Spring has finally sprung here at the Vamphouse — a refreshing change after two April snow storms and the “Great April Floods” that seems have become a staple of life in this part of the world. The last remnants of snow have vanished, and Vampboy’s snowsuit has been replaced near the door by a beach shovel, bucket and plastic rake, which he just picked up to take outside. A future landscape architect, no doubt.
Vampboy has started his week 30 chemotherapy, and the good news is that the nature of the treatment this time made it such that we could do it outpatient as opposed to staying in Chez Healing for four or five days. While the idea of spending each night in our own bed has made the experience worthwhile, the daily tribs into Boston for treatment have made for some long days. While in Chez Healing today, we had the benefit of visiting with Othergirl, who was in for her week 33 treatment, and Princess, who was in with pneumonia (but feeling better by the time we got there). This was the first time that all three were in the hospital at the same time in months, and even though our visit was only a couple of hours long it was great to watch the three interact with one another. At one point, Vampboy proudly lead the three of them (and the respective parents) around the floor in a parade, wildly waving a sparkly baton and laughing. A little “Cancer Pride Parade”.
This will be a big week, because apart from the chemotherapy treatment it’s MRI time again. While even the doctor’s don’t expect to see anything, the nastiness that is AT/RT keeps everyone on their toes and concerned as the MRI approaches. On top of that, we are far enough out from radiation therapy that Vampboy will have his final hearing test, so we can get a sense of how much hearing loss we’ll be dealing with. When interacting with him we don’t notice much, but in his speech patterns he’s clearly missing his “s” and “f”, which are higher frequency letters to pronounce. The test should give us a pretty clear indicator of what the damage will mean, and how soon he’ll need a hearing aide (we’re pretty sure one is definitely in order for his right ear at some point).
Then on Wednesday we visit “Brain Tumor Clinic”. This is a new part of our routine — a one day extravaganza starring all of the kids treated for brain tumors (past and present) as well as the team of specialists that work with them. This is the place Vampboy will go for follow-up appointments once his treatment ends, but having never been before we’re going to get a taste of it this week.
I remember when “big weeks” involved vacations, or something fun. Ah, the good old days….
Before I sign off to check that Vampboy hasn’t dug a hole in the garden, I did want to post a special thanks to the folks that came out to the fundraiser that was held this afternoon on Vampboy’s behalf. He was perky enough after his treatment that we got to stop by, and I think he was quite taken with the live music and space to run around in. Friends and total strangers came out, and we are once again amazed at people’s caring.
Update — some kind and wonderful folks out there have emailed me since last night about how they can contribute to the fundraiser. Being the recipient of such generosity is an odd experience, hence I rarely mention it here. However, to honor peoples’ wish to help out, I will say that there remains a fund that was created to support expenses related to Vampboy’s treatment. To get information on how you can donate, please email firstname.lastname@example.org with “Vampboy Fund” in the subject line.