A fortnight ago we were enjoying Christmas Day as a family at home with my parents, the kids all having fun with their new presents.
A week ago we were enjoying New Year’s Day at Alison’s parents along with her sister’s family, all having fun and playing games together.
Today we are stuck in the cubby-hole that is the parent’s room in Room 1, T11 North at University College Hospital London, with Adam secured in the adjoining lead-lined room whilst the amount of radiation he gives off subsides to a level at which he can be safely re-introduced into society. If it sounds like a prison sentence then that’s because it is. Despite having a laptop, PS3, PS2, Nintendo Wii, Nintendo DS, DVDs, books, paints, crayons, and games aplenty Adam is still denied his freedom. There are times when his confinement to the 12” square room starts to get to him; “What can I do?” he moans “I don’t know what to do.” He resorts to climbing along with window ledge or balancing precariously on the legs of the large metal shields that adorn his bedside, placed there to afford protection to carers and nurses.
This is second administration of I131 MIBG therapy that Adam has undergone. Having kept a pretty much daily diary during our last visit I will spare you all the details this time round. The only major change is our accommodation outside of UCH. Last time we rented a flat privately so that we could prepare all of Adam’s meals and try as best we could to maintain his daily routine. Since then Paul’s House, a CLIC Sargent Home from Home has opened literally five minutes walk from the hospital. I say house; it is actually three adjacent 4-story houses in a terrace, knocked through in various places to form a very impressive, well thought out, and extremely comfortable ‘home from home’.
Yesterday Adam was taken down to the fifth floor for his post-administration scan. As any parent will tell you these are horrible times. When you get to see in real-time the disease appearing before your very eyes on the lab technician’s monitor. I used to look away when Adam was scanned the first few times, but now I do sit and stare at the screens for the duration.
It’s a fact that post-MIBG therapy scans tend to show up more disease than diagnostic scans. The radioactive agent is different (131 versus 123) and the therapeutic dose is obviously a lot higher. We haven’t received the official report back yet, but there was clearly extensive avid uptake in all the same areas as before. I am not expert enough to read anything more into what I saw, or to infer what exactly that means. I am guessing the first dose had little or no effect. That would be par for the course with the way that Adam has responded (or rather failed to respond) to treatment thus far.
It doesn’t get any easier that’s for sure. What I wouldn’t give to be moaning about having to go back to work after the Christmas and New Year holidays, or about having to get up early to get the kids off to school. What I wouldn’t give to have my old life back, but of course that’s gone now and never coming back. This is what we’ve been dealt and we just have to get on with it as best we can. Beyond that all we can do is hope.