last week was a whirlwind, but we were rewarded with a 4-day weekend, our first extended break since treatment began on april 17. i can't quite believe that i've become accustomed to spending every monday, wednesday and friday at a cancer hospital, but it seems we can get used to anything, even the unthinkable. in a strange way, the triad of weekly visits is reassuring.
when ursula, toby's beloved nurse practitioner, told us that we didn't haveto return until monday, stephen and i blinked in surprise and mild panic. we realized that it would be impossible to reclaim a completely pre-disease weekend, but really tried to give toby a taste of normalcy, and found ourselves in the swings at the park, on a kiddie ride at coney island, at an outdoor table eating rice and beans, at the clinton street block party where we let the water from a fire hydrant run over toby's feet. and every minute we worried about him, wondering about his counts, eyeing the outcroppings of bruises on his legs, assessing the dark rings under his eyes, feeling his forehead for possible fever, washing his hands at every opportunity.
overall though, it was a lovely weekend and a much-needed respite. toby's energy level was good, with lots of outdoor activity in the mornings and quieter afternoons inside. we did go out for italian ice every evening, even in the midst of a rainstorm. and we moved today to our next sublet, which will take us through september 1, when we will need to move into a permanent rental. please let us know if you have any leads on a 3 br apartment with washer/dryer in park slope, cobble hill, carroll gardens, windsor terrace or surrounding nabes. we are very concerned about finding a place in time.
our temporary address is 66 1st place, brooklyn, ny 11231.
now, some details about last week:
on monday and tuesday toby received blood and platelets transfusions, from bags marked with small pink index cards. the cards are handwritten, in the style of old library catalogue cards and they let us know that this blood or those platelets were donated specifically for toby. due to privacy laws, the cards don't list the donor's name, but we have found out that more than 35 of you have come forward to donate for toby. we can't adequately express how powerful your actions are. it is indescribable seeing a friend's blood going directly into toby's body . thank you.
on tuesday morning, while on the way to toby's scheduled audiogram, i received a call telling us to report instead to the donor room, where toby's stem cells would be harvested during a 4-hour procedure. apparently, his white blood cell count was on the rise, after just two triple-strength doses of GCSF, the shot that stimulates wbc production. there's a small
window for collecting stem cells and the docs wanted to take advantage of the opportunity. toby had a surprisingly good time during the harvest, eating everything in sight and requesting pizza, peasoup, chips, icecream, muffins, yogurt and fruit salad. we haven't seen him eat so much in months.
his hemoglobin was very low during the procedure and while looking at all the pumps and tubes snaking out of his body and into the mainframe-sized machine, we couldn't imagine just how little blood he actually had circulating through his veins. late that evening we found out that 11 million stem cells were harvested (they needed a minimum of 7 million), which meant that we didn't need to return for another harvest.
wednesday morning toby drank his ct contrast dye/fluid and barely complained of hunger, even though he wasn't allowed anything by mouth until after the ct at 2 pm. he was cold and tired that afternoon, but still managed to simultaneously stuff 2 handfuls of pirate booty and 4 strawberries into his mouth. we'll hopefully have more details on the ct results this coming week. toby's audiogram has been rescheduled for tomorrow.
i wanted to tell you how toby's play has changed over the last two months. he has created new games that don't require much movement and that use the bed as an imaginarium. on tired days we spend many hours lying down under the covers, as toby pretends to turn me into a cat, mouse, or bunny. he then proceeds to tell the "animal" exactly what he's feeling. i don't say much during these sessions, meowing or purring instead of using too many words. and this gives toby the space he needs to work through his new reality. he hugs and kisses the "cat" continuously, all the while explaining the different effects of medicine, or the way a g-shot feels. sometimes he asks the "cat" if her throat hurts and then says she has to take "zofran" (in actuality an anti-nausea medication). or he questions whether her stomach hurts and tells her very seriously that the "chemo medicine" will help (this one absolutely breaks my heart). occasionally he wrestles the "cat's" mouth open and pretends to force down a dose of medicine. this is followed by wordless, fiercely strong hugs, over and over again. i'm trying to adapt to these incredible play therapy games. they are a powerful, bittersweet and aching reminder of where we stand. i love being a foil to toby's imagination and i am constantly struck by his ability to synthesize the unexplainable into positive experiences of love and togetherness.
love to all of you,
mooki and stephen
Ed Clark, Christmas Guest
9 months ago