Friday, March 30

Here is a picture of Hannah in her room at her wall of art. The nurses call her room the artist room, now you can see why. You may not be able to see it, but Hannah has her Yankee shirt on, and this morning she was wearing not 1, but 2 Yankee hats. She gets a kick out of all the comments she gets from the Boston fans here. It's that time of year, everyone is gearing up for opening day and Red Sox baseball.

Treatment #17 today, it feels good to be on the downside of the mountain, but we are beginning to see the cumulative effects of the radiation. Hannah has developed burn spots, which are raw spots on her head where the skin is thin from the large doses of radiation. I liken it to getting a bad sunburn at the beach over and over, until your skin just starts to wear away in certain spots. Her head itches too, so then she rubs it, and that's not good for the whole situation. They gave us some new cream today, and assured us that this is normal. We were told when we started that most kids develop some type of skin reaction and then have to have a break from the treatment. We're hoping that doesn't happen since she can't really afford much of a break due to the kind of tumor Hannah had. Again, we just take one day at a time and hope and pray for the best. It's Friday, so we have a 2 day break from the radiation and 2 days to heal. She is doing so well with her boost treatments. I take her in, and within 20 minutes they are wheeling her back out, smiling! It's such a difference from before. I'm so proud of her.

Hannah is just beginning to realize that after radiation when we return home, she isn't done. She asked me if they were going to take her port out before we left Boston, so we talked a bit about the chemotherapy and that she will need to get some medicine through her port when we get home. I don't even know that much about the chemotherapy yet, so I can only tell her a little right now, and that's all she needs to know. Again, one day at a time, hope and pray for the best.

xoxo
Kim

Wednesday, March 28

We are halfway there, today was Hannah's treatment #15. Hannah is doing great with her new phase of treatments. The first day of no anesthesia was a bit nerve wracking, just getting used to the adjustment of the mask on her face, and exactly how it should fit. Hannah and I were just a bit nervous since we were used to the old system of going in and falling asleep. Now I get to stay while they position her on the table, adjust everything, put her mask on and strap it down. There is really no room for error, since the mask fits very tightly to ensure there is no movement during the aiming of the beam. If her head would move and the radiation accidently was off even by a slight amount, it could damage her hearing or her growth or her cognitive ability. Since she is awake for these treatments, she listens to a book on DVD, right now it's Felicity, the American Girl.

She is having a bit of a problem with nausea. I have learned not to push her to eat, otherwise she just throws everything up. She does take medicine twice a day to combat it, but the area of her radiation is at the area in your brain that controls the nausea center, so it will continue to be an issue. We also have to be careful about certain foods, even smelling them now can cause her to get sick.

She did take part in a cooking class they held on Tuesday. As part of therapy, the kids organize different events. Hannah put together a scavenger hunt last week and handed them out for people to complete. Two of the older kids put together this lunch time cooking class. Here is Hannah helping with making chocolate chip cookies. Her occupational therapist, Sophia is with her in the first picture. They made hamburgers, french fries and cookies. Eveything came out great, but Hannah got sick and didn't eat any of it.


As you can see her hair is pretty much gone now, just one small patch on top. Nicholas brought her about 12 hats and other hair bands from the Jimmy Fund yesterday. He was so excited about giving them to her. One of the knitted hats has a little purse to go with it, and even though the hat is too small, that's the one she likes the best. She doesn't wear them a whole lot, unless we are going outside usually, so she doesn't really care about the hair.

Today she made a calendar to hang up in our room. She has really been having issues with when we can go home, so I suggested she make a special calendar that she can hang up and mark off the days. She heard me tell someone we have 3 more weeks of treatment left, so she had been telling everyone she is going home in 21 days. We have 15 more treatments, which is 3 weeks, as long as all goes smoothly. We marked off day one today, and she was very happy about it. It seems to be calming her anxiety about missing home a bit. She also has any visitors marked. Colby and Dad are coming up this weekend along with special visitors Diane and Abby. Then next weekend Grandma and Grandpa are coming for a few days with Colby during spring break. She so looks forward to visits, especially from Colby. xoxx Kim

Monday, March 26

Today was treatment #13 and hopefully our last day of anesthesia. Tomorrow morning we are still NPO (no food or water) before treatment, just in case something happens and she has to get the anesthesia, but we are not planning on it! We had a "no more anesthesia party "here today. Hannah handed out invitations and we had cupcakes and fruit and lots of fun. You have to find reasons to celebrate even the little things here.

This morning Hannah woke up nearly all of her hair gone. If her scalp didn't hurt so much from the radiation, I could comb it all off, but it is very sensitive. We tried to shave it, but that hurt too much so we cut it into a mohawk (sort of). The first picture here is just after she woke up, and the second picture is after our cut! I feel like this room is one big hairball. But, as you can see, Hannah was having fun with it all. She is more bothered by the hair in her mouth and all around than she is by it falling out, so that's good.
Yes, that brown clump behind her in the picture is her hair. We have been busy also making a video for Hannah's class. Hannah wants everyone back home to have an idea of what we do here everyday. We're trying to get all aspects into the video, including her therapy, her proton treatments, her room, her friends, etc. She is really homesick, and missing school and all of her friends and her everyday routine so I'm hoping this will help her. I wish there was a way to reply to all of your posts here on the website, but there is not, so please know this-Yes, it's Nicki, mom said no worms at the house, already have lots in the garden to dig up, favorite Yankee is Derek Jeter, I would love to be your webkinz buddy, my name is taffycat5, Nicholas is doing well, he is starting to walk with my old walker, but he follows me around a bit too much, my favorite color is red, I listen to "Felicity" on tape, and next will be Little House on the Prairie, Grandpa you now owe me $14, and counting, and I MISS ALL OF YOU TOO!!!

XOXO
Kim and Hannah

Sunday, March 25

Hannah has had an eventful few days. Thursday she had her practice session for her shorter treatments beginning on Tuesday. Her nurse Rachel and I were allowed to stay in the room with Hannah since it was only practice. She was laying on the table, they put on her mask, then it bolts down to the table, so that she is not able to move. The mask is quite tight since they want absolutely no movement during the radiation treatments. We listened to her book on tape and she did great (much better than I would have). So, beginning Tuesday she will no longer to have anesthesia with her treatments. This means we don't have to restrict her eating in the morning and she won't have the recovery time after treatment like she does now. We are having a party after treatment on Monday to celebrate-NO MORE ANESTHESIA!!

Dave came up on Thursday so that I could travel home to see Colby in her first school play. Here is a picture of Colby as a gingerbread cookie in Hansel and Gretel, it was wonderful! We also met with our oncologist on Thursday who said Hannah is doing great! So great, she may start her chemotherapy soon. How is that for a prize? We know it has to start sometime, you can't avoid it, so we'll be ready when they begin.

On Saturday morning Hannah got a visit from Uncle George and Aunt Mary Katherine. She likes to have visitors, and was happy to see them. Then, Dave and Hannah went to the Boston Bruins/NY Rangers Hockey game. It's only a short walk from the hospital, and Hannah was excited to get out, and sit in the special wheelchair section. I came back up and Dave headed home on Saturday afternoon, to go see Colby in the play on Sunday. Hannah and I took a trip to the Aquarium today again. We saw the harbor seal show, the penguins, the tank divers, the 3D IMAX on the Deep Sea (which was very realistic and a bit scary too) and had lunch out. I tried to entice her with fish shaped ravioli, but after 4 bites we were done. Her appetite is really waning now, so we'll see what they say at treatment tomorrow.

To wrap it up, here is a picture of Hannah with Audrey, the childlife specialist at Spaulding. She runs the playroom, helps with things like anger management, sadness, etc. and really just plays with the kids to help keep their spirits up and make sure they stay busy. Hannah absolutely loves her. Last week they painted her fingernails and toenails 20 different colors. When we went over for radiation treatment, they had to choose a finger which wasn't painted blue. They told us the machine that reads her pulse couldn't read it! This is a picture of Hannah and Audrey and their syringe painting. What an artist! What a mess! But lots of fun too!XOXO Kim and Hannah

Saturday, March 24

Just a quick post with a few new photos. Hannah's hair is really coming out in clumps now, I would imagine in another couple days it will all be gone. She wanted a hair cut tonight (like Colby's when she was 4 years old what she requested). She said it was falling out anyway, so she wanted it cut. So here are a few pictures with a few friends and her beautiful new prayer shrug. She doesn't seem to mind that much right now about the hair (other than she said she looks like a boy now), so we're making it fun, cutting it however she wants to!

And here is her second haircut of the day, she wanted even shorter bangs. She seemed to like this much better! Hannah and I just finished reading the new comments on the blog, thank you all so much. More from us tomorrow,
xoxo
Kim

Wednesday, March 21

Hannah showed us all today how she can walk "on her own" with her therapist behind her and not really touching her. As she continues to get stronger, her balance will continue to improve also. She was oh so happy this morning!

Today was treatment #10. The doctors want us to come early tomorrow for a practice session. They want to practice and see if Hannah can be still with her mask on for a whole 20 mintues. If she can, she won't have to have the anesthesia when she starts her boost treatments (only to the tumor site) next Tuesday. Hannah seemed very nonchalant about the whole thing, even when they brought her mask in and had her put it on today. It's made of a thermoplastic, which is like a very thick cheesecloth. It was made especially for her head shape, they formed it to her face during her radiation planning when we first arrived. It's like a hockey mask, that's what I tell her. She doesn't mind it at all (yet).

I tried to find a couple pictures online of this whole process. The first picture below on the left is a picture of a girl in her mask on the treatment table. The middle picture is a more close up photo of the mask itself, and the last picture is the treament room where Hannah is every day. This treatment room is only part of the proton process, the room where the beam comes from is very large, over 3 stories high. The beam is then tunneled into the three treatment rooms they have here, and they can all function simultaneously. They call our room the monkey room-you can see the monkeys hanging on the right. The picture doesn't do the room justice, it's huge and very crowded when we go in every day. There are computer monitors everywhere, and usually about 6 people in the room besides Hannah and I. I put Hannah up on the table, her IV is already hooked to her port, and the anesthesiologist immediately starts the anesthetic, so she is usually asleep within about 20 seconds. The table she lies on extends out into that big circular area, so we always have to be careful not to fall in. I'm allowed to hold her hand and give her a kiss as they put her to sleep, so I always have to be conscious not to fall in or accidently bump anyone else in.

Today Hannah wore her Yankee hat to treatment. As you can imagine, it causes quite a stir in Red Sox territory, but that is why she wore it. Jim-one of the technicians told Hannah that he was going to tattoo her with "B"'s all over her body while she was sleeping. She actually does have several small dot tattoos all over her head and back, so that they can position the beam properly. When she came out Ron-another technician had drawn a "B" on her left hand. Of course we washed it off immediately and plan to replace it tomorrow with NYY drawings on both hands so they will be noticed when she is there tomorrow. She really loves all these people here.

xoxo
Kim

Tuesday, March 20

This is Hannah and her friend Nicholas. Nicholas is our next door neighbor here. He has childhood acute lymphoblastic leukemia (also called ALL). ALL is a blood and bone marrow cancer, the most common form of leukemia in children and the most common kind of childhood cancer. He does not undergo radiation right now, just the chemotherapy, and will for quite a while. He is such a sweetheart, just a very kindhearted little boy. He can't walk due to the effects of the chemotherapy, but he is great in his wheelchair and Hannah gets motivation from watching him move around the hallways.

Other than leukemia or lymphoma, central nervous system (brain and spinal tumors) are the second most common type of cancer in children. Each year, only 2200 children in the United States are found to have a brain tumor. About 3 children out of every 100,000 children will have a brain tumor. Medulloblastoma, which is what Hannah has, is one type of central nervous system (brain) tumor, a highly malignant and fast growing tumor. Medulloblastomoa constitutes 15-20% of all childhood brain tumors, making it the most common type of malignant brain cancer found in children. There are a lot of factors that are considered when determining survival rate, and based on Hannah's tumor and risk factors, the survival rate is 70-80%.

I think I can quote these statistics in my sleep now. Sometimes they just sound horrible, but you want to know them anyway.

XO
Kim