Interim maintenance begins (eventually)
Today officially marks the end of Consolidation in Wesley’s treatment plan, which began when he was officially declared in remission at the beginning of December.
The past couple of months haven’t been easy on us, but the hardships have reinforced our collective commitment to each other and to healing this beautiful kid. I had my first panic attack and then subsequently started up therapy and took a long-term leave of absence from work. Stephanie isn’t getting any less pregnant, but she’s still giving Wes her undivided attention, setting a very high bar for the rest of us. Wes has lost most of his hair, and then grew back some of it; he had a horrible reaction to PEG, another slightly less terrible reaction to PEG, and then more reactions to Erwinia which thankfully can be managed. Erwinia shots every other day have left little room to recover his energy before the next one, so he’s been medicated nearly every day in one way or another, wreaking havoc with his sleep, his appetite, and his mood, which naturally affects the rest of us.
Interim Maintenance begins as early as Friday, though based on his ANC numbers today it’s very unlikely he’ll be ready before next week – he needs to hit 750, and today he was at 20. These numbers seem worrisome, but the truth is his neutrophil counts are up and down a lot throughout treatment – he has been down close to zero and, as recently as a couple weeks ago, up over 2000 – and there are many causes and interrelated factors that we can’t control, only mitigate. With ANC this low he’s going to be less capable of fighting off infections and bugs, so we’ve got to keep him largely locked down until they come back up – which they will – and aside from the risk of him actually getting sick, the main downside is just the delays that stack up. Without delays this next phase, Interim Maintenance, will last 56 days – four cycles of 14 days each, during which he’ll be admitted for (at least) four days of chemotherapy and then discharged to relax and recover at home until the end of the 14 days. Rinse and repeat a few times and then, eventually, he moves into Delayed Intensification – also roughly two months, and likely the hardest period on him and us, and then when that’s done he’ll move into two years of low-intensity Long Term Maintenance, and then seven more years of monitoring and… at that point a bar mitzvah and then he’s off to med school.
The truth is that a delay here and there is expected and not a huge problem for his prognosis, and he’s done pretty well to stay on track so far – not perfect, but better than many, and certainly not worse than average. But we’ve got other things going on, like a baby arriving sometime later in March, right in the midst of Interim Maintenance. The baby is going to be born at home, an hour or two from the hospital in Philly where Wes will be in-patient, so our best hopes for a home birth with all of us together is for the baby to come during one of the 10 day stretches where Wes is home. Of course nothing is likely to go to plan, but we’ve got friends and family lined up to help with transportation, caretaking, etc. One way or another, we’re having a baby girl, an event I can’t help but feel will add more essential life energy to our family just when we need it.
