I have written endlessly about our struggles with LPs. We thought we found what works best for him, an alternative to the dreaded OR. But honestly the last couple of LPs have been increasingly more difficult. The medication used for sedation in clinic (Versed) just has not worked as well. But what we all seemed to forget on this visit -- in the past all hell broke loose whenever Nico got Versed with any other medication. And the IVIG infusion requires a big dose of Benadryl beforehand.
For Nico, Benadryl and Versed do not mix. We tried this before, but it was almost a year ago. Is this the part where I list all the insanity that happened? I am pretty sure we all cried at some point. On the way home, stuck in rush hour while Nico just screamed, there was a quiet moment in which Nico announced, “Sad things happen in the hospital.” I am so sorry, Nico.
Needless to say, the LP was unsuccessful. Basically we just loaded him with Versed, which upset him so badly he vomited and peed all over both of us. And if that was not traumatic enough, he then got stuck in the back a couple of times with a spinal needle. We get to try all over again next month in the OR, which means dealing with low blood sugar and anesthesiologists again.
Nico’s counts today were very close to the goal range. The other “good” thing is that we discovered Nico’s chemo doses were not as high as we believed. I have written about how the doses are titrated based on a combination of height/weight and counts. It ends up that the doctors do not recalculate height/weight at the same intervals and subsequently Nico’s doses had not reflected a recent growth spurt. Instead of being on 150% of MTX and 175% of 6MP, he was actually about 110% of MTX and 140% of 6MP. The difference in these numbers is significant to parents who think their child is no longer responding appropriately to chemo. My head might have exploded actually, but after recalculating months and months of past doses myself, I found that ultimately the doses he was taking would have basically been the same, and were just reported differently.
Maintenance therapy sucks. We have been doing this for so long. So many parts of our life have resumed as if our child is not being systematically poisoned everyday. Most of the time, in almost every way, it is easier than front line. But some days, like today, are unpleasant reminders of how this (now 32-month long) nonstop battery of chemotherapy, steroids, anesthesia, poking and prodding is taking a toll on our (not-yet-five-year-old) boy and our family. Some days, like today, we just want to scream enough is enough, even when we know we have many more months of this treatment to go and we will do nothing to stop it. Some days, we just need to erupt on this blog because that is the closest thing to catharsis that we are going to get at this point.