Many moons ago I used to direct a youth program that included a summer camp. I had a co-worker who referred to the evening meetings we'd have with the program co-directors as the "Big Fat Meeting". Well, our "Honkin'-Freakin' HUGE Meeting" took place yesterday in Boston, and the plan is in place for Vampbaby's treatment.
The good news -- well, very little. This is going to suck on many levels. First off, this might as well be some freakish disease that emerged from a recently demolished Rain Forest. No cancer in children is treated like this one is, and since so few children get it there's only a tiny, tiny handful of families who have experienced what we are about to. So, if you have any preconceived notions of what cancer treatment looks like in a 16-month old, throw it out.
Second, other than the actual treatment protocol (what is done when) there is no understood pattern for how it will go. My son has surpassed all others thus far with the success of his surgery, but that doesn't mean anything in terms of how he will respond to the intense treatment that will occupy his (and our) life for at least the next year. He could respond with similar resiliency, and whip this cancer easily without so much as a sniffle. Or, we could fight a terrible, horrible battle for many months, and still bear witness to the unthinkable. Or, we could be somewhere in between those two extremes -- but there is no way to know for sure until we are actually there.
So, the questions of scale and reality set in....How will we do this? Will one of us have to leave our jobs, or at the very least take a ton of unpaid time off? What about daycare -- is it feasible that a patient going through this kind of treatment will be well enough to be in daycare once in awhile? Will insurance cover this treatment? What other expenses will emerge, and how will we pay for them? How do we maintain a sense of routine and normal surroundings for a child that is about to enter the "Cancer Treatment X-Files" and spend the majority of his treatment time in a different city than where we live? And, of course, the biggest question:
"How the fuck can this be happening to us?"
That one rang through my head like a siren as I wandered the waiting room yesterday. I was surrounded by families, all of whom seemed resolute in their determination to fight their child's cancer. All of them, including the children, chatted and wandered about the clinic as if this was nothing more than a routine physical. Mother's who initially ran into one another while their kids were in the hospital reconnected and shared updates on their child's prognosis like soup recipes. One young boy even took ten minutes to educate me on various IV access techniques and what to do if Vampbaby's blood counts drop.
I'm sure one day we'll get to that place...But not today. Today, I don't want to go there. I don't want to be "one of those families". And yet, we are, and we must accept all of the things that come with it, good and bad, as the sum total of the experience that is our new reality. Today, we are back to the haze of shock, grief, disbelief, and fear of the unknown.