Elsa's Medical Funds
After a long waiting period, we found out Elsa's AML is back (low levels now, but every day the leukemia cells are multiplying) and the same subtype she was at dx (5q-). Her type of AML places her into a category that has a much higher risk of relapse and is harder to treat. She's always been 99% superman Eli's cells (donor cells) and 1% her own since her BMT last year. That always bothered me, but nothing was ever wrong with her labs so we just celebrated the fact that she was rocking her transplant. In that 1% of her own cells her leukemia lurked waiting to come out of "hibernation" (for lack of a better word). Her wonderful oncologists, Dr. Bhatla and Dr. Hugge caught it early...praise the Lord!
So now where does that leave us with treatment options. Since they did catch it early we do have an option other than a second transplant. We are looking into a new, chemo-like drug, Revlimid, that has had wonderful results in adults dx with AML 5q-. We are waiting for insurance to approve her taking this drug, so that we aren't stuck paying a whole lot out-of-pocket. She'll (hopefully) take the Revlimid a few weeks before we schedule her Donor Lymphocyte Infusion (DLI). This process requires doctors to take the lymphocytes from her donor, Superman Eli, to infuse into her to kill off any leukemia cells in her body. If this doesn't work, we will need to pursue a second transplant.
I'm so sorry this is a long post, but there's been so much we've been told the past 24 hrs. between her Glennon oncologist and the Seattle oncologist. Once again thank you so much for supporting our family through this journey, but most importantly supporting Elsa. She has been feeling bad lately, so please pray her disease hasn't progressed too much and that she starts to feel better.
Well, Dr. Bhatla called Tuesday (yesterday) with Elsa’s latest bone marrow aspiration. There were leukemia cells detected in her marrow again, the leukemia has more than quadrupled from December, and her donor cells (Eli’s cells) are on the decline. We were told to start Revlimid ASAP, so we started last night. She will take her oral chemo for 3 weeks and have an off week. She will have another bone marrow aspiration on February 28th to see if she is responding, and we will take it from there. There is no map or treatment protocol (besides transplant) for Elsa’s subtype, 5q deletion (5q-). If Elsa’s disease progresses too much, she will have another transplant.
We know the Lord has a plan for her. It’s hard to understand why Elsa or any child for that matter has to endure cancer and treatment. But we are putting our faith in Him, not spending to much energy on questioning “why”, but focus on moving forward. Please pray her care team is able to find what works to finally kill this awful disease, and that Elsa doesn’t experience any possible side effects from Revlimid. #prayersforelsa #elsastrong #kidsgetAMLtoo
We received Elsa's results today for her MRD test. I wish I could say Kevin and I got our Christmas wish, but sadly I can not. Dr. Bhatla called and really she didn't have to say anything. The awkward silence, while she was trying to build the courage to just tell me, was all I needed to confirm our worst nightmare. It's back-leukemic cells were detected in her bone marrow. All we know is we caught it early. Please pray for our girl, and pray for the wisdom to do what's best for her medically and emotionally. I hate AML.