I woke early, showered and crept out of Ky’s hospital room before 8 a.m. this morning. I’ve gotten used to navigating my way away from the hospital toward 295, but today I went beyond the usual exit that drops me in South Portland, a mecca that covers most of Ky’s fickle appetite.
At 10:37, after dealing with ridiculous traffic and a closed exit, I pulled into the parking garage at Dana Farber. I made my way to the Jimmy Fund Clinic, the only parent in the place without a child by my side. I looked around and recognized myself, my actions and reactions, in the faces around me. One mama did everything short of standing on her head to try to cajole even the smallest smile out of her despondent son. She colored a hat for him, talked about their upcoming weekend plans and all the fun that awaited them…after this round of chemo. Another mama got a snack out for her son, but held a firm limit that he couldn’t eat her Powerbar. A papa carried his young daughter into the clinic and tried to soothe her as she sobbed when the receptionist came around from behind a desk, just to put an identification band on her leg. I closed my eyes and to my right, I could hear a skirmish over who was the boss of the game, who would set the rules, who was in charge. With closed eyes, I couldn’t see bald heads or faces swollen from steroids, I could just hear the struggle over who would be king of the metaphorical hill. I relished the normalcy of that. I kept my eyes closed until my name was called.
I was there to meet with Dr. Margossian, the pediatric hematologist-oncologist who our care will transfer to when Ky has his bone marrow transplant. The point was to provide us with the information about Ky’s transplant without his ears hearing – and worrying – about all the information we would know to properly prepare us. As you might imagine, ridding a person’s body entirely of his own bone marrow while simultaneously preparing it to accept new marrow is a pretty involved process, which is neither easy, nor for the faint of heart. Part horrifying, part fascinating, part science, part miracle. Though overwhelmed, I didn’t cry – there was just too much information floating in the air and not enough space in the conference room to hold my worry, my fears, and my hope all at the same time. I took notes, asked the questions I was ready to hear the answers to, and listened. Bill was at the hospital with Ky and was counting on me to come back with information, so I would.
Since May, I’ve returned often to a line from a Jane Kenyon poem “God does not leave us comfortless, so let evening come.” Today was no exception. Amid all the talk of chemo and conditioning and day zero and risks, there was a piece of the puzzle we’ve been waiting on. A donor was contacted on Ky’s behalf. Within 24 hours of that contact, the proposed donor submitted a blood sample. That sample was sent to the lab and analyzed for the layers of compatibility with Ky’s body. On all the levels they need to match, they do. If the donor centers can coordinate schedules and timing, we believe there is a 30 year old man in the Netherlands who holds a very important key to Ky’s future. Those are the only details we know: 30 years old, male, from the Netherlands. We don’t know if he was born and raised there or if he’s an expatriate. We don’t know why he’s in the registry in the first place – is he a generous man who just wants to help or did cancer move into his life in some way as a most unwelcome guest too? There’s a big part of me who wants to know what he’s like. I think he must be kind. They’re genetically similar, so I wonder if Ky’s donor is curious in the way he is? Does he look at the stars and wonder what else is out there? Is he empathetic to the point that it sometimes hurts? Might they like the same breakfast cereal? Does he want to be a papa as badly as Ky does? At the intersection of nature, nurture, and bone marrow…I wonder how these two would line up.
The reality is, we may never know anything besides the facts that we already know: 30 years old, male, the Netherlands. I was told that every country has different restrictions on what they allow for contact between donors and families. Some allow however much contact both parties consent to, others only a letter with no identifying information, others no contact at all. I don’t know how that will sort out for us, but I know there are many people who would love to thank this seemingly magical human. I can’t even think of his existence right now without getting teary. Perhaps he will luck out and it’ll be only letters exchanged – I can’t imagine the weepy mess I’d be if I met him.
I left Boston after a 90 plus minute meeting with Dr. Margossian, put my iPod on shuffle, and tested the limits of what my ears and speakers could safely handle, even with a pounding headache. There was some thing to be said for feeling the vibration of the music. I liked being shaken to my core with musical vibrations, rather than words. It was refreshing.
I got back to Maine Med and answered Ky, Lou, and Bill’s questions. Ky feels very positively about the donor being from the Netherlands. Evidently the Minecraft players from that area of the world are pretty amazing, so he’s hoping this new marrow will further his skills. I’m sure, post-transplant, we’ll have plenty of time to figure that out.
I’ve become pretty obsessed lately with words from other languages that are untranslatable. It started with my discovery of saudade a couple of months ago. Tonight I learned a word from the Dutch language that has no translation: gezellig. It’s a word, it seems, that “embodies their warm, welcoming culture”. Gezellig is an adjective that “describes much more than just a coziness, a positive warm emotion or feeling, rather than just something physical…[it] connotes time spent with loved ones, togetherness.” It’s derived from the word gezel, which means companion or friend. It’s a feeling, not simply a word. After quite a lot of reading tonight, it seems that gezellig speaks to the heart of Dutch culture.
Tonight as Ky and I looked out at the stars, we wondered about the magical man in the Netherlands. That he’s willing to try to help, that he’s willing to do this for Ky…that’s the closest I’ll ever come to translating gezellig.