While I feel that my raising money for LLS is important, sometimes I find it difficult to really define the “why” on a deeply personal level when others ask me about it. I have lost friends and family to cancer and specifically Leukemia, but I really have not been in a situation that I had to live with the long term impacts of blood cancers and the ramifications of its treatment plan. Devon Cox is one of many friends I have made running with Team In Training. Devon’s story resonated with just about everyone, and during one of our many runs, Devon was good enough to agree to be a guest blogger on our site to tell his daughter’s story.
My daughter, Story, was diagnosed with biphenotypic leukemia in July of 2010. She was four years old at the time. She was treated with two rounds of “high risk protocol” chemo. She was in complete remission after 60 days. However, because of Story’s particular diagnoses, we were advised that she needed a bone marrow transplant to have the best chance of long term remission, and her older sister was a perfect match. There was no guarantee that a transplant would work, and the process could even kill Story. The only thing we knew for sure was if we chose not to go ahead with the transplant and Story relapsed, the chance of successful treatment would be significantly reduced.
My wife, Christy, and I faced a horrible decision. There was no way to win. If we continued with another year and a half of maintenance treatments, there was a good chance Story could relapse. Her disease, a mixture of T cell ALL and AML, is aggressive. It is also rare and little research exists to use as guidance. Relapse would significantly lower the chances of a successful transplant, or even of achieving remission again. If that happened, how could we live with ourselves?
On the other side was transplant. Story’s sister, Lyric, was a perfect match. The chances of Story’s body accepting Lyric’s donation were good. Would Story be cured if the transplant was successful? NO, but she would have a better chance than without the transplant. Could she relapse anyway? YES, but the chance of relapse would be reduced and we would have a better chance at winning a second fight than without the transplant. To better the odds, though, Story’s life would be altered forever. She would go through more intense chemo, followed by four days of total body irradiation treatments. She would suffer horrible short term side effects. Long term effects are not fully known, but include a higher risk of developing: all kinds of cancer (including non-related leukemia); eye problems; hormone problems at puberty; abnormal bone growth; greater risk of heart disease; bladder problems; kidney problems; liver problems; brain tumors; possible developmental problems, and probable infertility. How could we live with ourselves after doing this to our daughter?
We chose to better Story’s odds of long term remission and eventually, cure. She received Lyric’s bone marrow on November 8th, 2010. Story has been in remission since that day, however, Story had to spend six weeks in an isolated room in the hospital (including Thanksgiving and her fifth birthday) with Graft vs. Host Disease, a result of her body rejecting the new bone marrow. She had a “pain pump” so she could give herself morphine, and a vacuum to suck the saliva out of her mouth because she could not swallow. She had sores and blisters on the inside of her mouth and esophagus, down to her stomach. It is impossible to describe how it felt to see my daughter suffer in this way, and to know that Christy and I chosen this treatment for her. Did we make the right choice? It is a decision that I question almost everyday. The fact is, we will never know whether or not it was the right choice.
Based on what little research has been done, Story has a 60% – 70% chance of long term remission (5+ years). If it were your son or daughter, would that be good enough? Is it acceptable to you that current treatments for so many blood cancer patients cause horrific side effects? Is it okay to cure one disease, but cause many more?
By supporting LLS, we can help improve treatments and find real cures. We can improve the lives of blood cancer patients by ensuring that long term side effects are minimized. We can give parents better choices for their children. We can make a difference.
A big thanks to Devon for taking the time to share his family’s story, and as you can see, even as blood cancers become more survivable, we need to keep pushing for better and less destructive treatments for anyone with blood cancers (or any cancer for that matter).
On this Memorial Day, please donate to LLS and our team by clicking HERE.
Thank you!