I've just returned (along with my wife Gila, & our 2 girls, Isabel & Ayelet) from NYC where we spent the weekend with Toby, Yoni, Mooki, & Stephen.
I haven't seen Toby in several weeks & this was the first time Toby's cousins have had an opportunity to visit since he was diagnosed (Isabel & Ayelet traveled to NYC a few weeks ago, but Toby was admitted to Sloan the day of their arrival so they couldn't visit).
Toby greeted us Friday afternoon bald & quite a bit skinnier, but still as sharp & inquisitive as ever. After a short "warm-up" phase, Toby, Isabel, & Ayelet were like the three amigos. Toby, sat on the couch & played DJ, adeptly manipulating his trusty boom box between various favorites, all the while grooving to the tunes. Stephen's "shake it, don't break it" was all the motivation he needed. Isabel, never one to shy away from an opportunity to dance, somehow managed to adapt her ballet moves to keep in step with Toby's eccletic tunes. Not to be left out, Ayelet (inbetween stealing bites from Toby's perfectly color coordinated, diverse, & healthy plate painstakingly prepared by Mooki) rolled between her cousins on Toby's Good Humor truck.
The cousins then made for the closets where Toby introduced the girls to one of his favorite games "elevator." They traveled between the various floors of Macy's with Toby acting as elevator operator, food deliveryman, & chef. By the early evening Toby was running(!) from room to room & while not nearly as chatty as Isabel, he held up his own. By dinner reality had snuck back in; Toby began to limp & while we cleared our plates & then some, Toby nibbled only at his food. While we were enjoying each others company, Sonya & Itamar were packing up part of the 13th St. Apt (& they returned today for more).
Saturday we headed to the Clinton St. park where the cousins played "train." They pushed their carriages around the circle at least a dozen times. We then tested each other's accumen imitating animal-calls based on Ayelet's choice of various creatures. Yoni & I played whiffle ball (he's very good) & then we all walked to Nino's Pizzeria for lunch. While Toby took a well needed 3 hour nap, Yoni & I went to Prospect Park where we played more whiffle ball & frisbee (he's pretty good at that too).
After a late dinner, Toby, Mooki, & Stephen went out for Italian Ices.
Sunday morning, Mooki took Yoni to Prospect Park where she filmed him launching rockets. Toby & the girls played some more & I got a chance to read Toby & Ayelet one of my favorite books (Bee Bop Express) about a train hauling jazz musicians from NYC to New Orleans.
As expected Toby left his mark on us all. Ayelet (2 years-old) has a new mantra, "Toby & Yoni my cousins, I love them." I feel very fortunate that we were able to enjoy a semi-normal weekend with Toby, which will probably be the last one for a while. Tuesday, Toby has reevaluation scans to assess how much his tumor has responded to the chemo. Later Tuesday he starts his 3rd cycle of chemo (this time with 2 different medications he has yet to receive). The idea being to keep the neuroblastoma from developing resistance to any one group of medications. One of the meds Toby will get (cisplatin) is especially nasty, in the immediate phase it can cause pretty significant nausea & vomiting & later it has the potential for causing hearing loss.
Following the 3rd cycle, Toby will have a repeat bone marrow evaluation (the results of Friday's marrows are still pending) & the surgery to remove whatever tumor(s) is/are left.
Please donate blood & platelets if you can.
I'll keep you posted as things develop.
Ed Clark, Christmas Guest
6 months ago