor was very pleased as his nutrition will have to be supplemented somehow if he can’t eat so it was a good sign this morning he will tolerate chemo as good as he is able. A few hours ago, he did have to have an anti nausea medicine, and he is now sleeping but it was a great start to the day and the tired and nausea are both expected and normal. 

The other good news is that his blood work came back and showed his hemoglobin numbers had not dropped, which indicates there was no bleeding with the tumor with the reaction to the chemo, which is wonderful. What wonderful answered prayers on this hard path we are on to have Max tolerate the blood transfusion and the chemo well! 🙏

Now that we have a diagnosis, we are assigned a permanent doctor on the team here and it is Dr Cramer. He will handle all decisions with Max from now on. He is also the one coordinating with Cincinnati Childrens all the updates. The schedule Max is on is actually a clinical trial from Cincinnati for Max’s specific type of cancer. All the treatment plan was drawn up by them. Every chemo cycle is 28 days. Max has to receive chemo on days 1, 8, 9, and 15. Every other day in the 28 day cycle is for rest and recovery. Now that we have started as of this morning, our dates are lined up for us for 2 cycles and we will do a MRI after that to the tumors and Cincinnati will make the call if Max is ready for surgery. If he is not, we will complete one more cycle before the surgery.  This is God’s plan though so we know whatever He wills will be…..we are just along for the ride 🙏 and being the planner is that I am, it is a good lesson in humility not being able to control any of these steps. We will take updates as they come.

Last update, the doctor mentioned the coming home schedule. Given how difficult it was trying to get Max on oral medicine last time, he is taking a completely different approach and we’ll have to slow walk him off the morphine and back onto oral. If at any step in the process, it is not working, then we go backwards a step and wait and reasses. The best expectation here is that Max will be in the hospital through the next chemo treatments since it would make no sense to get him home for 1 day to turn around and come back for 2 more days. So our expectation is he will be able to come home after next weekend. But again, God’s plan not ours so we will see.

 Prayers tonight are for Max’s medical team of doctors and nurses….that they may be granted the wisdom to treat Max most effectively and direct their path appropriately as things inevitably change. We know Lord that Your ways are perfect and You are never surprised. Please help Max’s team to walk down Your path 🙏

We love you all!

-Amanda and Matt

And looking at them Jesus said to them, “With people this is impossible, but with God all things are possible.”

-Matthew 19:26

Thanks be to God for all the extra prayers and support last night. We kicked everyone out of our room minus our nurse and doctor and it was a nice reset. All of us got some decent rest so we could start today fresh. And thanks be to God we did! Today is a big day. Yesterday’s news brought the following plan: because Max’s tumor is so rare, his care will be directed by Children’s Hospital in Cincinnati. We will have 2 rounds of chemo here at Prisma and the doctor in Cincinnati will make the call when the tumor is small enough to operate on and we will head up there to Cincinnati for surgery. God completely directed our path here, as this wasn’t even on our radar but we are happy with that decision. This morning will start with a blood transfusion since all of Max’s numbers are low from lack of nutrition the last week and a half. We are in the process of the paperwork for the Red Cross directed donation so we will switch over to that once it is all lined up. But Max is not strong enough to be able to withstand chemo treatments without the blood transfusion first. Once the blood transfusion is done, chemo will start. We should be able to go home in a few days and we’ll just have to drive back for his scheduled chemo treatments. Every round of chemo is 28 days so in 2 months, we’ll reevaluate if he’s ready for surgery yet. The goal of chemo is to shrink the tumor enough to be able to operate on it and remove it. The prayers for today are that Max handles the blood transfusion and chemo well. And that Matt and Amanda are given the grace to take every step the Lord directs towards His plan. And as always, for a miracle in this cancer being removed from Max if it is God’s will 🙏  Thank you for all the support! We love you all! 

- Amanda and Matt

“Pain, suffering, and sorrow are but the kiss of Jesus - a sign you have come so close to Him that He can kiss you.”

- St. Teresa of Calcutta

“Thy will be done.” A common phrase we use in our house which means whatever is God’s will is what we want. At the lowest points in our lives, we have to learn to trust in Him and His plan and not on our own understanding. Max’s biopsy results were partially returned (we’re still missing genetics) and he has a hepatocellular tumor NOS, not otherwise specified. That means he has neither of the typical liver tumors they see, it is somewhere in between those types and very rare. We know that liver cancer is rare in children, but this type is the rarest of the rare. We also got to see MRI images and the tumor is taking up most of his liver, about 90% of it and a large portion of the stomach cavity. Since the tumor spread to the lung already, he is considered high risk. Because the tumor is so large, they cannot safely operate on it so he will need to go through 2 rounds of chemo before they attempt surgery. Given the nature of the tumor and the fact that it is rare, his care will be handled by Children’s Hospital of Cincinnati. They will handle chemo treatments here as directed by Cincinnati and surgery he will need to travel up there to complete. The odds are long but we know nothing is impossible for the Creator of Heaven and Earth. We humbly kneel at the foot of the cross and pray Jesus holds Max and us through this next phase.  I will give more updates tomorrow but today I just ask for prayers. Prayers for Max that he leans on Jesus through this next part. Prayers for Matt and I to have faith throughout this battle we are in. And prayers for healing, if it’d be God’s will. Thank you so much for all the support. We love you all!

- Amanda and Matt

Lord’s Prayer:

Our Father, Who art in heaven, 

Hallowed be Thy Name. 

Thy Kingdom come. 

Thy Will be done, 

on earth as it is in Heaven.

Give us this day our daily bread. 

And forgive us our trespasses, 

as we forgive those who trespass against us. 

And lead us not into temptation, 

but deliver us from evil. Amen.

Thanks be to God for the beautiful sunrise and start to our day!  And thanks to all of you for supporting us through all the phone calls, messages and donations! A lot happened yesterday which is why I’m a little late on the update here but I pray today brings some more clarity to the chaos of yesterday. Max’s new morphine regimen has been amazing….no more waiting 30 minutes for it to kick in then about an hour before the next dose watching him feel worse and worse until it’s time to repeat. All of that has gone away!  The issues we are working on now are his lab numbers. Sodium was low but it is back within an acceptable range. But the doctor is concerned the reason behind the drop in sodium in the first place is a brain bleed. We are watching for other symptoms because there are none at the moment but Matt and I are monitoring this closely. Max’s hemoglobin numbers are also low. Which means a blood transfusion is inevitable. Thanks to some wonderful folks who pointed us in the right direction, Red Cross does offer a directed donation program where we can collect our own donors to provide blood to Max as he needs it, which will probably be a consistent need as treatment progresses. More info to come on this but it is an exciting prospect knowing who is donating to our sweet boy! The turnaround time for such a program is a few weeks so unfortunately it wouldn’t be an option immediately but God knows our needs and provides so I have faith Max will be ok with whatever is provided until we can get everything lined up. 

We made a few phone calls yesterday to look into additional treatment programs assuming the biopsy does in fact show liver cancer, as it is a rare type of cancer in children. So a few additional cancer centers and hospitals are on our list to get second, third, and fourth opinions. Right now those are MD Anderson based in Texas, Duke University in Charlotte, St Jude in Charlotte. If you have any leads in pediatric liver cancer specialist, feel free to text or call one of us and let us know! We’re praying the biopsy results come back quickly, although the update is the lab has it and is in progress with reviewing it and genetic testing comes second after the initial analysis. So end of the week is the latest guess on timing for those results. 

Max still is not really eating, which makes sense given the pain levels, but unfortunately it is beginning to show on his labs as he’s lacking basic nutrients. The doctor has put him on a protein drink called boost to try to help so God willing we see results on this improving soon.  

Max was able to get up and walk a few times yesterday! One of the initial reasons for bringing him in was the fact that his pain was so bad he could not walk standing up straight. He has to hold onto the IV stand for support in order to walk down the hall but we’re proud he did it twice yesterday!  He has been in bed since before the MRI so we’ll be working on at least getting him moving a few times a day going forward. Max is being asked to hold such a heavy burden at such a young age and it is so hard as a parent to watch and not be able to just take away the pain and suffering and put it on ourselves instead. All things work towards God’s plan at the end of the day, and I have no doubt Max will be delivered from this current ailment, but it doesn’t make it easier to witness. We’re so proud of how he’s stepping up and doing things he does not want to do in order to make himself better. And in the end, this toughness will make all the difference. 

Today, please pray for Max for strength to keep going and stay the course. Pray for Matt and Amanda to have the knowledge to discern all the decisions that are coming at them and will be coming at them fast. They need to follow His plan and let Him direct their steps to ensure they stay on the path. And please pray for the medical staff, particularly the doctors directing Max’s care here. Pray they direct us appropriately on what Max needs while taking into account risks associated with medical procedures that may or may not be in his best interest right now. Pray the results from the biopsy return quickly so we can move forward in getting Max the treatment he needs to move forward. Thank you for all of your support! We love you all!

- Amanda and Matt

“If we are afflicted, it is for your encouragement and salvation; if we are encouraged, it is for your encouragement, which enables you to endure the same sufferings that we suffer.”

-‭‭2 Corinthians‬ ‭1‬:‭6‬ 

Thanks be to God today was the start of a new week and we have a new doctor on Max’s charge so a fresh set of eyes to look at things. There were some changes implemented today. Given the fact that we won’t be going home soon, they switched Max to a continuous flow of morphine. Rather than having this ebb and flow of pain relief and pain based on when he got his last dose, he now gets a tiny amount throughout the day and night equivalent to what he was getting but we didn’t have any big swings in pain levels today! It was a wonderful change. He spent most of the day sleeping since he was up doing tests all night last night but we did fit in a visit with Aurora, Anna, Memphis, Grandma and Grandpa! It was nice to see the kids and for Max to see them. It’s very different not all being home together and an adjustment for all of us. His electrolyte tests have all improved and come back to normal levels, so he’s on a normal diet again. They are still supplementing with IV fluids but they are not concerned anymore about those numbers and his diet. He hardly ate for the first 4 days we were in the hospital so this too is a welcome change to see him eating again! No biopsy results although doctors did tell us they made phone calls and were assured it was being rushed and we’d have results in the next day or two. Please continue to pray for Max’s medical team for the wisdom to know how to keep making him comfortable and for the wisdom to know the best treatment plan once we get the biopsy results. Pray for Max, that he is given the strength to walk through this suffering and the wisdom to know it is not in vain. And pray for the whole family to adjust to this new normal. Thank you for the continued donations, messages, texts and especially prayers!  Our family of believers is large and far reaching and all uniting under Max and I could not be more in awe of watching it happen and more grateful we are at the receiving end of all of it. Thanks be to God for every one of you helping us through this. We love you all! 

-Amanda and Matt 

“See what love the Father has bestowed on us that we may be called the children of God. Yet so we are. The reason the world does not know us is that it did not know him. Beloved, we are God’s children now; what we shall be has not yet been revealed. We do know that when it is revealed we shall be like him, for we shall see him as he is.”

-‭‭1 John‬ ‭3‬:‭1‬-‭2‬ ‭‬‬

The last 24 hours have not been as great. Max has been battling a fever for the last day that has required him to be on Tylenol to control. Thankfully it is reducing on Tylenol. They have ruled out any infections so we just have to deal with them and do Tylenol as needed to make sure they don’t get too high. He has a little higher dose of morphine, which has helped him go longer between doses that he is awake and feels good enough to sit up and play a game or watch Magic School Bus, his current favorite. Beyond that, he’s really just very uncomfortable. At this point, the doctors have told us going home is unlikely given they can’t control his pain without the morphine in the IV and the fevers. We won’t be able to tell if the fevers at home are from the tumor or a new infection so we’d be back here anyway the first time his fever came back. So we’ll be in the hospital for the foreseeable future. Thank you all so much for the donations, calls, texts, and prayers. We are so blessed with the community around us. Please pray for wisdom for Max’s doctors and nurses to know how to best make him comfortable while we wait. Also pray for strength for Max to withstand all the suffering he is being asked to walk through. He is so brave and we are so proud of how he is handling all of this.  We’re praying we have biopsy results soon.  We love you all! 

-Amanda and Matt

“The Lord is far from the wicked, but he hears the prayers of the righteous.”

‭‭Proverbs‬ ‭15‬:‭29‬ ‭‬‬

Praise Jesus!! Max finally had a good day! He was awake from 11am to about 6pm with lower pain levels. Enough that we were able to spend the day doing legos and puzzles and playing Mario. He even ate part of a PBJ sandwich, which is the most he’s had in a week!! I can’t explain how much of a joy it was getting our sweet boy back today, especially after the rough week we have had. Thank you for the texts, donations and prayers. They mean more than we could ever convey. Prayers that tonight goes smoothly and everyone is able to get some rest 🙏  We love you all!

-Amanda & Matt

“Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

‭‭Philippians‬ ‭4‬:‭7‬ ‭‬‬

Max had a better night than the night before but still had lots of pain which caused him to not get sleep so he’s currently playing catch up on sleep. The doctors are adjusting the medicine today again and we’ll watch and see how it goes in terms of managing his pain but still giving him awake hours where he can build legos or do puzzles. His fever is still persisting, even after over 24 hours of antibiotics, and negative respiratory virus tests so the doctors are saying the tumor is causing his body’s immune system to react since it knows it’s not supposed to be there. I’m not sure what that means yet for us going home but when I have an update, I’ll let everyone know. For now, we pray for peace for Max, and wisdom for the medical staff to know how best to help Max achieve that.  Thank you to everyone for the continued love and support. We love you all! 

-Amanda and Matt

”The greatest honor God can do a soul is not to give it much but to ask much of it.” 

-Saint Therese of Lisieux

All glory to God who surrounded us with such an amazing community! Thank you so much for all the texts, phone calls, messages, gifts, and cards that you have sent us that help us remember we are not fighting this battle alone. It is a few weeks away from our one year anniversary of Matt’s accident at work and we can’t believe we are here either, but we have no choice but to face these challenges head on. God only gives us what He knows we can handle and He must think we are strong so we will meet the challenge and have faith He is with us every step of the way. 

Max has had quite a difficult few days but he is checking boxes necessary to figure out what exactly we’re fighting so we know how to best tackle treatment and be a success. An MRI was done Tuesday, November 21st, to confirm that there are 2 masses on the liver and 1 on the lung. A biopsy and port install were done on Wednesday, to be able to analyze the type of cancer and in anticipation of chemotherapy treatments, the port will allow Max to avoid getting IVs put into his hands or arms all the time. The staff at Prisma Children’s hospital are walking a fine line in helping Max be comfortable from a pain management standpoint. Either the pain is unbearable or Max is super sleepy, both of which are not ideal, although we did spend Thanksgiving night dealing with the former unbelievable pain and we do not wish to go back there. As we wait for results from the biopsy, the team is focused on one goal, which is to get Max comfortable so he can safely go home and wait for results and a treatment plan there. That requires bringing oxygen levels up with breathing exercises to help expand his lungs. It also requires finding a pain killer that is oral medication, so he does not have to have an IV. And it means the fever he has been spiking has to be confirmed to not be bacterial, although antibiotics are being given as a precaution. Something that we will get used to as it seems, since every fever will require a hospital stay now that he has a port installed. 

There are a lot of moving parts that change hourly at this point, so please forgive us for the slow response on texts as it is hard to keep up in person, let alone on the phone! Hopefully this site will allow us to update everyone quickly and more easily so we know the latest and what prayers are needed at the moment. For now, our most pressing need is prayers. Prayers for the doctors to be given the wisdom to know how best to keep Max comfortable. Prayers for Max to have the strength to fight this battle God has asked of him and to do so with the positivity required to be successful with God’s help. Prayers for Max’s siblings, Aurora, Anna, and Memphis, who really don’t understand why their brother isn’t home with them. And prayers for Amanda and Matt to be given the strength to withstand the diagnosis and decisions regarding treatment options and the wisdom to know what path God has them on to know His plan in all of this so they ensure they are following Him. As Saint Paul says, I am content with weakness and hardships for the sake of Christ because it is in our weakness that God’s Grace is given and His power is made perfect in weakness. 

We will continue to update everyone, hopefully daily, through this website. Thank you so much for your support and your love. We love you all! 

- Amanda and Matt

“but He said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.“

‭‭-2 Corinthians‬ ‭12‬:‭9‬-‭10‬