Friday, April 13

Today is the beginning of our last weekend here, a place that has begun to feel like home for Hannah and I. We have come to love and trust the people that share our lives with us every day, working to get Hannah better. We are happy to be coming home, but we will miss the wonderful people here. Our routine is somewhat set here, in a very safe and structured environment. It's a bit unnerving to be back at home, the little fish in such a big pond again. I think that in time we will come back to Boston and think of it as a wonderful place to visit instead of just the place we had to come for radiation. We will have to return here in about a year for a follow up with her doctor at the proton center, and a few other doctors here. We may just be ready to come back by that time.
As always, the childlife specialist here, Audrey, is always looking for new and fabulous things for Hannah to do. Here is Hannah doing "frog painting", where you paint your palms and the bottoms of your feet, then you jump like a frog, painting your picture. Hannah thought it was wonderful, as you can see in the pictures.

This coming Monday is a big event here-the Boston Marathon, held here since 1897. Today Spaulding got a visit from Ernst Van Dyk, a wheelchair marathon competitor, who is sponsored by Spaulding Rehab Hospital. He has won the race the last 6 years in a row! His fastest time was 1 hour, 18 minutes, which is the world record for a wheelchair marathon. He was a very nice man, from South Africa, and was born with congenital defects to his right arm, and two legs. I didn't know until I read on his website today that he has 2 prosthetic legs. This is a picture of Hannah and I with him. They are calling for a bad Nor'easter Sunday night into Monday, so there is talk of postphoning the marathon.

Dave came up today for our family meeting, where we met with Hannah's team of therapists and doctors. They make their recommendations for her care after her discharge, her reentry into school, etc. We can't say enough about all of the caregivers here, this is one of the top pediatric hospitals in the country and they are all very good. Hannah is putting together a report of her time here, which she will use to talk to her classmates when she returns to school so this weekend we will be taking pictures of some of her favorite places here like the Science Museum, Aquarium, Duck Tour busses (which we didn't do, but look like a lot of fun. The vehicles are half truck, half boat and go right from the road to the water), her proton friends, her therapists and a few other fun places. It is therapeutic and will help her to explain things to her friends, who will most certainly have a lot of questions about where she has been and why. Can't believe it's our last weekend here!
xoxo Kim