i'm too tired and emotionally overwhelmed to put together an update, but do have some scattered thoughts that i want to share.
we've been living out of suitcases for the last 3 weeks, recycling the same 4 outfits over and over. in a way it makes life simpler, especially on those mornings when we have to leave brooklyn at 7:15 in order to make it up to memorial sloan-kettering in time for treatment. i've discovered that most of my clothes are totally inappropriate for the hospital... who can possibly wear pointy-toed shoes and sleeveless dresses while holding and consoling a screaming, hurting child? cute skirts just don't cut it when trying to balance 2 bags, a stroller, a portable urinal, a barf basin and an iv pole. this week, with the aftereffects of cisplatin lingering, our plain-jane tshirts have been put to good use as fluid collectors, face smoothers, vomit moppers.
a few weeks ago i asked some of you to help me get soft lightweight pants for toby to wear at the hospital. i was concerned that i didn't have anything appropriate in his size. as it turns out, i needn't have worried. toby is so skinny that the clothes that were tight on him last year are now baggy. i'm constantly retying the waistbands of his pants, so that they don't fall off in midstride. the collars of his tshirts look huge and loose around his little neck. and his underwear literally hangs off him. it's so disorienting to be going backwards, from size 4 to size 3. i know that we have only just started treatment... he will get even skinnier...
toby has eaten just a few bites over the last 5 days. all week we have tried every possible food and combination. his tastes keep changing because of the chemo... one day it's only crunchy foods, the next it's only mushy. add in nausea, mouth sores, exhaustion and neutropenic restrictions and feeding toby becomes akin to an act of prophecy. we're never quite sure what food will go over, but tonight we won the lottery with 6 ounces of ensure, disguised in his sippy cup as "chocolate milk."
i've been having a hard time falling asleep this week, alternating between despair and tears every night. we've made it through 3 cycles of hardcore chemo and that's a lot. what i'm having trouble with is the knowledge that there is still so much that awaits us. and it seems huge, frightening, insurmountable. a massive surgery is around the corner. and then 2 more rounds of chemo, but possibly more. then extremely painful 3f8 antibody treatments that can continue for up to 2 years, overlapping with radiation, and accutane. i see the effects that chemo has already had on toby... i don't know how many of you would recognize him. and i worry what the next stages will be like for him. i know we have to stay the course. i know that this treatment, with all of its horrible short-term and long-term side effects will ultimately give us the best chance of saving toby's life. i know that i can't keep comparing our life today with our life of just 7 weeks ago. and i know that i need to stop thinking about the numbers, about the kids who don't make it.
what i need to do: focus on my beautiful child, make sure that he is comfortable and happy. take it day by day or even hour by hour. play. be loving to my older son, who is such an incredible boy and is going through so much right now. be grateful to my friends and family who are helping in so many, many ways. and thank god for stephen, who is taking every step with me.
Ed Clark, Christmas Guest
9 months ago