Toby Update

hi everyone,

i don't know if it's the gray skies today or the fear of what happens over the next few days as we wait for toby's counts to inevitably fall, but i'm feeling anxious this morning.

toby finishes his first round of chemo at 1 pm today and we have been told that he will probably regain his appetite, have more energy and feel better for a few days. i want to embrace that information. but am having a hard time feeling positive.

i slept at home last night while stephen stayed at the hospital with toby. we take turns. coming back to brooklyn is definitely a recharge, but is emotionally very difficult for me. all of toby's things are around me but toby isn't here. his life in the hospital and for the next year or more will be so different from anything we have ever experienced. i mourn for my smiling, garrulous, active and inquisitive little boy. yesterday toby spent almost the entire day in bed, watching tv and it's something i feel we need to work on. he is not interested in leaving the sterile environment of his room to visit the playroom or go down the halls or talk to people. and i know i may be hoping for too much too soon, but it is still hard to bear when i look at my beautiful child and see his pain. how can we enrich his life when his favorite things are riding his tricycle on the ring road, going to the transit museum, baking cookies, riding the trains and busses, going to beansprouts?

many of you have sent toys and books. thank you so much; we are using them, although the last 2 days toby has really only found comfort in the tv. if you visit, i urge you to be upbeat, talk directly to toby, ask him questions about trains and elevators, tell him crazy things that happened to you on your way to work. if anyone has suggestions for how to make a kid's life in the hospital easier, please let me know.

on a positive note, toby had his first food in 11 days yesterday. stephen and i have been careful about not eating too much in the room, because chemo makes kids extremely sensitive to smells and we didn't want toby throwing up more than he has been, or associating food with feeling sick. but yesterday it was 3 pm and we realized we hadn't eaten, so we ordered some pasta and sauce and salad with grilled chicken. when it arrived we put it on the ledge out of sight and toby suddenly said "i want turkey, i'm hungry" (!?). we managed to put together a quick plate of grilled chicken, applesauce, some potato chips. amazingly he ate, didn't throw up, and was happy.

randy sang a song about a loquat tree on the roof yesterday and i will keep that in my mind as a beacon of warm, summery, sticky hope.

i'll have more info on donating blood for toby soon. love to you all,
mooki