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
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
Hi Hannah,
I just had to tell you that there are two girls in my house who are sooooo excited that you are coming home this week. They just can't wait to see you! I'm pretty excited also. Keep smiling beautiful girl!
Love and kisses,
Mrs Claudio
dear hannah, I think its really cool how you frog paint. Maybe we can do it when you get home. Maybe we can do some art stuff together to. I'm REALLY GLAD your coming home. I REALLY miss you. I love you.
love your friend
charley
Heyy Hannah!
i can't believe your comming home this weeek!That is soooooo exciting! Maybe you can play with some of the gifts you got for easter. like that GIANT bunny that can dance! one of my firends has one of those, its awesome! speaking of which, how was your easter? mine was good, i got a webkinz (lilmisssnowflake and buffbulldog123).
That frog painting sounds really cool, it looks so fun to hop around with paint on your feet and hands! we all miss you so! my family says hello.
Always,
Tori
Hi Hannah Love
Wow!!!! I am so excited for you finally reaching your date to come back home. You have rode this long wave with great determination and steadfast faith. God Bless you beautiful girl! I look forward to seeing your beautiful smile throughout our school building real soon.
How cool was that frog painting? I can not wait to do that with my little grandson. He is only 4months old now but maybe this summer I can dip his feet in some paint and let him bounce around. I think he will really have fun don't you?
I am visitng my grandson right now in New Hampshire and I hope I do not get snowed in although I think it would be great to stay a little longer to play with him.
As always, my prayers and heart are with you and especially this last week as you finish up with your treatments. You go girl.
I love you much and love to Mom too.
Love& Blessings,
Mrs. Baker (Lynnis)
Dear Hannah,
I'm so happy that you are coming home next week. I can't wait to see you. I miss you.
Love-
Sarah
xoxoxo
Heyy hannah,
I can't wait till you come home.I can't wait to see you and play on webkinz with you
Seeya
Maisy
Glad you'll be headed home! Protons in Boston! That's great! I have heard soooo many nice things about the center!
I think your pictures are great!!
Kim, if you haven't already joined this group, you may wish to:
http://health.groups.yahoo.com/group/Pediatricbraintumors/
Hey there Hannah!!
Uncle Mike once had feet that looked like that but I went to the doctor and....well never mind!! :o) That frog painting sure loos like fun.
So glad that your time to come home is finally here! I'm sure Riley is missing you!
Have a great last week.
Love ya!
Uncle Mike
Hi Hannie: We are so excited to know that you are coming home this week. We will have to put Riley on his leash as I am sure he will be jumping like a horse trying to get to you to give you big wet kisses!!
We had such a nice time at your party. Everyone said how much they have missed you and they can't wait to have you back home again.Your classmates are so excited to be able to have you back in class once again. I met your teacher, Mrs. Tephenhardt and no wonder you like her as much as you do. She is a very sweet person and is SOOOOOO excited about you returning to her class again. Miss Bonnie was there--your nurses from the school was there--the ladies from the office were there--all of your friends mommies and daddys were there and a bunch of people you probably don't even know!! Everyone was so excited that you and mommy are coming home this week--but not as excited as we all are!!
You are the most amazing little 7 year old girl that I know and we know how hard you have been working to get stronger. Keep smiling that beautiful smile of yours. No wonder you are such a special person at Spaulding House.
3 more days and you'll be walking up the sidewalk home. We just can't wait.
Hugs and Kisses and all our love,
Colby, Grampa and Gramma and of course---RILEY!!!
OXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX
Hi Hannah, I can't wait to see you at school. When you get back to school I have a suprise for you! I went to Florida and collected shells and sand dollars every morning and thought of you each morning. I hope you feel better soon.
Love,
Grace
Hi Hannah & Kim,
I went to your party the other night. Wow!!! There were a lot of people. They were all cheering for your return and we hope you have a safe and uneventful trip home.
Love,
The Sutton Family
PS loved the foot/hand frog painting, I have done that on walls and quilts. Its so much fun!
Hey Hannah,
Frog painting looks so much fun! I love painting but I've never tried doing it with my feet! I just wanted to tell you that I am so happy you are coming home. I met your Grandma and Grandpa and a whole bunch of other people last Friday night at your party. We are all looking forward to having you back home. I would love to see you and Colby when you are feeling up to it. Maybe you can teach me how to frog paint...I don't know how well I can jump though...
See you soon,
Erin
Hey Hannah,
Its your cousin Lynsey. I can't belive it! You are finally going to go home! I can't wait to see you in the summer! Make shure you get your fishing pole and I will challenge you to a fishing tournoment.
Love,
Lynsey
Sounds good that you'll be home this week. We hope the changes from Boston to home go smoothly for you both. You'll be the star of the school, being able to show all that you know. Best of Luck to you!
Love, Mrs. Scheer and Kimberly
Hi there Hannah,
Glad to hear that everything is going so well and it looks like you will be back home soon. That is the best news I have heard in a while!!!
I bet Colby will be really happy to have you back. Glad to read that you are getting ready for your next step in getting better. Just keep putting one foot in front of the other . . .
I just got back tonight from a great vacation in Italy and wanted to check in with you. We stayed at a house on top of a mountain, there was a herd of sheep that came through our own olive orchard every morning, there was a little lamb too and a shepherd named Guiseppe - he left us some cheese one morning that he had made from the sheeps milk - that was really fun. Lots of good ice cream in Italy except there they call it gelato (it is really really good stuff)
While we were there it was my birthday and we went out for dinner in a town that was surrounded by a big wall - it was pretty cool - they even had big doors that they could close if they wanted to keep anyone out - glad they let us in!
I agree with Charley that it sure looks like fun to be a frog painter!
Well honey, I am really glad to know you should be home soon and cannot wait to see you in Mattituck.
Love
Liza
Hey Guys,
Hope you continue your blog back in Mattituck! I love getting the updates down in the Big Easy! Webkinz is really popular down here too. I sneak on Finns account and play games but he doesn't mind because I get him all the web cash, or whatever it's called!
xoxo
Jen