Carelines Fund


Carelines Fund

Welcome to Thomas’s Carelines page! Thank you for coming to support Thomas in his journey of recovery. Here you can:

Thomas’ MOST RECENT UPDATE

I just kept thinking "tomorrow will be a good day...I'll have time for a journal entry tomorrow..."
Nov 17, 2021
But every "tomorrow" has brought additional challenges! Tom's transplant journey started simple enough. On October 5, we reported to the Mayo Clinic for a day of appointments and classes. We got a crash-course in all that his course of treatment would entail. The Transplant Team created a chemo regimen that would take into account Tom's other health challenges, and would be easier on his system. We visited the pharmacy to pick up prescribed medications, visited with the nutritionist to learn best practices for keeping him fed and healthy during his transplant treatment...it was a lot of information, but the day went

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I just kept thinking "tomorrow will be a good day...I'll have time for a journal entry tomorrow..."
Nov 17, 2021
But every "tomorrow" has brought additional challenges! Tom's transplant journey started simple enough. On October 5, we reported to the Mayo Clinic for a day of appointments and classes. We got a crash-course in all that his course of treatment would entail. The Transplant Team created a chemo regimen that would take into account Tom's other health challenges, and would be easier on his system. We visited the pharmacy to pick up prescribed medications, visited with the nutritionist to learn best practices for keeping him fed and healthy during his transplant treatment...it was a lot of information, but the day went well. October 6, 2021 -- Day -7 Tom had a Hickman Catheter inserted to allow for easier infusion treatments through the course of treatment. The process went very smoothly, even with the plates and screws in his collarbone creating a little bit of a barrier. October 7, 2021 -- Day -6 First chemo infusion went really well. Tom felt really good after, was able to eat and drink dinner with the family. We spent time walking, took the dog around the block, enjoyed a fall day in Minnesota. October 8, 2021 -- Day -5 More of the same! Tom actually commented on his walk in from the parking garage about how good he was feeling, and how he didn't understand how everyone was telling how miserable he would feel in another 10 days' time. October 9, 2021 -- Day -4 Tom tested positive for C-Diff infection, and started treatment with Vancomycin. Other than that, he continued to feel really pretty good. He was still able to eat and drink, we spent time watching a movie with Murielle...it was a pretty good day! October 10, 2021 -- Day -3 Definite positive shift in his digestive issues. Things were still looking pretty good! He  was just anxious to get to the TRANSPLANT!  October 11, 2021 --Day -2 Last day of CHEMO before the big day! This chemo was a little bit more intense. They added a second medication to the regimen for this last day of conditioning. He expected the day to be a little rougher, but he made it through without a problem at all. He was told to expect a few sores in his mouth to develop over the next few days as a result. October 12, 2021 -- Day -1 This was a "day off" from chemo. He had to report for lab work, but overall felt good. We spent the day with a little explore around Rochester.  October 13, 2021 -- DAY ZERO! The transplant itself went SO quickly! It was a long day; he had to have several hours of fluids infused before and after the HCT were introduced. But his sense of humor was high, we were laughing and joking, and looking forward to Murielle's BIRTHDAY DINNER! She had already picked the place  we would order from, and she was anxiously checking in on progress...she's so excited that they now share a birthday! October 14, 2021 --Day +1 Tom continued to feel pretty good. His energy level was high, his appetite was fairly consistent.  October 15, 2021  Day +2 Another good day! Feeling a little bit of fatigue, but was able to eat well, went for a walk with the dog. October 16, 2021  Day +3 As outlined in the treatment plan, on day +3, Tom was admitted to the hospital for 2 days of additional chemo, in hopes of preventing graft vs. host disease. The day was pretty uneventful, but once night fell, Tom developed a tremendous headache, which was unrelenting for the next several days.

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Thomas’ STORY

As I sit here, nearly a year later, I remember wondering why the doctor’s smile was so bright as she was delivering the news that would change our lives...she brightly announced they had found the reason Tom's platelet count had been low for so long. "You have Chronic Myelomonocytic Leukemia. CMML." And then we learn that this cancer does not respond well to chemo, nor to radiation. The average life expectancy after diagnosis is 3 years... The only option for long-term remission or a cure is a bone marrow/Hematopoietic Cell Transplant (HCT/SCT). Wait--WHAT? Like so many other families, this had never even crossed our minds!

We were referred to the University of Oklahoma Health System, to their Bone Marrow Transplant Team. Initially they said they would start the search for a Hematopoietic Cell Transplantation (HCT) donor immediately, that Tom should expect to be in the transplant process within 45-90 days. After months of testing (and the complication of an additional pulmonary diagnosis), they told us on March 31, 2021 that they didn't consider Tom a viable transplant candidate. They would not perform the procedure.

 We could have just sat down and accepted this limited time, knowing we would watch his decline and help him manage. But NO! We have too much left to experience together!

So March was the end of our journey with OUHS, but the beginning of our relationship with the Mayo Clinic in Rochester, Minnesota, and their team of professionals. Tom spent 4 days in appointments and testing at the beginning of May, and their messaging was SO much more positive. They didn't see a reason to deny him the transplant, and they began their search for a donor match. We returned to Oklahoma to wait for news.

In June, Tom got a call that they needed to see him for a few other tests, so there was a second trip, a second week away from home. And the wait...OH, the wait! The wait was far more challenging than the drive or the being away from home. Every day that ticked by with no news and no update seemed to be 50 hours long. But then, when he got the call that they wanted him to return for pre-transplant evaluation...that was the SWEETEST call!

The first week in September, we made the drive a third time, north to Minnesota, and the outcome was exactly what we had hoped for. Tom's condition was very stable, the cancer had not progressed, his lungs looked...well, not GOOD, but not worse. They had located a suitable donor, and the donor was scheduled for his harvesting procedure to happen in the middle of September. They started creating a schedule of appointments for Tom to receive his new, healthy bone marrow on October 13.

So here we are, days from heading north one more time. The reality has hit. We will be staying in Minnesota for about 100 days, also maintaining our home nearly 1000 miles away. 

We plan to share our journey through this page, and hope you join us. Accepting all positive thoughts and prayers you can spare!

Any help you can offer will help to ease the financial concerns of costs not covered by insurance, and allow Tom  to focus his energies on healing and fighting through this process.

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