Elsa's Medical Funds- 2nd transplant
Donation protected
When your daughter's oncologist starts the conversation off with..."I wish I had better news to share". You brace yourself for what might follow and think to yourself how bad can it be; I've already been told my daughter has cancer once, but hearing it again isn't any easier (and I hope, truly hope you NEVER EVER have to hear that). Well this is what we know as of today.
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.
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.
Organizer
Kevin Wiemerslage
Organizer
Waterloo, IL
