It’s Friday night. I have Vampboy in my arms, and in the dim glow of the christmas tree lights we are slowly dancing, as Ella Fitzgerald sings Cole Porter from the stereo.
Do I love you, do I?
Doesn’t one and one make two?
Vampmommy is sitting in the kitchen, tears in her eyes as she prepares the next day’s round of medicine. I can hear her say between soft sobs, “I want to make sure people understand.”
“I know,” I say, as I take Vampboy for another spin around the living room. He giggles, and snuggles closer to me.
Do I love you, do I?
Does July need a sky of blue?
It has been a long day for Vampmommy and boy — a routine visit to the hospital for platelets, but 19 weeks into treatment we are all a little tired and worn. That’s part of it, certainly. But, then there’s the study.
Would I miss you, would I?
Should you ever should go away?
The Others are considering radiation treatment for Othergirl, who at almost three years old is a far better candidate for the procedure that Vampboy. In making the decision, they have contact specialists at St. Jude’s for consultation. They forward to us in an email the report that was authored at St. Jude’s regarding treatment for this type of cancer (which, now that we’re deep into this I will tell you is called AT/RT) in children under the age of three, which both of us read over earlier in the evening. The words hang in the air like thick smoke, burning our eyes and lungs…
“Prognosis for infants and children younger than three years…remains dismal.”
“…recurrance…similar to other reports of brief progression-free intervals averaging 5 months…”
Sure, we understand in our heads that none of the kids in this study were treated with the same protocol we are using now — and the data to suggest that this protocol does work exists to a point. But still, words like “death” and “mortality” are still part of the common vernacular when describing patients with this cancer.
Or, perhaps our current mood comes from the phone call during dinner, when Death rang and asked for a seat at the table.
If the sun should desert the day,
What would life be?
We owe Vampboy’s quick diagnosis to “One”. One was diagnosed by the same oncologist with AT/RT one month before Vampboy — given the disease’s rarity, this is not a common occurance. However, the recent experience made it easier to catch a disease that is often mis-diagnosed, which meant that Vampboy was able to start the treatment as quickly as is suggested. At the time, One was a 15-month old girl. We’ve never met her nor her family, as they received treatment outside of Boston for a variety of reasons, but we always felt that “we’re in the same boat” connection, and thought of them as much as we do Othergirl and Princess (a beautiful one-year old who was diagnosed a few months ago, although I don’t think I’ve ever mentioned her here).
The phone call was from a local cancer support network, and after chatting for some time they were able to tell us that One had died back in late August or September — the result of a side effect of one of the chemo drugs that is part of the protocol. A memorial walk was held in her name in October. We had no idea.
Will I worship you forever?
Isn’t Heaven forever more?
Clean MRI scans, a son who looks great and laughs as I spin him again around the room, all conspire to help us forget the danger we are in, and what we still stand to lose. In the tired of another day at battle, we are reminded painfully that all is not well. Equal with reasons to be hopeful are reasons to contemplate the worst. I’m sure that the impossible love I have for my son is comperable to One’s parents — yet that love, and the prayers of their community, in the end did not prevent darkness overtaking.
I hold him close to me, and feel his soft cheek against mine. My grip is a little tighter than usual — perhaps if I hold him close enough, my energy and our flitting about will keep the worst away. I need to remember this forever, I think, because I may not have more chances like this.
The dancing winds down, and Vampboy points to the kitchen, eager to join Vampmommy in the nightly routine. As a family, we settle down at the table, mixing medications, sharing giggles, and trying to remain afloat for one more second.
We want you to understand.
Do I love you, do I?
Oh, my dear,
it’s so easy to see,
Don’t you know I do?
Don’t I show you I do,
Just as you love me?