A qualified success
Friday we both went to King of Prussia with Wesley for an important discussion with the team about his Peg reactions and the path ahead now, as well as his regular sedated LP (lumbar puncture, aka spinal tap) chemo.
As we prepped for sedation the NP spilled a big surprise: Wesley had been allocated some of the very meager supply of Erwinia. And he’d be starting that same day!
This meant so many things to us. First and foremost, Wes can continue treatment more or less as originally conceived – that what had begun to look like a huge hurdle in his recovery was now reduced to a mere speed bump. Confusion and anger with a system that could charge hundreds of thousands of dollars for a few ounces of a vital drug and still not have enough for all the kids in need was giving way to momentary relief that we may have dodged another bullet. Certainly, disbelief was still dominant – Wes hit a lottery no one ever wants to win when he developed leukemia, and he hit it again getting access to Erwinia just when he needed it.
The plan for the day took shape. Wes would be accessed – his port would be connected to a drip machine – and then sedated as usual with a three drug cocktail. During sedation they draw some cerebrospinal fluid, and then give him methotrexate, a relatively routine procedure he’d already been through several times, though it was my first time seeing it in person. He received vincristine once the methotrexate had run for a while, as we were waiting the two hours or so for him to wake up out of his sedation.
When he finally awoke the first word out of his mouth was “noodle”; he hadn’t been able to eat in over 12 hours so we were of course ready on hand with snacks. When he was finally awake enough we moved out of the sedation room and into the day clinic, although at that point he was still drunk enough to be unable to walk or even sit up unattended.
As the sedatives wore off and he devoured some snacks and lots of water and milk, the team prepped the Erwinia – it has a narrow working window, so timing was important not to waste such a valuable drug. The nurse brought out the dose in a large, intramuscular needle that would have to be jabbed into his thigh. We declined any numbing cream – it tends to just waste time allowing his anxiety to build, while the actual pain of a quick shot is something he’s sadly becoming accustomed to. When everything was ready we held him close and he got his first dose of a drug we had even that morning begun to doubt whether he’d ever see.
Seconds later he was back on his feet and back to his cars, trucks, and Barbies. For an hour he was half-baked and tearing around the play area he’s become so familiar with and eventually Stephanie began to notice some unusual color join his normal pallor; it was subtle, but she knows every square inch, every freckle and blemish, and long before the doctors, nurses or I could see it she had spotted hives. We monitored it for a bit, but eventually the decision was to treat him for a mild allergic reaction with another dose of Benadryl.
After the antihistamine the hives never got worse, and he never developed any other symptoms. It’s clear the reaction was from the Erwinia, but the intensity wasn’t even comparable to what he experienced on even a tiny, fractional dose of Peg.
The consensus for now is that, thankfully, he’s able to continue with Erwinia, but he’ll have to be pre-medicated with antihistamine and his recovery each time – three days a week – will have to be closely monitored. In the world of leukemia treatment, this is a success.
