Thank you for the prayers.   Tony’s return to week 5 radiation was a big success.  Normally Sunday nights and Monday are always filled with panic attacks followed by tears after the treatment.  Today we were about 2 miles from the clinic when his nerves finally got him.  He opened the calm app and listened to a session about anxiety over treatment and did great.  So thank you for praying and God did answer.

Today we spoke with University of Kentucky Lexington regarding one of two clinical trials Tony is interested in.   Bad news is this location is 9.5 hours from home….  They think we would be able to stay at the Hope house which helps with stays but mileage, gas, meals and back to copays are a factor.  This trial is using Optune, TMZ (oral chemo), and Pembrolizumab/or placebo.   We have to be there every 3 weeks…. Mayo Rochester eventually is to start this trial but it is on hold right now with no start date yet.  

The other trial is at Northwestern and it involves surgery, removing a portion of his skull, replacing that with a plate with 9 arrays that are designed to open the blood brain barrier so that the meds can actually get delivered to the brain directly.   At first Tony didn’t want this option but more and more he feels that this is the one.  We have yet to hear back from NW, we have been trying for about a week.  This is closer to home and because they are a center of excellence our insurance reimburses us for gas, mileage, some of our hotels, etc.   again we have copays but…. 

The Dr we spoke with today said both of these trials would be excellent for him and he must get on one right away to give him a fighting chance.   This month off could be very bad in terms of staying “stable” with the tumor growing again.  

Pray, pray God guides Tony with what to do!!!

Sunday night the hair loss Tony is experiencing from radiation hit him hard.  Yes he is a man, yes he always kept his hair short but this is t him voluntarily cutting his hair.   This is radiation…. 

Early Monday morning he became fidgety for two hours before being able to fall back to sleep.  That day at radiation it seemed like forever in the waiting room and it was…. He had to stop the procedure due to a severe panic attack from the mask. 

He came out in complete tears again.  I held him, when he sat down I dropped to my knees in front of him face to face and just comforted him.  Seemed ok through the day and then again 2 am can’t sleep.  At 530 he caved and asked for some meds to sleep and calm his mind.  Woke him at 845 and he is not feeling well.  Still in a panic attack.  He wants to have his mask redone so they can put eye holes in it.  Did give him zofran too because he is sick to his stomach.  Labs are good, no fever.  14 left.  In a few minutes 13 treatments left.  

I am a bit tired but I can rest lasted today when he does.  Dishes can wait, sweeping a floor can wait.  Pray he will be able to cope and that he will pray to God while going through his treatments to ask for help, comfort, and strength.      

On Friday Tony completed 15 of 30 radiation treatments.  Halfway there.   Saturday he began showing he was tired more and today, well today has me thinking he may need his dexamethasone upped.  He would be asked to get a water out of the fridge and after a few times of asking he would go to the cupboard and pull out a cookie sheet.  Had a very hard time writing tonight, answering questions he needs to do for speech therapy.  For example one of the questions was name items you sit it, he only answered chair.   Right next to where we were was a couch and recliner.   Most questions he had no answer for.  His right leg is swelling again too.  He says he feels no pressure in his head, but I will talk with the doctor to be safe.  

He also began losing his hair this week where the radiation beams are hitting.  He was fine with it, me I was crying about it.  Tonight we are watching a show with a woman going through chemo and her hair falling out, it hit him and he broke down.  

Emotionally Friday and Saturday were rough for me.   I am trying to live in the moment and not worry about the future, but the fear is there, the fear of we are one day closer to my being a widow.  I know I should t think that way, but it’s hard not too.   So please pray for me to focus on today, not what God has in the future.   

GBM stinks, not matter how I look at it, it stinks!! It had robbed my husband of his railroading career, ability to drive, taken some of his speech and vision, some cod price function, emotional control, intimacy, yes intimacy.   The future is he will most likely lose more and that’s what I cannot focus on today, but the here and now.  Yet I have to be prepared mentally, physically, and with household needs.  Like a way to get him to standing (the chest straps), commode, bed pads, men’s diapers, hospital bed, etc…  

We were forewarned the next several weeks are going to get harder for him, lots of exhaustion, hair loss, loss of memory, he will permanently lose his ability to learn anything new.  So please keep praying.  

May God bless you today and this upcoming week   I will try to do better with updating this week!!  We love you all!!

We pray you are all keeping warm today. Yesterday paperwork was signed to start the approval process to begin Optune when radiation is completed.  Pray for insurance approval.  

We also were provided a list of clinical trials to begin looking at to start right when radiation is completed.  We need prayers about this.  His radiation oncologist said this isn’t his department it is for Med Onc.  The one med onc said “you aren’t newly diagnosed so none are for you”.  We contained the National brain tumor assoc and shared what she said and they said too what we read that yes he is eligible because they start after his radiation is completed.  So now we will send these to hi Med Onc in Rochester and get his recommendation on what to do next.  

This week is going fairly well right now.  Mentally he is improving and you can see and hear it, PT and OT is evident to see too that they are working as his movements are much better.  

All this being said, we know what can still happen since he is in radiation, memory, speech, exhaustion, digestive issues can all happen.  Plus when the tumor begins growing again we can see problems there.  So right now we are happy and praising God for these wonderful days He has blessed us with!  

Thank you everyone for your kindness, generosity, sharing our journey, but especially thank you for the PRAYERS!!

Good evening on this very cold Sunday evening.  Tony has completed two out of six weeks of radiation treatments.  So far so good.   He has had a few bumps but all is doing good.

He Is back on Dexamethasone because he was starting to feel seizure like activity so to be safe to help with the brain swelling he is in a low dose for now.  

Saturday we got in the car and took a local road trip where we saw a waterfall and managed to visit/look at the correct military cemetery in Preston, MN.  It is a very nice spot where this cemetery is, but I absolutely hate how close the graves are to one another and how you literally walk on top of those burried to get to the site you want…. I don’t know why that bothers me, I guess it is just respect for the persons body..  

We are finishing up our wills, have to make a few modifications but those will happen this week and then we should be good to go.  

Super cold start to our week but this is normal for Wisconsin at this time of year.  Radiation all week, oral chemo all week, but tomorrow is lab day so please be praying about his labs.   So far he has been blessed but we have been warned that week three is where things start to change and life becomes more difficult and challenging.  

Thank you to everyone for the prayers and support you have shown us through this journey!  

BBRRRR it is cold.  -20 with wind, typical January weather.  The last two days Tony is showing some fatigue, his right shoulder has a rotator impingement issue because of his mobility issues as is his left ankle.  

He has been down the last two days, but today I told him how Bethany and I would pass out small Starbucks gift cards and a Bible verse to soldiers when we would travel to visit our son at Ft. Bliss.  I told him how many really appreciated the kindness and several would chat with us about the verse they received.  

In our daily hospital bag I have a small stack of those verse cards, no more Starbucks as that is money we need to watch carefully.  Anyhow, I showed Tony the cards and he took some, they called him back for treatment.  After his treatment I was called back because we had to see the doctor today.  Mr Grumpy now had a huge smile on his face!!!  

He was passing out the Bible verses to everyone!!!  Many appreciated the cards, a few scoffed afterwards in the cancer waiting room, but it made Tony’s heart glad and he is happy again!!!

Day 7 of radiation down, 23 to go.  

Week one of SOC is almost completed. Tony will take TMZ #7 tonight at 9. Tomorrow starts week 2 of 6 for radiation and TMZ chemo.  

We watched church from home, To y was accepted into the church for membership.  He was very happy and emotionally touched by it.  

Today was a roller coaster of emotions from him.  Sad, happy, worried, apologetic, fear, you name it.   Next Sunday, though I like the day of rest we will have to stay busy to keep his mind busy.  

We pray you all have a safe, wonderful week and that you stay warm!  God Bless you all, the Ramos Family

I am running on fumes.  Day 3 of radiation is done, day 2 of 72 oral chemo done last night.  Tony is having panic attacks during the night.  Started Monday 1230-0430 am.   Same hours Tuesday.  The doctor told him he needs a therapist (we are on wait lists), to use his calm app, and temporarily he can use lorazepam.  

Our son called tonight and I didn’t take his exciting news the best.  He was on his way to sign a contract with the reserves, 12Y I believe he said, for the next 3 years….  I was just asking and who now will help me the last few months with your dad….  I was looking forward and thinking he would be home to help and give me a bit of rest.   He is an adult and a married one at that so it is between him and his wife as far as the decision is.  

We do have some great news.  Two of the four health systems seeing Tony have put us on financial assistance which is a huge blessing. We are waiting to hear from one hospital and the ambulance service that had him for those bills and if they will grant assistance.  That being said Money is still going to his medical bills like prescriptions, transportation costs daily to the hospital, medical equipment that we have to get as time goes on, and things he needs for his care.  So basically our co-pays are covered at the clinic only.   Yet, it is a huge blessing and now we will be able to look outside our area for future clinical trials.   

We are so thankful for all of you!!!  We would not have gotten this far without your help and especially the prayers.  Prayer works!!!

Tony had his first radiation treatment today.  It did NOT go well for him.  He came out in tears, shaking, and extremely anxious.  They literally strap his legs to the table where he cannot  move them and then take and lock his head down in his “cage”.  He literally is bolted to the table and the mesh was so tight on his face when he came out I could see the crosshatch pattern in his face.  

I stopped what I was doing, stood up and just held him in my arms trying to comfort him.   He has 29 more of these to go.   

Visit with drs today too didn’t go well other than the neurologist. So Neurologist:  Tony has been having seizures for over two years we found out, the tumor was a  bit larger than a golf ball and a lot of his past behaviors were from the tumor… so the tumor has been there much longer than UW said.. He is luckily on a low dose of keppra but we can double his dose if we need too.  I do like the neurologist I think.  The neurologist is very concerned about the radiation because he has 2 arteries in the resection.  He is extremely worried about a stroke/blood clots.  We relayed this concern to his oncologist and basically they were saying it’s rare… it’s rare.. same as necrosis……  

Now, I am at the point I think most oncologists are car salesmen.  

I do not like the one we met today…. The same old you will do SOC before anything else.  No trial will save you etc basically is what we got.  Yes we know GBM has NO cure but he can live with it for a little while longer if we can find the right protocol for him…Some have lived 2, 5, 7 and longer years. 

The NP agrees about using integrative meds and consulting with them but the rad oncologist who has 30 years, lets say it didn’t go well when I called him out for lying to me about the age of SOC. 

I asked about his genomic studies on the tumor and he was basically like I don’t care….  Basically again go do your own research and try to find a clinical yourself.  I asked him about the two the genomic study suggested and he just again… I wanted to ask about CeGat and MRNA technologies  but knew at this point it was done with him.

We again have conflicts with medications and when to take them.  Nurse vs pharmacist   We are going with the pharmacist.

I am frustrated, tired and just want to live with my husband and enjoy our time together.  Expected prognosis from this Dr with treatment is 12-14 months.  One at Mayo Rochester says 20-24.  I know they cannot truly tell us, I just want honest answers about care, want them to care about his life and trying to help him live a longer life and I don’t feel like that’s their goal. 

Only God knows for sure about Tony and his prognosis.    

Today Tony was baptized in our church.  Next week the church will vote on his membership.  We unfortunately will not be able to attend church for the next few months due to his chemo and radiation beginning tomorrow. The chemo will wipe out his WBC and RBC. Thankfully we will be able to attend church from home and watch the service on YouTube.  At 1:03:50 you will be able to watch his baptism.  

https://www.youtube.com/live/lTZ7NBDtSkQ?feature=shared

Tony is such a changed man with Jesus in his life. I pray God will bless us and continue to work in our lives!  

Thank you everyone for praying for us and supporting us through this trial.  God has blessed us.  Please let us know how we can pray for you!

Yesterday we made a 2.5 hour trek to MSP  to return our son and daughter in law to the US Army. They are both stationed at separate posts right now so this was their first Christmas as a married couple and they were both able to spend it together here at home with us.  

Our son missed saying good bye to his wife in November when she PCSd to Washington state because he came home on emergency leave when Tony had his seizures.  

I felt bad for him missing that moment but Jessie was needed here to help get the house ready for the journey ahead, to help me try to navigate the VA system and other things to try to help.  

Those first weeks now seem such a blur, so long ago and almost easier but… very stressful.  God is what has gotten me through every step of this journey  

Right now, we are planning to take a trip at the end of March.  We are supposed to be  going to Ft Bliss to help our son move back to Wisconsin for a few weeks before moving out to be with his wife. Jessie is praying we will be able to make the drive to Washington with him too!  Both of these trips will depend on Tony getting permission to travel as he will be on oral chemo and how “healthy” he is at the time.  

Watching Tony say see you later to our son was sweet, yet hard.   Tony wasn’t a very involved father when they were little, nor a very involved husband but GOD took a hold of him and has changed him.  God gave Tony a family and Tony truly appreciates God for our family, the chance to live and love his family, and being loved.   

Tony starts SOC this Monday, January 6.  Please be praying for his health, the doctors to be truthful and to provide the best/appropriate treatment for his GBM, and  for the stress our family is facing, especially for all of us being separated physically from one another.  Also, one more prayer request, Jessie has his last gunnery ever this month, be praying for his safety and that of his troop/platoon.  

Praying the Lord bless and directs your footsteps this year,  Janice and Tony

Happy New Year to you all.  We pray the Lord blesses you and your family this year.  If you have to walk a hard road this year we pray the Lord will lift you up and help you through the “mud” as He has been doing with us the past two months and I am sure through 2025 for us.  

Friday we pick up Tony’s chemo meds on our way to MSP to return our son and daughter in law to the army.  It was such a blessing having them home during this Christmas season.  Honestly, Tony’s speech, physical weakness, and fine motor skills improved a great deal while they were home.

January 6 Tony will begin SOC (standard of care) for the GBM.  6 weeks of radiation and chemo, followed by 6 more months of chemo, 5 days of pills 23 off.  Please pray for his health, blood counts, side effects that could happen during treatment. 

We are planning a trip at the end of March to Ft Bliss as our son will be ETSing from the Army.  We are planning to fly down, help him pack and drive back to Wisconsin where he will get his affairs in order.  Followed in a month or two with him moving to JBLM in Washington where he will join his wife Greta.  

Thank you so much for all of your support, prayers (especially the prayers), and for sharing Tony’s battle!  

Wanted to say Merry Christmas to everyone from our family to you and your family!!!  

Yesterday we went to the Rotaty lights with our granddaughter, youngest son and his wife.  Tony loves the lights.  After we drove through the park we parked and walked through some of it.  Tony saw the horse drawn carriages and asked if we could ride them.  God truly blessed us as Greta and our son Jessie had enough cash in them for the ride. (We left our wallets in the car). Tony really enjoyed the ride through the park.  

Today his GMB isn’t helping him much, he is confused some thinking the gifts aren’t all under the tree, picking up crumbs from the table and either eating them or putting them on the food item they came from.  He is very fixated on what he is doing and cannot divert to anything else until what he is doing is done.

I will take whatever he has for the day as I am just blessed to have another day with him. Very blessed we are spending the day with our children and granddaughter today!! 

Tomorrow he has scans all day in Rochester and they will get the machines set up for his radiation treatments to begin next week.  They will make his head harness for radiation too, be praying, he doesn’t like his neck being touched and the head piece may have to touch his neck. 

Merry Christmas!  

Tony has GBM wild type. There is no simple way to say it, but it is terminal at some point. GBM is gonna destroy him. It sends tentacles throughout the brain that aren’t detectable until you can see him and this is how it spreads everywhere. Right now he is set to start standard of care January 6 Today we called MD ANDERSON asking for a second opinion on treatment. We are hoping to hear from them on Monday.

MD Anderson is in Houston Texas, which is 3 Day Drive.  We really want the second opinion and to see if there’s any other clinical studies that he might be eligible for this will be his first treatment battle against GBM.

Since his surgery, Tony has improved, but we know with the radiation and the chemotherapy he will regress. We know his moods are gonna get worse. We know he’s gonna get sick. He’s gonna get tired this has Tony wondering if he should even continue with treatment so I’m asking for your prayers to help Tony decide what to do.

I would like him to try treatment so we can get as much time as the Lord will give us to live together, but also to make memories and to do things he would like to do before the Lord calls him home

I need you all to please just share this everywhere you can. I understand if you can’t donate but if you could just pray for us and just sharing, it helps get this out. The funds are planned to pay for travel expenses to and from lacrosse mail, Rochester mayo, and if we can get into MD Anderson, also to pay medical bills co-pays prescriptions January 1 is right around the corner and it starts a brand new benefit here which means we have to start right back with a deductible. Start right back with co-pays and percentages until we meet the maximum amount of pocket. Then once we reach the maximum amount of pocket, we still have to pay our co-pays Each week that he’s in radiation. We are looking at roughly $600 a week and just co-pays that doesn’t include the 20% we have to cover plus the deductible upfront of 750.

This is a very expensive Cancer and we’re trying to give Tony time. He needs to get things in order but to make memories with all of us I know he would like to go to Fort Bliss, where our one son station to see him. He’s never been there. He also would like to travel to JBLM in Washington state Where our son‘s wife is stationed.  They got married this last September at Fort Bliss before she had to PCS. They are hoping to have a ceremony next spring early summer after our son leaves the military in April and we’d like to travel to be able to see that.

Please pray that God will bless us that God will bless Tony and help him make the decision about treatment. He’s actually listening to me say all these things right now and just saying Fort Bliss and see our son gets get married I think is reason for him to want to try to fight for a little while

I’m not gonna lie. This is hard. This is the hardest thing I have ever done. I am so overwhelmed. There’s so much paperwork so much research on top of caring for my husband and it’s going to get worse. I understand he will eventually decline and it’s gonna be very very difficult to care for him

Please keep praying for us and I thank you so much for all the support you have given us. We love you all very much and wish you all a very merry Christmas on Monday. We have a surprise for you that we hope to share. God bless you all.

Tony has GBM wild type. There is no simple way to say it, but it is terminal at some point. GBM is gonna destroy him. It sends tentacles throughout the brain that aren’t detectable until you can see him and this is how it spreads everywhere. Right now he is set to start standard of care January 6 Today we called MD ANDERSON asking for a second opinion on treatment. We are hoping to hear from them on Monday.

MD Anderson is in Houston Texas, which is 3 Day Drive.  We really want the second opinion and to see if there’s any other clinical studies that he might be eligible for this will be his first treatment battle against GBM.

Since his surgery, Tony has improved, but we know with the radiation and the chemotherapy he will regress. We know his moods are gonna get worse. We know he’s gonna get sick. He’s gonna get tired this has Tony wondering if he should even continue with treatment so I’m asking for your prayers to help Tony decide what to do.

I would like him to try treatment so we can get as much time as the Lord will give us to live together, but also to make memories and to do things he would like to do before the Lord calls him home

I need you all to please just share this everywhere you can. I understand if you can’t donate but if you could just pray for us and just sharing, it helps get this out. The funds are planned to pay for travel expenses to and from lacrosse mail, Rochester mayo, and if we can get into MD Anderson, also to pay medical bills co-pays prescriptions January 1 is right around the corner and it starts a brand new benefit here which means we have to start right back with a deductible. Start right back with co-pays and percentages until we meet the maximum amount of pocket. Then once we reach the maximum amount of pocket, we still have to pay our co-pays Each week that he’s in radiation. We are looking at roughly $600 a week and just co-pays that doesn’t include the 20% we have to cover plus the deductible upfront of 750.

This is a very expensive Cancer and we’re trying to give Tony time. He needs to get things in order but to make memories with all of us I know he would like to go to Fort Bliss, where our one son station to see him. He’s never been there. He also would like to travel to JBLM in Washington state Where our son‘s wife is stationed.  They got married this last September at Fort Bliss before she had to PCS. They are hoping to have a ceremony next spring early summer after our son leaves the military in April and we’d like to travel to be able to see that.

Please pray that God will bless us that God will bless Tony and help him make the decision about treatment. He’s actually listening to me say all these things right now and just saying Fort Bliss and see our son gets get married I think is reason for him to want to try to fight for a little while

I’m not gonna lie. This is hard. This is the hardest thing I have ever done. I am so overwhelmed. There’s so much paperwork so much research on top of caring for my husband and it’s going to get worse. I understand he will eventually decline and it’s gonna be very very difficult to care for him

Please keep praying for us and I thank you so much for all the support you have given us. We love you all very much and wish you all a very merry Christmas on Monday. We have a surprise for you that we hope to share. God bless you all.

So we saw both Oncology departments this week.  Tony is enrolled in a clinical study.  It is nice, it has PET scans to see if they can pick up on the cancer better than traditional MRI and CT.  There is also a short and a traditional arm in this study.  The traditional protocol is 30 radiation treatments, 30 oral chemo at the same time, a month off then 5 months of the oral chemo 5 days, 23 off.  With scans every 2 months for the remainder of his life.  The short arm is the same amount of chemo and radiation in the first month but in either 5 or 10 treatments.  So basically the short arm has a months worth of chemo in 1-2 weeks vs 6, and the radiation 30 treatments worth in 5-10 treatments.

We are waiting to find out if in the short arm or traditional arm.  The short arm will be cheaper in the long run with co-pays, however on the 1st it is a new plan year so we are right back to paying the deductibles first, then 80/20 until max out of pocket is met plus and always the copays...  $40 for specialty visits.. 

Next Thursday he has PET and MRI scans at Mayo and we go from there.

One med onc DR. says 14-15 months life expectancy...  One med onc says as soon as we see it back we hit it with another trial, then another, then another...  The Rad ONC says we are changing the terminology to IF the cancer comes back...  It is a glioblastoma, wildtype.  So please pray.  

Tomorrow is our first interview with railroad disability.  Everyone is telling us it is going to take well over a year to get. Pray they will expedite his case.  He cannot return to the railroad as he had a seizure and NTSB says it is a 10 year disqualification event.  So... Yeah, he is in fact disabled from his career.  

We were $50 over (November paycheck because he worked up until 10/27) being able to get energy assistance for this month so we will keep trying.  I am again going to be applying for more assistance through the state to try to get BadgerCare+.  But I have applied to 3 medical centers out of the 5 we have had to use for financial consideration.  

Please pray and thank you everyone for your support.  If you wouldn't mind sharing our journey we would be very grateful to you.  Merry Christmas to your family from ours.  

I can never ever say thank you enough for the generosity and sharing my husbands struggle.  

I wish I had good news but we did learn it is a glioblastoma wildtype, and non mgmt (I believe that’s the correct acronyms).  

For two years my husband has had a hand twitch and he ignored it and blamed it on caffeine withdrawal and long hours at work, 23/7/365 on call, working all hours day or night.  

Monday we are to get a phone call from his neurologist surgeon and then have a va appointment to see if he can get disability or medical/caregiver help, followed by a medical oncology appointment.  Wednesday we have radiation oncology.  We also need to call an attorney this week to get our wills and trusts made.  

Please pray God gives us time to get the things we need completed and that He guide Tony, the Drs and I at making good choices about treatments or what nots.   

I thank God for everyone that has donated to help us during this horrible time of our lives.  Thank you!! 

Woke up this morning to Tony feeling emotionally off.  Opened our emails up and found a test result available.  Though it doesn’t say a lot, it does tell us what he has for brain cancer.  Glioblastoma….  Next Monday and Wednesday are his appointments in Rochester at Mayo with Medical and Radiation Oncology.  Pray we will get more details then in regards to prognosis and how to best attack it.   

Thank you for the continued prayers and support.  I will post more next week when we know more.  PT went well today and he literally gave us work to do at home and we will check back in next month.  

Went to Madison Monday for Neurosurgery followup.  All is good so far just waiting on the molecular testing results.  He has to have an mri at 3 months and followup with her then but otherwise he has now been referred to Neurology with Mayo and they now will be the ones to determine if he can come off of the seizure medicine in the future.  

He was to have OT today but our little one has a bug of some sort so thought it best to cancel.  

We cannot thank everyone enough for the support you are giving at this time.  Please keep praying, some days are hard with our thoughts.  

Even if you cannot give anything please just pray and please feel free to share this with your friends, colleagues, and on social media.  We really do appreciate everyone. 

To those in the railroad we pray for your safety and pray you will enjoy some holiday time with your family, it is an odd year having Tony at home for the holiday, though he is sick, it is a blessing that we will get to have him with us this year.  

This week was filled with appointments and next week is much the same.  Tony began OT, his right arm, especially shoulder is very weak.  He is not happy with this hunk of clay they gave him, but he is doing the exercises daily, 3 times a day, 2 sets at a time.  

OT, PT, and Speech therapy copays are $25 each.  Monday he will see neurosurgery again and that copay is $40. Tuesday he goes back to the dentist for 3 fillings, and has 2 OT appointments as well as 1 PT appointment next week. The following week our cancer speciality appointments begin in Rochester.  

Thank you to everyone who has contributed so far.  Please share with your colleagues and friends.  Tony really misses his coworkers at the railroad, he misses his job a lot.  

Our son and his wife will be home soon for HBL so we are hoping those few weeks our appointments can be to a minimum to keep us from being able to spend time with them before they return to their posts. 

Still waiting on results from the tumor, they sent it for molecular testing, they are suspicious that it is a higher grade than originally thought.  I will probably begin working on rr disability forms, they will old us it take 444 days to be processed.   In 5 months sickness runs out so…. 

Funds that we receive from your help will go right now to pay the medical bills that are coming in from Genesis Health, life flight, ambulance, UW Madison, Mayo La Crosse and Rochester. Sad thing is January 1 is right around the corner.  

He received his final paycheck from the railroad, (pay was from 10/27) after 600 in deductions he was paid $58.   So tomorrow when I file RRSI I will have to figure out where that goes on those forms.  

Pray for our stress levels, my calendar is filled with black and lots of to do lists.  

Today was the first outpatient speech appointment and to say I am happily surprised is an understatement.  In one week the difference is so amazing to see.  Last week when we left the hospital Tony had a very difficult time looking at an illustration and telling you anything about the scene.  Today he pointed out everything in the scene and used complete sentences.  He can recognize objects and describe them, can read and write, the only two things are getting thoughts out to spoken word and recalling what was read while reading.  

His therapist understood our concerns about cost and making sure his cancer treatment appointments are priority, so she gave work to be done at home with biweekly check ins.  We could not have asked for better help and understanding.  

Friday will be just first outpatient OT appointment and we are hoping they will be just as understanding with needing to do as much work at home to help us with our financial burdens.  PT is one week from this Friday.  

We have heard from Mayo, the referrals are there and in 3 days should be able to see the appointment requests begin.  Please pray we can do radiation treatments locally but we do understand if we must travel daily to. Rochester for treatments.  

Pathology is not ready yet, the Dr. phoned yesterday asking for permission to do molecular testing.  Of course we said yes.  She did say it is definitely a cancer of the brain but as far as stage and subtype we are waiting still.  

Thank you to everyone for the prayers, meals, donations, we are very humbled by the amount of support we are getting.  Right now money collected will be going to pay the medical bills that are coming in.  

Thank you from the bottom of our hearts and God Bless You!!!

Tony is recovering, it will be a long process, but daily he is improving. We cannot thank everyone enough for providing meals, donations, getting items we need, the visits, the modifications to our home, and most importantly the prayers.  

Tony is resting right now and I try to take the opportunity to clean, deal with forms/work stuff for him, or play with the little one.  

I have learned his verbal cues for when he gives the wrong answer but mostly when he is tired.  He likes to forget about his right hand so today I have had to remind him gently to use it.  At one point I held his left hand to prevent him from using it. 

We did get a recliner yesterday on a very good clearance price and the man loves his chair. It really is more comfortable than the outdoor couch we use. 

Please keep praying for patience, endurance, strength, good sleep (for me too please), and healthy stress relief.