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

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

Wednesday, April 11

Treatment #25 today, only 5 more to go. Unbelievable and a bit scary too to think that this will be over next week and we can come home. Hannah is really amazing all of us with her ability to walk and dance and even run! She is not doing any of these things alone yet, but to see her run down the hall with her therapist is very exciting! Her doctors have all given her great reports, and we were told today that she is doing very well. Here levels aren't what they would be normally, but they are somewhat acceptable for a child receiving radiation treatment. They're trying to build her up as much as possible before she does begin her next hurdle-that's the chemotherapy. They attribute much of her recovery to not starting the chemotherapy yet, which tends to really set most kids back during their rehab. So it's been a blessing that she hasn't received the chemo yet, and that her body has been able to get stronger. Here is Hannah with one of her many mermaid creations-thank you Nancy for hours and hours of mermaid fun (and I'm kidding about the hours and hours part)!

Hannah began a bit of preparation with the therapists today for her release and return to home and school. This is very emotional for her. It's safe here, and all of the kids are in the hospital with something. Having no hair and being in a wheelchair is normal here, but won't be once we get home. Preparing her for that is what they are working on now. We are hoping that Hannah will be able to go to school after we get home and before she starts her chemotherapy, so look for her back in school very soon. She will need to continure with her physical and occupational therapy once we get home, and she will need to begin to prepare for her chemo, so her attendance may be somewhat sporadic, but we're hoping she can start half days right away!

Tomorrow we're all set for a field trip to the Atrium Mall with the other kids and therapists. They will have a mall scavenger hunt, take a tour around and just relax out of the hospital. They do theraeputic field trips every Thursday, so this will be our last one. We're both looking forward to a little time away for some fun, and the kids do have a good time together when they go places. They feel safe together, and they all really know each other now.

Here is a picture of Hannah with her new dog Scruffy. She loves this dog and has decided to take it with us around the hospital, outside of the hospital and even over to the proton center for treatment. You probably can't see the medical tape attached to Scruffy's feet, so that Scruffy doesn't get too dirty. It does seem to be working.

Monday, April 9

Treatment #23 today, only 7 more to go. All is still going well. Hannah has been having some trouble during the night, so we're just trying to work through that so she can get a full night's sleep without the trauma that she has been having lately. I think we have been really lucky that Hannah has done this well so far. I didn't think I'd be saying lucky about this, but we're realizing how much worse it can be. Hannah still has many issues to work through, and some other issues that may not even begin to surface until years down the road, but right now we feel fortunate that she has responded so well to the treatment and the therapy she is receiving here. Thank you all for your love and support,

xoxo Kim

Sunday, April 8

We had a wonderful weekend with everyone here. My parents stayed at a Holiday Inn a little futher from the hospital this time and it had a pool. Hannah was able to swim since her port was de-accessed and she is not on chemo right now. She had a great time. I, on the other hand, was a nervous wreck. I try not to treat her like she is any different, and say that she can't do things that other kids can, but it was so scary at first going in the water with her and seeing her swimming around. After I got over the fear I had that she shouldn't be swimming at all, it was a bit more fun for me. She acted like her old self, and even when another child came over to ask why she had no hair, it didn't phase her. We just said it all fell out, and the other girl said, "that's why my mom told me to wear a bathing cap, because my hair just falls out too in the water." Kids are so great that way, just so matter of fact about it all.

Hannah got to swim on Friday night, and Saturday as well. On Sunday after church our family went to brunch together. It was so cold in Boston today, walking outside was challenging! Hannah had a good time, even though her brunch consisted of bread with butter and soda. After brunch it was back to see what the Easter Bunny left us. He hid an egg for both Colby and Hannah, which they promptly found, so next year the bunny should be a little better at hiding them. Dad and Hannah finished off the Easter celebration with a game of catch in the hallway. We spent a great deal of time out of the hospital this weekend, which is very good for Hannah's emotional state. We can't stay anywhere overnight, so each night we are back here with her. After everyone left in this afternoon, Hannah and I spent a few hours making mermaids and purses. Only 8 more days of treatment, then we will be back home. I have noticed more spots on Hannah's scalp from the radiation, so we're just praying that she holds out for those 8 more.

We would like to say Happy Easter to all of our friends at home, and a special hello to all of our "Aunt Liza friends" all over the world. Not only is it fun reading your posts from all over the US and the world, but it is also a geographical challenge for us to find you! We're having fun with that too! We hope all of you had a peaceful and blessed Easter.
XOXO Kim and Hannah

Friday, April 6

Today was treatment #22 and a very busy day for Hannah. After treatment and therapy in the morning, Hannah had a neuropsych appointment with a neurological psychologist. This appointment was testing to provide a baseline for Hannah's cognitive abilities. She had a full 3 hours of testing including reading, writing, problem solving, math, and more. Research shows that whole brain radiation therapy, like Hannah had, is associated with cognitive decline. This is especially true in children below 7 years of age, who experience a very significant loss of function after whole brain radiation therapy, so Hannah is on the borderline. This was one of the reasons we chose proton radiation over traditional radiation, to hopefully minimize cognitive loss, among other things. She will be tested several more times in the next several years to monitor her cognitive abilities as compared to her baseline results.

After the looooong test, we came back to the holiday party at the rehab hospital. Here is Hannah painting eggs with Grandma and Colby. Boy was that fun! Here is Hannah's new dance partner, the biggest Easter Bunny ever! With straps on the feet that allow him to dance with Hannah, it is great and Hannah has really enjoyed him. Hannah is having a great time with all of her visitors! XOXO Kim

Thursday, April 5th

Treatment #21 today, now that sounds good. It seems that we learn a little more each day about Hannah's treatment. The treatment now is very quick. She is in the treatment room for a total of 20 minutes, sometimes even a bit less. Her actual radiation time is about 1 minute in total. She has 2 fields of radiation, both in the tumor (boost) area, and each get about 30 seconds of radiation. The rest of the time in the room is set up time on the machine to position her in exactly the right position to ensure the correct field of radiation. To be off by even a fraction of an inch could damage her hearing, or her growth or cognitive capabilities, or many other things, so they are very careful and measure everything precisely before the radiation is performed.

On a happy note, today we went to an Easter Egg Hunt in the healing garden. The healing garden is a very serene and peaceful place in the cancer center here. It's on the 8th floor of the building, on the roof, both inside and outside. It's really a very beautiful and comforting place, except for today when it was hopping with excited kids looking for eggs. We had a great time both at the hunt and at the party following in the oncology office afterwards. Here is a picture of Hannah back in her room with her eggs, including the golden egg!

After the egg hunt, Grandma and Grandpa showed up with Colby! Here is Grandpa with Hannah. We took them all on a tour, and went down to the 4th floor of the main hospital, to show them our latest find on one of our adventures-a mummy! The first operation using ether gas for sedation was performed here in MGH in the ether dome in 1846. The ether dome is a theater arena which was used for observation during this monumental surgery. In the ether dome is an encased mummy, an artifact given to the hospital complete with it's sarcophagus (mummy case) which is very elaborately painted. They also have all the tools used in the operation, as well as some other interesting artifacts. It is in the national historic register. After the tour, and a home cooked meal by Grandma, Hannah immediately had Colby engaged in card game after card game. Hannah is excited that they will be staying through the rest of the weekend.

Thanks again for you ongoing support, love and prayers. It is very comforting to us to continue to have so much contact with everyone, even though we have been gone now for over 2 months. It makes Hannah feel that she is still very much a part of things though the support of all of you wonderful people and that is very important to her emotionally. I wish we could attend the upcoming fundraiser for Hannah, but will still be in Boston. My mom and dad are looking forward to it though, enjoy!


Tuesday, April 3

Hannah and the clowns....clowns come by each week to stop by and entertain the kids. Hannah enjoys them and they make her laugh.

Treatment #19, tomorrow will be #20, so that's exciting. Still going well. I'm almost afraid to say it out loud, but Hannah has been off of her anti-anxiety drugs now for over 24 hours, and all is well. Now she just gets anti nausea meds, and one other fiber med. We saw another of our proton family today, a little girl who is two years old, she is a twin and had a cancerous tumor in her leg. She has been unable to get treatment since last week because of a skin reaction, her mom says it is pretty severe so they are waiting a bit for it to heal. They are only 3 treatments ahead of us. So, we're saying a prayer for Gabby and another prayer each day that Hannah continues on with the success she has had so far.


Monday, April 2

Treatment day #18. Hannah gets weighed in and checked every Monday at the Proton Center, and this Monday she weighed in a full 1/2 pound higher-cause for rejoycing!!! She is doing so well with her treatments. It is cumulative, so it seems that by Friday, her appetite has decreased, and her scalp shows signs of the "burn" marks, but by Monday, some of the burns have begun to heal a bit, and she is eating more. Here is Hannah with her Yankee tatoos. We received them today in the mail, special delivery to Hannah. We're not sure who sent them, so someone please let us know. She loves them and is very happy about antagonizing all the Boston Red Sox fans on opening day! Hannah's lost tooth still hasn't shown up (and I'm not doing alot about looking for it.) Here is what she left the tooth fairy last night, and I guess it worked since the fairy found her here. This is a picture of Hannah eating her pizza when she lost her tooth.
We were given a discharge date today from the rehab hospital. As long as everything goes as planned, and continues as well as it's going now, we will be coming home on April 18th. Alleluia, Alleluia!! It's so nice to have a date and a goal for coming home. It gives all of us motivation and hope. Home-you don't know how much you appreciate it until you're gone for 3 months. We really miss everyone and everything at HOME! My parents are back for the month of April to help out again. Thanks Mom and Dad, such a Godsend and such a big help. Thank you to everyone for all of your love and support!


Sunday, April 1

What an eventful weekend Hannah had. Here is Hannah with Colby and Abby. She had a wonderful time on Saturday when Diane and Abby came up along with Colby and Dave. Here is a picture of the three of them on our walk back from Faneuil Hall-it was a very nice day, and Hannah enjoyed spending the time outside. Even though she had to watch while the girls run around, she seemed to enjoy the time with them, and they really made her laugh. Hopefully soon, she too will be outside running and chasing squirrels with them. We walked along the Freedrom Trail, down by the Harbor, through the Boston Common and visited a very old and famous graveyard, where John Hancock, Benjamin Franklin's parents, Samuel Adams, Paul Revere and even Mother Goose are buried. Even the kids thought it was very interesting.

On Sunday, we walked over to Faneuil Hall again and visited Build A Bear. Hannah shared her gift certificate with her sister, and here they are with their creations. It was so nice seeing her enjoying the place just as the other kids did, and forgetting if only for a short period of time, about all this craziness, just being a kid again. It was so nice to see, and fun for all of us. We have never been to Build a Bear before, WOW! We had a quick lunch there too, where Hannah promptly bit into her piece of pizza, then swallowed her tooth. She has lost 2 teeth since we've been here.

Here spirits and her appetite seem to perk up on the weekends. Hopefully, we only have 2 weekends left, if all goes well and her treatments continue on schedule.