today (5/17) marks exactly 1 month from the day we found ourselves at nyu medical center, scheduled for an xray of the spine, after i screamed at my pediatrician for not taking me seriously. we had been to the pediatrician 3 times over the course of 6 weeks, each time with the same complaint: recurrent neck pain that we felt couldn't be explained away as stress-related. and finally after begging for a ct or an mri or a referral to a specialist, we were given the prescription for an xray. 2 hours after the test, as we were on our way to a neurologist uptown, we got the call from our pediatrician that we needed to return to nyu for a scan of the abdomen. the radiologist had seen something on the xray: the spine seemed fine, but toby was "splinting away" from an area in his abdomen. there was something in his stance that needed to be reviewed. at 4 pm we found ourselves back in the xray room and at 5 pm started the longest ultrasound of our lives. we still had no idea what was going on, but after 90 minutes of scanning, i started to feel prickles of fear. and when the tech told us that the head of pediatric radiology was coming in to interpret the films, i couldn't imagine what the problem might be. at 7:30 pm, she told me they had found a mass in toby's abdomen and put me on the phone with my pediatrician. i don't remember a word he said except for "tumor." toby and stephen were standing behind me, and i started shaking uncontrollably, my hands flapping up and down in a crazy pattern of helplessness and disbelief. i handed the phone to stephen because there was no way in the world i could repeat the words i had just heard. they were gobbledygook, insane torrents of faceless, nameless data. and i ran to the other room and called my brother, screaming into the phone and begging him to translate my agony into something i could understand.
that night we were admitted to nyu and started the life we have today.
there are moments of surreal beauty. on tuesday we went to prospect park for an hour and sat on the hill, trying to whistle through blades of grass. a man jogged by wearing just his underwear and toby threw his head back and laughed. we took off our shoes and played hide-and-seek behind the tree. and that night the four of us went out for ice cream on court street and listened to our little flaneur's commentary on brooklyn streetlife.
last night toby inexplicably spent 20 minutes running (yes, running!) back and forth from bedroom to living room in an incredible display of pluck and sweetness. the smile on his face spread from ear to ear and his gait was familiar, healthy, the old gait. his little body seemed magically solid. for a moment i forgot about cancer. that night he slept in his own bed for the first time in days.
while toby was running, yoni was practicing "if i were a rich man" from fiddler on the roof. his classmates had chosen songs from grease, blood brothers, chicago. my amazing, almost-15-year-old boy picked my favorite, quintessentially jewish showtune as his performance piece. he was belting it out, all the yidle-diddles and the biddy bums, accented with full-body shimmying and tevye intonations. and then i heard these words coming from his room: "Lord who made the lion and the lamb; you decreed I should be what I am; would it spoil some vast eternal plan; if I were a wealthy man?"
and i realized that stephen and yoni and toby and i are rich indeed. we have been the recipients of an enormous outpouring of love, support and care from an incredible community that blossomed around us in a matter of days. we are being fed, we are being visited, we are being attended to with grace and feeling and goodness. i want you all to know that we are making it through this devastating time thanks to you. a month too difficult to bear, yet studded with moments of true compassion.
love, mooki and stephen
Ed Clark, Christmas Guest
7 months ago