Sometimes I still get angry, like we’ve been dealt on purpose an unfair hand. I want to blame someone or something, as if to point them out as being the culprit. Then I can assign the task to whoever or whatever as theirs to fix this mistake. Sometimes I’ve thought about writing a letter-
“Dear Santa, elves, et al;
There must have been some confusion. Our daughter asked for a Thomas the Train set for Christmas but got a fucking BRAIN TUMOR instead. If you cannot issue us a full refund, then please let us exchange it for a sprained ankle”.
I doubt he’d read it now, he’s probably hibernating. My wife and I have spent so much of our time and energy on our daughter’s health that just the other day we were surprised that this ordeal has really only been three months. Three months? During the throes of chemotherapy and associated post chemo infections, we find ourselves in the hospital for about three weeks each month. I sleep in a hospital bed alongside Sophie more than my own bed. I know the walls and the layout of DC Children’s hematology/oncology ward better than I know my own room. My daughter practically lives there, and in between treatments takes a mini vacation… to her house, our house. The one she is supposed to be growing up in. My wife and I have immersed ourselves in peer reviewed medical literature from places like National Institutes of Health, American Cancer Society, scientific publications from renowned cancer centers and hospitals. I’m learning another language, that of the oncology world. Words like “apoptosis” and “targeted immunotherapy” and “angiogenesis”, words that I never even knew existed. Yet despite our understanding of the chemotherapeutic effect of the PLATINUM metal based drugs going into her body it’s hard not to think we have consented to turn our 2 year old’s body into a god damn superfund site. The energy and time we spend to heal by diet, diet restrictions, supplements, and kicking nurses out of the room at 2am so she can sleep is enormous.
Yet despite all this, I’ve been able to bond with my little girl in a way that only something like this could bring about. As a working parent with a full time job, I’m fortunate enough to be able to work from home when necessary. I see my daughter all the time, I see her a lot. I love seeing her beautiful blue eyes look up at me and smile. I know what her expressions mean, even the crooked ones where she still cannot fully control both sides of her face. I know her vocabulary, and like any parent, believe she speaks perfectly! (When she says “daddy I chocky cup ache yum yum” and no one gets it, they are the idiot! Clearly she just said “father I would prefer to eat a chocolate cupcake, thank you”). I am acutely aware of the shape of her head as I look at it all the time (is there really a tumor inside? Where?). I know the shape of the scar from her brain surgery and I could draw it out if asked. I know what her frail body can and cannot do now. And at the end of the day when I go and pick her up and say “give daddy a hug” my heart soars when she actually wraps her arms around me and lays her bald little head on my chest, and leaves it there. As if to say “you asked for this but this is where I want to be too”.
I hope that I can have a bond with my daughter like this for the rest of MY life, and not the other way around. And I pray every day that though we cannot always see it, what we are putting her through is just one more day closer to that reality.