Two scans, two new diagnoses; no cancer! 

Scanxiety is so real. Mom and Dad had really been feeling it building the last two weeks, especially when Andrew developed a cough and then pain and swelling started in his foot that made the PT suggest adding in an xray to the scheduled lung ct scan. 

Today, Andrew had his 6 month followup with Dr. Yeager, the sarcoma specialist at Nationwide Children’s in Columbus. Before the appointment he had his lung CT scan and x-ray of his left foot because he had been complaining of it hurting when laying down and sitting and also asking for icepacks most of the day, which has always been extremely uncommon for him to accept an ice pack for more than 2 minutes. 

After labs and while waiting for the appointment with the oncologist, one of the orthopedic residents came walking down the hall with a small ortho boot. We knew he was coming for us and it was fractured. We asked if it was only a fracture, meaning not a fracture caused by a tumor, and he said just a small fracture. Small relief. 1 result down, 1 to go. 

After we got to the room, the CT scan results poppped up in mychart and against our better judgement we read them and immediately wanted to puke. Thankfully, Dr. Yeager was in a minute later and asked a few questions and asked if we wanted the good or bad news first. We said just to give it to us. And he told us that Andrew had pneumonia. We talked about it for a few minutes, he showed us the scans, and kept waiting for the rest of the bad news, based on the ct scan impressions indicating metastasis, but he said, no, that's it. Whew. Huge sigh of relief. Unfortunately, that means no surgery Thursday.

With the surgery cancelled, his port needed flushed before we could leave, Andrew's least favorite thing to do. He will need an antibiotic for 10 days and the boot for 3 - 4 weeks when he wants to walk, though he hasn't really wanted to walk the last few days and declared he won't be wearing the "stupid" boot. The surgery will need to be rescheduled, hopefully not interfering with Christmas. We will know more later this week what surgery scheduling will require for rescheduling. 

Considering that this could have been a lot worse, we are so thankful these are just minor setbacks. Thank you for all of your continued prayers. They were felt and answered this afternoon.  

It's difficult to believe that 14 weeks ago yesterday, Andrew managed to sublux his hip, while still wearing the brace 24/7, just three and a half weeks after his osteotomy, leaving him in significant pain for the next 2.5 weeks and his future mobility quite bleak and last week, with the help of his gait trainer, he walked up the ailsle of St. Bartholomew and made his first Reconciliation. 14 weeks ago we were praying to get enough sleep to be halfway functional the next day and today we watched him participating with his peers, like a normal 7 year old. 

Andrew has been making steady improvements over the last few weeks, but still has periods of over extending himself and relying on the wheelchiar and to be carried short distances for a day or two at a time. He was hoping he would be able to use the walker for trick or treat, but it was a rough week for him so he opted for the wheelchiar and made the best of it. He was Harry Potter again for trick or treat and dressed as St. Peregrine for our co-op's All Saints Day celebration.  

We surprised the kids the first weekend in November and left after our co-op to visit Shenandoah National Park, Luray Caverns, and Harry Potter and the Forbidden Forest. With the help of Andrew's special jogging stroller we were able to do 4 hikes in the NP on Saturday and watched the sunset over the Appalachian Trail. Amelia slept through the entire Harry Potter experience on Sunday, but the boys loved it despite the cold temperature and late start (plus the time change). Andrew wasn't very mobile that weekend until we stopped at the Carnegie Science Center in Pittsburgh on the way home. The kids had so much fun at the Sports Works building playing virtual soccer and testing batting and pitching speed. 

We feel so blessed to be able to experience these wonderful moments and at the same time feel awful there are so many kids we have met along the way currently battling 3rd, 4th and 5th relapses and acknowledging that we realistically can only plan 3 months out between scans. The next set of scans in December will be a huge hurdle because if they are all clear, that means Andrew's port will come out a few days later and he will get his Wish (Harry Potter at Universal Florida) granted through Make A Wish! The kids know his wish has been approved but they have no idea when it will be or that we have known the dates since July. We figured the risk was too high of a relapse to really start planning yet.

It will be challanging to both live in the present and mentally prepair for either result of the scans over the next 13 days, but we do the best we can to not project that anxiety to the kids. 

Swimming, ramping (going down ramps/hills at high and exciting speeds), and hobbling. That's how things have been lately. Almost feeling a little "normal". We only need to carry Andrew about 15% of the time and it's often because we are running late. He has a loaner walker with wheels from PT while we wait on the seated walker we ordered, but it is too bulky to use inside the house so we try to get out and walk the sidewalks a few times a day. His biggest hurdle is still the flexability in his foot and ankle. Those muscles and tendons are extremely tight which prevents him from wanting to put any pressure on his right leg. 

October 21st, was another ortho followup with a port flush (hopefully last one!!). The appointment went very well. His weight is around 49.5 lbs and the (real) femor has grown 5cm since August. His prostetic implant will "grow" a few milimeters on December 5th to help balance him out, but will make his tight muscles even tighter. His only real restrictions are things that require good balance on both feet like trampolines or snowboarding, and crossing his legs while in a deep squat (like in a toddler bike trailer or stroller). Last week at PT we saw a girl on a half ball working on balance and he didn't like the idea of trying that anytime soon, but hopefully his confidence improves and we can use our Get Air trampoline park gift cards from Christmas, 2022.

After Andrew's ortho appointment and port flush, we stopped on the 12th floor to see our friend Maddie, who we have talked about a few times. She has been sick with her chemo regimen and her parents were informed this week that the chemo did not work and the cancer is slowly taking over her body, with very few options left. This is another reminder of how short life can be and each day is a day to cherish. 

Before leaving Columbus we dropped off 5 ziplock gallon bags full of can tabs for Ronald McDonald House. They collect the tabs all year long, but they run a special campain leading up to the OSU/Michigan football game that brings in the majority of their annual donations. They told us they are usually able to pay for the electricity for the year through the money earned from pop tabs. That's 206 rooms for 4,294 families in 2023! If anyone collects them without a specific purpose in mind we will gladly take them off your hands and drop them off at RMHC for you. 

Up next:

12/2-Lung CT

12/5-Femur lengthening, and possible one (of 2) screw removal and port removal

Watch, O Lord, with those who wake, or watch, or weep tonight, and give Your angels charge over those who sleep.

Tend Your sick ones, loving Lord. Rest Your weary ones.

Bless Your dying ones. Soothe Your suffering ones. Pity Your afflicted ones.

Shield Your joyous ones.

Give strength and vigilant awareness for all Your care givers through Christ our Lord. Amen.

It's hard to believe it has been 1 month since Andrew's hip replacement. He is far from walking and running, but most importantly he isn't in pain. Most days he can get to where he wants to go on his own, even if its not the safest (without a walker or cane), but any amount of extra independence is very much welcomed. We know he feels good when he is ornery and that has been a lot lately. He has been taking advantage of any and all inclines he can find at the park after Amelia's soccer, at the zoo, and after church. He tries to ride his go cart as often as possible and we are anxiously waiting for the last bit of scab to disappear to hopefully get the all clear to swim again. Getting him back into the water for him to feel a little more freedom and independence is exciting. It's difficult to think that it's been nearly 1.5 years since he could swim unrestricted. I remember when we were in Utah when his limp became regular and started refusing to walk he still swam like a fish at the hotel pool. 

These kiddos really keep us busy.

Last week Amelia got tired of seeing the dirty dishes and nearly overfilled the sink when she decided to wash the dishes herself while Mom was trying to work with Andrew. Then she showed off and did Andrew's clothes folding for him while watching history videos, and better than he does.

Ethan convinced Amelia that Mom wrote on the assignment list that she needs to give him foot massages so he got 3 last week. 

Andrew is continuing to do his daily walks to the road with the walker and has taken a major interest in photo editing, especially shrinking his subjects of interest turning them into fairies. 

On Friday, we got Andrew back into his new bike trailer for a 9 mile round trip to Kid Force Collectibles to buy a newly released Pokémon set. 

Monday the 16th was a big day, the orthopedic followup with xrays, bandage removal, and port flush on the 11th floor. Ortho said his xrays look great and his wound looks good though needs another week or two to completely heal before he can submurge into water (and go swimming). He was cleared to ride his go cart and can even ride rollercoasters, but still can't go to the dentist until end of November. While at home, awake, and under direct supervision he can now remove the brace for anhour or two, as there is still a slight chance of dislocation though there are two screws in there holding everything in place pretty solidly. The doctor said this is the best range of motion he has ever felt on Andrew and he is very pleased. He is very sensitive to any kind of touch on his thigh, so we need to start working on desensitization. Andrew's final question of the day was whether his screws came from Home Depot and Dr. Scharschmidt played along beautifully responding with "I'm more of a Lowes guy and get most of my parts and pieces from them". 

It was an odd feeling being back on the 11th floor, especially not needing an infusion and Andrew actually having hair. It was like we were outsiders in this harsh world that was so much a part of our lives for 10 months. We ran into Katelyn, a 9 year old with relapsed neuroblastoma, who petitioned to get therapy dogs onto the 11th and 12th floors and makes and hands out Sunshine Pillows. We also saw a lot of Andrew's nurses who only recognized him when he started waving his wand. We appreciate and are so incredibly greatful where Andrew is right now, knowing the next round of scans could change the course and put us back on the 11th and 12th floors for who knows how long.

With his new clearance, it shouldn't be a surprise that Andrew went straight to his go kart when we got home. He rode it for about 30 minutes. His maneuverability was a little rusty so he ran over his sister's feet and ran into the van a couple of times, but overall had an absolute blast. 

https://youtube.com/shorts/gAvgxzOSwso?si=oiDmsNXoVnsNuGhR

The picture shows the difference in leg length from last Wednesday and today, though there was no actually lengthening done. The difference came from where the head of the femur had been sitting so high and back in the.socket. 

While looking through pictures i tried to find a picture where Andrew was doing better than he has been the last 24 hours. It was from June 21, when he was trying to climb onto the counter of the livingroom bookshelf. Ironically, Sunday morning while getting breakfast for A Team, Andrew was trying to coach Amelia how to scale that same bookshelf to reach the IPad that I said could wait until after breakfast. She kept saying "I'm not big enough!" And Andrew's response was, "Never give up!" At that point I felt a big sense of relief that things might actually be okay for awhile. 

It didn't take long for Andrew to ask to go to his favorite store, KidForce Collectibles. So on Monday, Dad took all of the kids and Ethan's friend and spent about 2 hours shopping and spending a majority of their money on Pokemon. But that wasnt enough so Tuesday night Andrew and Dad went back for Pokemon battle night where Andrew won 2/3 battles and won some new cards. 

As of today, he is now able to use the walker and go to the bathroom solo. He asked to climb the stairs, and did with some help, and we found some ramps in the shed so he can now get into the garage if the wheelchair is in the house. He has been trying to coach Amelia how to open that door, to no avail. I think she needs about another 10lb on her frame. 

With this new level of independence we haven't seen in months we have started to wean off some of the pain meds and he seems to only experience some minor discomfort during the day. Night time might be a little longer. 

Yesterday, Wednesday, Sept 4th was supposed to be the CT scan. We were already starting to feel a little bit of the scanxiety that comes with each set of scans, knowing relapse could be as early as 3 months (this scan) but we didn't really have the opportunity for too much since it was added in right before surgery last friday. We are so thankful his scans have been clear for awhile now. We recognize this isn't the case for everyone and truly cherish each and every day Andrew remains cancer free.

Sleep!

Andrew slept GREAT last night. The last time he slept without screaming and pain meds was August 20th, which means we got some sleep, too. While that doesn't sound *that bad* I think the worst part was our bodies and minds knew too well what its like and the downward spiral that can come from it. So, to hopefully be moving forward is a huge relief. 

He did very well after the surgery. He was brought up to the room floor from the PACU about an hour after the surgery was over with some extra oxygen. It took about 30 minutes for him to fully wake up and then about another hour and a half for his oxygen to recover. We quickly found getting him to laugh or make him mad got his numbers back up within seconds so we would show him silly pictures if it started to drop. He did have some bleeding that was starting to get close to the edges of the bandage, so the RN called the ortho on the floor and two showed up to access, determined it was still within normal bleeding, and added some extra bandages to keep it contained. 

Once he was doing better pain wise the nurse called his friend Dominic from the rec therapy department and he came in and talked with Andrew for an hour about Balloon Tower Defense 2 and Pokemon. He also brought Andrew a pokemon hat. Then before the day was over for non clinical staff, Isaiah, the Video Game tech dropped off the Nintendo Switch for Andrew to use until he was discharged. 

This is just another reason we love this place. There are many employees we haven't met, but too many we know. Nurse Jen had him last month and saw his name so ran through his chart and stopped in to say hello for awhile even though she didn't have him. When we were checked in on Friday at the surgery area one of the Patient Transport employees saw us and waited for the order for CT transport and took him over there and brought him back. Mike, the new ortho oncology fellow, has only been at NCH for 2 weeks, but by last Monday we already had his cell number and he was returning calls while with his family at COSI. I hate bothering people outside of work but I'm so thankful he was willing and able to take the call and take the time to go over everything and coordinated our concerns with Dr. Scharschmidt.  

Saturday morning went very efficiently. The nurse said PT would come between 9 and 10 so they gave him pain meds, the last dose of antibiotics, then removed the IV before Mom, Ethan and Amelia arrived. PT came soon after and got him up with only a little apprehension. Hes basically been in a seated postion for the last week and we nearly cried when he straightened his leg and put his foot on the floor. He took about 3 steps, 3 times and PT was very pleased. He said he needed to listen to his Diary of a Wimpy Kid audiobook and needed someone to hold it next to him so he could get the strength to walk, even though it was already on the Bluetooth speaker. Amelia volunteered to be the speaker holder and took her assignment very seriously for the entire 2 minutes. The RN was ready as soon as PT left with discharge paperwork in hand. 

It's been a whirlwind and still difficult to process that in less than 48 hours we were told our 7 year old needed a hip replacement and was already discharged and on the way home. Rachel has a few extra grey hairs from this, but with seeing how much better he is doing compared to the last two surgeries, we are finally feeling like there is some hope that he may get back to being a kid. 

We also need to give some words of appreciation to the Rondald McDonald House. The Columbus location is the largest RMDH with 280 rooms and so much fun and inspiring decor. There is free hot lunch and dinner every day, donated food for easy meals and 6 kitchens with full refrigerators. Plus plenty of drinks and snacks set out all day. There is a large playground with small splash pad outside and multiple play spaces inside along with an arcade and pool table. They have activities from time to time like bingo and where they give away donated gifts as prizes. So the next time you are shopping and the cashier asks if you'd like to donate to RMDH, please say yes! 

Andrew's current restrictions are no being deeper than 90*, no internal rotation, twisting torso, or crossing legs. It is highly suggested to get back to stretching the calf and using the walker with both feet on the ground. 

We will have two full weeks at home before going back for incision inspection and getting his port flushed on Sept 16, since they didn't end up using it for access for the surgery. We got the results from the lung CT back and they are still clear (thank you Jesus!) So we are hoping when he gets the leg lengthened in a few months the port can come out and ring the bell. 

Surgery is finished. He is getting bandaged up now. Dr. Scharschmidt was very happy with how well this went. He said it was surprisingly very stable once they removed some of the scar tissue to place the implant and that reassured him this was definitely the right call. He was very happy with how well the fit was and the range of motion. They will be getting him up and standing on both legs before we leave tomorrow. He said some of the bone is still a little soft so he will be in the brace for about 2 weeks and wont be full weight bearing yet but wants to the gradually work up to full weight bearing around 4-6 weeks post op. That's an earlier date of being brace free than after the osteotomy.  

He didn't lengthen the femur, but the pelvis had been pushed back so far putting that back into alignment added some functional length. 

Here comes the Mary. Andrew has had a rough week. Wednesday night I finally talked myself into sacrificing the semi conscious sleep state while on Andrew duty and opted for full consciousness to document what a night was like so Dr. Scharschmidt could review prior to the Wednesday appointment. A summary is he was up from 1am until 4am sleeping less than 20 minutes at a time. I also included audio from one of his screaming fits and pictures of the alignment of his legs. His new fellow, Mike, reviewed everything and talked to Dr. Scharschmidt and determined the osteotomy likely failed, he was subluxed, and a full hip replacement is the next step and ideally would be the next day (today, Friday) or if we really wanted we could wait until next week, but risked running out of oxy and needed to be admitted for pain management until surgery over the Labor Day weekend. We asked to give us an hour or two to think about it and determined that it was the best chance for him at this point. There wasn't any room to schedule the surgery so we would be after his current patients or if he was available at the same time the trauma OR was empty they would go there.  

So, this morning instead of getting ready for the Blue Angels preview party tonight at Burke Lakefront, we left the house at 5am with all 3 kids for Columbus not knowing when surgery might be. He is getting his lung CT that was scheduled for next Wednesday while waiting on an OR to open up, which now sounds to be around 11:30 and the surgery will last about 1.5 hours. 

We were initially hesitant to go with the suggestion of total hip replacement, knowing it will only last about 15 years and wanting to think long term, but "long term" for a healthy child is very different for a child who was diagnosed with metastatic Ewing Sarcoma. And after frantically calling a few other well known pediatric orthopedic oncologists for a second opionion only to find many states don't allow for out of state virtual visits, was able to get a general opinion that if he was too unstable to make the drive/flight, it's probably best to get the replacement. Dr. Scharschmidt reasaured us he reached out to a few other colleagues across the country last night who all agreed they would proceed with the hip replacement, too. It's difficult to continue to have faith and hope that the suffering will end, especially with the light at the end of the tunnel seems to keep getting farther away. 

If nothing else, this journey has taught us to not look past the simple things in life and to trust in the Lord. 

Two steps forward, one step back. In this case we are measuring in weeks. After a couple of pretty good weeks, Andrew has been in considerable pain since his first post op PT appointment. Or it could have been the over excitment that evening at Ethan's birthday celebration at the local arcade where Andrew was so amped up he was up and down and all over the place for hours swiping his card and yelling at us to push him faster through the laser tag arena. Either way, he's been spending a LOT of time in the carseat in the livingroom, back to not sleeping in his bed (it had been less than a week), and not able to tolerate the slightest of bumpy terrain in the wheelchair, bike trailer, or van. Distraction works almost as well as prescription pain meds, particularly board games and video games, though when Mom and Dad cut off the screens, audiobooks can help sometimes, too. Days (weeks) like these, it's impossible to not wonder if it really is worth trying to salvage his leg. Even if he can never walk again, is the residual pain worse than the potential phantom limp pain of an amputation? I hate thinking this way, but seeing the pain day after day (and night after night) and not knowing if he will ever walk again, it's difficult to keep these thoughts away. About half the time, he refuses to take any pain meds, especially if the pain comes on after he has fallen asleep, so the screaming adds an extra layer of stress. 

Thankfully, he felt pretty good during the day on Saturday the 24th and we were able to make it down to Columbus for a family reunion on Rachel's side and stopped by to our parish picnic on the way home. Sunday was a different story and he was finally able to tell us the pain is coming from below the knee, which was pretty swollen, and his ankle was so swollen you couldn't see his ankle bone. The on call ortho resident didn't think it was anything we needed to go to the ER for or go to NCH, but suggested calling Dr.Scharschmidt first thing Monday, which we were planning before noticing the severe ankle swelling.

Monday morning, our first day of school, looked too similar to last year. he seemed to not be in pain for the first hour or two. Dr. Scharschmidt wanted us to bring him down for full leg xrays. These were very difficult with his pain and general uncooperative personality. Some of the xrays were done with him in the wheelchair but some didn't come out clear enough so he had to get on the table and do standing xrays, which was pretty awful. But they all looked fine. So he booked us an appointment across the street at the hospital for a CT of his leg. This also didn't show anything so after 4 hours in Columbus we were sent home with no answers and a refill of oxycodone. 

Despite the busy Monday, we had our first day of homeschool. We keep wondering where summer went and realized most of it was spent in the livingroom fetching things for Andrew. We are thankful we were able to squeeze in the late spring/early summer trips while he was semi-stable even though it seems like it was an eternity ago. While it seems impossible to continue to keep up with the daily needs of A Team (Andrew and Amelia) and add the stress of getting some academics accomplished, it's a welcomed distraction from what all Andrew is missing out on like fall sports and fall trips. So, we will power through 2nd grade so that when he is physically able to do more we will have the flexibility to make it happen. 

Last Wednesday marked one year since Andrew's second opinion in Columbus with Dr. Klingele. We spent the day this year back down at Nationwide for Andrew's 2 week post op follow up in the new Orthopedic building with the Orthopedic oncology department. It's crazy to think about how specialized these departments are, with also having a limb difference and limb lengething departments. While there, we saw Heather, the psychologist, who was there to deliver the news one year ago that they suspected he had a tumor. We hadn't seen her since the first week in the hospital. The appointment went okay. Everything on the xray looked good and the incision was healing well. The bandage removal is always a bit traumatic for Andrew and thats difficult to manage. His restrictions didn't change; he will be non weight bearing at least until his next appointment on 9/4, and in the brace for about 10 more weeks.

8/8 marked one year as a cancer survivor. We never imagined he would still be so far away from being able to walk. While we haven't lost hope that its a possibility, we acknowledge the longer since he has walked , the bigger the hill to climb, so we continute to take it one day at a time and meet him where he is...

Which brings us to this past Sunday- It's been...a long time since we have been able to take a family bike ride, but thanks to the generous donations from the past year, we were able to make it happen with the purchase of an adult sized bike trailer. Inspired by the bike we rented on Mackinac Island, we found the perfect seat. He likes that it's not permanently enclosed, so it doesn't feel so babyish and he's much more part of the ride. It has a waterbottle holder and since he doesn't take up too much space on the seat, he has plenty of room on the seat for snacks. Our first ride was a big success, going 9 miles. We hope for many more bike rides this summer and fall.

We had 2 appointments on Tuesday the 13th in Columbus. First, was the monthly port flushing. 

Second, was the cardio oncology appointment to go over the last echocardiogram and what to expect going forward. Everything is within normal range, but the shortening fraction decreased slightly over the last year, which we already knew. She said at this point, she will be the cardiologist to review his annual echos and if there is any significant change we will meet with her again and discuss interventions. She said doxorubicin + radiation is more of an effect than 1+1=2, but how much more isn't really known. Any cardio change due to radiation won't likely be seen for around 10 years. She said if intervention would be needed it would most likely be a low dose blood pressure medication with the goal to stop any progression. 

We have three weeks off before we need to go back to NCH for port flushing, orthopeic post op, and quarterly xray and lung ct scan. 

1 week post-op

It's hard to believe it's been 12 days since surgery. The first few days and nights were a struggle, but gradually we are gaining more confidence with pain meds for an easier night, getting him out of the house, and he's tolerating sitting in places other than the couch and carseat a little more. On Saturday he was able to sit in the wheelchair for about 2 hours at Anthony's birthday party and on Sunday, he was able to sit at the kitchen table for a few minutes and one of the cushy chairs at the movie theater to see Inside Out 2. Most days he doesn't need any pain meds. Every now and then he gets uncomfortable. With his improved pain and tolerance, we are slowly trying to wean back off the tablet, tv, and video games. Understandably, Andrew hasn't been a fan. On Sunday A Team had some fun with the water table, water guns and hose before it got too hot. And we are trying to get daily walks and driving some RC vehicles. 

Grandma Sue came up for a few days and brought Andrew some new underwear and shorts with Velcro to make it easier to get on and off. We are trying to fit in time to play more games and got back to getting our butts kicked in Memory. Dad came close with a 10-17 defeat. 

The doctor's office called on Wednesday to check to see how hes doing and the nurse said it sounds like he is doing much better than expected, so that's reassuring. We are anxiously awaiting next Wednesday's appointment to get a better idea of the rest of summer's restrictions and recovery timeline. 

The surgeons said Andrew did very well during his surgery. They did not end up lengthening his femur because the bone was still too soft from chemo/not walking and he didn't want to push it and cause damage, but did a adductor tenotomy to lengthen and loosen up some tightness, so he has better range of motion in addition to the osteotomy. 

The wedge shape that was created from the osteotomy was filled with cadaver and screwed in place should heal in 6 weeks and then hopefully start back to physical therapy. 

In 3 months, he should be able to have his leg lengthened and port removed, and in 6-12 months remove the screw holding the grafted cadaver in place.

Initially we were told no restrictions. Then a week or so before the surgery we were told 2 weeks of non weight bearing and 4-6 weeks of brace wearing, but now he will be non weight bearing for 6 weeks and in the brace for about 12 weeks.

He was moved to the 7th floor by 10am Monday morning and the nerve block helped a lot until around 3 when it started wearing off. He was very agitated, itchy, and couldn't get comfortble most of the afternoon and evening with the rotation of tylenol, motrin, and oxy. Distraction seemed to be most effective pain management. The hospital now has a video Gaming Technology Specialist, Isaiah, whose job is to know everything about gaming and engage with the patients. He is learning how to play Pokemon so he's going to try to stop back Tuesday when he heard Andrew brought his decks and board. When it was time for Isaiah to go home the pain was pretty intense, but winning a Monopoly game against Grandma and Grandpa helped a lot.

He slept pretty well Monday night and woke up Tuesday with much less pain and was able to sit up on his own. Isaiah wasn't able to come back, but he sent our friend Dominic, who used to play chess with Andrew on the 12th floor. Dominic is also learing how to play Pokemon so they had a nice, friendly battle. We met with our old in patient PT who gave us some exercises to try and prevent loosing too much progress and a few tips to prevent pressure sores. Then Berry, the brace guy, came at 2 to take some measurements and see what adjustments needed to be made since he was last fitted in November, and was back with the finished product around 4:30. And we finally left around 5:45 Tuesday night.

It was both comforting and sad to see so many familiar staff members. One of the patient transport employee saw Andrew's name pop up for something so he stopped over to say hello. Dr. Martin, the anesthesiologist from the resection surgery who is a big Harry Potter fan, saw me in the hallway and stopped over to cast some spells and check out Andrew's newest wands. One of the nurses came over to play some games and Mackenzie the Child Life specialist who was one of first people we met at the initial admission, brought a newly donated Harry Potter book just for Andrew. It's nice to think "this is the last time" but realize it may not be. Andrew keeps asking how many more surgeries until his last one and he's not real fond of the answer "only God knows". 

Reparo

The Mending Charm, was a charm that could be used to seamlessly repair a broken object and worked on most materials. 

Episkey was the incantation of a healing charm that healed relatively minor injuries such as broken noses, toes,and split lips.

The spell could create sudden temperature changes in the body parts being healed.

Skele-Gro (alternately spelled Skelegro) was a dreadful-tasting potion which restored and caused growth to bones. It was able to mend broken bones, or even regrow entire bones that have vanished or been otherwise lost.

So many times I wish our life was in a Harry Potter book and everything could be fixed with the flick of a wand or drinking an odd concoction. But we live in a reality that God has a purpose bigger than this earlthy life and understanding the power of redemptive suffering, is about all that keeps us sane these days because sometiems this life is hard. 

He had zero short term side effects from the radiation until the night before his last treatment when we noticed a prickly looking rash under the skin. While it still hasn't gone away, thankfully, it hasn't seemed to bother him. Though he won't likely have any permanent visible reminders from the radiation, I don't think it's possible for us to ever lose the memory of those huge, heavy, lead filled doors closing as we walk out of the room and the "beam in use" light turn on warning no one to enter the the dangerous, radiation filled area. I can't imagine how scary that was for him the first time he had to be in there alone. 

Monday morning, the day of his last radiation treatment he woke up with a slight cough and feeling tired. He still made it to his last radiation but then came home and slept 3 hrs until 1. When he woke up he was still tired but finally wanted to eat a little and by the evning seemed perfectly normal. He wanted to ride his gocart, but he only made it a few yards down the sidewalk before something caused his hip to sublux and he was done and could not get comfortable back at the house. While still not feeling great the next day we met up with the Gardners at Faiport Harbor Beach, but it, too was too much for him. He was able to sit in the sand for about 10 minutes but the rest of the time he was either in his wheelchair in the sand or being held upright by Mom. Then Wednesday morning he woke up hopping around again like he was over the weekend. So we tried to go swimming and again, something caused it to sublux so we had to leave. When this happens you can feel the head of the femur bulging out the side of his hip and see his femur rotate inward and then at a sharp angle towards his left knee. The two positions that somewhat help are the carseat and standing. While we'd love to hold him upright in front of us for hours, like he would prefer, but he is getting pretty heavy (and we are getting old), so about 30 minites at a time is our max. 

Because of the cough, anesthesiology couldnt clear him for surgery the monday before so they put him on the schedule to be called again on Thursday to reevaulate. Thankfully, it didn't amount to anything and he was able to proceed with the surgery. 

On Wednesday, we found out that though we initially thought his port could be removed at the same time as the growth and hip surgeries, because there were two orthopeic surgeon's schedules to coordinated along with a general surgeon, it just wasn't possible. After a small duscussion about how he handled radiation, and that he still has the prickly looking rash the oncology NP felt it was probably better to delay the port removal anyway. She said we could probably coordinate it with one of his followups, depending on how he's doing. 

Thursday was a really painful day filled with tears and begging to take the pain away. That was when we finally told him the doctors had a solution and they were going to try to fix it on Monday. With tears dripping down his face he looked up and asked if that meant a surgery and the brace and when we confirmed he asked that we not talk about it anymore. He said he thought he could handle a trip, so we packed up and headed to Michigan after dinner. After 2 hours in the carseat his leg was feeling kuch better and he was back to being ornery. 

Friday we woke up to meet the Mervar Family from CSH, who recently moved to Detriot suburbs, and we played at an AMAZING playground. Hill slides, water play, big tree house with slides, rope climbing, swings, and paved trail around a pond with a waterfall. Andrew had a blast. Then back in the van to drive to St. Ignace over the Mackinaw Bridge. At St. Ignace/Mackinac Island/Mackinac City, we swam, played in the sand, threw rocks into the "ocean", visited lighthouses, rode bikes on the island, played with trains at a toy store, visited Fr. Marquette memorial and rode the Joliet ferry, and flew in a helicopter over the bridge! That was an incredible experience. Amelia said it was "super awesome" and didnt stop talking on the headset. On the way home we stopped in Mackinac City, and Bay City to play at a splash pad and playground before dropping off Dad and Andrew in Columbus, while Mom took Amelia and Ethan to Grandma & Grandpa's before turinging around just a few hours later to head back for the leg lengething and pemberton osteotomy nice and early at 7:30 on Monday. 

Hopefully he will be able to go home some time on Tuesday.  

A weekend of water, walking and statues. 

Last week was the beginning of radiation. The first day was rough with having a good amount of pain trying to lay on the table, but everyday afterwards went smoothly. We also found out the date was set for Andrew's surgery for 7/22 and that he would be non weight bearing for 2 weeks and back in the immobilizing brace for 4 to 6 weeks. Considering after the last surgey he wasn't supposed to have the brace but ended up having to wear it for 3 months, we are trying to cram in as much adventure as possible realizing his summer may very well be over after this surgery. 

Thankfully he hasn't had any major issues since June 23rd so we set off for Canada after Friday's radiation. On the way we stopped at Theodore Roosevelt Inaugural Historic Site before heading to the hotel. We were able to see the Niagara, NY Independence Day fireworks and then the fireworks over the falls while they were all lit up from the comfort of the hotel.

Saturday was Journey Behind The Falls, The Fury 4d movie experience, Aero car over the falls, tour of the old power plant and the tunnel underneath it, White Water Walk, rode the Incline, and went for a swim in the hotel pool.

Sunday we waited in line for 90 minutes to get back into the US, Mass and lunch at the Bascilica of the National Shrine of Our Lady of Fatima, Maid of the Mist and walked around Goat Island. We ended the trip with Rainforest Cafe. 

We were pleasantly surprised with how wheelchair accessible everything was on both sides of the falls. 

After reciving the wonderful news of the PETs scan last week, Andrew finally was able to go swimming. Perfect timing since it was in the 90s, except the boys only wanted to swim in the inside pool. Surprisingly, Andrew did very well needing only a little assistsnce from time to time. He only went for about 45 minutes each day but it still wore him out. He also went to a sitters 3 times this week so we figured he would be in some pain, but was surprised he was just a little tired. Then over the weekened we finally found a used jogging stroller for a big kid/small adult with real bike tires to allow him to get off road a little. We tried it out Saturday night and he seemed to do fine in it. It's very similar to a Bob stroller except the front wheel is fixed, you can sit completely upright rather than always reclined, and the foot rest is all the way down instead of having his knees pushing up and back.

Then after so many good days, he had a bad day. Unfortunately, it happened to be on the day we went to Cedar Point through the local charity, A Kid Again. We registered for it a couple of months ago and had only told him the week before. We went to Memphis Kiddie Park the month before somewhat as a trial to see how he did and he did fine, so we figured this would work out. He was a little sore Sunday morning before we left for CP, but it's not that unusual. He had been looking forward to riding Wild Mouse that entire week and planned on going straight there after we got checked in. He even wore his Wild Mouse shirt and hat for the special occasion. But it was too much. He was in so much pain after he rode that single ride that he couldn't stop crying and begged to go home. We tried to convince him to stay until the tylenol kicked in since it ended up looking like a perfect weather day, crowds were fairly low, we could try the water park once it oened at 11, and there were other activities being provided by A Kid Again but he just couldn't get comfortable so we left after only riding one ride. Thankfully Ethan didn't voice his disappointment at all and Amelia accepted that we had to leave after 45 minutes in the park because Andrew's leg hurt. Managing expectations and disappointment for everyone is so difficult, but i think the kids actuslly handle it better than us adults. This was supposed to have been the last bit of "fun" before going into radiation.  

We have been working with Make A Wish since January and have been going down the path of Disney/Universal, mainly for Harry Potter World, but after this failed trip to Cedar Point we are starting to rethink whether that really is the best for him. We will see how the next month or two go. It's so difficult to accept that even in remission there is so much cancer steals from a kid. There are so many reminders on a daily basis that he hates. He hates seeing all of his old baseball and soccer shirts, pictures from adventures he couldnt possibly do right now, going past the bike path around town and now im guessing he won't be wearing his Wild Mouse hat or shirt again after today. It's all constant reminders of what was and can no longer enjoy. 

Sunday night was even worse than the day and we had to keep taking him for rides in the car so he could fall asleep for 90 minutes. Finally around 5 we let him stay asleep in the car until he needed to get ready for the radiation sumulation. 

He spent most of the day on Monday in the car seat attached to a dining room chair because that was the only way he was comfortable. We talked to the surgeon mid day and he asked for us to come down on Wednesday so he could get some dynamic (uncomfortable) X-Rays of Andrew's leg so we can figure out what is going on. Those showed the socket that was too shallow back in November got deeper but at the wrong angle and his ball isn't sitting in the socket correctly, causing it to try to come out near the top, leaving a gap at the bottom of the socket. This explains the pain he's having and why his leg turns in, gets stuck, and causes so much pain. 

So, shortly after radiation is finished he will have a pemberton osteotomy. His primary orthopedic oncologist will assist another ortho who specializes in pelvic osteotmies where they will cut the pelvic bone above his joint and put a wedge in to bring down the bottom section of the pelvis, which will then give better coverage over the ball to make a "hood" and better fit. We asked about reocvery and I believe he was being intentionaly vague and said it would take about 6 weeks for the bone to grow in the wedge space. In other words, goodbye summer and any small chance he had of playing fall soccer. 

While this isn't exactly the news we are hoping to hear, we feel confident in the plan. We have been so happy with how our concernes have been heard, acknowledged, and taken seriously. Not only did Dr. Scharschmidt not have any appointment times available today but still made sure to see us, but it was him, not a PA, NP, or even the Fellow. And he was waiting on us to arrive and view the xrays asap. Within 10 minutes of the xrays being finished he came into the room with a very detailed explanation showing us the progression of the socket shape over thenpast 6 months and a plan after having already consulted two other surgerons and getting Dr. Craig Smith, another pediatric hip preservation specialist who specializes in dysplasia and similar procedures onboard to lead the surgery. He also said he would let his primary oncology team know the plan. The coordination of care is really excellent here taking so much of the burden off of already stressed parents. 

We don't think it's a coincidence that on the first day of not doing our weekly Zoom Rosary that we got the call that Andrew's PET scan was negative. Thank you Jesus! We, along with so many others family, friends, family of friends, friends of family, and many more have been praying for this day for Andrew and we cannot thank you enough. Thank you to the Hauserman and Frey families for dedicating time each week to Andrew as well as the guest leaders and all of those who attended even just once or even for part of a Rosary. Andrew loved seeing everyone especially, when in the hospital. 

Since August, we have called on St. Peregrine, St. Padre Pio, Blessed Stanley Rother, our Blessed Mother, his guardian angel, and many others for our intercession of prayers and they have been answered. While today we celebrate, we know the battle is far from over. It's difficult to be thankful and want to celebrate such a huge milestone when so many others don't get to ever hear the words "negative" or "all clear". Last week 12 year old Joshua's battle ended from metastatic Ewing Sarcoma after a long, 794 day fight and teenager Sasha had her second relapse after an intial metastatic ES diagnosis.

As we transition from regular trips to Columbus and head into local outpatient radiation we can finally clear out the suitcase, dufflebag, and vehicles replacing hospital necessities with adventure gear, and think of and continue to pray for those children and families who haven't had the same opportunities as Andrew. 

HurricaneAndrew2.0 

https://youtube.com/shorts/AspklVUcR9Q?si=q1DKXZqdmmlekyF2 

Next up: evaluation today with in person outpatient PT and next monday radiation simulation (take 2)

Radiation for 10 business days hopefully starting on July 1st.

June 14, 2023.

Andrew had his annual physical a year ago where he weighed 43lbs. His doctor noticed he was in a stroller and commented on it. She said that it was odd he was having pain because she thought he should be fine and back to playing by now after SCFE pinning. And so began researching other doctors for a second opinion. We didn't know it at the time, but over the next 7.5 weeks he would lose 6 lbs, only to be discovered at that second opinion when our lives changed forever.

June 14, 2024

Weighing in at 46.8 lbs we are celebrating that net 3.8lbs weight gain, 52 nights of terrible sleep in the hosptal, 64 days of chemo, 43 weekly zoom rosaries, 14 nulesta shots, 3 blood transfusions, 1 platelet transfusion, the 6th and (hopefully) final cast, and approximately 8k miles driven. His post chemo chest CT is clear, but we will have a few more days before we have the PET scan results. And then we will repeat the lung CT and xrays every 3 months for the next two years. 

Andrew had another echo this morning to confirm the results of the last one and the results from the echo last week were confirmed, there is a slight decrease in heart function. It's still considered within normal range, but he will need to be followed by a cardiogist who specializes in oncology. It sounds like worst case scenario at this point he will be on blood pressure medication. After the echo, we headded to PT. When we arrived at PT she took off his cast and noticed a red spot. She left it off and it didn't improve at all so its likely a pressure wound. Some of the side effects of vincristine prevent healing and can lead to pressure wounds. So instead of wearing nearly all the time he is only to wear it for an hour at a time a few times a day with his leg straight out to get maximum benefit without making the sore worse. Chemo was short and sweet. We had a few visitors stop by including Aylana the psychologist and Marcia the social worker. Both sets of grandparents came up for the occasion and one of his buddies, Anthony Merchant, joined us for the after party on the terrace and at the playgrpund we have passed so many times, but were never able to play on it. The kids had an absolute blast. 

Despite the appointments today, we have so much to celebrate and be thankful for, but we still have so much fear and worry because Ewings Scarcoma can rear its ugly head in 3 months or 15 years (probably longer) after treatment. So we wait and pray. We pray that Andrew will walk again pain free, he won't have serious long term effects from the chemo and radiation, that he will be part of the 20-40% who never have a relapse, the 90% who don't develop a secondary cancer, the 75% who don't need an amputation after limb saving surgery, the 30-40% who survive 5 years, and part of the very rare who live a long healthy life into adulthood. Even if there is only 1% chance, we have hope. 

We celebrate and offer thanksgiving for every little thing these days. Even something as simple as (finally) growing out of most of his size 5 clothing, sneaking a few books on the audible account, or a piece of candy when we're not looking. 

Next up: 

Labs until his counts fully recover. Today they were 300. So hopefully just once next week.

We are trading our time at Southwest labs for PT at Lifeworks across the street with evaluation on Wednesday. 

Finalizing his next, more permanent wheelchiar that will provide better support for his growing body and allow him to self explore on different terrain. Fingers crossed insurance covers it. 

June 24-radiation simulation at Cleveland Clinic. While we explored the potential for whole lung proton radiation, but after consulting with Johns Hopkins, one of the few who offer it (no one in Ohio does this), we learned it is primarily being done for girls to try to decrease the chance of causing breast cancer. So, at least at this time, it doesn't appear to be much of a benefit at least for Andrew. The doctor we consulted with personlly knows the radiologist we will be using at Cleveland Clinic and is actually meeting up with her ar a conference in Australia this weekend. He said she is very skilled and felt she would better be able to "carve out" the important organs and spots with intensity mediated radiation than avoid extra exposure with proton radiation. So that was fairly reassuring. 

July 1st- Tentatively radiation starting and continues for 10 (business) days at Cleveland Clinic main campus.

Monday's appointment at Cleveland Clinic for the simulation was a waste of time and $20 parking. This is what happens with the people who know what needs to happen aren't allowed to schedule their own appointments. The radiologist said she wouldn't want to start until the first week of July to let his immune system recover, but part of the simulation was placing stickers on him for positioning but they won't stay on that long. So the options were to give him 3 "small" tattos (yes, tattos, in a 7 year old!) With UV and "something else" or wait until the week before it would start and use the stickers. So we left with nothing accomplished except using the dwindling PTO. 

Wednesday's last long chemo was probably the most enjoyable day at the hospital. 

They had a last minute cancelation so we were able to check in and do the urine sample at 9 before headding down to cardiology for the echo cardigram and another xray since he had so many issues over the weekend with his knee. By the time we got back to the 11th floor they already had clearance to start and chemo had been ordered, made and delivered. So quickly accessed and started premeds. While waiting for those to kick in, the nurse practioner stopped by to go over the cardiology results and talk about next steps. His cardiac activity has slightly decreased each echo. The shortening fraction has decreased, but ejection fraction has remained. It's still technically in the normal range, but because of the continuous decrease, he will need to have cardiac followup. She didn't think he would need to be medicated at this point with blood pressure medicine, but she said they found if they intervention early they can usually prevent it from getting worse. She said typically cardiology doesn't care as much with changes in shortening fraction as much as ejection. We knew this was a possibility because of the doxorubicin chemo drug. She said there was never enough change on the echos to change the dosage when he was receiving it, to give a little perspective of how others fair with it. She said it's not something that will get better on its own and the goal is to keep it from getting worse and early intervention usually is successful. 

Next was Dr. Scharschmidt and his Fellow, TJ. They said the xrays were fine. I showed him pictures of his positions when he was in bad shape Saturday night and told him it looked like how my shoulder feels like when it subluxes and he agreed that's probably what was happening. He is hopeful that after chemo Andrew's strength can impvoe and will help with stabilizing everything and it wont be a long term issue. He said if that doesnt help, the next time he needs to "grow" he can tighten everything up while in there, but that would be last resort. Until then, keeping him as comfortable as possible when it happens is best that we can do so hes going to get him more valium for if it happens again. The last time it happend was the first night of the last 5 day but the pain wasnt as severe and he was able to easily go to sleep and woke up fine. 

Chemo started quickly so that we would be doing last mesna at 8:45, which meant we needed to spend a few hours on the 12th floor since the 11th floor closes at 6. They welcomed Andrew with a cute sign on the message board. The only small hiccup was the nulesta shot didn't show up from the pharmacy. So they are going to figure out where it went and deliver it to the house tomorrow. This was the last time we would be here long enough for a monopoly game so of course we played. Started with Andrew, Mom, and Grandma Sue. Then in the afternoon Grandma Paula and Grandpa Dave joined in. Even though Andrew didnt get his beloved Yosemite and Yellowstone, he still managed to win in about 6 hours of playing time, with 15 minites to spare before the last dose of mesna came. Cash and property was $50,574.

The kids got to go with some friends Thursday to see the new Garfield movie, surprisingly Amelia did well through the whole movie. 

Friday we packed up and headed to Mansfield to get a new cast for Andrew. He has improved so much again the PT thinks he will only need 1 more casting the week of his last chemo. She is going to try to get it scheduled in columbus since we will be there for the last day.  

From Mansfield we headed west to continue our National Park tour and set out for Indiana Dunes. We had wanted to go last July, but wasnt able to go since Andrew's leg was getting worse so we figured this would be a great trip going into his last week of chemo and his end of treatment PET scan. I conned Rachel into tent camping at a camping 'resort'. We spent the week leading up to this worrying about how Andrew would sleep and turns out he slept better than any of us.  

The Indiana Dunes State Park had motorized scooters visitors can borrow to help make the hiking trails more accessible. It's really made for an adult, with a little more self control than a 7 year old boy. Naturally, Andrew loved it and only got stuck in the mud once. He ran all of us off the trail at least once, but no toes were injured. 

The National Park was supposed to have a variety of chairs available, but they were not.l due to some construction, so that significsngly limited what we could see and do. They did recently add in a wheelchair mat to the beach at one of the sites to see Lake Michigan.

About half way to IDNP and in the city we stayed in, there were wonderful fully accessible "boundless" playgrounds and splashpads. I love how these are becoming so popular. He loves being able to wheelhimself up to the top, pull himself up to the platform and go down the slides on his own. The one in Fort Wayne, ID was especially nice having a lot of levels with picnic tables and such all wheelchair accessible. The water was too cold both at the spladpads and the lake for the kids, but they still enjoyed it. Saturday as we were going to sleep Andrew said "thanks for planning this trips, it's really fun." 

The jury is still out whether we will do many more camping trips or not. Rachel's camping style is more of a Mariott with microwave and mini fridge, suite optional. 

Not getting home until 11pm on a Sunday is kinda crazy when Rachel will be at work at 8am and Ethan has a camp at 9:00 that I'll have to drag all the kids to for drop off.

Upcoming

Thursday- PET scan at Cleveland Clinic 

Friday- last day of chemo in Columbus(not ringing the bell yet), maybe last cast in columbus

Radiation possibly starting first week of July

Hopefully only another month or so of having zero control over our schedules. 

After packing and meal planning on Memorial Day, and coordinating for Ethan to be at a friend's so he can make it to his first baseball game of the season while Mom takes Andrew and Amelia to columbus for a long day of chemo, Andrew's ANC came back at only 350 on Tuesday. So back to labs on Wednesday, only to have them come back even lower than Tuesday. So no chemo this past week. He had a lot of pain in his knee Thursday and Friday, making the casting even more uncomfortable and made for a really long drive to and from Mansfield with multiple stops for him to stretch out his leg. The pain ebbed and flowed through Saturday and by the evening it was really bad. He couldn't sit on his bed, a chair or the couch, and really couldn't be in any position other than being held under his arms or around his chest. We called the oncall ortho and said do the best we could to keep pain under control until Wednesday and he would send a message to his surgeon to try to stop by when we are down Wednesday and if it didn't help, to try the ER. Finally around 20 minutes after valium he was able to fall asleep sitting upright on the couch, but only for a little over an hour and woke up even worse. His knee was stuck internally rotated and his foot was pointed straight. He couldn't be touched from the belly down on the right side without screaming. He was shaking so much from the pain he beggged us to make his leg stop trembling because the movement hurt even more. It was so heartbreaking watching this. He kept crying and saying thinks like that he loved us and wished we didn't have to deal with his pain, really hoped he can walk by the time he's 18, and then right before he caved and said he would let us try to put him in the car at 12:30am to try the ER he said he didn't want to be in a wheelchair the rest of his life and sobbed and sobbed. This is the stuff the parenting books don't include- how to stay positive when stuff just sucks. So after about 10 minutes of manuvering car seats because he couldn't get into his booster, we were on our way. The first few minutes of the drive were rough. He was yelling at every bump in the road like when on the way to the hospital for Andrew's birth. Oddly, he finally fell asleep on 71 and when I got him out of the van he said he felt better. I held him up, made him stand and somehow his leg had straighted back up and unlocked after about 5 hours of extreme pain. Not really believing this we hung out in the parking lot for a few minutes and he apologized and said hes ready to finally go to bed, at 1am. He slept well until 2:30 and woke up again with his leg all twisted but fell back to sleep until 9:30 and woke up perfectly fine, though still sore, stiff, and his knee was really swollen throughout Sunday. Hoping after the chemo is over his salvaged muscles can start healing and we can see what kind of potential he has. In the beginning of all of this, we kept thinking chemo was the end target, but after this weekend it is clear it's really one small step,with many more hurdles to overcome. Ironically, this rough weekend was pretty similar to the weekend exactly one year ago when we had a failed attmept at Cedar Point that ended with us driving home a day early and nearly going to the ER for uncontrolled paid, but he fell asleep in his car seat. 

 Next up:

6/3- radiation simulation

6/4-labs

6/5-Long chemo + echocardiogram 

6/6- fitting with a mobility equipment supplier

6/7-new cast

6/13-pet scan

6/14- last chemo

There were so many changes last week there is nothing else to do other than laugh-cry. You know when you are so frustrated you want to cry but you know it does no good so you laugh to compensate? That was this week. But I'll take it because it's not just a crying week and it means stuff isn't falling through the cracks. 

May 13, Monday

We stopped to see cousin Sam on the 9th floor before we made our way up to the 11th floor. Andrew started casting spells as soon as we could see the check in desk on the 11th floor. The admissions person started printing his bracelet without even asking. His nurse had even pulled the bed out of his room, knowing grandparents would be coming and it's too tight for a good Monopoly game with the bed in the infusion rooms. Everyone knows Andrew.  

Once we got checked in we found out NCH is getting an update to the PET scan so they can't use anesthesia so they wanted him to have it done this week. It's an hour of zero movement and he would have been hooked up to 24 hour ivs for at least a day so peeing comes on strong and frequently. Between that and his inability to lay on the tables without extreme discomfort in his leg, we decided sedation would be best and will have to schedule with OSU or Cleveland Clinic, whichever is first. As of right now thats OSU in June. So the last chemo day wont be his last day down here. 

Another game of Monopoly started on day one. "Buy buy buy, don't wait wait wait or you will get destroyed" was his quote and mantra for this week. Finished on day 2 with Andrew winning with $25,017 in cash and property. 

We had one of the biggest Harry Potter fans on the floor as the PCA today. She is amazing with Andrew and his antics with vitals. Once a few months ago she let him quiz her on all of the characters from Harry Potter and he timed her. She loved it! Today he talked her into a few games of Go Go Thomas.

Monday night he was laying in bed and started screaming for a pain pill. There wasn't anything specefic that he did that we know of but suddenly he couldn't move his right leg independently and was in terrible pain when moved in the slightests way. The immediate thought by me and the RN was dislocation based on his awkward posturing so down to radiology we went. Thankfully everything was fine and by Tuesday morning he was feeling almost back to normal. 

PT surprised us Tuesday with starting the sereal casting. This will help speed up the process of increasing ankle range of motion. To be able to walk you need to have at least +10 degrees and he is at -15 degrees. So the casts, changed about every week, will provide a 24 hour stretch to hopefully get the ROM needed for walking sooner. He will be able to take it off for a bath and he has a shoe so he can walk with his walker and cane. This process was pretty uncomfortable for Andrew so he set the timer on his watch and told the PTs they only had 15 minutes to comolete it and regularly gave them updates on the time remaining. Thankfully, they finished with a few minutes to spare. He also had an EKG to keep monitoring his heart because of the doxorubicin. Keeping him busy and off the ipad/tablet can be challaning at times so i brought up books but he wouldnt read them to me and only wanted to read them to the PCA, Hanna. She didnt bat an eye when I asked if she had 10 minutes to spare. 

Wednesday 

Todd brought down Ethan and Amelia. All of the doctors and nurses loved seeing Amelia and like always, acted like she owned the place. Ethan loved ordering food from the TV in the room. Andrew had his lung CT scan. Mom went home with Amelia and Ethan. 

Thursday

We received the great news his lungs were still clear and started talking about the next steps and how we reintegrate him back into "normal" stuff like what kind and how many days of antibiotics will be needed for a regular dental cleaning, when do we no longer need to call oncology for a fever, when to start seeing the PCP, ect. 

He was finally able to get back down to the PT room to play some air hockey for the last time. He played Grandpa Ron. On Wednesday I asked the PT to push again for Andrew to try an adapted bike and he was willing to try it today. He was embarassed and didn't want anyone to see him and specifically said not to put that picture on Facebook since he was a big boy who doesnt ride tricycles, but he did great. I wanted to see what range of motion he had to see how far off he would be from riding a bike. So now we are on a mission to find an adaptable bike that doesn't look like an adaptable bike. 

Friday

PT measured his range of motion and it increased by 7 degrees since Tuesday so they recasted him again and he will get another one hopefully next Friday and potentially only 2 to 3 more.  

His chess friend, Dominic, from recreational therapy deparment was able to stop by this morning for a final game in the morning and then one of Dominic's coworkers stopped by later in the day to play Go Go Thomas for awhile. Made it home in time to see Amelia still awake for her birthday! Andrew took a nap on the way home but soon perked up when Grandma Paula agreed to play him on the switch. She receved an excellent compliment from him, "You are better than Amelia!"

This last 5 day was bitter sweet. Andrew's door and room were all decorated with Harry Potter that clearly indicated this was his last stay on the 12th floor so he got a lot of extra attention, especially from the many Harry Potter 

fans. Dr. Audino never forgets to grab an unoccupied wand and start 'casting spells' and throw on an invisibility cloak while Andrew is preoccupied. NP Ben caught Andrew in the hallways a few times with his wand down and called him out on it before hiding behind a door. I think because of this being our final stay they upped the chemo time by 2 hours everday so he was able to leave the hosptal at 6:00 on Friday. We had a lot of "thank you, goodbye, but we hope to never see you again" talks. We are so incredibly greatful to be in this position as we know many others are not. 19 year old Bella Decot lost her 2 year battle on Mother's Day and 12 year old Maddie was given a bad report with dismal options on Tuesday. 

Next up:

Labs twice this week

Changing ankle cast at some point this week

Long day of chemo on 5/29

Radiation simulation on 6/3

Last day of chemo on 6/4 !!!!

PET scan at OSU 6/14 unless CC can fit him in earlier

10 days of whole lung radition at CC, dates TBD

Hopefully good PET scan and then will be able to schedule port removal and ring the bell! 

RIP to our friend Jim who passed away from Cancer. I'll miss ya bud. 

  Life sucks sometimes

We have been busy the last two weeks with wrapping up school, soccer is in full force and beginning baseball. We also attended a prayer service in honor of St. Peregrine on his feast day. We were able to fit in the first parties of First Communion, Conformation and Graduation and have started duscussing the next steps with Andrew's treatment. Seeing all of these milestones and community support was a weekend filled with reminders of what all cancer does and does not take from a person. So many things he used to enjoy that he likey would still enjoy, had he been able to walk and get around better this last year. Trains and track have been in the garage for the past month and sadly we aren't sure if they will ever come out. His new bike and helmet still have the tags dangling. And we still have gift cards to the trampoline park that he asked for Christmas of 2022 attached to the refrigerator. Recently there was a disussion in a scarcoma group about limitations and 'new normals', another parent said "defeating scarcoma comes at a high price" and this is so true. Despite this, he has really gotten into card and board games and audiobooks, listening to Harry potter at least twice all the way through after having it read to him once through by Dad, the Magic Treehouse Series and Diary of a Whimpy Kid. And he still loves cheering at sports even if he has no idea what is going on or who is on what team. So, it's no suprise that when Andrew was offered 3rd row ticket to the Cavs game 3 of the playoffs Andrew jumped all over it even though the game started in 4 hours and we were 2.5 hours away from home. Ethan already had plans and Amelia would like have tried to rush the court so it was a Dad and Andrews evening and they had a blast. 

On Friday the 10th, our Catholic Schoolhouse chapter held the end of the year showcase where the students were recongized for their hard work all school year by singing their chior songs they have been practicing, showing off some of the memory work and displaying their favorite art pieces. Optionally, students were able to test their mastory of any or all 8 subjects and Andrew joined with Ethan, and 25 of the other scholars this year in testing for Super Scholar and he passed for Language Arts! Testing was done last week but he received his certificate at the showcase. Last year Andrew refused to go up with his class to sing their song, but this year was completely different. He was so excited to show everyone that he knew his song. He was one of the loudest for a few of the lines. This group of families, past and present, have truly become part of our family, even moreso this year with setting up fund raising, setting up and helping with household and yard work, watching and transporting Ethan and Amelia, making meals, and leading and praying the Rosary with us, and so much more. 

Understandably, we are anxiously awaiting the end of chemo. But Andrew keeps saying he wants to go down a few more times! He absolutely loves the undivided attention and constantly playing games that he can participate in. It has been difficult convincing him out of the house without somehwere to go even for a short walk because there's just not much he can do and the jogging stroller isn't comfortable for more than 30 minutes. We are working on getting him a larger jogging stroller that will better fit his needs. He had a few weeks of decreased mobilitiy but over the last few days he has been more able and willing to try to get around on his own. We recently met up with some friends who introduced us to a great newer playground 20 minutes away that has a smooth, artificial surface that allows Andrew to self propel with a lot of adaptable equipment he can play on. This has really been the first time he could "play" at a playground rather than have us carry him up to the top of a slide and go get him at the bottom. I am imagining a lot of trips to Neura Park in Brunswick this summer. I heard there is a smilar playground in Cleveland that we will have to check out soon. 

The tentative schedule for the remainder of chemo is: 

*5/13 is the last 5 day week! If anyone is interested in visiting or sending him a card let us know.  

*5/29 Long day of chemo 5/29

*6/4 short day of chemo

• final PET scan likely sometime in

June

Tuesday was a LONG day for Todd and the kids. He took all three kids to Columbus, leaving the house at 5:30am and getting home at 11:00pm. Even Mom couldn't hang that long and fell asleep waiting on them. Aside from another chemo done, Andrew is now finished with Gabapentin, a nerve pain medicine hes been on since Thanksgiving for his limb saving surgery. The side effects listed were scary but thankfully we didn't see any. He only has two more Nulesta white bloodcell stimulating shots, which he absolutely hates because of the anticipation. He rarely knows when we end up sticking him so I don't think it's nearly as bad as he makes it out to be. The best part of this week is all three kids went back to the Halls, who have graciously welcomed our kids into their family on Mondays for the last 4 or so years. Andrew has been working hard for the last few weeks on getting up and down stairs, up off the floor, down onto the floor, and using the bathroom independently so he shouldn't need much help as they welcomed another baby recently. Even though it was only going to be a couple of hours to start, Andrew was sitting by the door ready to go 20 minutes before we left the house and then cried when I came back to pick him up. Because he was delayed for this chemo and he has been delayed for nearly every 5 day they are allowing us to push back the next chemo to 5/13, which means he will be able to attend the Catholic Schoolhouse end of the year showcase! He is very exicted about this and doing his best to keep his class' presentation a surprise to us.

This weekend was the start of soccer games and baseball practices. Andrew had signed up for both last spring and tried his best to play, so we weren't sure how he would handle yet another season of watching Ethan play sports he once participated it, but he actually did pretty well including ringing the cowbell a few random times. While we aren't giving up on Andrew's ability to make a full physical recovery, we are hoping to find some type of activity that he can jump into once he has more availability, that requires limited lower body endurance. We have thrown around a few ideas that he seems to be open to but not in love with, so if anyone has any great ideas please let us know. 

The weather was wonderful this weekend and finally got Andrew outside willingly. One of his birthday presents was a set of planes that shoot from a gun (picture a crossbow with a plane on top versus an arrow) and he has been loving them. He spent probably 3+ hrs shooting them this weekend with us chasing after them so he can fire them off again. He has also been loving pushing himself around in the wheelchair sending himself down the hill infront of our house making us chase after him to get him back up the hill.

Next up: a quick 15 minute chemo on Tuesday. 

Happy 7th Birthday to Andrew!

His labs didn't recover last week for chemo so he was able to attend our Catholic Schoolhouse co-op meet up again. He has so much fun and it is a way for him to push his independence. After classes, his friends push him in the wheelchiar through the parking lot and the faster they go the more he giggles. 

Sunday was the big day! 7 years ago he came into the world at 9:01 am on April 21, 2017. Before Andrew could crawl, Ethan would push him on trucks flying through the house and he would just laugh and laugh. He learned to ride a pedal 2 wheel bike a few weeks after turning 3. He always rides every ride he was tall enough to ride at Disney and Cedar Point. He loves speed. So when I saw a facebook ad for a 5k on his birthday I had to ask him if he wanted to ride in the running stroller while we pushed him. It was an absolute yes. Even when we realized the temp would be in the 30s, he didn't care. So that's how we started the day. Todd pushed him 2.5 miles and Rachel managed 1/2 mile. We ended up finishing in under 25 mintues on a hilly course!

The rest of the day was all about his Harry Potter party with family and friends, from near and far. It was wonderful to have a day celebrating Andrew and not worrying about cancer. We went all out in theming starting with Platfom 9 3/4 door sign, a sorting hat that assigned guests with the house badges, floating candles and Hogwarts letters, classes on "potions" and "herbologoy", a golden snitch pinta filled with mini snitches filled with prizes,a quidditch game on the ping pong table, a traditional Hogwarts feast a la Costco, "couldrin cakes" with butter beer ice cream, and a Honeydukes Candy Shop table with many staples including chocolate frogs! 

Afterwards, the older siblings played soccer while the little ones rode the zipline, Andrew included. When it had mostly cleared out Andrew told me he had an Awesome birthday. This is such a stark contrast to last year when he was about a month after his SCFE surgery and wasn't very mobile yet and really couldn't keep up with his friends. He still isn't walking normally, but he is getting closer every day. 

Next up: 9 hour infusion on Tuesday, 4/23

The first of the 5 days in the hospital was a lot of waiting around. It took 6 hrs for chemo to start once we arrived, but we knew it would take awhile as we had to do direct admit to the 12th floor because the outpatient clinic was completely full. Sometimes things just don't go as planned and there's nothing you can do. Chemo + mesna, a kidney protection medicine he gets 3 doses of per day after chemo, takes 9 hours, which means very late night discharge or an extra night stay. However, this week they let him have next chemo start up to 22 hours after the the prior dose. So, we were still able to get out at 8pm on Tuesday, so not too shabby.

Early in the week, Andrew got to hang out with his friend Kaitlyn who has unfortunately been in and out of NCH for 3 ish years having relapsed twice. She and a friend made some sunshine pillows (round, crotchet, with starbursts) to pass out to all the friends on 12th floor.

One piece of good news that we found out this week is that they have lifted some of the restrictions on visitors to come up to the 12th floor. So we are taking full advantage of that and bringing Ethan and Amelia down to help keep Andrew company throughout the day also so we can be together as a family like we should be. A huge added bonus was that the Merchants went to Cincinnati for the weekend and made a stop in Columbus to see Andrew on their way home on Sunday.

Monday morning the eclipse was all the buzz, but even with the newly loosened restrictions there were still unknowns. Katie our nurse from Saturday was all over it at 7am shift change. She was determined to get Andrew outside to see it, not just look out the window, which we would have been happy with. We practiced a little using the glasses in the room and found the glasses didn't stay too well on Amelia or Andrew so we tapped them onto sunglasses,which worked much better. Chemo finished up around 2:45 and nurse Katie was all over it to get him signed out. Andrew didn't seem to enjoy the sunshine as much as we had hoped but he enjoyed looking at the progress of the eclipse. That is until a small adjustment unhooked the IV and started leaking blood all over his lap. Thankfully, there were plenty of employees around and the oncology nurses jumped in and had a flush hooked up quickly. And just like magic, a Child Life specialist appeard (I think they can smell stress and anxiousness) and started making small talk with Andrew while the nurses stopped the blood and hooked up the flush. Initially, we thought he needed to get back inside to get it cleaned and hooked back up, but got the okay he could stay until the dramatic part was over. Columbus didn't get to see complete totality, but it was still amazing experience we were able to see together. 

It's hard to say if it was the increased in daylight or having more visitors and siblings, despite the bickering, but Andrew had much more energy and appetitie this 5 day. 

PT is still going slow, but steady. His knee isn't bothering him as much lately. His primary issues preventing him from walking are the lack of flexibility in his ankle and hip flexor. This week they mentioned a couple of options for speeding this up including weekly casting and a boot that works similarly for ankle flexability. One of his chemo drugs increases chances of skin sores so we are going to give the boot a try at least until chemo is finished. 

Tuesday morning Amelia woke up with a slight cough and runny nose and a bad fake sneeze, so we decided to keep her out of the hospital and Todd took her home early since he had been gone since Friday and had a long work day on Wednesday. Ethan stayed because he loves Mom reminding him to do his schoolwork...and to keep Andrew entertained. I think he really just liked ordering food from the cafeteria.

With this chemo week in the books, we are now officially down to 9 more days of chemo! The next hurdle will be if he can recover quickly enough to not have anymore delays so he doesn't miss the Catholic Schoolhouse Showcase. If he doesn't make counts for the next chemo to be on time it will push everything back and he will likely be in the hosptal for the last 5 day during the showcase. He has been practicing his class' song almost daily and is really looking forward to it, so hopefully there won't be any issues. 

Next up labs and then a really long day Friday, 4/19. 

Although Andrew was still unable to walk this Easter, he enjoyed the mild weather, hunting Easter eggs with his grabby claw, playing with his cousins, learning a new version of Uno, and silly string fight with his brother and sister! We even came home to a surprise egh hunt in the front yard. 

Lab levels were good on Monday and good enough Thursday for the next chemo so Andrew and Todd are heading down early Friday morning for a 5 day stay. Rachel will be switching with Todd on Sunday so Todd can work Monday/Tuesday.

Only 9 more days of chemo after this 5 day. We are excited to close this chapter and anxiously awaiting the details of upcoming summer of radiation. 

We try to live a life with cancer instead of living a cancer life but it's incredibly difficult.  

Monday's labs were bordlerline (ANC was nice and high at 7k, but his platelets were low at 43) but they wanted him to come down as the platelets should be coming up very soon since his ANC was so high and felt fairly confident they could be in the 60s which would clear him for chemo. So, Monday night Todd took off at 6:45pm with all 3 kids for the Ronald McDonald house for an 8am clinic appointment. Unfortunately Andrew's platelets were only up to 45 by 9am so they were sent home. Labs on Thursday for Friday chemo. 

This picture shows life with cancer. 

Arches NP holds a lot of meaning. Our trip to Arches last April was the beginning of this awful journey. I specifically remember waking up ridiculously early that first morning to see the sun rise at The Windows at Arches NP. It took longer to navigate through the park than we imagined so we were trying to hustle to get there before the sun poked through the opening. Andrew wasn't able to keep up. He kept stopping to sit then finally said he wanted to be carried. That's when I knew something was wrong and then progressively got worse over the next two days before we took him to the ER. 

Despite that trip being the end of his freedom and being a normal child as he knew it, when Todd took him to Sierra on Monday, he picked out that hat. He could have choosen another hat or something else as he has quite a large hat collection now. Arches will always hold the terrible memories of him being in so much pain that night we took him to the ER and finding out he needed urgent surgery, but it also holds some great memories of the kids playing at Sand Dune Arch, the excitement of cable at the hotel and swimming in the heated pool. Like we try to live a life with cancer, Andrew chose the good memories of that trip to Arches. 

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light." Professor Dumbledore in book 3, The Prisoner of Azkaban 

Thursday started out great with a day of Catholic Schoolhouse co-op, moved from Fridays during Lent, only to get a call around 11 that he needed another blood transfusion that afternoon because his hemaglobin dropped to 6.6 and they wanted him there at 2, but could go as late as 2:30. Considering how long it took my brain to accept and adjust I can't blame Andrew for beaing a bear most of the afternoon. Thankfully, Grandma Sue, Grandma Paula and Grandpa Dave were able to come and by discharge at 7:30 he had finally eaten his lunch and was in a little better mood.  

As the stressful day settled down we decided to ask if we could get away for the weekend and they agreeed as long as we stayed away from large crowds so we decided to skip school on Friday and head to Philadelphia, to see some of the places we learned about this year with US History. I already have outlines for 4 or 5 drivable trips ready to go so there wasn't much to plan once we found a hotel with credit card points. On the way there we stopped at the "little mountain train" (Dequesne Incline) in Pittsburgh. Andrew and Amelia really enjoyed it. Staying away from crowds in Philadelphia cut out some of the bigger attractions like The Franklin Institute and Please Touch Museum, and stairs cut out the Betsy Ross House, but we still saw a lot including the 2,000lb bell (according to Andrew). There were a few areas of smooth brick/cement walking paths so we went it the evening hoping there wouldnt be too many people and Andrew could wheel around freely. It worked out perfelcty and he had Ethan and I take turns doing sprints with him. After that we found a small playground about 1/2 mile from the hotel. Andrew now has no physicsl restrictions for his leg so he went down the straight slides about 15 times in a row. The curvy ones bothered him quite a bit. He had so much fun even though it was a pretty tame slide. Before we headded home on Sunday we went to Mass at the Cathedral and stopped at the Shrine of St. Katherine Drexel, a saint they are currently studying. We had a little extra time so we went over the Ben Franklin bridge to a playground in NJ so we could check off another state then headded home. Andrew's comfort was much better on the way home than than the way there, when we had to stop about every 90 minites or he would get stiff. 

It's difficult finding things to do that are somewhat fun for Andrew and away from germy situations when he really wants to run, ride, jump, swim, and climb like a normal kid and while it's not his first choice, he seems to enjoy earning and collecting his Junior Ranger badges. There were a few times this weekend we ueard some belly laughs when speeding around in the wheelchair and going down slides for the first time in many months so it makes it worth it. 

Up next: labs on Monday, chemo on Tuesday and hopefully will get started early and can get home late Tuesday night

As of Saturday night, Week 25 is in the books. Only 2 more of the 5 day weeks and 16 more days of chemo, then scans to hopefully give us the the all clear. We hope that we won't have anymore overnights other than the 5 day weeks now that he's finished with doxorubicin. That drug required 2 separate days of chemo infusions; now it's one really long day with getting a kidney protection drug 4 and 8 hours after the chemo infusion, which can sometimes take 3 hours to get started, depending on how busy they are. We are hoping to utilize the Ronald McDonald house for the night before these days, so we can get in early and out at a reasonable time.

The farther into treatment, the more these 5 day weeks takes out of Andrew. He often falls asleep by 7 and sometimes after a lazy afternoon or afternoon nap. Thankfully, most of the fun stuff happens early in the day while he has some energy. He had a lot of visits from Recreation Therapy this week and learned a new card version of Monopoly. David, the Massage Therapist stayed a little longer than normal helping us through our first game. The biggest win of the week is that Andrew is now able to go to the therapy room for physical therapy and was introduced to air hockey. He hasn't stopped talking about it since that first day on Wednesday. He also tried the squat machine for the first time, but that was much less exciting. He can take about 10 to 15 "steps" at a time with his walker. His goals right now are taking steps with a more natrual stride length and adding more weight to the right leg. He also has a cane to try to use, starting with going from sitting to standing. In normal Andrew attitude, he's not too keen on using a cane, but like with the stroller, wheelchair and walker, with time he will hopefully accept the potential benefits. Even though there really only is about 15 to 20 minutes of activity, he's pretty sore after PT, especially the muscles in his feet. It's hard to believe he hasn't been able to walk for 11 months. 

As hard as these weeks are, it's sad knowing it could be so much worse. Baby Stella has been in the hospital since September. She learned to walk while in the hospital and now she's walking all day and night up and down the halls. I can only imagine how difficult that is for her parents. After only a few days I'm itching to find an excuse to leave the building even if its to "shop" at CVS across the street. 

And that's why we celebrate freedom from the hospital and feeling like crap when we are able. So, on Sunday, Andrew and BFF, Brian went to Paw Patrol Live at Playhouse Square. The little boys were filled with excitement, I think the little sisters were confused as to why people were riding stuffed dogs, and I think the oldest siblings were trying to plan their escape, but ultimately stuck it out. The most exciting part from my perspective was that Andrew wanted to go down the stairs completely by himself afterwards. We will see how he sleeps tonight after that. 

Up next: labs, then hopefully a 1 day chemo on 3/19. 

2/29

What a whirlwind. Last night got the call that his platelets were too low at 16 so we had to rearrange a few things to get back to Columbus yesterday. The only appointment available was at 3, which happened to work out perfectly. Andrew was still able to hang out with his friend Anthony before we had to leave. We were able to get a little school done on the way before A Team needed a nap. Andrew finally ate solid food today without complaining. At weight in he was down to 19kg from Friday's 19.9kg. This was our first experience with platelets and was happy it's much quicker than whole blood. He was discharged within 95 minutes of check in time. The plan was for the next chemo to begin on Friday, but labs need rechecked after 72 hours of receiving platelets so the earliest will be next Tuesday. 

2/23

This first week without the brace has been great! His pain levels are starting to decrease, especially at night. The few weeks prior the pain was pretty intense in the middle of the night. Hes still on gabapentin, nerve pain medication, but hasn't needed Tylenol in the last few days. While hes not back to hopping on his good leg yet, he's getting more mobile and his Achilles is starting to flex easier. He regularly asks us to stretch it for him. We are also trying to work on reincorporating differnt sensations to his foot. Since he hasn't been able to use it or make contact with anything other than socks for months, his foot is very sensitive, but primarily tickles, so not too bad.

Between his regular pickiness and getting some mouth sores he hasn't been willing to eat much recently. Every now and then he surprises us though. This week he ate a (healthy) muffin, likely for the first time ever. He typically wont even try muffins, so this was a nice surprise. 

He has been a little tired a few days this week, taking a mid day nap Monday and then wanting to go to bed at 7:30 Thursday, so we are anticipating needing some blood during his clinic appointment.  

God is hearing our prayers!

Andrew had another lung CT this week and his lungs are still clear. The ortho fellow said his xrays look great, the socket is reforming nicely, and the best part of all, he is DONE with the brace! There is still a slight chance of dislocation because healing is much slower with cancer patients, but should only be a few more months of worry for that. Overall he said hes doing better than expected and we should see rapid improvement once chemo is finished. At that point he will likely move from virtual PT to outpatient PT. 

We briefly talked about radiation. Nothing will be done until chemo is complete. As long as no other mets emerge, only his lungs will be radiated. It will likely be Monday-Friday for about 6 weeks. Possibly longer depending on the radiologist's plan. Depending on the type of radiation, we may be able to do this in Cleveland.

Additionally, our friend Maddie is out of the ICU now and will hopefully be discharged to the Ronald Mcdonald House soon.

With this nice weather we were itching for some adventure. Andrew had on and off pain throughout the day Friday but was adamant we were staying in a hotel so after co-op and Ethan's middleschool Glow Party, we headded to Dayton. It may have been the Tylenol, but Andrew did very well on the way there. 

On Saturday we spent most of the day exploring the Dayton Aviation Heritage National Historical Park. We started with the Wright Dunbar Interpretive Center, Wright Cycle Shop, and Parachute Museum then went to the Paul Dunbar House for a tour. The kids earned 2 Jr. Ranger badges and they gave us a 3rd with packets to complete at home for the upcoming eclipse. Amelia was having a rough day and it was too early for bed but too late for a nap so we went to Owen's Playground, a mostly ADA accessible playground. It was nearly 60 degrees so it was packed. Andrew's favorite part was going down the ramp at the treehouse. There was a slow moving modified fireman pole and he enjoyed that, too. He really wanted to swing in the disc swings but it didn't work with his range of motion and he was pretty bummed. 

Sunday started with Mass at St. Helen's, then onto the Air Force Museum and Boonshoft Museum. In between we drove past the Huffman Prarie Flying Field where the Wright Brothers tested their airplanes. The AF Museum was pretty boring for Andrew until we got to the President section and was able to tour some of the planes. He also enjoyed rolling down the wheelchiar ramp in the R&D section multiple times. There wasn't much Andrew could do at the children's museum, but they did have a chess board that entertained him for awhile and a small animal section. There were a lot of toddler sized windows so he was able to see quite a bit without us having to lift him out of the wheelchair. 

Andrew gets stiff after being in the wheelchair for too long, but for the most part Andrew's pain level was mild, at least until we got home. This gives us hope for more adventures.  

His ANC was still low on Monday, at 190, so chemo is delayed until Thursday.  

Up next: 

This week chemo Thursday/Friday.

Next week Thursday 

Also, we ask that you add two other pediactric cancer warriors to your prayer lists. 

1. Our new friend Maddie, who only Todd has had the pleasure to meet, is a 12 year old from Cleveland also being treated at NCH, who is having complications from treatment for her agressive cancer and recently came off a ventilator and should be out of the ICU this week. She has a long way to recover. 

2. Bella is a teenager from NewLex who was diagnosed in the spring of 2022 and is now at home with hospice. 

The longer we are on this journey we have come to realize you are never really done with cancer. With so many types the chance of relapse and secondary cancers can be very high. However we still cannot wait for those three letters NED, no evidence of disease. It may be temporary and he may not have perfect use of his leg, but it will be nice to have some time outside of obsessing over hospital schedules. 

Live life to the fullest; tomorrow may never be.

Two years ago we were beginning the planning of our next trip to Disney, that would have been around this time. That fall, a friend mentioned an intense 2 day/1 night trip she took and encouraged us to do it...when the baby was older. The next morning I went for a run (which ends up being the parent version of late night drinking solving all of the world's problems) and formulated a plan to do with 3 kids but 3 days. So, on 1/29/23 we set out for our crazy intense "inbetween" trip where we met with the O'Donnells and Grandma and Grandpa Paula and Dave joined for a day. We took the early flight out with only backpacks, went to 3 parks, and took the last flight home in 66 hours. We did little more than slept and ate breakfast at the hotel, spending most of our time at the parks. It was exhausting and wonderful all at once. And now, thinking about the trip we are missing while Todd is with all three kids in Columbus for Andrew to get his vincristine today, and unplanned transfusion again makes that trip so much more special. I regularly hear people talking about waiting until the kids are older to do....anything...and I can't seem to scream loud enough to not not wait. Even if you can't do *the* trip you dreamed about, do something, because you don't know when you are going to wake up to tomorrow heading for a chemo infusion and blood transfusion rather than Mickey waffles.

Carpe Diem...

On a positive note, Andrew has been spending more time out of his brace and can now keep his leg from being externally rotated all of the time. He is also tolerating putting on and removing the brace much better so he is finished with his diy pants and wearing normal clothes again. While, unlikely, he is working hard in PT so that he might be able to get back to soccer the last part of the spring season. 

Up next: 

Rosary tuesdays at 7. 

Tuesday 13th, Rachel will be taking Andrew down to Columbus for a over night stay. 

Picture is of Brian and Andrew at Magic Kingdom from that trip.   

We don't have a lot to update lately. We are enjoying having the majorty of our time at home. We had a quick trip to Columbus last week for a blood transfusion due to low hemoglobin. Andrew has in person PT when he's inpatient in Columbus and then virtual PT at home 1 to 2 times a week. Those who know him know he's not always the most cooperative and that doesn't change with PT. Understandably, he is apprehensive about the potential for pain so he shuts down when they want him to try something new. We are still working on getting his leg straight and flexing his ankle to 90° as his hamstring and calf are extremely tight from being non weight bearing for the majorty of the last 9 months, the angle of his brace since November, and then his newly lengthened leg. His leg is still externally rotated quite a bit but we are now able to prop it into the right place while his brace is off. With some bribing, a special shoe extender, and reminding him of what fun he will have once he's walking again, he has been able to use his walker to "walk" from the couch to the stairs in close to a normal gait a couple of times. One of his favorite exercises is "kicking" us with his right leg. What 6 year old wouldn't think that's the most hilarious thing in the world? 

Up next: chemo Tuesday and Wednesday of this week. 

Please join us every Tuesday at 7:00 pm to pray a rosary together, via Zoom, for the healing of Andrew. Additionally, if you feel inspired to lead the rosary one week, please let us know. 

Follow the link below, to join:

https://us02web.zoom.us/j/84210801773?pwd=U2hWUjF3RHZuaTFHbGN3MWxOcytiZz09

Meeting ID: 842 1080 1773

Passcode: 368582

Andrew's ANC went down last Tuesday, but platelets went up so the doctor approved to start chemo. The orthopedic oncologist met with us and said Andrew is doing great. He will be in the brace for two more weeks and the next time we are down he will have Barry (or Bluebarry as Andrew calls him), the brace guy, make some adjustments to give him more range of motion. We discussed things to look for should he do something a normal 6 year old boy might do and end up dislocating it, since he apparently has a high pain tolerance having been walking on a fractured femur over the summer. He also reassured us that should that happen and we can't make the 2 hour drive to Columbus he knew surgeons at UH, CC, and Metro that he could call. He specifically mentioned one doctor at UH that he recently trained when he was a fellow, so that's reassuring. 

On Wednesday Andrew played Monopoly, sorry, trouble, chess, had PT, music therapy, massage therapy, took a walk around the floor in his wheel chair casting spells on people and FaceTimed 6 different people. (Let us know if you want on the list to be called!) Dominic, the 22 year old recreation therapist who we found after his surgery in November, played Andrew in chess again. Dominic is about the only person in the hospital Andrew seems to like. 

The doctors and NPs had warned us that the longer we get into treatment the more it will affect him. This 5 day chemo stay wiped him out, most nights he was falling asleep by 7:00, sleeping 12+ hours at night and napping during the day. 

We made it home Saturday night at 9:45 and by Monday morning Todd and the boys had COVID. Thankfully the boys are pretty much over it already.

Next up: labs this week and early next week. Scheduled for another 5 day on Tuesday the 16th but with having covid its unlikely his counts will recover in time so we won't likely know when hes going back down until the day before.

A lot of 2023 sucked. Like a lot. But we are incredibly grateful for our friends and family were by our side from day one and we are still here to reflect on it. Despite Andrew's cancer diagnosis, 5 surgeries, a new femur, and not being able to walk since March we made some great memories including so many playdates, homeschool co-op, family trips, friend trips, birthday parties, zoom rosaries and late night cuddles. While hospital stays and dealing with a broken leg slowed us down, once we regained our footing in day to day cancer life, we were able to cross off a couple more of the 2023 bucket list items that we made back in February. The kids' favorite memories were:

Ethan: seeing arches at Arches NP (his pick with the Every Child Outdoors pass)

Andrew: going to Grandma and Grandpa's and seeing (2nd cousin) Gunner at Christmas 

Amelia: seeing Minnie Mouse (at Disney)

While Andrew still isn't able to get around in a way that anyone wouldn't describe as walking, he has made huge strides with his mobility this week and is now able to get up from the couch without assistance, use his walker and his good leg to get across the room, and was even able to sit in the padded pew at church instead of his wheelchiar! 

With these small, but gradual improvements, we are going to keep making plans. 2024's bucket list is aggressive and will be nearly impossible to complete even without 5 to 6 more months of chemo+ radiation (we think really big here),but we will also be adding a few Andrew specefic goals like walking, swimming, riding a bike, and if we are lucky lacing up his soccer cleats. The kids said they are looking forward to:

Ethan: Learning to do sick tricks on his bike

Andrew: Harry Potter world

Amelia: Spider man

We look forward to sharing with you all of Andrew's accomplishments in 2024, both big and small. 

Here is a link to Andrew's first few steps on Wednesday.

https://youtube.com/shorts/OLHSzeW8apw?feature=shared

Up next: Heading to Columbus on Tuesday for 5 day chemo. As of right now we are unsure if he will be sent home because his platelets were too low (38, needs to be 75) but we are willing to risk it rather than having to push it back and have to spend the entire weekend in the hospital. 

Merry Christmas!

We were blessed to spend Saturday and Sunday with family and then spent Christmas day at home. The kids were definitely spoiled this year by family, friends, and family and friends of family and friends. 

Upcoming:

Tuesday the 26th is a 1 day chemo and planning on taking all of the kids.

We are able to spend New Year's Eve and Day at home then we will be back down Tuesday the 2nd to start a 5 day chemo week, to finish his 4th round of chemo. 

We were finally starting to enjoy our freedom once Andrew's new wheelchair arrived and began seeing some little hair nubs coming back on his head and eyebrows when we got the call that chemo is resuming on Monday the 18th. So naturally, we jam-packed a whole lot of Christmas activities into the last few days.

Thusday was an impromptu Polar Express day with friends. 

Friday was the always exciting gift exhange and crazy Christmas sweater at our homeschool co-op. In very Andrew style, he wore a shirt with Santa driving a monster truck giving a peace sign. Then we met up with Grandma and Grandpa for a trip to Crocker Park to see Santa, ride the train, buy more Pokémon cards from Barns & Noble, check out all the Harry Potter Legos, then roll through the lights displays. then We hit the Seabury lights display in Fairview park on the way home. 

Saturday we met with friends at the Puritas Nursery & Greenhouse for their Christmas train display. This was really impressive. Then Grandma and Grandpa Smith joined us in seeing friends in a performance of the Nutcracker. We were shocked at how much Andrew enjoyed this. If he felt like we weren't clapping loud enough he made sure to let us know. 

Sunday was Mr. Kringle Inventionasium and winter lights at the zoo. The Mr. Kringle thing at Tower City was cute. A bit overpriced and I can't see what the hype was all about I had seen over the last few years about this, but glad we got to go. Everything was accessible for Andrew and he wheeled himself the entire time. The zoo lights had a conductor who was dressed and talked like Tom Hanks, the conductor from Polar Express. The boys were quizzing him on all of his favorites from the movie. 

Every single day he is improving and it's so encouraging to see. Within the last few days he will sometimes let us carry him in an upright position without causing too much discomfort (this is much easier than the fireman carry) and he has been having more control over his lower right leg and can now kick at the knee. His new, smaller, reclining wheelchair arrived Thursday and has been a huge blessing to his independence, but also a test to our patience. He has a little too much fun teasing people by pretending he's going to run right into them then stopping centimeters before hitting them. This wheelchair is also perfect height for his friends and siblings to push. So he regularly gets to go on quick thrill rides when he can talk someone into a sprint. He tried to get Ethan to do donuts in the parking lot after Mass, because, why not? He definitely lives life to the fullest. 

Wednesday's two weeek follow up went great. Dr. Scharschmidt said he is well ahead of the curve and hoping the tumor board will agree with him that because the tumor responded so well to the chemo (by how much it shrunk and died) as well as the clear, albeit tight margins, pathology report that we won't have to do radiation to his hip. One of the concerns with radiation to the hip is that it could damage the growth plate at the hip socket, necessitating the rest of a hip replacement. Lung radiation will be much later and will be approximately 10 days. Chemo will most likely start next week and Dr. Scharschmidt will see him again for xrays to make sure the head is still staying in the socket. He will need to wear the brace for another 2 to 4 weeks. It is no longer uncomfortable for him, which is a relief. He is almost able to straighten his right leg at the knee and with virtual PT, he has been able to "stand" on both feet, though not flat footed, up right or much weight, it's a start and very encouraging. He hasn't been taking much pain medicine regularly other than the nerve pain medicine and hes been pretty good. He has mostly been sleeping through the night on the couch but we hope to transition to his bed maybe this weekend.  

Good news on Thursday morning from Dr. Scharschmidt is that the tumor board agreed that with how he's progressing that we don't need radiation on Andrew's hip at this time. We also bought a new wheelchair for Andrew, it got delivered today and is the specific type they wanted him to have. All the donations have really taken the worry of money out of our day to day lives.  

Invited a couple of Andrew's friends over to watch Polar Express, they love that movie. 

The transition to home was a littly dicey the first 12 hours, but Andrew's pain and anxiety over the potential for pain keeps lessoning. We have figured out a few options for him to change up his view and give him a small amount of independence with his wheelchiar on the main floor. We are working on getting some clothing options that will work with his brace without having to remove it more than once a day, but also keep his legs protected from the brace. He's already asking to go to the Pokemon store, our homeschool co-op, Costco and even church. He is much more ready than we are. We started with virtual PT in hopes not to lose too much strength in his left leg and get his right leg primed for weight bearing once his brace can come off. 

On Thursday we receved the wonderful news from the surgeon, while he's away at a conference in Orlando, that there were clean margins, nothing in the bone marrow and the tumor was more than 95% necrotic! While not a lot, this increases his 5 year survival by about 5%. We will hang onto every extra 1% we can get, especially after hearing the news of the passing of a friend's daughter earlier this week, who leaves behind her 7 and 9 year old boys. She was diagnosed at the end of October. Please join us in praying for the respose of Sara's soul. Eternal rest grant unto her, O Lord, and let perpetual light shine upon her. May her soul and the souls of all the faithful departed, through the mercy of God, rest in peace. Amen.

Upcoming: still unpacking from the week in Columbus, follow up on Wednesday with the surgeon, and waiting to find out when labs will resume to determine when chemo will resume.

After an uneventful few days we packed a lot of excitement in today. Brace fitting, epidural removal, dressing removal and PT came to help get situated in a wheelchiar. His incision looked so well they didn't put anything over the steri strips. Because he's on the 7th floor he is allowed to leave the room so once PT got him in the wheelchair he went down the hallway and straight for the door to get to the gift shop. If all goes well tonight and with PT tomorrow he should get discharged. Andrew has been handling the pain pretty well though he is struggling with the loss of indendence. The staff has really been feeding his Harry Potter affinity. One of the orthopedic residents introduced his presence for the morning by waving his wand and casting spells then boasting about his upcoming conference in Orlando where hes going to try to sneak away to pick out another wand, Another resident told him about her highschool movie premier costumes, and one of the nurses told him about her HP tattoo. Mom and Dad could have done without the tattoo idea, but Andrew has been eating it up. 

His brace is set to allow his right leg to move from 10 to 70 degrees and his left hip has pretty much full extension. His right leg is abducted pretty far and it's fixed, so range of motion is quite limited. He will wear this at minimum for 2 weeks but it's likely going to be 6 to 8 weeks until risk of dislocation reduces because of how shallow his hip socket has become. 

Thank you to everyone who sent a greeting card to Andrew, we received 125 of them. He loved every single one. ❤️ 

The surgeon came out at 4:00 and said everything went well. The bone that was removed was tested and had clear margins. He was happy with the amount of salvageable muscle left. (The vert first scan showed significant muscle involvement, so this is excellent. We had notice considerable shrinking of his lump since the last chemo 3 weeks ago.) Andrew's leg length discrepancy was a little more than he anticipated but his legs are now equal, but his muscles will be very tight for awhile because of the extra stretching. He also said the cup of the hip joint was more shallow than he had hoped due to not having pressure of the head in the joint from walking while everything is still growing, so he will likely need to wear the big uncomfortable brace for awhile to add pressure into the joint to make sure it begins getting back to a normal shape. The shallowness will also increase the chance for dislocation so he will have to be monitored very closely for the next month or two to make sure he doesn't cross his legs, internally rotate or bend deeper than 90*. There isn't a drain and they will change the bandages before we leave and the NP can remove them at our first follow up on the 13th so we don't have to worry about him knocking out any of our teeth trying to do it at home. 

All of you have donated in one way or another and we thank you for that. We are going to be here for 7+days. Please shower him with a greeting card, the hospital does them for free. Please use a picture of your and your family, a funny picture, or a picture of him you think is funny. 

He is in room 7A-17

https://www.nationwidechildrens.org/greeting-card

238 days.

Two hundred and thirty eight days ago we were up early after barely sleeping taking Andrew to the very rural Emergency Room in Moab, UT after rapidly increasing pain and inability to walk. He hasn't walked normally since. While his fight with cancer maybe a lifetime battle, today is the day he gets to take back his independence and allow him the opportunity to take his first steps as a 6 year old without a tumor. It's impossible not to feel nearly every emotion the past few days: anger, fear, sadness, worry, hope, etc. What I didn't expect to feel was peace. But that's exactly what happened as I was nervously and anxiously praying while gathering his saint dolls, medals, rosaries and holy water last night. It was the same peace I felt the first night at NCH when I realized he had been asleep for 3 hours for the first time in a couple of months. Last night was just another sign that Andrew is where he needs to be and with his guardian angel watching over him, he's going to be okay. 

When he was 4 & 5 he would tend to want to give up on the last hill on the way back home from bike rides. I would make him repeat the mantra "I am Andrew Smith and I can do hard things" in order to keep from having to walk the last half mile. The next few days are going to be the biggest climb of his life, but his aspirations of all 50 states and 63 National Parks (he claims Yellowstone and Hawaii are next) will hopefully keep him motivated. Sunday night we braved the rain at Strongsville Commons to walk through the light display. In Andrew fashion, he reqested that Ethan push him because he was going to need to "go fast". We strapped him in and let them go and he had the time of his life speeding down the sidewalks, head down fists out, ready to conquer. We hope he can sustain this attitude for the next several days. 

On the way to the hospital this morning Andrew asked who all would be on the rosary zoom tomorrow night. So if you are free at 7:00 he would love to see you online.  

Follow the link below, to join:

https://us02web.zoom.us/j/84210801773?pwd=U2hWUjF3RHZuaTFHbGN3MWxOcytiZz09

Meeting ID: 842 1080 1773

Passcode: 368582

Andrew has been spending the last week and a half enjoying his freedom from the hospital and IVs, being a mostly normal 6 year old. He has had a lot of play time with friends playing board games, pokemon, and building train tracks. He has experienced a tremendous amount of generosity from our community with various fundraising events hosted by Todd's customers at the Parma Elks and our parish's outreach group, Hearts to Hands. It's uplifting seeing and hearing of many friends, family and strangers reaching out to our family continuing to offer financial, physical, and spiritual support. He has received hundreds of cards since his diagnosis, many of them hand made from his classmates when he has to miss due to chemo appointments and others from St. Bartholomew students, most of whom we don't even know. We enjoy marveling at the creativity, artistic ability, and uplifting messages from each and every one of them. 

He has been asking a lot of questions about his upcoming surgery and getting excited about the prospects of being able to help decorate the Christmas tree on two feet and collect more Easter eggs than his siblings this spring. He's most excited about being able to travel south for Thanksgiving and spending it with family, especially since 6 weeks ago we thought we would be in the hospital recovering from surgery this week. We are trying to soak up as much of his independence and pain free energy as possible over the next few days knowing next week we will be back to managing pain med schedules and testing our core strength and stability carrying him throughout the house. Despite the challenging upcoming recovery, we are thankful that God has led us to Nationwide Children's and confident in Dr. Scharschmidt and the rest of the hip preservation team that under their care Andrew will have many days, months, and years ahead of him, on two legs. 

Wednesday the 29th is Andrew's surgery, I will post an update with his room number and how he's doing after so you can send him a greeting card. 

https://www.nationwidechildrens.org/greeting-card

Attached is a pic from the Parma Elks fundraiser.

This week Andrew had his final chemo before the big surgery on the 29th (there will be a lot more afterwards) and finalized some of the details for what to expect during and after the surgery. We also had to say goodbye to one our favorote nurses, Kyle as her travel RN contract at NCH is ending on the 29th. She will be moving onto a pediatric oncology unit in California. Her and Andrew love casting Harry Potter spells on each other. She collects braclets from her oncology kids from her travels and wraps them around her stethoscope so we added a Hurricane Andrew bracelet to her collection.  

On Tuesday, Todd met with Dr. Scharschmidt and called me for the meeting detailing the prostetic, procedure, and what to expect immediately after and over the next 2 years. A summary is he will not be getting the magnetic growth plate initially because that would prevent having MRIs, which are necessary, with having such a high chance of relapse withing the first few years. Instead, when he needs to "grow" he will have a minor procedure under GA where his growthplate will be lengthened manually with an allen wrench. This will be able to expand up to 40mm. After that they can put in a larger growth plate section (the rest of the protestic will remain, including the anchors) or switch to the magnetic option. The actual operation should last about 2.5 hours.

He will be on the 7th floor with fewer restrictions than oncology floor hopefully, so friends and family may be able to visit, as long as he's feeling up to it and there aren't any major outbreaks locally of flu, rsv, etc. Some of the regular team will follow him to the 7th floor including the PT and LMT, which will start the next day. He will be in the hospital for approximately 7 days. Discharge requirements will be pain control and moving around in bed and in and out of bed. 

When meeting with the PT to practice moving around she let us know he won't be able to bend at greater than 90° for 6 weeks because of risk of dislocation, so the stroller will be too much of a risk with temptation to bend over to grab something and will be getting a wheelchair rental. When she brought it in he immediately told her to get rid of it. She eventually got him in it and showed him how to drive it and by the time she went to leave 20 minutes later he asked if it could stay in the room to practice driving. He also asked if he could push his sister in it. The PT's response was "If you can push her I think it's time to return it!" They are ordering a specific chair that will recline as that will most likely be more comfortable than being at 90°. He will be allowed to bear weight and walk immediately, but pain tolerance will dictate that timeline. No one is really giving us ballpark timelines since it's been so long since he's been able to put any weight on his right leg and by the surgery date, a few days shy of 8 months since he walked normally. He should be able to ride a bike this spring/summer and should be able to walk short distances in 8 to 12 weeks.

Being stuck in the hospital for 5 days is rough enough with him being fairly mobile so this is going to be a challange. We are hoping to make the room a little more cheerful by making a poster collage to hang in his room so if anyone has pictures they want to send me or Todd please do! There were great pictures sent in the hospital cards during our intial stay so I thought this would be a good way to allow him to "see" a lot of friends at once. I will probably order it on the 17th to make sure it arrives in time. If anyone is like me and is 3 days late for signing up for everything, you will still be able to send cards to the hospital while we are there and they will drop them off to his room. https://www.nationwidechildrens.org/greeting-card

Quick update:

The scan results are in on mychart, though we haven't spoken with the doctors yet so we don't know if this is more, less, or as expected but the lungs are CLEAR and the tumor in his hip has decreased in size. 

The mass now measures 4.6 x 3.0 x 7.5; previously 7.8 x 7.2 x 9.2 cm. The soft tissue involvement was noted as "remarkably smaller". Tumor had previously included muscles and those are now individal tumors measuring around 1x1x1cm each. 

Necrosis is noted, though no indication of how much (the more the better chance of 5 year survival). 

The fracture is still noted, not a surprise,especially with him being pretty uncomfortable when he woke up from the scans. 

Some new bone growth is noted, though I'm not sure if that's actually helpful since it's going to be removed either way. 

No nodules in the lungs are detectable now. 

PET scan only revelaled the tumor in the hip, NO NEW TUMORS! There were other non oncology things mentioned but I'm not sure how much significance they hold. I am guessing we will find out Tuesday.  

In other news, his ability to get around independently has left us comfortble with trying to let him along with brother and sister, go to the sitter's for a few hours at a time to start. After seeing him get a large pumpkin through the house independently last Monday I figured he would be fine. He is beyond excited. You would have thought we told him he's going on vacation. He has been asking us daily how much longer until Monday afternoon. He also told us to make sure he has "school work" to take. He can't really read and his school takes about an hour daily and they aren't going until the afternoon, so im not sure what all he's expecting but he definitely thinks he needs to show off he's doing "school" now.

Todd will be headed down to Columbus Tuesday with Andrew then Rachel will be heading down Thursday to switch with Todd.  Long week of chemo with it not starting on Monday half the weekend will unfortunately be lost at the hospital.   

we believe this is the last chemo before surgery scheduled, on the 29th. 

The picture is from Saturday night at a friend's. 

Cancer sucks.

Seeing your kid not be able to walk sucks.

Discussing details about removing your kid's femur sucks.

Talking about the risks of radiation sucks.

Choosing which kids to be with for days at a time sucks. 

Reading through studies on relapse rates sucks.

Reading flow charts of survival rates sucks. 

The unknown sucks. 

These pictures were taken 8 weeks and 2 days apart. It's gut wrenching looking back and seeing how cancer was literally sucking the life out of Andrew and we failed to notice. 

As we sit here waiting while Andrew is undergoing his first set of scans since his diagnosis in August we reflect on how we got here and anxiously, cautiously, and hopefully prepare for the big surgery and radiation. He's starting to ask questions and i wish i had the answers- when can I walk again, how can i decorate at Christmas if I can't walk, will it hurt like when they put the screw in (very minimal pain) or when they took it out (excruciating pain as they likely disrupted the tumor). 

We are incredibly grateful for his energy level and generaly good, but usually sassy, attitude and being able to stay out of the hospital outside actual treatment. Despite not using his right leg, he has gained a lot of physical independence, with some creativity. Earlier this week I found him pushing a carving pumkin through the house by pushing it with his good leg while scooting on the floor. The thought of going back to Andrew being completely dependent on us to get around isn't exciting. However, the doctors are telling us he will be able to get back to normal, 6 year old activities with running, swimming, biking, kicking, and amusement park riding (Andrew's most recent request). So, we keep hoping and praying that this surgery and these awful toxins are what's needed to make all of his 6 year old dreams come true. 

The boys' co-op presentations are on Friday and are on Bible character or a saint. Coupled with the timing of All Saints Day there has been a lot of talk about saints and miracles. Ethan is in awe that so many people on the brink of death can be healed so instantly that they get up and never look back and their illness. While waiting for the results of Andrew's scans, let's not forget we are still praying for Blessed Stanley Rother's intercession.

Prayer for Divine Favor

Blessed Stanley our brother,

you poured out your life in service and spilled your blood as a witness to the faithfulness of God’s love.

Those you loved so deeply and served so completely knew you to be their pastor and their priest, interceding for them as their open door to the presence of Christ.

Pray for us now and intercede on our behalf,

as we ask you to walk with us on our journey through life, that the redeeming presence of Jesus, might touch us now and restore us to wholeness and peace.

I ask in time of need {for Andrew's complete healing} that your prayer accompany us; may the mercy of Christ, echoed in your ministry and your martyrdom, renew us and bring us the graces necessary to heal our brokenness,

illumine our darkness, and restore the losses in our lives, that we may be, finally, one with you in praising God forever in heaven.

Through Christ our Lord. 

Amen. 

Within 29 hours we drove 10 hours and visited 2 National Historical Sites/Battlefields in 2 states (one new state for the kids). The last Junior Ranger badges the kids earned were from Mesa Verde, the day before we took Andrew to the ER for the SCFE in Moab, UT back in April. It was also the last hotel we stayed at, though we tried once over the summer but his pain was increasing too much for all of us to sleep in one room. 

We started Saturday with Trick or Treat Fest at the Zoo, in the rain. By the time we decided to go only 12:00 tickets were left and Ethan had a 1:30 game so we got their early to ride the train and carousel before Trick or Treat Street. All 20 stations had teal pumpkins (non food treats) which is so wonderful to see as a food allergy parent. We then went to Ethan's last soccer game of the season where he scored 2 goals, but the team lost. Despite the terrible outcome, Independence had the most respectful coaches and teammates we have ever played. Their coach high-fived one of our players, kids apologized when they tripped our players and they said "good play" when one of our players made a great play. After the game we had 45 minutes to pack and get to Mass. We stopped at home to warm up dinner and we ate in the van on the 5 hour trip to Harpers Ferry, WV. We arrived around 10:30 and the kids would not go to sleep. We could have been in a hotel in Cleveland and I think they would have been just as happy. Thankfully everyone slept well and we got checked out around 8. Just in time for the rain to start. Thankfully it only rained for about 30 minites then drizzled for about an hour. We saw Bolivar Height battle field, Lower Town, Jefferson's Rock, St. Peter’s Church, The Point and walked across the bridge to MD, then visited the Appalachian Trail Conservation where we found Todd's picture from his thru-hike in 2005. Thankfully Todd is in good shape because Harper's Ferry isn't the most ADA accessible place so he had to carry Andrew a lot. It was nap time so we headed to Antietam National Battlefield in MD where we took a 10 stop driving tour, looked at a lot of cannons and memorials, watched a short movie in the Visitor's Center and walked up an observation tower that overlooks the site of the deadliest battle of the Civil War(27,000 died in 1 day). The boys completed the Jr. Ranger program at both locations and are happy to add to their collection. Amelia got a badge for being cute at ANB. We stopped at a gas station to warm up dinner and fill up on gas and were on our way home at 5:30. We couldn't have timed it better because as soon as we pulled out of the gas station it started pouring rain. 

We had planned this trip 2 other times to be over a 2 or 3 day weekend during the summer and thinking everyone would be full weight bearing so we are thrilled we were able to go and happy with what we were able to see. 

Another week of chemo, another week of schedule changes. As of Tuesday, November 2nd was to be a full day of sedated scans with tumor resection/femor removal on November 17th with only 1 day of chemo between as he likely wouldn't have been recovered in time if he were to recieve the 5 day chemo that was supposed to have been next week but got pushed back a week due to low counts. Then as of Wednesday, surgery is likely being moved to November 29th to get another 5 day chemo week in as they thought with recovery from surgery there would be too much of a gap in chemo. But, the surgeon was in surgery all day so we don't have confirmation on that yet, and then because of the surgery being pushed back he may want to move the scans back a week or two, likely coordinating with the 5 day chemo. This would then give us an opportunity to review the surgical and post op plan with ortho and PT. We like the idea of pushing it back as this will allow a Thanksgiving with family. If the scans stay on Nov 2, that means we have an out patient chemo day on Wednesday of next week (no admission) then need to be back in the hospital the next morning ready to meet with anesthesia at 8:30am. He will likely be able to go home around 6pm. So, we have a lot of potential scenarios to try to plan for not only with Andrew but also with Ethan and Amelia,and work schedules. Don't feel bad if you didn't follow it, we can't either. We basically check mychart at the end of the night to find out what's happening the next day.

While all of the back and forth phone calls about schedule changes and possibilities were happening, Andrew made the most of his 27 hour hospital stay. Andrew talked the cardio tech into letting him do his own echocardiogram, he "smoked" the thermometer, then beat everyone in every game of Exploding Kittens, Jenga, Memory, Trouble, and Monopoly fair and square. He showed off his homeschool memory work to the oncology massage therapist. His songs of choice were Sanctus and last year's defintion of gravity. He made sure to emphasize the "squared" part of "9.8 m/s2" and claimed he forgot the squared part when he was 2. I'm quite positive he didn't know anything about gravity when he was 2 other than his sole purpose was to attempt to defy gravity with his furniture climbing. One of the fellows stopped by for a quick visit even though she wasn't on the scarcoma rounds this week. She said she loves his energy. He also figured out how to add music to videos on Grandpa's phone. We asked him how he did it and he said, "here let me show you the physics!" It wasn't much, but we did squeeze in a little bit of school work. Every time someone walked into the room he told them they stunk. I mean everyone, from the cleaning staff to the Attending physicians and eveyone in between. The younger PCAs and nursing students were often thrown off, but the more experienced staff played into it. He insisted on sleeping on the tiny couch in hopes no one would find him overnight to take his vitals or they would try to take Mom's vitals instead. It didn't work. But even though he was woke up 3 or 4 times throughout the night he cooperated after trying to convince them Mom is the one that needed the vitals (as if the iv pole wasn't a giveaway). When he woke up Wednesday he realized he hadn't been telling ALL of the staff that he lost a tooth (on Sunday), so he made sure to tell everyone for the rest of the day, after letting them know they smelled. He sure makes an adventure out of everything.  

After 2 days of being busy it was weird walking into an empty house. Dad, Ethan and Amelia were finishing up their day long adventure in Cleveland where they went to the Children's Museum, Cleveland Public Library to do the homeschooling for the day, and then met an astronaut at the Museum of Natural History.  

Upcoming: Nov 1-chemo, maybe Nov 2- PET,CT, MRI

Yay for Catholic Schoolhouse on Friday! Andrew had so much fun today being in class with his friends. They had their All Saints Day celebration where they dressed up as a saint and after morning Mass had a sort of receiving line for guessing who each of the kids were. After classes we had a Trunk or Treat and carnival. Ethan was St. Joseph with Dad's workbelt and tools as accessories, Amelia was St. Giana with her baby doll and play stethoscope, and Andrew was St. Francis with his bald head and Hedwig (owl from Harry Potter) strategicly placed on his stoller over his shoulder. 

Grandma & Grandpa Smith came to visit on Saturday and watch Ethan's soccer game. Grandma made him a custom walker bag. 

Sunday was Anointing of the Sick after Mass at St. Joseph's in Strongsville then neighborhood boys came over to play pokemon and drive remote control vehicles. After a weekend filled with Andrew asking for us to pull his loose tooth, tooth #5 finally came out on its own before bed. We have had the unfortunate experience of digging through sheets looking for missing teeth so im glad to have avoided that. 

Monday's labs came back looking pretty good and so he will be back down in Columbus on Tuesday for 2 days of chemo. It's unfortunate that after both of the 5 day chemo weeks so far his ANC takes so long to build back up. It makes life and work schedules impossible to keep straight. 

Wednesday's labs came back lower than Monday's, possibly because of getting over a small cold. So no chemo this week. Rechecking Monday and tentive schedule is chemo on Tuesday & Wednesday. 

These last minute schedule changes are getting to be routine but still extremely difficult to plan and semi-commit to anything. I feel like everytime we get labs back we have at least 3 calls/texts to either confirm, cancel or reschedule something. 

Andrew is managing to get around the house really well recently and still maintain non weight bearing status. His upper body strength and core stability has really improved over the last month. He can now "run away" from us to make us "chase" him by pushing with his arms and scooting on his across the floor. He can get from his chair at the kitchen table onto the floor, down 3 steps, over to the couch and up onto the couch without help as long as the path is clear. 

Upcoming: zoom rosary tonight and every Thursday, labs on Monday, probably chemo on Tues and Wed 

Thursday's labs showed Andrew's ANC at 130. 750 is minimum for chemo so he will be doing more labs Monday instead of chemo. The rest of the week will depend on labs.

He also woke up pretty congested and with a slight cough. Between the low counts and the cold, co-op was a no-go on Friday. Thankfully with frequent use of the nebulizer the cough and congestion were pretty much gone by Sunday. The low dose of bactrim antibiotic may have helped, too.

Even though he didn't attend class on Friday, we did a video call for his science class to present his bug board that the boys had been working on since August. We even collected a few bugs the neighbor caught. While it was fun watching the spiders build webs around hornets and seeing an Asian Lantern beetle, we are definitely not sad to have gotten rid of the couple dozen insects out of the kitchen. 

We went to the zoo since he couldn't go to co-op on Friday. His favorite part was lunch. At least until the Halls stopped by to drop off Ethan. Andrew hasn't seen them outside co-op in a long time and he enjoyed every minute. Even though the weekend was cold and rainy we still got outside to enjoy some fall activities-corn mazes, hayrides, pumpkin bowling, and overpriced decorative pumpkins and gourds.  

Two boys lost their battles with Ewings Sarcoma cancer this week; one a short 5 month fight and another a long 4.5 years, so we are relishing in and trying to capitalize on these days when Andrew feels great knowing things can change very quickly. We have been very fortunate that aside from the lump and occasional pain in his hip, hair loss, and the occasional dark circles under his eyes he has very few effects of the cancer/chemo. All of the help with cooking, meal prep, groceries and cleaning help makes it possible for us to focus on making memoreies. 

Upcoming: Monday labs and waiting for ANC to get to 750 to resume chemo. Planning on Tuesday and Wednesday chemo as of now. Could get pushed back later if Mondays are still low. 

A friend who has been extremely helpful with cleaning and sending food is having an extensive surgery Monday so we ask that you include her, her family and the surgical team in your prayers.

We busted out of the 12th floor around 8:30 Friday night and it's been a party since! Satuday was Ethan's soccer game followed by the Middleburg Heights Fall Fest. The rain didn't slow us down. The summer fireworks earlier this year were too late for Andrew, but thankfully for earlier fall lights he was able to watch the great fireworks to close the festival. Sunday we went to the Great Berea Train Show where he enjoyed looking at all types of models with lots of Thomas the Train, and he paid $5 to enter a raffle for a Chuggington set that he ended up winning.  

Upcoming: this week is no chemo but labs twice

Now that Andrew has a little more freedom from orthopedics we are squeezing everylast drop of this gorgeous weather!

Last week he had chemo only on Monday. We got out a little early so we stopped at the Columbus Library in downtown and you will never guess...played with trains! They even had large model Thomas and Percy. 

Friday we had a fieldtrip to Stan Hywet with our co-op. We had a guided tour of the Manor House then had lunch and explored the gardens. Then Todd took the boys and met friends for the opening night of the new Paw Patrol movie. Around dinner time Honorary Aunt Lea Ann joined us from New Lex and we started a game of National Parks Monopoly.  

Saturday we played a little more Monopoly around Ethan's soccer game and then to Andrew's BFF, Brian's birthday bash before Lea had to head home.

Sunday was a long, 12 hour day. We left early and met my (Rachel) parents and Uncle Ed and Aunt Patty from Troy at Our Lady of Consolation National Bascilica and Shrine in Carey. We had been trying to get there all summer but Andrew (and Amelia) wasn't able to sleep consistently enough for us to have the mental bandwith to get us all there. After Mass we took a guided tour by one of the Franciscan Friars of the upper and lower Bascilica. I had been there a few times when I was younger, however, either my memory was a little off or they have changed things around. I didn't remember there being as many saint statues or relics and I felt like there used to be more testimonials. Andrew lit candles under and prayed to St. Peregrine and St. Jude for their intercesion for his tumor to go away and a Nintendo Switch (exasperated facepalm). He constantly throws these moments in to help us remember he's still so little to be carrying such a huge burden. We went over to the Shrine park and saw the new, very large, Christ The Redeemer statue. It was starting to get hot and Amelia was getting less cooperative so we skipped the outdoor stations of the cross and other statues on the grounds. The halfway point is Mansfield so after a nice nap in the van we stopped and took a ride on the Richland Carousel in downtown Mansfield and walked the Kingswood Garden about 10 minutes away. It's a smaller version of Stan Hywet, but instead of a children's playground they had a storybook trail, peacocks, and a duck pond. Feeding the ducks was by far the best part of Mansfield for the kids. The worst part was when Amelia was chasing a peacock in the parking lot, stepped in poop then climbed into her carseat. This calls for some late night laundry.

Upcoming: Rachel and Andrew are heading to Columbus in the morning, hopefully for the 5 day week. Andrew's labs were unusually high on Thursday. They should have been around 0 but were 900, so they are hoping he won't have a delayed drop and they won't be sending us home a couple of hours after arriving on Monday. On Thursday, the nurse said that with Southwest hospital (where he gets labs at home) being unpredictable with turnaround time it was worth the risk to go ahead and come down to Columbus, especially if we want to try to get out Friday night instead of Saturday morning. The nurse also said the prosthetic company is asking for a couple of extra weeks for them to finish, which means we are looking at around Thanksgiving for his tumor resection/femur replacement. This was hard to hear as his attitude, spirit, and stamina have been quite impressive and he keeps asking when he will be allowed to walk again. 

Last week was a great week!

Monday and Tuesday chemo went without issue. By the time Andrew made it to the hospital his ANC was up to 2,000. He was cleared to attend our weekly homeschool co-op Friday for the first time this year. He was able to paint his pinch pot and dissect a fish with his classmates and had so much fun. Orthopedics has loosened their requirements since we first saw them. Initially he had to be braced nearly all the time and now his restrictions are primarily non weight bearing and keeping him comfortable. They gave the okay to sleep in a regular bed, if he's comfortable. Friday night he slept through the night, without Mom or Dad (but Ethan on the top bunk) in his bed for the first time in MANY months. This is HUGE. There were so many weeks of screaming all night long moving from room to room, stacking pillows, sleeping ontop of us just trying to get him 30 minutes of rest. Even before the leg issues began he would often find his way into our bed. 3 nights of sleep has been awesome.  

A new adjustible chair for his new table arrived on Friday. We can make the height match the table so he can reach trains all across the table. Sunday he enjoying a picnic with another local co-op, then back to NCH for a one day chemo on Monday.

Upcoming: next week is 5 day chemo. We are planning for Rachel to go to NCH Monday, Tuesday and leave Wednesday then Todd drive down Wednesday and stay until discharge. If anyone happens to be available mid day Wednesday to hang out with Ethan and Amelia or let them hang out at your place for a couple of hours so we don't have to take the kids to swtich, that would be a huge help. Call or text Rachel or Todd if you might be available. 

November 2nd at 9:30 is the sedated MRI (fine tune plan for tumor resection and femur replacement), CT scan on lungs (to monitor the remaining nodule and make sure nothing new poped up), and PET scan (to make sure it remains clear).

Another homeschool Mom was approached after Mass a few weeks ago by a woman asking if she knew of any intentions to help get her relative his miracle to become a saint. Knowing Andrew's recent diagnoses she passed along the prayer for him. Please join us in praying for the intercession of Blessed Stanley Rother and for Andrew's healing.

Blessed Stanley Rother

Prayer for Divine Favor

Blessed Stanley our brother,

you poured out your life in service and spilled your blood as a witness to the faithfulness of God’s love.

Those you loved so deeply and served so completely knew you to be their pastor and their priest, interceding for them as their open door to the presence of Christ.

Pray for us now and intercede on our behalf,

as we ask you to walk with us on our journey through life, that the redeeming presence of Jesus, might touch us now and restore us to wholeness and peace.

I ask in time of need [ state your need]

that your prayer accompany us; may the mercy of Christ, echoed in your ministry and your martyrdom, renew us and bring us the graces necessary to heal our brokenness,

illumine our darkness, and restore the losses in our lives, that we may be, finally, one with you in praising God forever in heaven.

Through Christ our Lord. 

Amen. 

Whirlwind of a day but finally Andrew's ANC levels were high enough to receive chemo and come to Columbus for treatment. 

Praise the lord!  Thank you to everyone who continues to pray for our little boy.   Grandma Sue made Andrew a new bucket hat with Thomas the Train fabric.  

The last 7 days have been full of waiting. We were warned when we were first given the schedule that these were not set in stone and rarely go exactly as planned. They actually told us to plan on being hospitalized due to illnesses, needing blood products, and having low counts at some point throughout treatment. 

This week we were humbled with our first hangup/delay. We had diligently planned the week with school, work, appointments, and who is taking care of Ethan&Amelia on each day and had a few contingencies built in. While it all looked good on paper and in the calander, it's still maddening having to switch gears last minute and get the kids ready for bed not knowing where they/we will be in 12 hours. As of Monday, Andrew's ANC had only risen to 250 from Friday's level of 100. It needs to be 750 for chemo to start. The primary issue was the white blood cell count. We were told to try again on Wednesday to see if we can start on Thursday. I finally got the call at 8:30 pm that Wednesday's ANC was only slightly higher at 515 so Thursday was a no go. Back to unpack all of the school and activities I had repacked just a few hours ago. Thursday they called to give us the option of coming down on Monday or doing labs again on Friday to make sure count recovery is still progressing. Given the 2 hours drive we are opting for the additional blood draw, as awful as these are for Andrew. Unfortunately Friday's ANC only improved slightly to 600, so more labs on Monday before hopefully headding to Columbus for more chemo.

As of now the tumor resection/femur replacment is scheduled the 1st week of November. The chemo schedule will be pushed back a week due to the count recovery delay, but we are hoping this doesn't push back the surgery date closer to Thanksgiving. Thursday the nurse said she's hoping to get a firm date from the orthopedic oncologist soon. It's probably a stretch with recovery from a femur replacment, tumor resection, and probably having chemo earlier in the week,we are still trying to be hopeful we can have Thanksgiving with family. Another small hiccup this week was the new table for Andrew was supposed to arrive on Tuesday and got pushed back to today, Friday. Hopefully we can get it assembled quickly so he can play before he needs to go back to Columbus. 

On a good note, he has been eating pretty well this week. We started adding mct oil to a lot of his food to get more calories per bite since sometimes he's "full " after 5 bites of food. He's used 1/2 the bottle in 5 days. He tried a high protein and "keto cake" over the weekend and actually liked it. He's only eaten cake a few times in his life. Wednesday he didn't complain about any meal (highly unusual) and ate 3 full meals! We noticed we can no loger see the ribs on his back as prominently as when we came home from the first hospital stay and his arms aren't as sickly-thin. So, yay for eating food and adding back a little /muscle!

He has been enjoying his physical therapy exercises. He doesn't use his walker regularly yet, but does a couple of times a day and can get up to 20 steps a day. He really likes the kicking exercises with his good leg. He gets to kick something (balloons, stuffed animal, etc) off the couch/bed and he thinks it's hilarious wathcing us chase after it. His favorite exercise is standing at his walker for 15 minutes and playing a game. Because he played Go Go Thomas the first time he did this at the hospotal with the PT he thinks this is the only game he can play. We are also trying to build arm and core stengeth so he is throwing heavy bean bags and trying to get them into boxes/buckets we are holding.  

We were able to do last week's co-op art project at home on Wednesday, which was Aztec sand art. I tried explainging to him Aztecs didn't have manuscript letters, but he ignored me and added his name. 

Tentative plan for the next week: labs Monday then head to Columbus for chemo in the afternoon & Tuesday; home late Tuesday or Wednesday and recover the rest of the week. He will be getting more vincristine, so we are prepairing for mouth sores by the end of next week by stocking up on cans of coconut milk for a lot of smoothies. 

Remember to join us every Thursday at 7pm for a rosary.

Follow the link below, to join:

https://us04web.zoom.us/j/73772078806...

Meeting ID: 737 7207 8806

Passcode: 2fT3wu

   On Sunday we were able to have Andrew receive the Annointing of the sick Sacrament at Assumption church in Broadview Hts,  it was a beautiful thing to see.  

One month since the day we received the preliminary biopsy results. So much has happened in these 31 days. Today was the 1st day of our weekly homeschool co-op, Catholic Schoolhouse. This year there are 60 kids,which means the potential for lots of germs. This doesn't pair well for a 6 year old that wants to 

touch everything and has zero immune system so we sadly had to send Amelia and Ethan while Andrew and I (Rachel) did our own thing. Grandma and Grandpa Cotterman were called to duty as Todd had a work meeting in the morning but he made it over to the co-op around lunch time. Ethan didn't say much other than it went well and the seating arrangements are great (he helped plan them for his class). Amelia absolutely loves the nursery and story time with Mrs. Katcher. She slept from 3 to 5, when I finally woke her up, so I know she had a good day. 

Andrew's day didn't start out as fun as the other two. Our first stop was Southwest General Hospital for biweekly blood draw. These are absolutely awful. We leave with both of us in tears everytime. The 1st vein was too mangled and they kept digging until they gave up and had to use the other arm. He beleives his arms are incapacitated for days afterwards so that meant he can't even buckle his carseat now since they had to poke both arms. Thankfully, once we sneak attack remove the bandaids later in the day his arms start working again. 

Once we regrouped in the van we headded to Canalway Center to attempt the Hunt of the Month: bumblebees. We were only able to find 15/20. Next was an Outschool art class I signed him up for last night after looking at the art frames the I had purched right before the diagnosis and realized Andrew's would be empty. He was the only participant. It was making art by hammering flowers. He really just wanted to hammer and could have cared less about the flowers or result. He asked the instructor if he could be done after 10 minutes because he wanted his lunch 😆 . 6 year olds have no filter. After lunch outside at CWC, he did his math test and a small science experiment leftover from this week. Then we went for a 4 mile run on the Towpath before hanging out at one of his favorite places in Cuyahoga County. It's off the connecting path that runs from the nature center to the towpath underneath the big railroad bridge. They recycled old railroad timber to make a path and they have a few random things like a signal and I believe an old switcher. Sadly, we didn't see any trains though we heard a few during lunch. 

Shortly after getting home the NP called with the lab results. Unfortunately, as of now his counts are too low to start chemo on Monday. Given it's a 2 hour drive we don't want to drive down and be surprised and told to go home and come back the next day so we are going to go for a blood draw early Monday morning and wait for a call from the NP to see if we are good to come down later in the day or ...? We don't know exactly know what the alternative is. Blood draws everyday until they rise enough? I hope not. Either way, it's not looking like he will back back Tuesday night next week like anticipated. I'm learning these schedules are very loose estimates. 

Other noteable things since the last update:

1. Lots of good food was brought over this week. Andrew even ate some. Thankfully this set of chemo didnt give him.mouth sores, so we only had to deal with is normal pick eating. Ethan loves food and gets so excited for these real meals. Something so simple as real carrots peeled and cut for snacking. We had gotten into the habit of conveninece baby carrots and forgot how delicious real carrots taste. 

2. Lots of friends visited this week and really brightened Andrew's spirits. It was a great week for using up the rest of the waterballons and figuring out which water toys will make it to next year. In addition to helping him, this helps Mom and Dad. While Andrew not walking isn't new (he hasn't walked since March, aside from a few weeks in May with a significant limp), it still isn't easy. Having helpers, both kids and adults, even to help grab toys just out of reach really helps. He often asks for something before I return with the prior request often forgetting the requests and leaving me question if I have ADHD. Wednesday I had over 11k steps and definitely no workout. 

3. Andrew constantly asks when we can go back to Disney and we do our best to encourage it will happen without commiting to a date. I found out the Cleveland Orchestra was doing a Disney concert at Blossom so we thought we would give it a try last Saturday (the day he got home from the hospital) since he would be isolated to the stroller, low risk of germs, and his immune system wouldn't be low yet. It definitely wasn't a replacment for WDW, but it was a fun way to "do Disney" only 30 minutes from home. He even stayed awake the entire time.

4. Lots of community prayers this week. We had another weekly Zoom Rosary Click Here (Thursday 7pm) As well as a Mass at St.Adalbert in Berea said him as he was being discharged on Saturday. After Mass I learned St. Adalbert recently received a donation of a relic of St. Elizabeth Ann Seton. While she is the patron saint of Catholic schools/teachers/educators, two of her miracles were cancer healings. 

 We still have many people telling us about Andrew being on church prayer lists across the US and intentions being said all over the world. He doesn't quite understand the significance, but still appreciates it.

5. The boys had vision checkups at The Vision Development Team (developmental optometrists, much more thorough than regular eye doctors and highly recommended for young kids especially when learning to read) and Andrew needs a little bit of vision therapy to address some tracking issues. Thankfully his issues are very minor compared to what Ethan's were at his age so the doctor beleives he only needs to go in once a month for 3 months and do exercises at home. This is on top of PT and all the other at home "fun". 

Been a long week in the hospital.   Will send out a more thorough update tomorrow. 

Got to see the helicopter on the secondary helipad this morning and went to the gift shop today because they will be closed tomorrow.  

It was a busy morning, but all of the food brought over last night made it 100xs easier. I had our new TOBIQ bag packed with clothes, blanket, and hospital medical information. The new Hydroflask soft cooler packed with meals, and a suitcase packed with pantry items and school work. Despite asking all weekend what he wanted to take toy wise, Andrew waited until we were trying to leave to add about 5 more toys to the list. As we were getting ready and packing up (me to take Andrew, Todd to drop off Ethan and Amelia to Danielle's) I was thinking how messy the kitchen was and Megan, the evening helper, wasn't going to be able to find a clean surface to eat dinner. And all of the sudden the McTavish family showed up to clean. I didn't even realize that had been scheduled. A big welcomed relief. We all wore our matching sarcoma shirts, snapped some pictures and were on our way. After a rocky start with low tire pressure we made it to Columbus without issue. Andrew wanted a snack on the way down and ended up eating all of the salami I packed for the week by 10am.

We were in the outpatient infusion clinic for 5 hours before getting a room. It sounds like a long time but there were constantly people in and out. They really make the patients feel incredibly special here. Before anyone comes in they read up on his interests and try to connect. Accessing the port was a big challange as was last week. It again took 4 of us to hold him down which is incredibly heartbreaking to do. I think it's more anxiety over it than the actual pain. Once they were in he was fine, except when they messed up and tried to give some of his antinausea meds in liquid form, which he spit all over me. It took another hour to get a doctor to sign off on getting that in capsule form then delivered by the pharmacy, but he took without issue and barely acknowledging. He was constantly attacking whoever walked in with his new glow in the dark stretchy worms and trying to get people to sit on his new whoopie cushion. He played a game of memory against Lisa, the sarcoma coordinator, and beat her 26-2 while fully engulfed in the movie Cars so she agreeded to sit on it and it was great. 

We finally got to a room around 4:30 so with Grandpa Dave and Grandma Sue still around I quickly added all of our food to the refrigerator and got a new badge. 

After getting him his salmon, I started setting up the room. I brought an entire entourage this time. Even with some hair loss, it's still hard to beleive he has stage 4 cancer, but I know he needs all the help he can get. So this trip we added holy water from Fatima and Lourdes, to our bottle from Rome and also added St. peregrine and st. Joseph oil as well as the following saint dolls: 

St. Gianna- patron saint of mothers, physicians, wives, families, unborn children 

St. Michael, the archangle- pateon saint of firefighters, police officers, military, grocers, mariners, paramedics, docotrs, protector of the Jewish people and Catholic Church

Blessed Virgin Mary-patron of aviators, childbirth, motherhood, nuns, the sick, young women

St. Joseph-the church, fathers, families, expectant mothers, travelers, immigrants, craftsman, engineers

St. Jude- patron saint of lost causes, deaperste sitarions, hospitals

Our Lady of Lourdes- patron saint of the sick

We did get a little school in today after the 2 chemo drugs were finished, though not as much as I had hoped because of all of the interruptions. His takeaway from today's lessons was a single ant can carry the weight of 50 ants. Ironically, I feel the oposite of everyone in our lives; so many people are carrying Andrew right now between the monetary donations, food, cleaning, organizing my life, gifts, help with the kids, and just checking in.

“Andrew started his 2nd round of chemo yesterday in Columbus. Unfortunately was an 11hr day by the time we got home. Grand parents helped a ton with taking care of Amelia. Rachel celebrated Ethans birthday with a trip to Cedar Point, they rode most of the big coasters.  

Andrew has a couple side effects so far, mouth sore, and teeth/jaw hurts a Lil. Is getting difficult finding food that he will eat.   

Next week will be the 5 day chemo, Rachel will be taking him down Monday, then I'll be coming down Wednesday to switch. 

Hopefully if his levels(blood counts) are good then we can come home Friday night”

Keep the prayers coming! 

Biopsy results from the lung have come back positive for metastases. Continue to storm Heaven with your prayers as Andrew is in for 9 months of treatments.