hello everyone, we are back in the hospital since friday evening, because of a fever and slowly readjusting to life on the inside. friday at home was actually lovely... stephen built a lego train track that enticed toby to play on the rug for the first time in many days. saba was able to elicit some belly laughs and randy came over for some quick songs. but then it was back to mskcc and admission through the urgent care center where toby was immediately hooked up to iv antibiotics to treat a possible infection.
while we were waiting for a bed to open up on the 9th floor we found a roll of medical tape and toby taped up his hospital bed from side to side. one of the nurses also brought in a small craft kit with four tiny paint pots and a white plastic fish. we covered toby's lap with a sheet and he jackson-pollacked the fish with interest and intent.
stephen also discovered that his itunes stash on the computer is a great distraction for toby. since that night mommy and daddy have danced around toby's bed to booker t while toby grooves lying down. it's a new activity, one born of our new reality. so far it works amazingly well.
toby spends most of his days in bed, with short forays to the playroom and around the ward. we want him to be up and about as much as possible, but he tires quickly. so we're trying to come up with ways to make the hospital interesting beyond the constant beckoning call of tv. over the weekend toby did his "homework" on the computer, typing pages of letters, increasing the font size and cycling through the pages like a stop-motion animation.
so we're in until toby's absolute neutrophil count rises to 500, which may take a few days. i hope that we'll have a tiny window to return home before his next cycle of chemo starts. we are currently at day 14, with the next treatment scheduled to start on or about day 21. however, the protocol is aggressive, so if the docs deem he is ready to start before day 21, we will.
toby has now lost 8 lbs, down to 36 lbs. for the last few days his mouth and throat were filled with sores (a side effect of chemo) so he was unable to eat much of anything. the nutrition staff suggests liquid foods during this time, but toby tanked out on icecream and jello pretty quickly. yesterday out of the blue he announced that he wanted chips and stephen ran out to get cheetos, pringles, anything with taste and salt. i couldn't believe that his poor swollen mouth could handle those intense flavors but he relished the jolt of flavor. last night he actually ate 4 small bites of pizza, so we might have a few days of real eating before the 2nd cycle.
toby still looks beautiful, with his new short cut and lingering suntan from jamaica. he is the most delicious little boy. the long road ahead seems cruel and unfair. we try to take it day by day. my tears are short, fierce and usually come in the early morning, at the moments between sleep and wakefulness, when i remember our old life and am confronted with the new.
uncle greg pannone drove all the way from michigan, arriving late on saturday night after a detour to queens. we are so grateful to have him here for the week. yoni is doing okay, very busy with sports on the weekends and school the rest of the time. yesterday we had a normal dinner together and right now he's sitting next to me having breakfast.
a totally inadequate thank you to all of you for your continued and amazing support and love. the food, visits, words, errands, energy, gifts and prayers are so, so important to us. we have just started on this journey together.
thank you and love, mooki and stephen
Ed Clark, Christmas Guest
9 months ago