Chemoed Out

Colin is officially chemoed out. After blazing through Tuesday’s drugs, he sagged on Wednesday, and the latter half of the day through early Thursday he spent either sleeping or very green around the gills.

Despite talk of a possible discharge, Colin’s queasiness made that impossible, though we are still entertaining the idea for Friday. We welcome discharge if it serves the purpose of making Colin’s life better, but having to traipse around while he’s feeling miserable does not serve him well. As he feels better, it will be clear that it is time to go.

We had expected him to be hovering at or near neutropenia, but his ANC bounced up from 800 on Tuesday morning (the definition of neutropenia in this context is 500) to 2,200 on Thursday morning. All the same, his platelets and hemoglobin are steadily sinking, indicating the future need for transfusions.

Sporadically, Colin seems okay and is smiling and playful. However, he all too quickly sinks back into misery. We have him on a tight regimen of drugs (scheduled zofran and now frequent higher doses of benadryl; they just added reglan) to prevent nausea and vomiting. Though it hasn’t been 100% effective, it’s working well enough for us to say that we’ve seen a marked improvement from previous cycles.

Whether Colin gets discharged Friday or not, we are set to get passes for the weekend. On Sunday, we will be able to celebrate Carissa’s birthday over at Target House. Colin and Carissa have a special relationship, and he loves palling around with her. He is inspired by her, especially because they both are in wheelchairs most of the time.

Colin is encouraged by Carissa’s efforts to walk and listens to her assiduously. We also sense that she is encouraged by Colin’s improvements, which have been steady, even through chemo.

On Wednesday before his chemo for that day, he was playing drums, either using drum sticks or both hands on a box. His right arm is working much better though his hand still lags behind the left in coordination.

Even more exciting, it is possible that we are seeing the beginnings of movement on the right side of his face. I think I’ve seen a flicker on the corner of his mouth when he has smiled, though it’s not dramatic enough for me to be certain.

Everybody here is encouraged by Colin’s overall improvement. In some ways, this has little to do with his cancer or his prognosis for the treatment of it, at any rate. However, one of the benefits of being here is to see dramatic improvement.

For us, Colin’s matrix of deficits is totally normal, and it comes as a delightful surprise to see children who walk around and play normally during treatment. We realize that our experience is atypical, even here at St. Jude. Relatively few patients spend this much time in the hospital, even others on this protocol who receive all of their chemo administration (with some minor exceptions) while they are inpatient.

For those families that haven’t dealt with many treatment-related deficits, Colin’s circumstance is jarring and perhaps a bit frightening. Although the deficits came about as a result of surgery for an aggressive and unfortunately located tumor, this doesn’t necessarily correlate with his overall prognosis. In fact, other children who are currently more functional may have a disease that is more difficult to treat in the long run.

We may be enjoying a certain luxury in watching Colin improve so much during treatment, where this very positive course masks underlying concerns about the cancer itself. After all, we spend much energy focusing on matters outside of the ependymoma, most particularly the lurking endocarditis.

Whether this makes it easier for us to handle this part of treatment, it is apparent that, for some, our situation is the, “Well, at least we don’t have to deal with that” for other families. This is not a resentful observation of the reaction of thoughtless families but a bald and universal reality of dealing with intense medical experiences.

It is impossible to avoid the practice of hearing of somebody else’s intense situation and thinking it. We do it, and there is no harm in playing that role for others. The truth is that we know we can handle what we have on our plates because we simply are. Contemplating “worse” (or at least more or differently complex) scenarios does make us thankful for the devil that we know.

The hardest part is indoctrinating Aidan with our philosophy or, really, any philosophy at all. For one thing, he is an independent thinker, so he is not easily twisted or swayed without a good argument in hand. For another, he is a child himself with a child’s perspective and resilience.

The other day, he was playing Battleship with a volunteer. When I sat down, they were in the middle of the game, and she was giving him hints about the location of her ships. Within a few turns, he was doing the same. (“Maybe you should try over on the other side.”) Rather than perceiving the volunteer to be beneficently cheating, he interpreted this as a part of the game he should also participate in.

Aidan is brilliantly pure, and one of the most painful aspects of this experience is the potential of tarnishing his lens on the world. We are lucky that he is getting support here at the hospital, both from Child Life (Joanna, who has been working with him on various projects, has a particular appreciation for his sensibility) and Psych.

But it is inescapable that Aidan learns basic things about the barbarism of contemporary cancer care. When I explained that Colin wasn’t feeling well because of the medicine we were giving him to get rid of the cancer, he responded that, if it was making Colin sick, we should stop giving it to him.

Aidan is right and this is what we would do in other circumstances, but the fact is that we have to poison Colin as part of the exercise to cure him. It is a hard pill to swallow for us, but it is hard to imagine how Aidan is processing this fact.

Joanna said that Aidan was concerned about how radiation is going to taste when Colin gets it. He seemed satisfied to hear that it wouldn’t taste like anything but is invisible and that Colin will be sleeping when he gets it. Here again, the reality is that Colin may suffer a wide range of side effects, both short- and long-term, from the radiation. There may come a time when we have to explain this to Aidan if it shifts from the realm of the theoretical to the real.

Perhaps the hardest part of communicating with Aidan about Colin’s treatment is filtering out our own perceptions, anxieties, and prejudices in order to provide Aidan with clinical and digestible facts. This is one of many reasons it is easier to have someone like Joanna around. She has developed a rich lexicon to speak with children about cancer and its treatments, and she is developing a strong enough sense of Aidan to understand what he needs and how to deliver it.

Joanna also helped Colin by bringing in “trach boy,” a doll fitted with a trach. I asked for it after he started cleaning his own trach, since it seemed useful for him to be able to visualize the area. It is a great relief that Colin is getting used to having it there and, among other things, doesn’t cover the opening with his finger any more! This is obviously a self-limiting exercise but also a poor habit to get into.