Thomas’s Story

Site created on September 30, 2018

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Journal entry by Amy scott

As some of you may or may not know, my dad recently relapsed with his Acute Myeloid Leukemia diagnosis. He has been in treatment for it and had a bone marrow biopsy done last week, so that his team knew if the chemo was working in the way they hoped. He received results for the three things that they look at during the bone marrow biopsy. 

 

The first part is the leukemic blasts, another is the MRD (minimal residual disease) and the last are the cytogenetics. When he relapsed, he was at 53% leukemic blasts, and in order to keep moving forward on this journey, he needed to be at 5% or less. His results showed he is at 2%. He needs to stay at this point, so he will continue to go through another cycle of the IV chemo as he has been. The chemo is to prevent the bone marrow from making “bad” cells. 

 

The second part, MRD, is basically some smaller leukemic cells that are there but are hidden. This is either a positive or negative result, and he should be negative. His result showed he is positive, but he is at .06%, which is close to what the doctors want or need him to be at. 

 

The third part the team is looking at is the cytogenetic part, but results are not back yet.  

 

All taken together, the plan going forward is that my dad will continue to take the daily oral chemo and will start his next cycle of IV chemo this week. This is the first part of the plan to get him back in a longer remission. 

 

The next decision for him to make was to try a DLI (donor lymphocyte infusion) which is getting cells from his original donor if the donor agreed to it or look at searching for a new donor completely and go through a second bone marrow transplant. This was not a decision to take lightly. My dad chose that he would like to try the DLI first. The transplant team already reached out to the original donor from Germany and he agreed to it.  The procedure is done in Madison and it’s three times total over the course of three months. The DLI has a little less than a 50% chance of being a long term cure but definitely worth trying first. This brings the risk of graft vs host complications again though, just like the actual transplant did. For those who are unaware, my dad had some significant side effects from the transplant that still impact him today. 

 

My parents asked what happens if the DLI does not work.  Dr. M said that they can look for a new donor and do a second transplant as another option. Having a transplant is the medical team’s first choice for long term survival. My dad was only a year and a half away from the five year mark of being considered cured from the AML post his original transplant before the relapse. He and the team discussed the options in a lengthy conversation, going over the past complications he had from the transplant, and again decided to try the DLI first. 

 

My dad is only 49, and is NOT ready to just give up fighting! That is why the third option of letting time do it’s thing with the AML is not even something to consider. We all need him here, and love him very much. As always, thank you for all of the prayers and positive energy! This is a long road in many ways, but we feel he is making the best choice right now. 

 

For those who have asked how they can help, there are a few things that have come up. 

 

  1. PRAYERS and/or lots of positivity! 🤍 
  2. Assisting with things around the house that my dad really shouldn’t be doing that he typically would do. My mom also has her own medical concerns going on where she is unable to do some things around the house too. 
  3. Gas gift cards. The many many trips to appointments in town and out of town coming up can add up! 
  4. Grocery/Target gift cards for groceries and household necessities 
  5. General contributions for my dads medical bills. The first time he was diagnosed with AML was a complete shock that no one could have prepared for, and the same goes for this time (e.g., prescription costs, travel costs, appointment co-pays each time, my dad not being able to work and my mom being the primary caregiver for him). We certainly do not expect everyone to donate funds, but we are more than appreciative for any sort of help that you can provide. We cannot let the cancer win. My dad is a fighter, and we WILL beat this. 🧡🧡

Please see the GoFundMe link for my dad’s relapse journey. The funds will go to Tom and Amy Scot:

 

https://gofund.me/c1451620

 

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