After several weeks of "routine" visits to Sloan every Monday, Wednesday, Friday, during which Toby received blood and platelet transfusions, underwent bone marrow aspirates and biopsies as well as other radiologic tests, today marked the beginning of the next phase of Toby's ordeal. Early this morning Toby had surgery on his neck. His surgeon, Dr. LaQuaglia, removed many diseased lymph nodes, which had failed to respond to five intensive cycles of chemo. Many of the nodes looked "strange," either the result of neuroblastoma and/or the chemo itself. Tonight, Toby is recovering at Sloan where he is a bit grumpy as a result of not being able to freely move his neck and because of the pain associated with the surgery. He is getting morphine every couple of hours. Despite this, Toby's primary team believes that he is ready to start chemo tomorrow and because Toby hasn't "seen" any chemo for about a month or so, the team doesn't want to delay any longer.
The chemo will consist of three agents, one new one that Toby hasn't gotten yet (topotecan) and two that he has received in prior cycles (cyclophosphamide and vincristine). Topotecan has been shown to be (moderately) effective in combination with the other two in neuroblastoma, and the hope is that Toby's remaining areas of disease (neck, shoulder, and possibly his leg) will respond favorably. The chemo will last five days and if all goes well, it will be followed by antibody (3F8) treatment and radiation. Toby can expect the usual assortment of unpleasant and upsetting side effects like mouth sores, nausea, vomiting, constipation and diarrhea, foot drop, and low blood counts. Hopefully, he'll weather this latest onslaught like the others without too much excitement (being a boring patient is always a good thing).
On the home front, Mooki, Stephen, and Yoni are transitioning to their new home at 19 Temple Court and are officially moving in on Saturday, Sept 1st. The movers took care of the majority of the belongings, but there are still quite a few "leftovers" at the current sublet at 66 1st Place which need to find their way to the new place on Friday, the 31st. Betsy, Stephen's sister in-law, is busy unpacking and arranging. If anyone is available to help unpack and/or move (i.e., drive) the remaining boxes, please call Betsy directly at (206) 300-5725.
Finally, because chemo will continue through Saturday, Toby and gang will be at Sloan everyday until then. Rather than having lunches delivered to their home, dropping them off to Mooki and Stephen at Sloan would be great.
So many of you have been an amazing source of support and inspiration. We are truly grateful and awed by your spirit and caring. Thank you.
Ed Clark, Christmas Guest
5 months ago