Delayed Intensification and Neurotoxicity
Every phase of treatment is different, it’s own challenges. Different drugs, at a different tempo; a different schedule, sometimes more in-patient, sometimes more out-patient. But it’s also cumulative – each round has been harder than the last because Wes is weaker, and it’s hard to ignore this anymore.
The current phase, Delayed Intensification, lasts for 56 days, and we’re currently at day 21. From a calendar view, it’s by far the most complicated schedule we’ve had yet, and requiring the most clinic visits. Roughly 3 times a week Wes has to be at the oncology clinic for something, and these visits are effectively all day. In between is constant medications and tending to his recovery and well-being. We try to get out of the house as much as possible, but it’s getting harder.
The drug regimen he’s getting right now is a greatest hits of chemo, plus steroids and everything else needed to try to counter some of their worst side-effects. He’s received six more shots of Erwinia, an essential, scarce and outrageously expensive drug that he’s had bad reactions to in the past, and which leaves him battered for days each time. Three rounds of vincristine, which has a laundry list of side-effects, many of which he’s showing. One intrathecal (spinal) injection of methotrexate – the drug that was so rough during Interim Maintenance – and two more to go. Doxorubicin, cyclophosphamide, cytarabine, thioguanine, plus the steroid dexamathasone, the antibiotic bactrim, zofran for nausea, zantac for heartburn, benadryl to counter other drugs side effects, oxy for pain, benzodiazepine for anxiety and nausea, and miralax and senna for constipation. There’s probably more I’m forgetting.
A week or so into this phase we both noticed his walking took an obvious turn for the worse – he’s understandably weak and feeling shitty from all of the above, but beyond that he’s lost – losing – coordination in his legs. He’s not only walking shorter distances, leaving him tired more easily, but his walking has become visibly awkward – if I didn’t know him and his age I’d assume he’d only recently begun walking and was still getting the hang of it, but instead it’s the opposite. The culprit is likely vincristine neurotoxicity and neuropathy, combined with general weakness from the overall drug regimen.
This past Sunday – Mother’s Day – he went from awkward but persistent walking, to staggering around like he was drunk, running into things – it was as bad, and dangerous for him, as being on strong painkillers in the past, but we didn’t have to work hard to keep him down as he was also uncharacteristically tired. We were very worried, hovering over him – frankly, I thought he might be having a stroke or some other serious neurological incident. His pupils were big, but not fixed, and he didn’t slur his speech, but he spent most of the day sleeping, with small bouts of hunger waking him up for an hour here and there.
We had several consultations with our on-call oncology team. Being Sunday, the only way to get him checked out would be a trip to the ER, which poses its own health and psychological risks. His immune system is extremely weak right now, and the ER on a weekend is a hotbed of every possible bug so there’s a distinct possibility just walking through there of him landing a virus that could be devastating to him right now. The environment is also chaotic, uncomfortable, and the medical staff are not specialists so the type and quality of care isn’t as tuned to his needs; port accesses have been traumatic, and because of the risk of cross-infection the staff usually come and go in face masks and gloves, which can be terrifying to a kid. Our on-call team advised we could monitor him and call them back if anything took a turn for the worst, but otherwise to plan to come in to the oncology clinic on Monday morning for a checkup. By now we’re as sensitive to his condition and subtle changes as anyone could be, so we resigned to wait for the morning so we could see his regular team, in a less risky environment.
Monday morning we headed in after a quick call with scheduling. He was mostly quiet for the ride, but once we turned onto the main road leading to the clinic he started to panic, begging for “no owies” and pleading to go home. We know we’re doing what’s best for him, but no matter how much we reassure him, how much we try to explain, it doesn’t make it any easier.
Vitals and labs turned up nothing – in fact his numbers were better than we expected. We had both quietly hoped this was just fatigue from low red blood cells, hemoglobin, or neutrophils, but all were respectable – whereas we had expected his numbers had crashed since last visit on Wednesday, they were actually a little better. This explained nothing, though the labs alone don’t touch on everything that’s conspiring against him.
Our doctor was confident that his symptoms are within the realm of normalcy given his current treatment regime. We’ve both read many stories that attributed similar symptoms to the vincristine, the steroids, and the rest of the barrage he’s receiving, so this wasn’t unexpected, but she ordered a CT scan to rule out clots in his head and other scary but rare possibilities. Nothing showed.
We went home six hours later, exhausted and spent, knowing little more than before. He’s scheduled to begin occupational and physical therapy this week to begin to address the neuropathy and walking issues that are developing, and in the meantime we’re focused on the terrible constipation that he’s dealing with, and which itself may be causing some or much of his exhaustion and discomfort. Tomorrow is another day.
