i've been meaning to write for a few days, but am finding
it hard to put my feelings into words. it has been such a roller
coaster ride that i'm still catching my breath.
on sunday we were told that if toby made it through one more night without a fever we could be discharged, with daily outpatient visits until the next fever or problem arose. dr. kushner had warned us that we might spend 3 weeks inpatient because of the size of toby's tumor, so we were cautiously optimistic about going home after a week. sunday night was fever-free, but on monday morning at 11:00 (we had been up since 5:00) we were told that there was a disagreement about whether we were going home after all. finally at 1:00 pm the docs agreed and we started the long process of discharge. but first a blood transfusion which took more than 3 hours. and then training on how to administer the daily GCSF shot and then waiting for the pharmacy to fill 5 different prescriptions in huge brown bottles, and then collecting 3 bags of syringes. and then at 6:00 we finally left the hospital, in a chai lifeline van driven by shloimie. and then at 7:00 we arrived home, with toby exhausted and limp, barely aware that we were back in brooklyn. that night i slept on the floor next to his bed.
the chai lifeline people have been nothing short of amazing. each day two little orthodox women stop by toby's room, bringing bagels, danish, treats. later another duo visits to see how we're doing. every weekday we call hersh to arrange transport for the next day. our rides so far have been a lesson in cultural anthropology. jolly shloimie, long beard and sidecurls bouncing as he talks. next morning mrs goldberg, driving her own suv with 4 baby carseats and hebrew devotional a capella music blasting. and yesterday, yoeli mid20s (call me joe) in a lexus suv, white leather seats, gps, a trunk full of highend gym equipment, barking in yiddish on his razr cellphone. these highly observant jews are real practitioners of "hesed shel emet," (in hebrew, the charity of truth) they find the place of greatest need and give without any afterthought or calculation.
tuesday morning found us back at the day hospital for the entire day. toby was dehydrated so received iv fluids and had blood drawn. his counts were down to zero which explained his lethargy and total lack of energy. everything was a struggle and the day was one long painful crying jag. we were sent home with iv fluids in a 44-hour wearable backpack which i'll wear until we go back to the day hospital tomorrow. a bright note was meeting gretchen and larry witt, parents of liam, a beautiful little boy who has the same diagnosis as toby.
today was our first full day at home while toby is on treatment. it was a mixed blessing... while i relish being away from the hospital, the reality of home, with unyielding sofa, uncontrollable air and untenable shower is difficult. toby was exhausted today and spent the entire day in bed, unable to even listen to a story. he takes out his frustrations and pain primarily on me, screaming "i don't want you mommy" all day long. stephen calms him and by the evening toby accepts my lap.
toby is still not eating. we had 2 "meals" during our weeklong hospital stay, but now the most he can ingest is 2 spoons of soup or ice cream and a few goldfish. he looks so fragile to me.
stephen administers his first shot of gcsf into toby's thigh while i restrain toby. these shots are given for 10 days to boost the white blood cell count in preparation for the next round of chemo which will decimate them again. the solution burns as it enters toby's body and his screams echo for hours.
an incredible woman named gina, from kidz cut zone, comes to cut toby's hair this evening. he has been scratching his scalp for days and the docs say that his hair follicles are already affected by the chemo. it will be more comfortable for toby with a summer cut. as usual, he is fantastic and receives a great cut. i'll try to post photos. toby's hair will probably fall out in the next 2 weeks. gina refuses payment.
and now for the kicker: we need to find a new apartment. we had the house environmentally tested last week in preparation for toby's return home between rounds of chemo. the results are bad: highly elevated levels of lead and toxic metals in the house, in addition to dust mite infestation and aspergillus mold throughout. so we need to find a new place quickly. if anyone knows of a 3-bedroom apartment in park slope or windsor terrace, available this month, please let us know as soon as possible. i will let yoni know tomorrow, since he is still in mourning for the cats.
thank you to adina and mark for housing our cats. thank you to jessica bauman and jamie principe for being on-call the last 2 days and doing so many errands. thank you to sue weinstein from beansprouts. thank you to stephanie for putting me in touch with candlelighters. thank you to aileen, one of toby's teachers for an absolutely amazing visit in the hospital. thank you to mirm for delivering food. thank you to susan fox for her psp toby updates and great ideas. thank you to heather for her constant attention, love and coordination and for bringing aileen to the hospital. thank you to itamar and sonia for another wonderful hospital visit... taking toby on an elevator scavenger hunt after convincing the docs to give him an hour pass to leave the ward. thank you to all of you who sent emails, wrote letters, called, visited, worked on the blog, gave gifts, brought food and thought of us. you are incredible.
Ed Clark, Christmas Guest
9 months ago