A Burning Shell

For months now, Wes has been suffering from a difficult series of skin conditions that have at times variously covered his hands, arms, groin, legs, and torso in inflamed, dry, itchy, and sometimes painful patches.

And so it is that we added dermatologist to the long list of specialists Wes has to see while hearing few real answers – these are side effects to the toxic cocktail of drugs he takes at home and in clinic, and the effects can vary widely child to child. The most direct way to help the side effects would be to quit treatment for leukemia, but we’re not doing that. Instead, like with so many other things, we are limited to treating the symptoms, keeping him as comfortable as possible for as long as possible while treatment winds down.

Even though his treatment has been scaled down significantly as he approaches the end in February, there’s a cumulative aspect to some of the worst side effects, so until it’s all over they may not get much better. The quarterly vincristine and methotrexate spinal cocktail hit him hard enough this time that we’ve had to put him back in his leg braces, while the slurring of his speech amplified as well. The skin conditions he’s been fighting this year seem much the same – it’s just not going to go away until he’s completely done with chemo.

Last night around midnight I was just nodding off downstairs when I heard Wes. I ran up to our room – we share a bed most nights – and he was half naked, standing in the dark, sobbing uncontrollably in a panic. I quickly realized he was on fire – his skin was inflamed all over, he didn’t want to be touched, couldn’t even point to where it hurts it was so pervasive. I didn’t have anything medicated in our room so I grabbed the first baby lotion I could find and tried to cool him down with it but it only got worse. Within seconds everyone was awake. Mom came in to help, and Ruth came in to see what was wrong. As we’ve done throughout treatment, we dealt with yet another crisis as a family. We tried cold rags and various medicated creams and the ever-useful Benadryl until he was calm enough to get back into bed. He passed out eventually and rested well enough, as did Ruth, but his mom and I are wrecked as usual.

What do you do with a kid whose skin is on fire in the middle of the night? There’s no playbook for this stuff. A midnight trip to the ER is scary and may do more harm than good. Even a call to oncology would likely come up with nothing we weren’t already doing. There’s rarely an easy answer – it’s a side effect; we need to make sure its not dangerous, not requiring immediate interventions, and then we keep him comfortable, treat the symptoms, help him through it. Just last week we were worried about relapse, and thankfully ruled that out, so at least we know it’s not that.

This morning Wes is his usual self. He’s got such a tolerance for pain, so capable of a stoicism beyond his age. He’s uncomfortable and it still hurts but it’s not enough to bother him anymore. He’s devoured two different kinds of Cheerios and is happier than the rest of us after that rough night. So we carry on.