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

Monday, March 19

This is a picture of Hannah with the amazing horse cookie bouquet that she got from her cousins Kate and Lynsey, and her Aunt Rosemary. We brought them with us up to Boston to show everyone also. After about 5 weeks, she has decided that she wants to eat them. They were probably very good when they were fresh, but I have to break them for her now so they don't break her teeth. She loves them though, so if she'll eat them, I'll let her have them.

Today was treatment day #8. Only 5 more full spine and head treatments, then onto the "boost" tumor site only of the higher radiation. That is my next goal here, since then the anesthesia and time for each treament will be less and maybe she'll start feeling better afterwards. Hannah said tonight that she likes going over for the "beam", it's fun there, she likes going to sleep and just she "loves that place". It's strange what you come to appreciate in this situation. She is asking quite a few questions now about her surgery and this whole thing. She does remember quite a bit from Stony Brook and that timeframe, but I hope that will fade as time goes by.

Besides her daily proton beam treatment, Hannah receives daily physical therapy, occupational therapy, speech, childlife interaction and now tutoring. Today she began working with Andy, the tutor here for all the kids. He is a young, energetic guy, very "Boston" hip, and a favorite with all the kids. They have waited until now so as not to overstress her, and to be sure she was physically ready to keep up. Now I see why they waited. Tonight about a half hour after all her therapy and tutoring, she started crying that her eyes were dizzy, and she had trouble seeing. She has already had problems with double vision and slight nearsightedness, which is common following this type of brain surgery. The problem has been intermittent, so they have not treated it yet, just watching it. After a bit of rest, listening to some of her new book on tape (great idea cousin Sam) her eyes felt better.

xoxo

Kim

Sunday, March 18

This is Hannah with Miko, a Caring Canine that visits kids in the hospital. Miko is a black, long haired 62 pound lab/chow mix, born in Feb. 2000. Hannah really enjoyed her visit, she was such a sweet dog. They have a different dog visit every Sunday afternoon, this is the first Caring Canine we have seen since we've been here. Hannah also got visits from other dogs while in Stony Brook hospital and St. Charles, but she is finally feeling well enough to enjoy it a bit.

We had a good weekend with Colby and Dave here. We went to Dover Saddlery with Colby on Saturday for Colby's birthday. Hannah does enjoy getting out, but tires very easily. We tried to stay out and away from the hospital as long as possible, and returned about 7pm. We snuck Colby in our room for an overnight visit (at least until 10pm when the nurse noticed an extra body). We found out that Colby will be allowed to stay, we just have to set it up ahead of time. She was able to stay Saturday night, and we stayed up watching movies from my mom and dad's friends Ron and Vicky (thanks for all of those!). We finally went to bed just after 11pm, it was like a sleepover.

Sunday morning after therapy the girls and Dave went up to the top of the parking garage to fly Hannah's toy-day-Friday airplane. They had fun, but it was COLD! Dave and Colby left shortly after noon. It's always hard when they leave because Hannah so wishes we could go with them, out of the hospital. Mondays are tough, since Hannah has to be accessed and then it's a long week of treatment every day. She knows when I put the numbing cream on on Monday morning, that is what will happen.

So, we're spending the rest of the day trying to keep busy and pass the time. We went outside for a bit, watched another movie, Hannah ate some chips and salsa (yeh!). Now that I know how to post pictures, I'll keep posting them often, I know everyone enjoys seeing Hannah here. Thanks so much for your posts, we read them every day together!

xoxo
Kim

Happy St. Patrick's Day

Happy St. Patrick's Day everyone! We're both wearing green!
Love, Hannah

Friday, March 16

In honor of St. Patrick's Day, we are dressed in green today to celebrate with the nursing staff, and the proton staff. Hannah was handing out stickers, and putting them on her wheelchair. Today was treatment #7. We only have one more week and one day of the full spine and head treament, so we're counting down those days. Once that part is over, her treatments will only be about 1/2 hour in length which means less anesthesia, so maybe a better reaction afterwards.

Yesterday and today Hannah had some nausea in the morning before her beam treatment. When we arrived for treament yesterday she did throw up, then it became a question of whether or not they would treat her. Since she is face down during treatment, and her face rests in this mesh mask made for her, it's dangerous to be on the anesthesia if there is a risk of vomiting during the treatment. They gave her a couple anti-nausea meds and she perked right up, so they ended up going ahead with her beam treatment, because she really shouldn't miss a day. Today she had the nausea again, but no vomiting. They think it's probably just one of the side effects from the radiation.

Her appetite is also still dimished, but they are not treating it with meds yet, because her weight has remained stable. Today after her treament, she simply refused to eat. I finally ended up bribing her to eat, and it cost me $2.50 for lunch and $2 for dinner. She tried to get me for snacks too, but I rejected that for fear of becoming broke. She likes to browse the gift shop for things like little trinket bath toys and I like it also because it gets us out of the room for a while.

We're excited that Colby and Dad are coming tomorrow. We hope they're coming anyway. The weather today has been very bad, it started snowing about noon and hasn't stopped. Most of the day you couldn't see outside at all. It may be turning more to rain now, so we'll see what tomorrow brings. Hopefully, the ferry service will still be running and we get to see Colby and Dad!

Today was toy day Friday. Our nurse, Rachel (who is just the best) picked out some horse items especially for Hannah, and today Hannah chose an airhog flying airplane! We spent a good 30 minutes tonight flying it in the hallway with Nicholas, our next door neighbor with ALL (leukemia). He is just the cutest little boy, he is 6 years old, and undergoing chemo right now. He got the biggest kick out of sharing it with Hannah. He is always bringing her little gifts, today it was a pinwheel, yesterday a NY Yankees baseball card since he knows she is from New York. Hannah also gets de-accessed on Fridays, so it's nice to have the tubing off of her port. Fridays are good days all around.

We heard today that there is another child starting proton beam on Monday with the same diagnosis as Hannah. This child is 8 years old. I feel like we're the seasoned old timers now. Our first day I felt like anyone could have picked us easily out of the room, the family that looked scared and uncomforable and were crying by themselves, unable to talk to anyone else in the room. It's not easy now, but it is easier than it was. We usually see the same familles, and the same adults there for treatment, because our times are pretty consistent. I hope that this time we can be the ones to provide a little comfort to the "new family" as they start their journey also.

XO
Kim and Dave

Wednesday, March 14

Hello again from Boston. Today is Wednesday, and Hannah had treatment #5, only 25 more to go. We're starting to see some of the effects of the radiation. Her appetite is dimished already. This is exacerbated by the fact that she can not eat in the morning due to the anesthesia. Our treatments normally begin between 11am and 12pm so by the time we're done and Hannah is calmed down enough, it's 2 or 3 in the afternoon. She hasn't eaten all day, but still doesn't have an interest in eating. The doctors say she is dehydrated, but her weight is stable, so that is good. So for now we're trying to find things she is interested in eating and drinking, even if that means french fries and soda for dinner. At this point it's all about the calories.

Her rehab work continues to go well. She can stand now on her own for a few moments, and she loves to show that off to everyone. They have been working with her on the regular walker, without the arm supports, and she is doing great on it, but she's not quite ready to do it on her own. She likes to show me how she can just pop up off the bed onto her feet. I am constantly telling her now to "be safe" and "wait for me". She just wants to do it all herself, which is wonderful, but safety is key also. I just envision her trying to pop off the bed while I'm down the hall getting the nurse, and I return to find her flat on the floor. We visited her oncologist today after beam treatment, anticipating the start of her chemotherapy. We were a bit surprised to hear they would like to wait to begin chemo, to allow Hannah to continue to get stronger through rehab and radiation. As soon as they begin the chemo, that begins to compromise her body in many, many other ways, and would definitely impede her progress with rehab and getting stronger. So, as this point they are holding off on beginning the chemotherapy. There has been no evidence to show that beginning the chemo within the first 6 weeks (while getting radiation) is more advantageous than waiting. It's almost a relief in a way, since we have been reading about the chemo drug she would have received and it's very strong and scary stuff.

Colby came up last night with Dave to celebrate her birthday. Colby turned 10 today. We celebrated last night with cake and presents at the hospital. This morning Colby came to join Hannah for her therapy, which Hannah loves. She is so happy when her sister is here visiting. Then we all went over to the proton center for treatment, and Colby got to see the proton beam room, which was in her words, "scary". It's just so big, it's overwhelming. Unfortunately, Hannah still wakes up from the anesthesia in a very agitated state. We see some other kids walking out eating and talking after their treatments with anesthesia, but we were told today that they are on an entirely different treatment and have a completely different diagnosis. Hannah is getting a lot of radiation.

We're awaiting the tooth fairy tonight. Today the anesthesiologist pulled Hannah's loose front tooth, since it had become pretty loose, and therefore a danger during any anesthesia. Hannah didn't seem to care, and has been quite happy with her new appearance. She wrote a note to the tooth fairy that she was in the hospital, but she told me that she wasn't putting anything in the note about what she would like to receive from the fairy, because then you are certain not to get it.

Many people have asked about where to send cards or things for Hannah, so I'll post it here. It's best to send anything directly to our home address, and Dave will make sure it gets up to Hannah. She loves hearing from everyone, and I always read her the comments on this blog. She really gets a kick out of everyone commenting and saying hi! She has her own area on the blog, but she's not quite ready for posting just yet.

My parents left today and are back in Indiana. It was such a tremendous help having them here, I can't even put into words how much they have helped us through all of this, not only with emotional support, but just by giving us the peace of mind knowing that Colby was home and where she needed to be, with everything in order. Thanks so much to mom and dad, we love you!

Thanks to you all for your ongoing support and your comments. I think Hannah needs to feel that connection with her friends and family, since being here you feel somewhat detached from your old life. It makes her happy to know that her friends are still there, and she has that bond with them. I know we need it too! If you would like to take a look at the Spaulding Rehabilitation hospital where we are, you can take a virtual tour at this link, it's amazing how true to life the tour is, it gives you a good idea about accomodations and life here. You can click here to see the tour.


xoxo,
Kim and Dave.....and Hannah

Sunday, March 11

Hannah's weekend has been very eventful! Dave and I took her to the Science Museum, just a short walk from the hospital. It's an amazing place, with lots to do, even if you're in a wheelchair. We left after PT on Saturday, and were gone for 5 hours. Hannah didn't want to leave the place, declaring that "the hospital is so boring." We were happy to see her get out into the fresh air, and enjoy something else while she can.

Today we were off to the New England Aquarium, a short drive from here. She was so excited to be getting out of the hospital again. She wasn't feeling so well this morning, but after a short rest, we were able to get out and enjoy the aquarium. She had a very good time there, and we were able to escape this place for another few hours.

We're trying to get her out as much as possible on the weekends right now, because as treament progresses, we know she will probably be less able to get around so well and enjoy these things as much. She was pretty tired after our trip today because we took her new wheelchair, which has no headrest and doesn't tilt back, so she is working much harder while she is in it. She took a 2 hour nap today after we got home.

Hannah seems to have gotten to the point now where she doesn't wake up in the middle of the night crying with leg pain. For the last 3 nights she has been able to get through the night without any pain medicine. She still does wake up, but just briefly, and with a few adjustments, goes back to sleep. She seems to be needing the pain medicine less and less, which is wonderful.

As I'm writing this, Hannah is talking to me about her proton treatments, she just asked me if she needs 30 treatments. I never told her this, she said she overheard me talking to another mom about it while we were at the science museum (this mom has a 2 year old twin girl who needs 28 treatments). Hannah said, "oh great, we are only on 3". She is so smart sometimes, I just can't believe it. We're off to bed, preparing for our next week.

xoxo

Kim and Dave

Friday, March 9th

Today was our second day of proton therapy. This time when we arrived, the machine was not down so we were able to get in on schedule. Hannah was very excited to be there today for two reasons-first, it was toy day Friday, and second, they were going to take out her port catheter tubing for the weekend. They usually access them on Monday, and leave the needle on until Friday when they can take it out for the weekend. Also, each Friday, kids at the proton center get to pick out a toy from a large toy area. It's another way to make the kids feel comfortable coming for treatment. Hannah said last night that she had a hard time sleeping because she was so excited about toy day Friday.

So while your child is receiving treatment, you sit out in the waiting room trying to seem normal, like you're there for a dentist appointment. They must be able to tell the new parents from the ones who have been there for awhile. Today we met another family from New Jersey. They are here for their second round of treatment, a thought that never had crossed my mind before hearing this family mention it. Their son was diagnosed with a spinal cord tumor when he was 6 years old, 3 years ago. The docs could only get a portion of it out since it was right on the cord. When they tried to get him into proton therapy, they were rejected because they were only taking medulloblastoma cases (like Hannah) at the time for a special study. So, the family decided to go to Loma Linda in California. Loma Linda only had one pediatric proton radiologist, and right before they were to leave, the doctor was in a car accident, so Loma Linda was unable to take them in until the doctor recovered. The family told us they then called back the proton center here and basically begged them to take him in. They said that with regular radiation treatment, 97% of kids with this tumor are dead within 2 years. At this point, I was crying, but this mom was so calm and reassured. I guess you get stronger as you progress with this. The mother said they got their strength from their son, instead of the other way around. Her son had a successful treatment the first time around, and just recently developed another tumor deep in the brain, inoperable, so they are treating it with radiation. I guess I tell this story to show that sometimes when you think you're the only one with this terrible thing happening to you, and you're trying to figure out "why us", you realize that other people are also experiencing these problems, sometimes even worse than you and they made it through and that you can too.

Hannah had talked the night before about how she was going to try and stay calm when she was waking up (after anesthesia). Unfortunately, it hasn't worked yet, but we'll keep trying. We've had 2 days of therapy to date, and we're learning that you count your time here not in days and weeks, but by treatments. We have 30 in all, so 28 to go. It seems like an eternity, but you just continue to forge through as best you can. As the inital shock of this wears off, everyone goes back to their normal lives, but we're still here in this nightmare of a life.

Hannah is still continuing to progress. Her emotions seem to be calming down a bit, so she has less and less irrational outburts. They call is "posterior fossa syndrome", where the posterior part of the brain has undergone surgery or other trama and the patient undergoes an emotional and/or physical change. They become different in that they may be overly emotional at the slightest of things, or experience strong emotional outbursts at odd times. We did notice this with Hannah, and have noticed also that these have become less frequent and less strong in nature. It's all about time with the brain, and time is healing. Hannah is also experiencing some double vision and blurry vision, also as a result of the surgery. For now, the doctors are recommending we wait and see if the double vision perists, since this is a typical side effect of the type of surgery she had. So, we'll wait.

A special thanks to our friend Don, for his visit to us this week. Hannah enjoyed visiting with Don, and her new friend "Softie, the bear", and Don was here at a good time for Hannah :)

XOXO to all,

Kim and Dave

Thursday, March 8th

Hannah had her first proton radiation treatment today. We really didn't know what to expect. When we first arrived in Boston, they gave us a dvd to watch that is directed at the patient, so it is in very simplistic and straight forward terms. They show the making of the mask, what the radiation room looks like...it's huge...and how the whole process works. They also mention how the proton machine is very complicated and how it needs continual adjustments AND how it may experience down time. We figured that if they felt the need to mention this on the video, this was probably a reality.

So, we show up for our first radiation treatment, and the room is packed with people. We found out immediately that the machine is down, it had been down for an hour and they had the computer people there working on it. Our hearts sank knowing that Hannah's cancer is high risk, meaning if radiation and chemo aren't started and continued within a certain period of time, the tumor would come right back, and maybe in other places too in the brain or along the spinal cord. If the machine is down for more than a day or so, she will most likely have to receive photon radiation (which is the normal radiation treatment that destroys everything in it's path, at the site and beyond also). In December, the proton machine was down for 3 days and there were a couple medulloblastoma kids that had to have 2 photon treatments. I guess they figure that type of radiation is better than none at all with this type of cancer. After waiting for 3 hours (and Hannah had not eaten all day) we were told that the machine was back up, and they were going to take Hannah first.

For each treatment, they "access" her port, which means they stick a needle through her skin into the mediport which lies just under the skin. The needle has a catheter attached through which they can draw blood, and give IV fluids. Even though the area is numb from the numbing cream they put on, Hannah still doesn't like it because it's so scary for her. After she is accessed and the IV is started they take us all into the room with this HUGE proton machine. They have 3 treatment rooms here, and they are all busy full time Mon-Fri. These room house only part of the proton process, the rest is in another room that is even bigger. It looks like a stretcher that is extended out into the middle of this large rotating circle. There is a large "arm" that extends into the circle through which the proton beam travels. For right now, one of the most difficult parts of this is the anesthesia. Some kids awaken from anesthesia without any problems, but Hannah is not one of them. She is usually quite upset, and inconsolable. This usually lasts anywhere from 1/2 hour to 1 1/2 hours. I'm hoping it will lessen as time goes on because it's very difficult for all of us.

The radiation is cumulative, so the longer you go, the more pronounced the side effects become. They told us that most kids will require a break in treatment. Most likely at some time, she will require a break of a day or two. So, the exact amount of time we will be here is undetermined right now. We know it will be at least 6 weeks, beginning today, but in actuality, longer. She is still doing her therapy, most of it before treatment in the morning, so it has been a little bit less lately. Hannah is the oldest of the anesthesia patients, the others are 1 and 2 years old! I was so surprised to hear that. With regular radiation treatment, they won't treat children under 3 years of age, due to the damage it causes to their little bodies. There are 6 anesthesia kids and 8 non-anesthesia kids, a total of 14 kids on treatment right now. Unbelievable!

Love to you all,
Kim and Dave

Monday, March 5

We spent our first weekend here at the Spaulding Rehabiliation Center. Hannah really likes it here, and is happy to go to therapy. Each day during the week, she receives physical therapy and occupational therapy as well as speech therapy. At St. Charles, the therapy was difficult, and at first she spent the entire time screaming or crying. But here, since she is progressing and her brain is healing from the surgery, she looks forward to the therapy. She also feels safe here, since they did not give her a "shot" when we arrived she feels like she can trust these people not to hurt her. The staff here works in close conjuntion with MGH and the proton center, so that they coordinate things like blood draws so as not to continually traumatize the kids.

My parents came up this weekend with Colby. Hannah was so excited for their arrival, to show them her new "tricks". She wanted to show them how she could walk by herself with the walker, stand by herself for a bit, and sit up by herself on her bed. She in fact sits up and can swing her legs off the side of the bed so well that I have to remind her to wait for me to come and help so that she doesn't try to actually jump down off the bed. She is getting stonger each day. Her leg cramps have been calmed a bit by a new drug she is on. The drug is actually an anti-anxiety drug, and seems to calm her quite a bit while relieving the continual pain she is in with her legs. She can concentrate more on her rehab work, and can spend quite a bit of the day pain free. She still awakens during the night with cramping, and spends about an hour or more calming down and trying to get rid of the cramps. We have watched some interesting shows lately at 3am, which no one would normally let their children watch. Even I am learning some new things! We still wish they could find the source of the leg cramps so that they could work on "curing them", but for now at least this drug provides her some much needed relief.

Today Hannah went for an MRI (she calls them her FBI's). Together with her CT scan from last week the doctors will prepare her proton beam. They accessed her mediport today for the first time, and while it was scary for her, it was so much better than an IV, which she is so scared of. This port is pretty amazing. Using numbing cream, Hannah really doesn't feel anything as they stick a needle in. The port was inserted at Stony Brook, and is under the skin on her upper chest area onthe left hand side. She is so thin that you can see it, but not unless you know it's there. The port has a tube that is inserted into the subclavian artery so that it can be used to draw blood, and also for IV's (for anesthesia) and chemo drugs. As we start radiation and chemo, the doctors will access (insert a needle) into the port and leave it accessed for the week, so that she doesn't have to be stuck over and over each day. They will pull it on Friday, so the port is free then for the weekend. She wasn't happy with it today, but it wasn't because of the pain, as much as it was the fear of using it for the first time.

Hannah also had an audiology test today to determine her baseline hearing. The hearing is at risk from the radiation, but her chances are much much better with the proton radiation than with the standard photon radiation that she won't lose her hearing. They are able to better contain the radiation so that her hearing is less affected with the proton beam, another reason we chose proton therapy. We still have to go for her neuro baseline, to determine her cognitive abilities, and then we will be complete with her planning phase of this. Her radiation (and possibly chemo) begin on Thursday. Hannah is one of 6 children on therapy right now that will receive anesthesia with the treatment. She has to have anesthesia with the first 13 treatments, since they will be targeting her spine and entire brain and take over an hour. During that time she has to remain very still, so anesthesia is needed. After the first 13 treatments, the last 17 will target her "boost" area only, which is the area of the tumor only. This area will receive a higher dose of radiation, but the treatment is only about 30 minutes long. Hopefully she won't have to have anesthesia for these, but that is yet to be determined. Hannah is the oldest of the 6 patients with anesthesia, which is so hard to believe at 7 years old. She is scheduled for a 12pm timeslot, the last of the day since all the other children are younger. Unfortunately this means she can't eat or drink anything from midnight on the night before, which may not seem like a big deal until you think about not feeding your child anything until after lunch each day for three weeks.

While things continue to progress, we learn new things also each day. As you would like to think that from here it just gets better, what you really learn is that you just enter a new phase. This new phase could include many other new side effects like nausea, vomitting, rashes, loss of hair, and a host of other unpleasant things. This is just the radiation. The chemo also has it's own effects. This round of chemo Hannah will receive something called is vincristine, and is only a shot, not the iv chemo that she will receive when we get back to Long Island. That is whole other ordeal. What we are learning is that you take each day as it comes, and celebrate the accomplishments and deal with the new challenges. As long as there continue to be accomplishments, it is a bit easier to deal with the other things that come our way.

Our love and prayers back to all of you,

Kim and Dave

Friday, March 2nd

It is now Friday evening. Hannah has spent the last 2 days meeting with our team of doctors here at Massachusetts General. Dave and I knew from the first hour here that this is the place to be. We met with our pediatrict oncologist (who handles the chemo), our radiation oncologist (the proton radiation), endocrinologist, social worker, neurologist, neurosurgeon, audiologist, anesthesiologist, and still have a host of other doctors to meet with also. They do have it very well coordinated and set up for us though, so at least we don't have set up all these appointments. They all seem to always know where we are, which is kind of scary!

Hannah had her 2 hour CT scan and proton set up. They put her to sleep for everything, so she didn't have to lay still which they paper-mached her face into the Jason mask. They take the information from the head CT and combine it with the information from the MRI she will have done on Monday and the physicists come up with the exact positioning for the proton beam, including the measurement of the radiation around the tumor. She does have to have radiation to her entire spine and entire head, in addition to the posteria fossia, which is where the tumor was. They will give her higher doses to the tumor area, while giving the standard dose to the rest, to try and keep the side effects to a minimum. They try to keep the radiation area at the tumor site as small as possible to minimize what it will compromise and what side effects will occur. But they also want to keep it as large as possible to ensure this aggressive tumor does not come back. Hannah watched a video of the whole process on Thursday morning, including the making of the mask, the radiation and the whole set up process. Her one question was "do I have to have a shot (iv)?" She is handling this whole thing remarkably well. She is of course scared and apprehensive since she was basically taken out of her old life and plopped down into this new one where there is nothing but doctors and shots and blood draws and leg cramps and no friends and family and bad food and cancer.

Today we were admitted to Spaulding Rehabilitation Center, the pediatric rehab hospital which is a part of the MGH system. This place is wonderful. The doctors and nurses are upbeat and very nice. Hannah had 3 therapies already today and she really likes all of the therapists. She is doing so much better each day with her balance and coordination. She can now get herself into a sitting position. I came back into the room today and there she was sitting up by herself with this huge smile on her face. She also loves now that she can walk with a special kind of walker. She and I were walking up and down the hall tonight with me helping her and she just kept squeeling and laughing and saying "I'm so proud of myself". Her next question was "can we go home now?" She wanted to make a bet with me that she could walk from her doorway back to her bed with me just holding her hands (rather than supporting her from behind like I have been). If she won I would owe her a quarter. She did it-with me holding her hands and forearms and promptly announced that I now owe her a quarter. Even as she went off to sleep tonight her last words were "mom, you owe me a quarter". She is so happy here, and finally proud that she is accomplishing things she couldn't do before. As of this morning, she is talking in sentences and talking louder. Since the surgery, she would only whisper, which was a product of the surgery to the cerebellum as well as a fear. It's just great to hear her voice again and see her so excited and smiling!

As I'm typing this I can look out Hannah's window and see the downtown area of Boston. It's almost like they gave us this view so that we could look at it to keep our minds off of all this. It is a nice distraction, a 10th floor spectacular view of this city we wish we weren't in. Thank you again for your thoughts and prayers, they mean a lot to all of us.

Kim and Dave

Wednesday, Feb 28th

We did have a pretty good day today up here in Boston. We started our many meetings at the Proton therapy center and we are both convinced this is the place to be. These docs seem so organized and knowledgeable and intelligent about this whole thing. We are still working on getting Hannah into their inpatient rehab program, since our insurance is still deciding to accept it and there was no bed available for her anyway. There will be a bed available beginning tomorrow, so we hope the insurance will come through by then. For now, we are staying at the Holiday Inn right next to MGH. Actually it's a nice break from the whole hospital setting right now. We drove up last night, got here about 10pm. The trip was ok, Hannah slept about half the way and cried the other half. The night last night was horrible though. Dave and I don't got any sleep at all, and neither did Hannah really. I don't know what was different, but Hannah was complaining that her back hurt. We assumed it was from the lumbar tap, but when she started crying again today at the doctor's office, they didn't believe it was at the tap sight. Of course, you immediately think the worst like it's another tumor already on her spine. It really seems to be bothering her. The sent us for a chest xray tonight just to be sure this isn't a complication from the port. We should have the results tomorrow. She is sleeping right now, so I hope this lasts throughout the night. She has another full day of meetings and tests tomorrow. She has a 3 hour CT simulation during which they prepare her for her radiation treatments. They showed us today this mask that they make for her to wear during the treatments, and it looks like something from Friday the 13th movies. She didn't see it, so hopefully it won't be that scary for her while she's wearing it.

We have more meetings tomorrow also, will update again.

Kim and Dave