Our current and past treating oncologists are very optimistic and compassionate men. Both also agree almost entirely on Nico’s treatment plan. Each has a very different lens, however, and even though we are almost two years into treatment, we are learning some things for the first time. Some of it has been hard for us to process or accept.
Nico’s ability to walk, run and climb is very labile. He is clearly impaired, however, and the length of his impairment each month is increasing. For about two weeks after the monthly dose of Vincristine, he falls often, runs with a limp, avoids climbing and acts moody and sluggish. He crawls (rather than walks) up stairs for about two weeks a month. He can climb upright if he holds onto a handrail for a week, and then he seems to recover the week before his next dose. He compensates for the numbness and pain in his left foot by galloping instead of running. An outside viewer would not necessarily notice, but it is obvious and painful for Jeff and me. A few weeks ago Nico told me, “My foot does not listen to my leg.”
When I brought this up several weeks ago, the clinic’s physician’s assistant explained that regardless of the neuropathy, the chemo continues monthly. The only time the dose is reduced is when kids require around-the-clock narcotics and cannot walk without assistance. He also added that I should expect Nico to get worse. This statement has kept me up at night. I wonder if my child will be able to walk by the end of treatment.
The past month, I used a lot of oxycodone and fretted about whether I was adequately controlling Nico’s pain or just needlessly medicating a three-year old with narcotics. In our case, our doctor thinks that physical therapy would be useless. Our oncologist said that eventually these side effects (from Vincristine) reverse, but that it can take years after the completion of treatment.
Of course we are grateful for the reversible nature of these problems. Of course we are grateful that this treatment exists even with the side effects. But Jeff and I watch our child suffer regularly. At the beginning of treatment, I used to tell myself that it was the only life our son really knew, and that he was therefore able to accept this better than Jeff or me. I do not believe that anymore. People know when they are suffering whether it is the only way of life they know or not. Jeff and I are very unsure about how to handle what are clearly behavioral issues related to an exceptional amount of trauma. But we are trying to find answers.
I am not able to just accept any of this. Maybe I am wrong, maybe I am right, but doing nothing feels like we are giving up. I keep thinking about Bryan Fletcher, an Olympic athlete that had childhood leukemia. He endured seven years of treatment (surviving relapse and a stroke) and went on to be a premier athlete. So I am attempting my usual end-run around things.
It is hard to describe this experience, but Jeff describes it as “the West watching Russian fascists dismember Ukraine while muttering the fatalist refrain of ‘nothing can be done’. We do not believe that, and we are not going to let Nico lose his mobility and fledgling independence without a fight.” I am instituting my own PT, and enrolling Nico in as many non-competitive activities as I can (as long as he still thinks it is fun). This requires that I sometimes sit with a frozen smile on my face as he struggles with activities that would normally be easy for a child his age. It requires that I clap and cheer when I want to cry, and that sometimes I just look away.
The “easy” part of chemo is not easy at all. We are coping with some of the side effects of chemo that were less obvious during frontline. We were so focused on survival that the non-life-threatening stuff was less of a concern. The boiled down message to us from clinic is: be grateful a treatment exists, it could be worse, so endure. We do not have any other choice, so I guess we will.