we received the results for the bone marrow biopsies late thursday afternoon, and we're feeling guardedly positive. one of the samples is clean, the other still shows neuroblastoma cells. while we would have been happiest with two clean biopsies, we are going to accept this as a small victory. the chemo is working. it will take more cycles to get the bone marrow totally clean, but we are determined to get there.
the biopsies were taken from toby's hip bones and i'll share with you the official language: 1. bone marrow, left posterior iliac crest, biopsy: metastatic neuroblastoma in multiple small foci. the uninvolved bone marrow appears unremarkable. 2. bone marrow, right posterior iliac crest, biopsy: normocellular bone marrow (approx 80% cellularity) with trilineage hematopoiesis the m:e ratio is normal with adequate maturation in all cell lines we see no evidence of neuroblastoma
i have to admit that it sounds better than the language that accompanied toby's first bone marrows, done during the awful week of diagnosis on april 20: "metastatic neuroblastoma extensively involving bone marrow."
we are still awaiting the results of the bone marrow aspirates, which test the blood/liquids from the front of the hip area.
the procedure itself was unremarkable and probably more difficult for us than for toby. we brought toby's boom box into the operating room and he received "sleep medicine" while listening to kermit sing a song about rainbows. stephen was holding him as he entered the land of dreams. 20 minutes later he woke up and demanded to hear the rest of the song which we had so rudely interrupted. the next day he realized that he had four 3-inch packed gauze dressings on his lower torso. although initially alarmed, he has become extremely protective of the bandages and refuses to let us remove them. since toby has no control over anything in his life right now, we are letting him hold onto his bandages until they rot off.
round 3 of chemo was exhausting for all of us, but again, toby weathered it amazingly well. we had very long days at the hospital, leaving the house at 7:15 in the morning and arriving home at 7:30 in the evening. the drugs in cycle 3 are particularly harsh, causing extensive nausea, vomiting and the possibility of significant hearing loss. and yet toby continues to amaze us with his energy, his smiles, his smarts and his incredible sweetness. he now accepts the 6-foot-tall IV "pole buddy" as a natural extension of himself and pushes it around, pretending to be on a highway. this week he started to help the nurses to draw his own blood, and to flush his "tubies" with heparin. and for the first time since the beginning of treatment he asked about his broviac tubes, "where do they go, mommy? what are they connected to inside my body?" there's something very sad about toby's necessary medical education. i would much prefer that he ask about frogs or fairies or sunshowers. on the other hand, we are in awe of the force of his personality, his inquisitiveness, his resolve in the face of a completely new life and environment. he is engaging with the world and we embrace the opportunity to teach, to learn, to be silly.
we are at home for the weekend, with a 72-hour IV backpack of fluids connected to toby and carried by either stephen or me at all times. toby's not eating much because of the nausea, but he has only thrown up twice. he is officially neutropenic, so we are again paranoid about every real or imaginary germ. neutropenia (when the white blood cell count bottoms out) requires a special diet and extremely cautious behavior from constant handwashing to limited contact with other people. this is what went through my brain as i was making breakfast this morning: make sure that i cook the eggs enough, did i wash my hands just now? i have to throw out the strawberries and blueberries so that toby doesn't ask for them. oh no the grapes too. what time did i give him the anti-nauseau medication? if grapes aren't allowed then what about the grape juice he had for shabbat last night? are these eggs dry enough yet? oh god i just noticed that the smoothie has strawberries in it. well he'll probably not eat any of it anyways. i have to get more purell. when was the last time toby peed? did i breathe on him this morning when we cuddled? what if i have a cold? what if i've cross contaminated him and we have to be admitted to the hospital again? ok maybe i should wear a mask. we need more tomato soup. i wonder how much toby weighs. damn the eggs are burnt.
on june 15 toby is scheduled for a ct scan, to see how the tumor has responded to cycle 3 of chemo and we are tentatively scheduled for surgery on june 27. i anticipate that stephen and i will need a lot of support that day, and in the week leading up to and following this massive operation.
speaking of support, tomorrow's (sunday, june 3) ny daily news will have a story about toby and the amazing support network that each and every one of you has created through your food deliveries, errands, financial assistance, blood and platelets donations, visits, gifts, phone calls, emails, stoop sales and more. i have said it before and i'll say it again, we would not have gotten this far without your love, your strength and your care. look for the piece in the brooklyn section.
love, mooki and stephen
Ed Clark, Christmas Guest
9 months ago