I am sending this update from Silver Spring, having just returned from NYC. I sent this update yesterday twice from my PDA, but unfortunately it didn't go through. I know you are all interested in hearing about Toby, so please accept my apologies for keeping you in the dark due to technical difficulties.
Before I bring you up to speed on Toby, Mooki and Stephen asked that I convey to each and everyone one of you how grateful they are for the immediacy of outreach and support. They feel as though they are truly part of a caring community.
On to Toby - the work-up is finally complete and as suspected he has advanced stage / high-risk neuroblastoma, involving the bone, bone marrow, and abdomen. Toby is still very tired and not all that interested in eating. He loves listening to his "Randy" CD, but otherwise, as you can imagine, hospital life is pretty boring. Toby has no interaction with other kids at all. Earlier today, his teachers from Beansprouts paid him a visit and Mooki tells me that for the first time in days, he was more like himself. He played and showed-off his hospital equipment to one and all - teachers, great job!! Which brings me to another suggestion; perhaps some of you Beansprouters out there, could videotape some of your classes to share with Toby. I know he would love to see his friends say "hi."
As it stands now, the plan is to transfer to Sloan-Kettering tomorrow and hopefully start chemotherapy shortly thereafter. Once Toby's settled-in, we'll send out the next e-mail with room# and information about visiting.
I have received a plethora of e-mails offering to help in various ways. Unfortunately, I have had to return to Maryland and coordinating matters is considerably more difficult from afar. Perhaps point people from each of Mooki and Stephen's respective "groups" could coordinate with each other to assure that meals, shopping, "Yoni-call," etc are taken care of in an expedious fashion. I have already volunteered the services of Fran from UJC (firstname.lastname@example.org), Carie (email@example.com), from PSJC, and Heather (firstname.lastname@example.org) from Beansprouts. They have grabbed the bull by the horns and are steaming forward - thank you so much.
I will be returning to NYC on Thursday, but am always available by e-mail.
Each of you is a true friend or relative and we are very fortunate to be surrounded by such a committed and caring group.