The allure of the vampire, as with many supernatural, mythical beasts, is it’s inherent ability to cheat death. While the cost of cheating death has proven a high price in folklore and fiction, we are still drawn to the existential question: will I ever reach a point when I’m “ready to die”? If I could, would I choose immortality for myself, knowing that I will watch as those I love do not? What if we could all live forever — wouldn’t that be great? Could I adjust to blood drinking from a vegetarian diet?
From these death-defying archetypes to the modern science of cryogenics (or, as some would say, “pseudo-science”), all of us must ponder our mortality at some point. Of course, most try everything they can to avoid the overwhelming truth that their very existence will one day end. We take solace in our adolescent indestructibility, or our religious faith that says death is a non-issue, with another form of life awaiting all of us on the other side.
I have been reading blogs of late written by people with cancer. As adults with the disease, they process for themselves what the inevitable reality is for their circumstance. While some fight long and hard for ultimate victory without exception, others wage the war with the understanding that, at some point, they will lose. The luxury of denying one’s own mortality is lost to them, and the game of “if you had only one year to live…” isn’t just a question to open an evening of entertaining philosophical discussion.
As parents, we battle to live in the same denial about our children. Certainly, the reality is that most parents will never face the loss of a child. But many with their own children have commented to me that they take an extra moment to love and hug their child, knowing that I am sharing the experience of a parent who may not fit in the “most parent category”.
All I want is for this to all end. I want the last dose of chemo to enter into Vampboy, and then I want us to walk away from this chapter, as closing credits role to a rousing Oscar-worthy song. I want to stop filling these entries with the lastest in “doesn’t this suck news” and turn my attention to the funny thing VB did on the way to school, or my take on the current Lindsay Lohan scandal (poor girl).
Yet, it is not that easy. For the medical team and researchers working on VB’s case, we are an anomaly — parents who are interested in what the research studies are saying, whether good or bad. At our quarterly “team meeting” with them this week, the conversation was mixed. While we revel in the latest clean MRI scan, and the sense that the follow-up scan scheduled after his last treatment cycle will also be good, the future is uncertain. There are 18 patients in the research study VB is a part of. Of the 18, 10 have completed treatment. Of the 10, 4 0r 5 have had their cancer return. With no “plan b” treatment options available, the fate of those 4 or 5 are certain. The rest? Well, very few of them are far enough away from treatment to say they are “out of the woods”, but those that are will still have years and months of waiting and wonders, as the first long-term survivors of this disease.
Success means very little when dealing with a cancer such as this. Granted, as someone who looks at “risk” and “protective” factors, it appears to me that VB has a lot going for him other kids haven’t: his tumor was small, the surgery to take it out left nothing visible behind, and while on treatment he’s never once had a scan show any sign of re-growth. Yet, the medical establishment doesn’t rest on that. They’ve seen equally good scenarios turn out bad — and they’ve seen worse scenarios turn out better. So, they don’t give any room for optimism, with the fear I’m sure that they’ll have parents who feal mislead should things not turn out right. My requests for a glimpse of hypothetical prognosis, based on the context of VB’s history to date, go unanswered.
What is known is that, with 2 exceptions, this cancer returns (if its going to) within the first two years after treatment. That’s why VB will have MRI’s every 3 months for year one, and then every 6 months for year two. Other than that, life can return to normal — but how realistic is that?
To put this into brutal perspective….VB’s first MRI after 3 months of no treatment will be in January. If that MRI were to come back with bad news, we may only have months — if that.
So, we grapple once again with the fact we no longer have the luxury of other parents — who plan and envision their little toddler heading off to school, or joining an anarchist artist colony. We don’t have time for that. If there are things we want VB to experience and do in this world, we need to be prepared to do them soon — with the hope that we can check off that list and create a new one as he defies the odds and lives to be 130. And, we feel the additional weight of understanding that comes with the fact that, even if daily treatments and trips to Boston end, the war does not.
None of us really know what tomorrow brings — or if there will be one for us or our loved ones. So we fake it — but what if you couldn’t?