Post 1
I’ve never regretted only having one child before. Now, though, I really wish I had two children. If I had had a second child, maybe my nineteen year old son wouldn’t have to depend upon a stranger for his best chance for a long life.
A month after his sixteenth birthday, two months into his junior year of high school, my only child was diagnosed with pre-B cell Acute Lymphoblastic Leukemia. We were told this was a cancer with a 94% cure rate, that, if you had to get leukemia, this was the kind you wanted to have.
The goal, we were told, was to get the patient into remission by the end of the first month of treatment, and then he would have two full years of chemo after that remission date to make sure the cancer stayed away.
My son took three months to get into remission. No big deal, they said.
That was February. In July that same year, he experienced a rare side effect of one of his chemotherapy medications, methotrexate toxicity. The severity he experienced was even more rare. Methotrexate can cause neurological issues, but most patients recover quickly and with no lingering side effects once given medication to counter these effects.
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My son essentially had a stroke. The methotrexate caused large lesions in his brain. He lost the ability to speak and to control his movements. He was placed in a drug-induced coma the first four days to give his brain time to recover. I wasn’t even sure he would survive; if he did survive, I was starting to think it might be as a vegetable. He stayed in Pediatric Intensive Care for 22 days, and then was transferred to a rehabilitation hospital for eight weeks.
As I write this, it is now almost three years since he experienced that side effect. He still has issues with his gait, and his speech is still slow. Anyone meeting him for the first time probably thinks he has cerebral palsy.
And, as I write this, he is in the midst of treatment for a recurrence of the leukemia. The genetic signature indicates that it is the same leukemia he had before, which means it never truly went away, and was just very good at hiding. He took three months again to go into remission.
Our family has been informed he will require a bone marrow transplant to give him the best possible chance for a long-term, cancer free future. A full sibling match would give him the best possible chance, but he is an only child. My husband is a half match, which is good for a parent. And there are six potential matches from the bone marrow donor registry.
Which brings me back to where I started this post: My son needs to rely on the kindness of one of six total strangers for his best possible chance of a long life. We do not yet know if one of these strangers will work out as a donor, or whether my husband will be donating to him, or when the transplant will take place.
We do know it is an incredibly horrific, dangerous process, and there is no guarantee of success. But we also know that his medical team would not recommend this course of action if they did not firmly believe this was the best possible choice for him.
And, so, we wait.
