Toby Update

we have a busy week coming up with a cbc scheduled for monday, an audiogram to test toby's hearing on tuesday, a neck/chest/ abdomen/pelvis ct scan with anesthesia on wednesday and stem cell harvesting on thursday and possibly friday. we will probably need more blood and platelets transfusions as well.

friday was a typical day at the hospital: a short visit turned into an entire day of procedures, waiting, and unexpected developments. we arrived early for a routine cbc (complete blood count, when blood is drawn and tested from toby's broviac port, in the middle of his chest). he was also scheduled to receive his 4th loading dose of pentamidine, a drug that wards off pneumocystis pneumonia. toby had been on an oral regimen of a similar drug, but we are finding it almost impossible to give any medication by mouth. toby cries, flat-out refuses, screams, and engages in talmudic-worthy discussions about why he can't swallow medicine. we cajole, beg, bribe, institute rewards via charts with shiny stars, explain, cry, insist, occasionally force the medicine down his throat, and generally give up in frustration. pentamidine, which can be given via iv directly into toby's "tubies," promised most of the gain with little of the pain. unfortunately, one of the side effects of the drug is vomiting and nausea.

we spent last week working with the nurses to finetune our dosing regimen: premedicating with aloxi, an anti-nausea drug, then adding in vistaril, another antiemitic. no matter what we did, within 30 minutes of receiving the pentamidine, toby would moan, slump and throw up miserably and violently. toby has barely been eating and was still vomiting from the cisplatin, additional vomiting from a different drug just added insult to injury. by friday we finally hit on the right combination, thanks to the perseverance of nurse kate: aloxi and vistaril, given simultaneously over a half hour. then pentamadine, set to drip very slowly over the course of 90 minutes.

when the counts came back from the lab we learned that toby's hemoglobin and platelet levels were both quite low and transfusions were necessary. so we waited for a bed, waited for the bags of blood products to arrive upstairs, waited for the premeds to take effect and started the 1/2 hour infusion of platelets. midway, toby developed hives, an occasional reaction, and we waited while consultations occurred, more labs were done, and eventually the decision was made to take him off the platelet transfusion. then 3 hours of blood transfusion and at 6:30 we were finally, blessedly, home.

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there have been days, mainly at the beginning, when toby's only comfort has come from his cd player and a constant loop of randy's music. initially stephen and i found the sight and sound impossible to witness without breaking down in tears. the combination of toby's curled-up little body on a hospital bed and randy's sweet voice singing about trains and sunshine and mosquitos was just too difficult to bear. but we saw how the music soothed toby and gave him peace. somehow we've learned how to listen on toby's level, without our adult associations, without the pain of memory, with open hearts to the moment. i was reminded of all this on thursday night when i had the tremendous opportunity to attend the toby benefit concert, organized and sponsored by beansprouts.

from the moment i saw the garden overflowing with strollers and families, i felt the tears coming on hard and without interruption. i didn't know if i would be able to handle the huge emotions: there are beautiful, healthy children everywhere, i don't know how to act, why can't toby be here, i'm afraid i will cry and won't be able to stop, if you hug me i might not be able to let go, i don't understand why this is happening, i don't want people to stare, how can my child have cancer? it was incredibly difficult, but i am so glad i stayed at the concert. every person i saw, every note i heard, has made a difference for me and stephen and yoni and toby.

a message to randy, victor+friends, joanne, hot peas 'n butter, beansprouts, friends: we are comforted by you. you remind us that we are not alone. you enable us to feel a part of this community and we are so grateful.

love, mooki and stephen