Tuesday, May 15, 2007

Toby Update

just another day

today was supposed to be a low-impact day: no chemo, no long day scheduled at the hospital, no round-the-clock iv fluids or antibiotics attached to toby's central venous catheter by way of an awkward backpack filled with beeping pumps and bags of liquid. today was supposed to be a quick visit to the hospital and an afternoon spent enjoying our new digs on kane street.

i awoke early this morning in a state of anxiety about greg's departure. in addition to everything else he did this week (secure 2 sublets, drive us to the hospital or back each day, move our belongings, buy a new vacuum and deep clean the apartment, do laundry, take yoni to all his practices, buzz toby's hair, go to the yard sale, sit with us for hours during interminable hospital waits, and engage in hand-to-hand-combat with a renegade mouse) he managed to create an incredible bond with toby. we will miss him terribly.

so we arrived at mskcc at 10 am and waited in the iv room to get blood drawn from toby's "tubies." we had already told toby that this was the only thing on the agenda (reminder to self, NEVER make that mistake again). we were in a silly mood and toby happily submitted to tickling. it was only after the blood work that we remembered that today was monday, one of the dreaded bandage change days.

the nurses have recently migrated toby over to primapore bandages instead of the tegaderm bandages he has been wearing since mid-april, because his chest skin is severely irritated and in danger of breaking down due to frequent adhesive removals. (imagine a 5-inch square super-sticky "skin" applied and removed 3 times a week, right in the middle of your chest. the bandage needs to be peeled away with solvent to prevent skin tears and then, once the area is already nice and irritated, it requires cleaning with a burning cleanser for 30 seconds while applying pressure. suffice it to say that bandage changes are one of the worst aspects of being sick for toby.) the primapores are smaller and easier to remove, but leave a strong coating of very tacky residue that needs to be cleaned before the next bandage can be applied. as of today we're onto our third type of bandage, the tielle, which i hear costs $10 a piece. none of this was pleasant, but we made it through.

while we waited for toby's counts to come back from the lab, we played in the playroom with a remote control car. he was in a great mood, asking for food, relaxed, smiling. and then came the news that toby's white blood counts had dropped to .5 and his absolute neutrophil count was at zero. now officially neutropenic, toby needed to get an insuflon (an indwelling tube that is inserted under the skin of the thigh) and receive his first dose of gcsf, the shot that stimulates white blood cell production. stephen was at the pharmacy trying to get toby's oral medications flavored with cherry and watermelon since he has refused to take any medicine for the last week. and so i was left alone with toby and the knowledge that in just a few minutes he would have to undergo yet another painful, frightening and hated encounter.

and i think i quietly panicked. toby was hungry so we ate cheese and pickles and tomato soup and fries (amazing, really) and i explained that we needed to get the insuflon. recently we've been more straightforward with toby. he's not just "sick" anymore. we have told him that he has something called cancer, that he needs to get a medicine called chemo to get better. that the chemo medicine sometimes makes hair fall out, but that it will grow back. that he will sometimes have to be at the hospital to get better. i don't know if we're doing the right thing; there's no roadmap that i've found for how to explain this to your child. and today, i quietly explained that he was going to get the insuflon because he needed it to get well. he immediately tensed and asked why he had to get it again, for the second time (dear god, how can i ever explain that he'll need it many more times). but i think he would have been fine, had we not had to wait for another 30 minutes, during which time he got more and more anxious and overwhelmed. by the time stephen came back and we were called to the iv room, toby was completely hysterical, screaming "i don't want it" over and over again. he was so distressed that he threw up immediately after the insuflon was inserted. all those calories wasted.

but it was only 2:00 and the sun was shining and we were on our way back to brooklyn with a limp boy in the taxi. once we got back to kane street, toby regained some energy and went on an errand in his stroller with stephen. but then evening came and we needed to administer medicine and swab his mouth in preparation for the sores that fill his throat and tongue, and give the gcsf shot.

every time we begged him to take medicine, or restrained him while administering the G-shot, or made him scream while changing his bandage or held his arms while swabbing his mouth, i felt like i was violating my child and betraying his trust. mommy and daddy are supposed to comfort and protect. how must he feel never knowing exactly what's going to happen? are mommy and daddy going to hurt me again or can i finally hear a story and play with my cars?

i cried repeatedly today. and my heart broke a hundred times. as i lay in bed next to my exhausted child he whispered to me, "the G-shot will make my cancer go away and i don't like my medicine because it's watermelon not cherry and i want mouth sores because i like to eat cold popsicles in the morning and did you know that there's a B100 bus?" he kissed my hands and nuzzled me and thankfully, fell to sleep.


i want to write about the amazing yard sale and the continuous outpouring of love and support that you have given us, but i'm just beat. hopefully tomorrow will be a quieter day and i will be able to let you know how grateful we are and how much your care means to us.

love, mooki and stephen

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