many of you who know me know that i have issues with hair. in the third grade i had to write a personal essay: what was my favorite color, who was i named after, what did i like to eat. i don't remember my answers to any of the questions, except to this one: What is your favorite thing about the way you look? my answer, of course, was: MY HAIR. so for a very long time, a very large part of my identity has been consumed, by my hair.
and since monday, i have watched as my dear sweet child's hair has fallen out in chunks on his pillow, on our couch, on the fronts of everyone's shirts, on the floors, and in the bathtub. yesterday we attempted to shower toby, after wrapping his torso in saran wrap and covering all his incisions and openings with plastic. this "shower" took place on a chair in the bathtub, with a trickle of water flowing and 4 hands required to adjust and soap and rinse and readjust. this shower was not relaxing or regenerative in any way. and this shower left me with handfuls of toby's hair slipping through my fingers and collecting around his feet near the drain.
i know hair is one of the least important issues right now. i also know that my vision of my child changed this week from healthy, happy toddler to fragile and sick. i look at him and realize, not for the first time, what a long road we have in front of us, what an incredible human being he is, how funny and smart and sweet, how engaging he is with others, how loving to all of us, even in the midst of the horrors he must suffer. i look at toby and decide that uncle greg will buzz what remains of toby's hair, so that it won't itch, it won't prickle and it won't keep making me cry.
we just returned from mskcc, where we found that toby's white blood cells are at 11 and his platelets at 79. in light of this the docs have decided to start our second round of chemo tomorrow, choosing not to wait until day 21. this aggressive approach is what mskcc is known for, and while i embrace it (and the onslaught of poisons onto the tumor), i also recognize that toby has felt good for 3 days now and it breaks my heart to know that tomorrow he will start to feel bad again.
yesterday we actually spent 2 hours at the brooklyn botanical garden with uncle greg. bbg is one of toby's favorite places in the world and we thrilled to see him pushing his stroller through the herb garden paths, pretending to be the A or M or 4 train. we made the obligatory visit to the children's garden where toby ate a contraband hotdog while peering through the leaves for a glance at the franklin avenue shuttle S train. it was such a beautiful day.
toby's appetite returned for these few short days and he polished off quite a few bags of pringles and starburst, in addition to some real food. the docs and nurses tell us that a child's tastebuds completely change following chemotherapy, so we've been surprised at some of the foods toby has responded to. spicy seems good and we're constantly trying to offer different choices. our main goal was to bulk up the little guy yesterday and today, since he has already lost 8 lbs. we succeeded with a 1.2 lb weight gain, so he's up to 37.2, but with the specter of chemo tomorrow, he may lose more.
as you all know the apartment situation has been incredibly stressful. yesterday we decided to sublet a furnished apartment in carroll gardens from june 17-sept 1. this will give us some time to find a permanent place. we will most likely sublet our current apartment to a few grad students and leave all our furniture here. the docs have made it clear that we should spend as little time in our apt as possible, because of toby's compromised immune system. tonight we head up to the ronald mcdonald house on east 73rd street, for hopefully 3 or 4 nights. yoni will most likely stay at the apt with greg. after saturday, greg is returning to michigan and i don't know what we will do. if anyone has a temporary sublet available for 2-3 weeks, please contact me as soon as possible.
you, our wonderful community of friends and family, have been invaluable and precious to us. your devotion and love are so very appreciated. we need you and are immeasurably grateful to you. please continue to send us your thoughts and prayers. they matter more than you know.
love, mooki and stephen
Ed Clark, Christmas Guest
1 year ago