Hey — remember me? I think I used to blog here or something. Let’s play catch-up.
The Pain that I’m Used To
The MICKEY button issue seems to be resolved, after a few days of extreme pain (“Mickey hurt my tummy” became the big catch phrase) and a fever send VB back into the hospital, where he remained for several days. This time, however, the various teams and departments followed our rather angry feedback from the previous visit — which showed in their clear communication amongst themselves and their overly-routine check-ins on Vampboy. In the end, the combination of VB having a weak immune system and the rather unpleasant procedure that but the button back in place conspired to bring us back to the “frequent flyer” level at Chez Healing.
On and On
I have come to the conclusion that the last 4 cycles of this treatment regimen are cancer’s last-ditch effort to mess with our heads. Between this past cycle, which saw way too much time in the hospital, and the fact that we’re delayed from starting the next cycle until the end of this week (if we’re lucky) life returned to a level of testing both our patience and our mental and emotional strength. Granted, Vampboy looks great and is in equally good spirits, but after so long it doesn’t take much to wear one down.
9 to 5
Through this whole ordeal I’ve continued to work. Being a working parent is always hard, but to be one while your child is sick and your spouse has given up their job to care for him, brings a special level of challenge. When I returned to work after Vamboy’s surgery and diagnosis, one of the first things I did was remove photos of VB from my office. There was no way I’d be able to concentrate otherwise. I did keep one — his school photo, taken a few months before he was diagnosed. It’s not in a place I can see directly while sitting at my computer, so I decided to leave it. The longest I’ve been able to look at it is 10 seconds (and yes, I did time myself once).
Days packed with meetings are the easiest, as other people and active conversation make for good distraction. However, days spent in front of the computer, whether writing grants, answering email, or completing reports, are the hardest to stay focused for. Summer usually brings more days like that, and this one is no exception. I wonder if these days will get easier when we return to a more “normal” life.
Back to the Start
Vampmommy met with VB’s daycare to arrange for — who would have believed – his return to school sometime in November. Next week we’ll meet with VB’s doctors (after the next all-important MRI) to talk about what the end actually looks like: how long do the ports stay in, and when can we get rid of this DAMN MICKEY BUTTON ?!?! Dare I think that the end of this dark time may be near?
That should feed your need for knowledge — I promise I’ll be back sooner!