Fighting with Fire and Faith
Phoenix needs a bone marrow transplant.
Her PreB PH+ Acute Lymphoblastic Leukemia returned in October and testing shows it to be the exact same cancer that she was diagnosed with on October 24, 2011. Because our daughter has already endured a 2 ½ year treatment plan using chemotherapy and cranial radiation, we know this is not enough to keep her cancer-free. Research believes that there was at least one cancer cell remaining in her body after all the medicine and chemo and radiation to her brain, and once she was finished with the course, that cell (or cells) reproduced rapidly taking over her bone marrow and blood once again.
She has been treated with chemotherapy since October 2014 and her cancer has responded, and she is back in remission - this was the first step in determining if a transplant was an option. The next step was finding a marrow donor, and she has matched with two cord blood donors and one adult donor. The final decision made by Phoenix’s team is that she has a better chance with the adult donor. A better chance for engraftment and a chance that if the donor marrow were to find a leukemic cell in her body, it would recognize it as a threat and kill it immediately.
To prepare her body for the transplant, Phoenix will have to undergo four days of full body radiation, twice each day. The radiation is going to kill the cancer cell(s) that have been so good at hiding from the chemo. This will give the new marrow a “clean slate”, a perfect environment to create new and healthy blood and platelets. Of course there’s a hard part. Phoenix has already had the maximum lifetime allowance of cranial radiation. But she will get more. The radiation is going to affect her brain again. The radiation is going to kill her ability to have any children. The radiation could also do much worse. And after that there will be a couple days of chemo. Seriously?
The transplant, itself, is actually just an infusion, that looks like a blood transfusion, which will go into her body over a few hours. Engraftment is the goal, and that is when the new cells make their way into the bone marrow and begin to do their job, which is to make blood and platelets. This can take up to a few weeks to begin, and so this leaves a few weeks where her body will be making NONE. This obviously puts the body in an extremely critical and vulnerable state. Blood and platelet transfusions will need to be given regularly. Her physical condition will be, well, probably nightmare-ish. All of the side effects that she has already lived through, the ones that caused my PTSD, the ones that earned all of my Top 5 Worst Days…they’ll all be there, and with more.
We’ve already made a plan of care that involves a morphine drip, a feeding tube, diapers…you get the picture. We expect to live inside Riley Hospital for three months.
This is going to happen in just a few short weeks. This is going to be the beginning of Phoenix’s cancer-free life. This is the reality that I will live in regardless of statistics, and risks, and percentages, and naysayers. Live with me in my world full of hope and promise and light and love.
And in a few weeks remind me of what I just said.
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