Please excuse my brief hiatus from the blogosphere. I haven't been sure what to post because our situation keeps changing. Let me try to catch you up: Initial testing showed my leukemia (ALL) was due to hyperdiploidy of the 9th chromosome. We consulted with the doctors at LDS hospital and decided to join the Dana Farber research trial (an aggressive chemotherapy regiment that is patterned after pediatric methods).
After over a month of chemo treatments new test results showed that I have a rare form of ALL known as "Mixed Lineage Leukemia". This coupled with the fact that I was testing positive for "Minimal Residual Disease" - that just means that the cancer isn't gone yet - led the doctors to recommend that we drop the Dana Farber trial and undergo a bone marrow transplant.
It was a difficult decision because I've been handling the chemo fairly well and transplants can be risky and have life long consequences. My wife spoke to a Leukemia expert in Chicago, and I got a second opinion from the doctors at the Huntsman Cancer Institute; everyone agreed that a transplant was the way to go. Reluctantly, we switched gears and prepared for a transplant. All of my siblings were tested and only one - my oldest brother Justin was a match. As Justin started making plans to fly to Utah (he lives in Florida) I completed my current round of chemo and waited for my blood counts to recover.
Weeks later we met with the doctors again. The good news was that my neutrophils had come back up, the bad news - well, the other news really - was that a second test showed up negative for MLL - this was disheartening because it was the main reason we had decided on a transplant in the first place. It would have been nice if we could have had a third test to show if the MLL was really present or not, but all of my bone marrow from that initial biopsy had been used up in the previous tests.
The doctors gave me an option to have an additional bone marrow biopsy to see if I still had minimal residual disease but it would not reveal any more data on the MLL diagnosis because the cancer was already in remission. Unfortunately this biopsy revealed that we have not yet been able to eliminate all of the cancer. At this point the doctors said it was a toss up; we could continue with the chemo and hope to defeat the cancer without a relapse, or we could proceed with the bone marrow transplant. We were faced with a decision we thought we had already made!
Choosing again to move forward with the transplant we checked into the hospital for what doctor Asch calls "knock your socks off chemo". After unpacking a weeks worth of accessories and waiting for about 6 hours we got the final curve ball. Further testing revealed that my brother would not be a good enough match, and we would need to hold off on the barefoot chemo (no need to stay at the hospital). We would now have to rely on the national registry to find a bone marrow match. We packed our things and headed home.
After over a month of chemo treatments new test results showed that I have a rare form of ALL known as "Mixed Lineage Leukemia". This coupled with the fact that I was testing positive for "Minimal Residual Disease" - that just means that the cancer isn't gone yet - led the doctors to recommend that we drop the Dana Farber trial and undergo a bone marrow transplant.
It was a difficult decision because I've been handling the chemo fairly well and transplants can be risky and have life long consequences. My wife spoke to a Leukemia expert in Chicago, and I got a second opinion from the doctors at the Huntsman Cancer Institute; everyone agreed that a transplant was the way to go. Reluctantly, we switched gears and prepared for a transplant. All of my siblings were tested and only one - my oldest brother Justin was a match. As Justin started making plans to fly to Utah (he lives in Florida) I completed my current round of chemo and waited for my blood counts to recover.
Weeks later we met with the doctors again. The good news was that my neutrophils had come back up, the bad news - well, the other news really - was that a second test showed up negative for MLL - this was disheartening because it was the main reason we had decided on a transplant in the first place. It would have been nice if we could have had a third test to show if the MLL was really present or not, but all of my bone marrow from that initial biopsy had been used up in the previous tests.
The doctors gave me an option to have an additional bone marrow biopsy to see if I still had minimal residual disease but it would not reveal any more data on the MLL diagnosis because the cancer was already in remission. Unfortunately this biopsy revealed that we have not yet been able to eliminate all of the cancer. At this point the doctors said it was a toss up; we could continue with the chemo and hope to defeat the cancer without a relapse, or we could proceed with the bone marrow transplant. We were faced with a decision we thought we had already made!
Choosing again to move forward with the transplant we checked into the hospital for what doctor Asch calls "knock your socks off chemo". After unpacking a weeks worth of accessories and waiting for about 6 hours we got the final curve ball. Further testing revealed that my brother would not be a good enough match, and we would need to hold off on the barefoot chemo (no need to stay at the hospital). We would now have to rely on the national registry to find a bone marrow match. We packed our things and headed home.
And that's where I am now. The plan is to continue with regular chemotherapy treatments until I can find a donor. The good news is that there are over 5,000 potential matches. If you are interested in being a donor go to "bethematch.com" or click on the following link to sign up. Bone Marrow Registry
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