May 19th – We started off the day with some rather disappointing news; brother David was a perfect match but they won’t let him donate because of his existing health issues. We can’t help but wonder why they even tested him when we told them up front that he had multiple health issues. Why would you put us through the disappointment of knowing he matches but can’t donate. Why put him through the heartache of wanting to help, knowing he’s the perfect match and then saying no you can’t. We continued on with our day as usual and until we got an unexpected call from our coordinator Maureen late this afternoon.

She wondered if we had talked to the siblings and heard the news; we actually hadn’t heard complete confirmation from everyone but had a sneaking suspicion that there were no matches other than David. She shocked us by continuing to say that while David’s match was disappointing, they felt it more promising to follow up with the matches found on the registry. We were both so taken back; we aren’t positive of what she said, but we believe she said there were 25 partial matches located. They had narrowed it down to five and then two. WHAT??? Yes!!! They are working with two potential donors to have make sure they are still willing and able to participate. If not; there are three more second string players in the wings!

So, we will continue to wait some more but now knowing that the chances are real; we are pretty excited. We will continue to welcome your prayers and wishes that at least one of these two (or five) find it in their hearts and schedules to continue with us to save Scott’s life. It sounds like Scott would not go to the hospital to begin chemo until the stem cells have been collected and are safely stored at U of M.

We are hoping to get away for a few days soon to do a short vacation before things get serious. They still think it will take until July to get everything in place but it seems a little more real tonight. Tomorrow, he has a pulmonary function test and next week an echocardiogram. Preparation is in the works!

We haven’t visited our favorite local brewpub since returning from vacation but felt a celebration was in order. Scott enjoyed his Barq’s Root Beer and I enjoyed my Shadow Dog. He wasn’t hungry enough to eat out but did have a craving for some raisin bread French toast so I obliged. One step closer to the other side!

May 16th – You don’t know how nice normal feels until things aren’t. Watching someone in excruciating pain doesn’t make for a great vacation even if you are on an exotic island. That was three months ago already. Friday the 13th didn’t bring anything bad but it also didn’t bring us the news of a match either. The weekend brought us a little normalcy. I worked at the store Friday and Saturday and it was fairly busy; normal for this time of year and weather. We had friends visit Saturday night and enjoyed a meal at the local Pub before having a bonfire and enjoying the beauty of our backyard. Sunday, I did my store cooking/prep work and we took the ’84 to Luke & Alli’s cottage to try some fishing. It rained just long enough to chase us off the lake but not too long to make it impossible to mow the lawn for them. We headed back for supper of pork chops, mashed potatoes and asparagus. Finished it off with my favorite rhubarb custard pie and ice cream. It was wonderful to have him eating right along with me! Fingers crossed for another week with pain under control and a hearty appetite. We will take a few “vanilla” weeks before we enter the next chapter of this anything but normal year.

May 12th – Patience is a virtue; one I wasn’t blessed with. The latest challenge is dealing with AFLAC. If approving the cancer claim takes much longer, I will be cooking their goose – I mean duck! Automation is great but when you receive over 20 emails asking you for the same thing that doesn’t exist; it gets a little annoying. They are insisting on a biopsy to prove that Scott has cancer. Well – with blood cancer there isn’t going to be a tumor to biopsy. And you don’t get a certificate that says “Congratulations, you officially have cancer”. It would be nice if they would just pick up a phone and talk to me but they don’t provide you with a phone number of a live being either. Our agent is trying but with little success. Once we get through this initial speed bump, I think the policy will prove very beneficial; time will tell. We are also attempting to patiently wait for Dan and the other siblings results from the Match testing. Thanks to all the young folks that have requested and sent in their test kits already. I know many of you are disappointed with the 40-year cutoff but I suppose that the testing is costly and they want people that can remain in the database for a long time.

Tonight, it’s cool enough to enjoy the back deck. Nothing better than a cool spring evening watching and listening to all the wildlife. Our backyard blooms are pretty impressive right now too. The week has been pretty uneventful. Grateful for no terrible pain episodes but not feeling good enough for any great adventures.

This photo is one of my favorites from when we had a group down for a farm tour. It’s been hard for Scott to watch all the farm activities and know that he hasn’t been there to help out. Thankfully help has presented itself and Steve hasn’t had to go this totally alone. Hopefully Friday the 13th will turn into a great day of good news; if not, we will continue to be patient knowing that God has a plan.

Relevant about May 10th, 2022 – We are on pins and needles as we wait for the results of Scott’s siblings testings. So in my spare time I read and write. So much of the medical stuff is not my thing but I’m learning. We learned that your typing comes from your parents; and that siblings have a 25% chance of matching. Your children will have no greater chance than a stranger to match as half their markers come from their father and half from their mother.

With Myelofibrosis, the bones are filling up with scar tissue and the blood is the cancer pulsing through his veins and bones. I don’t know about you but I never really thought about blood being in your bones. I’m likening the stem cell transplant to an oil change for your auto. You’ve gotten bad oil in your car and the system needs to be flushed. You can flush it out and put in new oil but you won’t really know if you’ve damaged the engine until you try and fire it up after you’ve done all the work. Scott will undergo extensive chemotherapy in the hospital to kill as much of the cancerous blood as possible before they give him the stem cell transplant or “oil change”. With any luck, the stem cells will not be rejected and they will multiply and create all new healthy blood for him. On the donor side, they will receive a drug for a number of days prior to the transplant to build up their stem cells for harvest. They will go through a process much like giving blood only the blood will be “sorted” and the needed cells harvested for Scott and the remaining blood returned to the donor in their other arm.

What we can’t know ahead of time is the amount of damage that the cancer has done as far as the scarring in his bones. This scarring is what is causing the extreme pain and we can only hope that as the Jakafi works it’s magic and with all new blood, that the scarring can be minimized so that his pain is greatly reduced.

https://bethematch.org

Scott has a match today, but please consider helping someone else in need. See the link for more information on becoming a stem cell donor.

Posted first on April 19th

Some days you just have to really look to find the bright side.   You have to decide to celebrate the simple things; like getting the wood stove going with no kindling because you still need heat and it’s the middle of April.  For some, just having a bowel movement is enough to call it a good day.  I own a store; and I seem to be getting my fill of vendors and suppliers that don’t have products, try to pawn off their short-dated products on me or don’t bother to show up at all.  Prices are climbing rapidly.  You listen to people complain about their problems and you really just want to tell them what REAL problems are like.  You also notice that we live in a society where we continuously ask each other as a way of greeting – “How you doing?”  or “How’s your day going” and respond with “good” or “great” but think to yourself that your response couldn’t be further from the truth.  Lately it’s more like “I’m one step away from losing my shit on somebody but thanks for asking.”  😊  I continue to be amazed by the workings of our health care system.  I tried to renew Scott’s pills on Friday but was denied because it was too early; it didn’t run out until mid-Monday.  BUT they also have a rule that you have to allow them 48 hours to fill a script and the pharmacy isn’t open on Sunday.  I was told to send it back through on Monday morning and they would take care of it; but of course that didn’t happen.  I was finally able to pick it up today around 5 p.m. but after 24 hours on Tylenol rather than the script he was miserable all day.   Thankfully he still had his other pills but even going without one script right now is a problem.  Managing multiple scripts with 10-day refills and making sure he takes something or another every two hours 24 hours a day requires a spreadsheet.  Currently he takes at least 45 pills a day; more if he’s having a pain day.  What do people do that don’t know Excel?  But seriously, I think I’m going to start a campaign for prescription reform; this is totally ridiculous.   How many people are dying because of our existing laws?  How many suicides take place because people are honestly in pain and suffering and don’t feel heard or cared for?  Because they forgot their password or log-in for the tenth time and can’t manage the technology required to navigate the health care system.  Then add to that the fact that all health care facilities are over-booked and health care workers are over-worked.  It’s all the time spent dealing with red tape that prevents them from actually practicing medicine.   If I didn’t already have enough projects I wanted to pursue in my retirement, I now see a couple more causes I could make part of my next chapter.   Right now, I write to keep from imploding and regain focus so I can be the caregiver Scott needs me to be right now.   I apologize for the splattering!  I need to remember to be thankful for insurance and appreciate that we are enjoying a warm home because I did get the fire started. 

Post-script: Two days after this post, I went out to start the woodstove and found that someone had snuck in our drive and deposited a large amount of kindling in our woodstove shed. Miracles continue.

April 21st – Today we met with the transplant staff at U of M. Scott had his blood work done for typing. His siblings will be tested and have a 25% chance of being a match. Fortunately, Scott has four siblings. Brother Dan had his done while we were there today. They will also be checking the International data base. It will be done as a stem cell transplant rather than a bone marrow transplant, which sounds like that’s most common now and easier on the donor. Stem cells can be harvested and frozen for transport and the process is much less invasive for the donor. Dr. Riwes gave us a lot of information to digest about the percentages and probabilities. It will be a difficult 3-4 months that will require us to find a place to stay in or near Ann Arbor. There are risks and no guarantees but Scott is very positive and is looking at the upside of having a chance at 10 or more years of wedded bliss (my words of course) and the possibilities of seeing more grandbabies and trips to exotic places AND Batchawana.

We will meet with the Hematologist there in the next two weeks. She will evaluate his progress on the Jakafi and his spleen health to determine when the right time to do this will be. I will continue to keep you posted when we have new information.

Sounds like we might finally be getting some nice weather so make sure you take time to enjoy it!

This picture was taken Easter Sunday last year. Not much time for hanging out in the barns these days.

The Fed Ex truck pulled in this morning and delivered a life line. The long awaited drug, Jakafi, arrived and he started to take it today. No immediate side effects. He will need weekly blood draws to track his blood’s reaction to it.

It’s taken me a few days to process but we got a call from Mayo last Friday and they indicated that after reviewing the 2nd bone marrow biopsy thoroughly, they have decided that the best thing for Scott is to pursue the stem cell or bone marrow transplant immediately rather than wait a couple years. Since the procedure requires intense follow-up for an extended period of time, they are encouraging us to look at treatment here in Michigan. I have him registered as a new patient at U of M and we are waiting to hear back. The family that has always been Michigan State fans will have to trust the experts at the Maize and Blue this year. I’ll provide more info on that as we learn the process. His siblings will be tested first, but It’s likely his match will come from the Be the Match program. It sounds like the ideal donor is between the ages of 18 and 35. We will consider having a Match party in the future once we learn more. You know – a free chicken wing or lamb brat for every check swab or something like that!

Scott remains very positive about this change of plan. We fully trust the doctors at Mayo Clinic and have heard many success stories from people that have had the transplants and now have their normal lives back. So we forge ahead!

April 7^th – According to Facebook, 3 years ago we were at the Kenny Chesney Concert. I don’t think it was quite as eventful as the Keith Urban concert in 2018 where Tal and Scott embarrassed the kids by dancing in the isles at Van Andel while the lights were on during intermission.  That was the same concert that they pirated a B-93 banner or two after the concert and told every young pretty girl that would listen that they were taking over the Morning Show for Neal and Reese on B-93 the following Monday.  Cindy was taking photos and telling them to look for them on the B-93 website the following day.  Scott was really out of his comfort shell that night and loving it.  A great time was had by all…. 

Today wasn’t nearly that eventful but I did talk to the pharmacist and the prescription for Jakafi is on its way. It was another frustrating process but in hindsight if they are willing to pay 100% of a prescription that is said to cost $15k a month, and could potentially give us our Scooter back, I guess I will let the insurance company tell me where it has to be purchased from and wait a couple extra days while they work out the details. More answered prayers for an affordable co-pay!!

Next week we hope he will feel well enough to go to a concert in Shipshewana that we planned months ago for my parents’ anniversary gift. It’s not a long drive for us and it’s a very comfortable low-key theatre. Fingers crossed we can get him there!

Thanks again for the continued messages and prayers!

Friday, April 1st – Meeting with the Hematologist confirmed the internet diagnosis of Myelofibrosis; more specifically Post ET Myelofibrosis.  A rare bone marrow cancer.  Post ET meaning it develops after a period of Essential Thrombocythemia. For those that are the type that like to research like me, a good place to start is:  https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057.

Doctors indicated that the median life expectancy for someone with this stage of the disease is approximately 36 months.  Meaning that half the people live less than 36 months and half will live more than 36 months.  This can be improved if he proves to be a candidate for a stem cell transplant down the road a couple years.  Our first priority will be getting him on Jakafi; currently the only approved medication known to be effective for Myelofibrosis. 

At this point, they believe that the lesions that were showing up in the scans are from the MF and not metastatic bone cancer so that is a blessing. Based on how he has been feeling and how fast the cancer has progressed, we are relieved to hear at 36 months is a possibility.  Realistically none of us are promised tomorrow, so we will go forward grateful for every day. 

We are thankful for so many people and things.  Gifts of food, traveling money, calls, texts and cards have all been much appreciated.  Equally important are some things that have happened that have little or no explanation.  I want to share what I believe your prayers have done for us.    

First, our thanks to a special friend for offering his words of experience at Mayo Clinic that opened Scott’s mind to the need go for help outside of Kalamazoo.  Your words made all the difference. 

The ability to find the awesome little VRBO house that made having Tal go with us very affordable and comfortable.  His willingness and ability to take a week and stay with us was incredible and we will be forever grateful for his (and Cindy’s) support.  Spending a week alone while Scott slept most of the time would have been very depressing.  Instead, we both put on about 10 pounds – “getting our eat on” – quote from a movie we watched – aka stress eating together.  😊

After learning of Scott’s enlarged spleen, I had returned to my internet searching.   What I found that night was information I hadn’t found before and it was clear that Scott had a textbook case of Myelofibrosis.  I told Scott what I had found and tried to pull it up again and that same exact information was nowhere to be found.  Similar sights had good information but nothing as clear and obvious as what I had viewed the night before.  Having this “vision” before meeting with the hematologists made the doctors news much easier to hear.  It made it confirmation rather than shock and fear.    

Before we left for Mayo, I had learned from a customer that he had a condition in the same family as Essential Thrombosis and was having great success with Jakafi.  Knowing that he has lived long past his initial diagnosis and is able to lead a normal life with this medication is VERY encouraging.   

We made it home in great time despite the snow and rain, so prayers for safe travel were granted as well.  While this road isn’t the path we had planned, the people that have been placed in our path have been purposeful.  The doctors and staff at Mayo Clinic were amazing and we would highly recommend going there.  We trust that we will continue to be blessed with miracles in this difficult journey.            

March 31st

To Scott from Sheryl.

When I agreed to serve on the Farm Bureau State Committee for the Promotion and Education of Agriculture, I felt like it was an opportunity to make a difference. Little did I know that it would lead me down the path to such happiness. Thankfully the organizer there saw something that we would have never put together; that the short, chubby loud gal from Sunfield would be the perfect match for the tall, thin and quiet livestock farmer from Vicksburg. It’s hard to believe we have been together for over 10 years already. I pushed you out of your comfort zone and we began traveling. We’ve enjoyed several areas of Mexico, Jamaica, Costa Rica, Spain and Maine. Our blended family has enjoyed several trips to Batchawana and we have great times together. We have our granddaughter River, several “grand dogs” and many unborn grandchildren in our future. We have the best friends and family anyone could ask for. So much to be thankful for. I can’t help but reflect on all these things as we await the news tomorrow. We’ve most certainly hit a bump in the road, much more seriously than the pot holes on our actual road that we fought so hard to save last year. We have each other and so many wonderful people lifting us up. Your vacation shirt clearly still has a lot of life left in it and a lot of “Gearwalt” bucket list trips still need to be taken. You have been so strong and determined over the past few weeks and I know you are fighting for your life. We will process what we hear and remain positive and fight as hard as we can for a love that so few have the opportunity to experience. I will cry today so I can be strong for you tomorrow.