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.