In the mid-90s there was a short film about Dana Farber that was shown before movies at most theaters in New England. I can remember seeing it any number of times — and having it followed by the theater ushers walking up the isles with their donation cans outstretched.
Over the past two years I have thought about this film often. Every time we go into the clinic I stand for a moment at those same windows, staring at the now completed building — the same building we’ve walked through probably hundreds of times to get from Dana Farber to Chez Healing. I’d wonder what became of those children, whose names now lie hidden beneath concrete and sheet rock, but which no doubt echo through those rooms. Or what about the one construction worker who talked about the importance of people donating if they can, saying to his fellow workers, “Maybe one day they won’t need to build these buildings any more”?
If only – for today they are constructing another building right next door. When VB started treatment they were just beginning to prepare the lot. As treatment drew to a close we watched them dig deep into the earth to lay the foundation and put in a parking garage 7 levels-deep. Then last week, on the day we got the bad MRI news, we watched the scaffolding rising into the sky. As VB looked on in fascination, I steeled away to the craft table in the clinic waiting room, grabbed paper, marker and tape, and called out for the workers to bear witness.
On those beams are the names of both children and adults who have waged this battle — and VB’s name is there as well. When I first saw it upon returning to clinic for yesterday’s procedure, I wondered if perhaps some of his energy would live there — offering comfort to those will walk those hallways one day. I then wondered if we would one day walk there — back “in a treatment way”.
For now, it looks as though we may not. Yesterday’s CSF test was clear, and the treatment team is leaning towards this recent panic NOT being relapse, but instead an after-effect of radiation therapy known as demyelination. Now, before you go Googling it — you will find little information on demyelination relative to radiation therapy, but lots related to other neurological disorders. So rather than digging empty holes, let me just say it’s a far better outcome than relapse and leave it at that. This is not a definite answer — but there are more elements to the story that send the team in this direction than “Big Bad C”. In the coming weeks VB will have a PET scan and another MRI to track things closely, with more frequent MRI’s for the foreseeable future to ensure that this highly educated guess is actually the right one. At the same time, we will endeavor to learn more about this potential new friend in my son’s head, and add it to the list of “Late Effect Buddies” we know come with survivorship.
Tonight VB asked VM to read him Curious George, and talked happily about the Valentine cards he received at school — none the wiser to the scare that has come and hopefully gone. His birthday party will go on as planned in a week — which is good, since hand-made invitations by VM have already gone out. And VM and I will breathe, pick up our tools, and go back to the re-construction of our lives.
Thanks to all of you for once again holding us up this week.