Friday, April 27, 2007

I realized today that I have to start including the year on my posts because I will still be doing this next year. Now that's a thought.

Hannah really gave us a scare today. She awoke and threw up, just like she did before she was diagnosed. She then appeared to be fine, so we went to PT, where she promptly threw up again. This is so indicative of her pre surgery days, it was very scary. We immediately called three doctors, and were able to talk with her new oncologist, who said it is very common with medulloblastoma kids to need anti nausea meds for quite some time after surgery, radiation and chemo. Hannah went off her meds this week, one week post-radiation. He said it did not mean the tumor was back or anything else, and that we had no need to worry. She didn't have any other symptoms, and after I gave her the med again, she perked up and has been fine the rest of the day. For a short period of time though, it was quite nerve wracking.

Hannah did go to school today for her author's tea. This is an event that the children have been preparing for by creating, illustrating and publishing their own poems. Hannah got up, without assistance, and read at the microphone. The one poem she had written in Boston about how much she missed her class and wished she was home. This came immediately following a friend's poem entitled "my friend Hannah" where she talked about Hannah and wondered "why did Hannah have to go away". Talk about a tear jerker, at least I wasn't the only one in the room a bit misty eyed.
She is now home playing horseopoly with Grandma and Grandpa on their last night in town. I was trying to coax them into a few more nights, but they will come back soon. We sure will miss them, as many of my friends in town have pointed out also. They have quickly become part of our community here, and have made many friends. They have been such a tremendous help, it's going to be quite and adjustment after they leave. I know Hannah will miss them also. Thanks mom and dad, we love you!

xoxo Kim

Thursday, April 26

Today Hannah went to school without mom! She did have her aide with her full time, but she was happy allowing me to leave her at school, just like the old days. She is just thriving at school, and even asks to do homework at night. She's a superstar! She is a bit behind the class in certain concepts, they are studying the water cycle right now, but she doesn't seem to notice so much and keeps on working. Tomorrow the class has their "author's tea" where they recite poems they have created, illustrated and published. She is very excited. If I can make it through without crying like a baby, it will be a miracle.

We met with Hannah's oncologist this week. Hannah will be receiving treatment at Schneider Children's Hospital in New Hyde Park on Long Island. We will be using a slightly different protocol from Dr. Allen at NYU, administered by Dr. Atlas at LIJ (Schneider's). Dr. Allen's protocol uses a slightly different method for one of the drugs, which may help to spare her hearing. She goes next week for baseline audiogram and blood work, then starts chemo probably a week and a half after that. The doctors informed us that Hannah will not be able to attend school at all in the next 9 months, and possibly longer, but we're still looking into that, and hope that some school is possible.

So for the next couple of weeks we are trying to have as much fun as possible. Hannah went to girl scouts this afternoon and had a great time up to her elbows in dirt at the greenhouse. Actually, the dirt covered every part of her, including her bald head, but who cares. For right now, she needs to be a kid without any worries.

xoxo Kim

Tuesday, April 21, 2007


Hannah's first day of school was yesterday, Monday, April 20th. By the time Monday came around, she wasn't even nervous, she was ready to go back. The children in her class were absolutely wonderful. They were all so welcoming, and just happy to have her back. we started off the day watching the Charlie Brown video "Why, Charlie Brown, Why?" about a girl who has luekemia. Hannah and I watched the video many times in the hospital, so we were already familiar with it. Never once did I cry during the video in the hospital, but watching Hannah watch the video was another story. She was so calm, and enjoyed the video with her class. Then, we had a discussion, you can see us here in the picture talking with all the kids, about Hannah and our "adventure" over the past few months. I must say that these kids are amazing. They made comments mostly about how they missed Hannah, and how "I was so excited over the weekend to see you I could hardly stand it". By today, day two, it's like Hannah was never even gone. I'm so thankful for the joyful acceptance of youth. They have made her transition back to school so easy, it's more than I could ever hope for.

Tomorrow Dave and I meet with another oncologist regarding Hannah's chemotherapy treatment. I'll have more information then about when she starts and what it entails. Until then, we're just gearing up for the Yankees Boston series in NY, hopefully a better outcome than last weekend!

xoxo Kim

Saturday, April 21

Today is Saturday, beginning of our first weekend at home. Today is the first day I have really felt a dramatic difference in being home. Normally at the hospital, we had no radiation and only 1/2 hour of therapy on the weekends, and then we were free to leave the hospital for the day. We did have many fun adventures in Boston, but it's not like being at home on a Saturday, where you can go out or stay in and do nothing. It's very relaxing, and the first time I have noticed such a big difference in being home. Hannah went to PT for her first evaluation on Friday, and they were impressed with her strength and attitude. She has work to do, but has made great progress to date. Hannah will also attend school beginning Monday for half days. She is excited, but at the same time, apprehensive.

We had a welcome home party today for Hannah with her closest friends and family. She was so excited, she sat upstairs on the deck and greeted everyone as they arrived. This is a picture of Hannah and her friends as Hannah made her "wish", wonder what it was because I certainly know what mine was. And another picture of all of Hannah's friends and family with her welcome home cake. Her friends are so wonderful, they are supportive and encouraging and just happy to have her home.

On another note, our boys better step up and pull this one out. The Yankees have lost 2 out of 2 games so far, and we can almost hear all of our friends from Boston cheering all the way from Long Island. One more game tomorrow to save face, let's go! XOXO Kim

Thursday, April 19

Yes, we're finally home! Our trip home was so much different than the horrible trip up to Boston. Hannah fell asleep about 15 minutes outside of the city, and awoke in the drive thru of McDonald's asking for a happy meal. She was so excited as we pulled into the driveway. Colby, Grandma, Grandpa and Riley were awaiting our arrival with ballons and banners everywhere. Hannah was squealing in delight as we got of the car and started up the walk. Colby has been hugging and hugging her since we got home and I thought Riley was going to flatten her he was so excited.

Since we have been home she has been quite mobile inside the house. She can negotiate from one room to the other without any problems, there seems to be enough to hold onto to help her keep her balance. I did notice her trying to whip herself around the corner into the hallway and almost fall down, so I just try to remind her to take it slowly. She really enjoys being able to walk somewhere by herself.

Today was our first full day home and she was busy from the time she woke up. She started with 2 hours of horseopoly (after Grandma's pancakes), then it was cards and a puzzle and 2 minutes of the Yankees game, then more cards and crafts and quite a bit of time outside. It was very nice outside, so she enjoyed a couple hours outside.

Tomorrow she has her first physical therapy appointment and evaluation. Monday she will go to school to meet with her class, and possibly stay for a half day of school. She will continue with half days as long as she feels up to it. As the time goes on, she will feel more fatigued from the effects of the radiation, even though it is over. We're told that will most likely hit her the hardest about 30 days post radiation, and last about 2 weeks, just in time for her to start her chemo. We're just taking it day by day right now, and will follow her lead on how much she can and wants to do.

Good to be home, that's for sure...xoxo Kim

Tuesday, April 17


BYE BYE BOSTON! Hannah and I spent last night planting, yes planting, in our room. We had Yankee plastic hats- you know the ones you can buy ice cream in at the Yankee games, the same ones most people throw away, but we keep for fun things at home like this! We planted the hats with flowers for our friends here as a final going away Yankee gift. There was dirt everywhere, but we had fun doing it together. Hannah also signed a Yankees poster and we hung it in the gym for everyone to find in the morning. It's not difficult to spot amongst the sea of Boston posters and signs. Hannah really got a kick out of us secretly sneaking into the gym tonight after everyone had left and hanging the poster.

Hannah will get right back into the swing of things when we get back home. We are going into school on Friday morning to meet with her class. The meeting was initially set for me to go in and watch a Peanuts video about cancer with the class, and answer any questions they may have. However, Hannah and I discussed it and she asked if she could come also! We are looking forward to seeing everyone again. If everything is in place, Hannah should return to school half days next week sometime. Joe and Colleen-we'll have to tell you about the mysterious way your package showed up last Friday night, no one seems to know how it got here, but it was waiting on Hannah's bed when we arrived back late that night. We loved it and can't wait to see you both!

Hannah will continue with her physical, occupational, and speech therapy at home. We are anticipating that she will begin her next phase of the treatment, her chemotherapy, in about a month. However, we still do not have an oncologist lined up for Hannah, as we received word today that our insurance company has rejected our 2nd request for a doctor. We are still working on that one.

On the eve of our departure from Boston, we say goodbye to all of our new found friends (some pictured below), many of whom are now life long members of our family. Brian that includes your wonderful father, Mr. Griffin, also a proton patient. He has kept us entertained with his lively personality and daily change of hats-of course his hat today was the best-Go Yanks! What a beautiful spirit he is!

Tomorrow we will be able to say, TREATMENT #30, WE'RE DONE!!!!!!!

XOXO Kim and Hannah




Monday, April 16

Who is this Boston Girl?

Treatment Day #28. Our countdown only has 2 days to go. This does become routine after this long, so coming home will mean a change in that routine (however strange that may sound). There are so many wonderful people here, therapists, doctors, nurses, other patients, etc. and we will really miss everyone. We have met some other patients here who have become good friends, and who we will cherish for a lifetime.

On our last weekend, Dave came up on Friday. Hannah wasn't really feeling that well this weekend, but we still got out of the hospital each day. We went to browse the mall with Hannah, a great therapy session since she spends most of the time walking and pushing her wheelchair. Saturday we went to the Museum of Natural History at Harvard, what an amazing place! Here is a picture of Hannah with a giant turtle shell, it was huge! We relaxed at the hotel and Hannah got to swim again. It was very busy in Boston this weekend, since so many runners and their families were in town for the Boston marathon. I didn't realize that so many people run for a specific cause to raise money. A man came up to us in the mall who noticed Hannah and could spot her as a surgery patient. He was running for Boston Childen's hospital here in Boston, last year he ran the Chicago marathon for Chicago Children's. His son had a brain tumor, a bit different from Hannah's, when he was 5 and is a happy 8 year old now. So nice to hear.

Our love and thanks to all of you again for all of your prayers and support. Kim