Welcome

to Hannah's blog. Hannah, a happy healthy 7 year old was diagnosed on January 30, 2007 with medulloblastoma, a malignant brain tumor.

It's new

I know it's new, and lots of junk still here, but it's a new template I'm trying out. Still lots of work to do, we'll see!!

Wednesday, September 17, 2008

Hannah and I made the trek into the hospital yesterday for her monthly checkup. It just seems like such a long way now that we are not making it every day or every week. So this time we did not head up to our usual clinic area, we went into the Brain Tumor clinic. It was so strange. We didn't know anyone-kids or staff. We were happy to see Rob (finger stick man) there waiting for us, he knew we were coming and wanted to stop in to say hi. It was nice to see a friendly face. Not all of the kids there are brain tumor kids...not all of them their are even cancer kids, I'm not sure yet whom they see exactly, it's more than just the Brain Tumor clinic.

We saw Hannah's oncologist first, who was very pleased with her overall status. He thinks her hand eye coordination is a bit better (of course he hasn't seen her in a while), and her gait remains about the same. After he left, we got up to go, but were told to wait for the neurologist to stop by. I guess at Brain Tumor clinic you see all the doctors you need to at one time (oncologist, neurologist, endocrinologist, psychologist, etc.) which is a nice idea. However, Hannah's endocrinologist is at Stony Brook Hospital, and we don't really care for the psychologist at Schneiders, so we are still trying to find one out by us.

So, then the neurology fellow came in to assess Hannah. She left to go get the attending neurologist, who came in and did the same exam that the fellow and the oncologist did (almost). It seems a bit redundant to me (and to Hannah), but we went with the program. Everyone seemed to think she was doing very well. She is still on the anti-nausea med in the morning, otherwise she will vomit (more on that fun fact later.) And there are the cognitive and emotional issues to deal with. And the bone density issues, and growth and hormone issues. Oh well.

We also saw Alyssa, the doctor's PA, who we see more often than the doctor. We really like her, so it was nice to see her too. Alyssa is sensitive to the fact that Hannah is actually in the room when speaking to me. It seemed like the other doctors acted like she wasn't there half the time, and asked me a few pointed questions about her cognition.

This morning I woke Hannah early for her very first chorus practice before school. She seemed fine, sat down to eat breakfast when I hear her coming quickly up the stairs...she had to throw up. I just hate that, not only for her, but because it's so reminiscent of the "old days" when she used to throw up nearly every morning. She was fine after that and ate some crackers on the way to school. I got a call early afternoon that Hannah was in the nurse's office with a headache. Now I really have deja 'vu. This is exactly what happened before she was diagnosed. I rationalize that it can't be, since she just had an MRI only a few weeks ago, but it's scary nonetheless.

A few more pictures to share, here is Hannah on Sunday, trying to get a Chickadee to eat out of her hand. We had just filled the bird feeders though, and I told her it wasn't the best time to try to get them to come to her instead. She last a while, no success though, take a look at the pictures.

Hannah in the garden
Look at me waiting for birds
Starting to get a bit tired here
Let's just try this fake Chickadee instead
This isn't working
How about we switch hands
Doing my own bird calls
I think I'm DONE!!



♥Kim

Sunday, September 14, 2008

September 13th, 2008 passed without much ado for Childhood Cancer. I agree with Peggy and Mimi and Kim (not me)...where is the outcry? Where is the awareness? Where are all the "pink ribbons"-you know, just a figure of speech. I was thinking about this while I was weeding the weed patch, I mean garden, today. I think that the breast cancer team has done one heck of a job getting the word out about breast cancer. You can't fault them for that, maybe what we can do is learn from them. We are starting quite a few years after, reaching out, trying to get more funding for the kids. It's not just my child, it could be yours too. Little by little, persistence pays off (and like Peggy says, I don't I'll stop shopping at Target!)

But, September is Childhood Cancer Awareness MONTH...not just one day, but the whole month. So, let's keeping going. Hannah and I are planning our next bake sale, just trying to keep the word out there and still try to help the kids that may not be as lucky as we are right now. Did I say lucky? I guess I did.

I wanted to share some pictures with you from today. This afternoon, Dave took the girls to the driving range...(Grandma and Grandpa- Hannah says she wants to be ready for you. She asked me today why we never play golf at your house, and I told here we will be there at Christmas, with snow on the ground.) More pictures to share tomorrow, I have some great shots of Hannah in the weed patch, I mean garden. I can't seem to make it to the end of this post, I'm off to bed. Lumbar Puncture tomorrow, so hopefully a diagnosis on this pesty thing soon.







♥Kim
Saturday, September 13, 2008
First Annual Childhood Cancer Awareness Day


Here we are in our Childhood Cancer Awareness shirts made by Heidi, Jessica's mom. Aren't they great? We wore them to dinner tonight, and many people glanced our way. Look at Hannah, to look at her quickly you wouldn't know, would you? If only it were that easy. 

What did you do today? Mow the grass, swim, exercise, eat? Did you have a chance to take a moment to talk to someone about childhood cancer, or call a family of a child with pediatric cancer just to say hi, or volunteer or work to help someone with childhood cancer? More on this tomorrow...ways we can ALL get involved.  

Facts About Pediatric Cancer
  • Childhood cancers are the #1 disease killer of children - more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
  • On the average, 1 in every 4 elementary school has a child with cancer. The average high school has two students who are a current or former cancer patient. 
  • In the U.S., about 46 children are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
  • On the average, 12,500 children in the U.S. are diagnosed with cancer each year. About one in 300 boys and one in 333 girls will develop cancer before the age of 20.
  • One out of every five children diagnosed with cancer dies.
Facts About Pediatric BRAIN Cancer
  • Each year 3,400 new cases of brain tumors are diagnosed, which is 3.2 out of 100,000 children. 
  • Every day nine children in the U.S. are diagnosed with a brain tumor.
  • Brain tumors are the leading cause of cancer death from childhood cancer, accounting for 24 percent of cancer-related deaths in 1997 among persons up to 19.
  • 76 percent of children diagnosed with a brain tumor are younger than 15.
  • There are more than 120 different types of brain tumors, making effective treatment very complicated.
  • Pediatric brain tumors are different from those in adults and are often treated differently.
  • The combined five-year survival rates for childhood brain tumors has increased slowly, from 54 percent to approximately 60 percent. However, for some pediatric brain tumors (e.g., brain stem gliomas, atypical teritoid/rhabdoid and glioblastoma multiforme), long-term survival rates remain below 20 percent.
  • Because brain tumors are located at the control center for thought, emotion and movement, their effects on a child’s physical and cognitive abilities can be devastating.
  • Quality of life for survivors of pediatric brain tumors is influenced by the long-term side effects of treatments such as chemotherapy and radiation.
  • Some brain tumor survivors require physical, cognitive and rehabilitation services to allow them to return to tasks of everyday life.
  • Unlike other benign tumors, benign brain tumors may recur and may result in death.
  • Brain tumors are treated by surgery, radiation therapy and chemotherapy, used either individually or in combination.
  • Enhancing the quality of life of children with brain tumors requires access to quality specialty care and ready availability of follow-up care and rehabilitative services.
  • Improving the outlook for children with brain tumors requires research into the causes of and better treatments for brain tumors.




Thanks for stopping by!!
♥Kim

Thursday, September 11, 2008

How could we not be thinking of those that died 7 years ago in the terrorist attack. We did pause today to pay tribute to those who died, and their families. 

If you missed the Stand Up 2 Cancer event on tv last week, here is a video clip where the actors read words from cancer victims and their families. I don't know Drew the 2 year old with cancer, but I do "know" Mimi Avery, sweet Julian's mom HERE 




September is National Childhood Awareness Month...and this Saturday, Sept. 13th is National Childhood Awareness Day (the first ever.) Let's Stand Up 2 Childhood Cancer.

I'll close with pictures of Hannah from tonight. She found an old hat downstairs tonight, and immediately put it on even though I was chasing her down to get it off-I think it's for a 2 year old. She said she wanted to wear it because it's comfortable! Dave and I noticed that Hannah was a big hat wearer before she was diagnosed. She had this one little knit cap she used to wear to bed every night. We talked after diagnosis about the hats, wondering if they somehow made her head feel better. That was my thought tonight when she put it on, and wanted to wear it to bed. Here she is making a bracelet for her friend Colleen, and then getting in bed for the night.




♥Kim

Tuesday, September 9, 2008

Remember September is Childhood Cancer Awareness Month...and this Saturday, September 13 is the first annual National Childhood Cancer Awareness Day! Show your support, wear a gold ribbon, wear a gold shirt, or even recycle some cans for Cans for Cancer to help kids with cancer and their families!!



Not a whole lot of news to report here. Dave and I met with Hannah's teacher today to discuss Hannah's 504 plan, and her emotional and cognitive issues. Mrs. Finger is wonderful. She is kind and calm and intelligent. I think she is a good fit for Hannah this year. We talked about homework and workload and other issues. We will just take it as it comes. The school has been very accommodating for Hannah, so I'm sure if something needs to be adjusted it will be. Today was the third day of school for the girls. Hannah became upset and ran out again today during a tough part of math, they are still working on it with her.

Make-A-Wish called yesterday with tickets for us to the Mets game tonight. Isn't that nice? I wasn't feeling well, so Dave took the girls. Hannah was very excited, but Colby wished it was the Yankees. The neurologist on Saturday would not agree to start IV antibiotics for my lyme disease. He wants a spinal tap to rule out anything else, even though I'm already positive for Lyme, and the MRI showed changes indicative of lyme (although it could be another type of infectious or inflammatory disease.) My primary care doctor started me on a new oral medicine, in hopes that it might work while I'm waiting for the spinal, which can't be scheduled until the end of the month. We'll see.

I'll end with a picture of Hannah at the Hampton Classic. That is a new hat she bought that day, it's a silk hat that was originally $99 (yes, it's the Hamptons) and was on sale for $49, the sales lady sold it to Hannah for $29. She loved it, and it does look cute on her. It's pretty difficult now to notice that Hannah had no hair at one point. If her hair is wet, you can tell because she has those two bald spots on the back of her head, but her other hair is long enough to cover it now. She still loves hats though, guess it became habit for her.


Here's a little boy who needs your prayers, he is very very sick right now. Please include him in your thoughts and prayers CHECK ON COLE. The pictures on his blog show all he is going through right now.

♥Kim

Friday, September 5, 2008

So did you see it? I watched Stand Up 2 Cancer here with the girls, they were very interested in the whole thing. I was watching Hannah as she watched the show, especially on the pediatric segment. At the very beginning with the group of cancer survivors, she said "do those little kids have cancer? Look how little they are!"

Well what a show. I held it together until they showed the people crying..the one lady saying "you just watch someone go through it and you want to make it all ok, but you can't." That was my breaking point. So, by the time they showed King Julian (remember our friend little Julian carepage:Juliansworld) and read his mom Mimi's words about she having her hand on his chest feeling his heartbeat, then not feeling it as he died...I was done...blubbering. Did you see Julian's picture? The little boy in the red shirt while actor Forest Whitaker was reading his mom's words. Wow.

Colby and Hannah both called to make a donation. They really wanted to talk to Ellen Degeneres on the phone, ha ha. Colby donated in honor of Hannah, and Hannah donated in honor of Alec. I told her she didn't have to mention anyone, but wanted to mention her friend Alec. Amy-wish I had a picture from your visit last week to post here!!! You can check out his website HERE. Some great new pictures Amy!

I wavered between thinking the show was one big Hollywood cream puff and thinking this could really do some good. Either way, it brings awareness to cancer research and the need for funding, and that can only be GOOD. Their phone lines are open for a week, can't wait to hear what the totals are.

School Day #2 today, what a difference. Hannah jumped out of the car with Colby, and they walked into the school by themselves, with me still in the car. It was great. I didn't find out until later that Hannah actually walked in singing "gotta go to Mo's, gotta go to Modell's," with a little "hip action" as she calls it. I guess this was a bribe from dad last night, walk in singing, with hip action and she'll get $20 and lottery ticket. Colby got in on the action too with $10 for helping out. Trying to distract her, guess it worked...my question is...why didn't I get in on the action? Hannah did run out of her classroom today crying, during math. They are working on that, she just gets frustrated.

Good night, thanks for checking in with us tonight...
♥Kim

Thursday, September 4, 2008

Our first day back to school today, hard to believe. Each year I take a video of the girls before school and after school on their first day. An interview of sorts, it's always interesting to look back at the years prior and compare them. Today as I was looking back at last year's video. Hannah had no hair and she almost appeared green in the video. Her eyes looked tired and worn, but her spirit was still there. What a difference for this year. She looked happy and healthy, perky and upbeat. For some reason, we skipped 2nd grade interviews, but I did look back at 1st grade. I couldn't believe it when Hannah was sitting there after school with a cold rag on her head, talking about how her head hurt in the cafeteria because it was "too loud" and she had to go to the nurse on the first day of school. FIRST GRADE!! She wasn't diagnosed until midway through 2nd grade. I hate that. Unfortunately, my video camera won't connect to the computer, so I can't download it here, but I plan to put it on disc soon so that I can share it. But, here are a few pictures of the girls from this morning. I can't believe Colby is now in 6th grade. It's the last year for her in the elementary school. I keep calling her "the big cheese", which she just seems to love (ha ha).



Although Hannah was happy and perky this morning, it all broke down when we got to school. I walked her in, and we met Mrs. W (her aide and good friend) in the lobby. I went to leave and Hannah became upset. I talked to her a bit, and then some other adults became involved in trying to get her to head down to her classroom. She was being torn from me, at first crying, then screaming and reaching out "mommy, mommy." I was taken into the nurse's office, shaken too. I should have just taken Hannah aside and talked with her for a few moments. Hannah will do what she knows she has to, but not by being forced. You can't liken her to a new kindergartner on their first day. It's different for her, it will always be different, and it will have to be handled differently. Everyone kept telling me how she would be fine after I was out of sight, but she wasn't. She wouldn't go into her classroom for a while, and even after she finally did, she remained upset and withdrawn for quite a while. By lunchtime, Mrs. W reported that she had finally turned the corner and warmed up. The rest of the day went well.

Colby had even made Hannah a deal this morning over breakfast. If Hannah didn't cry this morning she would get two dollars-out of Mom's wallet (that's Colby the dealmaker for you, don't know how I became involved!!) She would also get another dollar (out of mom's wallet again) for a whole day without crying. Guess it just wasn't in the cards for Hannah this time. I talked to Hannah about it tonight and she said she was just scared and didn't want me to leave. I get that-it was the first day of school, but beyond that, the first day of something new for her. This is how she is, this is the way I expect it to be for her for a very long time. I'm ok with that, even if others aren't. I guess if she still cries for me on her first day of a new job, maybe I'll be prying her off of me myself :) I expect tomorrow to be much better. Keeping my fingers crossed.

So, what are you all doing tomorrow night at 8pm (ET)?? We'll be watching Stand Up 2 Cancer. There will be a piece on Childhood Cancer, and some of our dear cancer friends will be in the audience-Mimi (Julian's mom) and Michelle (Bailey's mom), along with Pearce and her family (actually up on the podium.) Hope you can watch with us. A lot has been said on many children's web pages recently about raising awareness for Childhood Cancer, about how most people don't know or don't care about childhood cancer. I don't think that people don't care, I think that people just don't know. What did I know about kids and cancer before this? It's ironic that only a couple months before Hannah was diagnosed, I sent my first ever donation to St. Jude's hospital. It was only a $25 donation, but a start I thought. I never thought it would be OUR start. You know how those commercials always tout "it could be your child." How true that is. It's not that I didn't care before, it's that it wasn't part of my world. It needs to be a bigger part of this world, of everyone's world. Our children are our future, they need to be around...happy and healthy and cancer free!



♥Kim

Wednesday, September 3, 2008

Happy Birthday to our cousin Sarah today, 9 years old!!!

It's 9:20pm, kids have been in bed since 8:20pm, and they are still wide awake. It's going to be tough getting back into the school routine, no more 9:00am wake up time. Tomorrow is their first day of school. They both said they are nervous, Hannah says she is just going to cry, because "that's what I do."

Big changes for everyone tomorrow, kids are back to school and I'm going back to work. I will be teaching 2 gymnastics classes beginning tomorrow, 3 and 4 year olds. I was teaching when Hannah was diagnosed, then that stopped abruptly. I hope to be able to continue work with this Lyme disease. I just had brain MRI, because I was still experiencing symptoms of Lymes, even though on antibiotics for a couple of weeks. Sure enough, it seems to be in my central nervous system-brain and CFS. Oh joy. I have to go to a neurologist on Saturday to have this confirmed and be sure it's nothing else. Most likely, next week I will have a PIC line inserted and start daily IV antibiotics at home (hopefully.)


Enough of that, here are a few pictures from yesterday, this isn't even our first tomato harvest. We have TONS!! Also, look at the pumpkins that Hannah grew this year. She loves to plant things in the garden.




Remember...SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH...This Friday is the big tv network Stand Up 2 Cancer event, 8pm. Here is the link, check it out: Stand up 2 Cancer

♥Kim

Monday, September 1, 2008

Who do you know with CHILDHOOD CANCER?
Who do you know that died of CHILDHOOD CANCER?

Let me share a few with you

Beautiful Little Arden-she died yesterday in her parents arms from Neuroblastoma

And little Mariah, who died yesterday from a diffuse intrinsic pontine glioma, just barely 4 years old 

Or 4 year old Joshua, who died last week of a diffuse intrinsic pontine glioma

And not even 2 year old Colin, who died from Leukemia

Or beautiful Jordyn who died from Anaplastic Large Cell Lymphoma
www.carepages.com/carepages/jordynlauraspage

And Michael who died at age 3 from primitive neuroectodermal tumor
www.caringbridge.org/visit/michaelpullano

Want me to continue? These are just a few of the kids that I know about that died only THIS MONTH!! This doesn't even count the many many others who have already earned their angel wings, or the many many others who have just learned their cancer is back, and they have to start their fight AGAIN. What amazes me is that each day I see sites of new kids that I did not know of before that have cancer. When I go to a site, and they mention another child in need of prayers for their struggle with cancer, it's continually heartbreaking.

Let's do something about it together. 
September is National Childhood Cancer Awareness Month
 Here is an idea for the day- watch the video below, mark the date on your calendar.
Stand Up 2 Cancer...this Friday, September 5th at 8pm EST
on all three major networks  ABC, NBC, CBS simultaneously. It's a big one! 

Pearce....fighting medulloblastoma...watch her as part of Stand Up 2 Cancer.
http://cbs3.com/health/Stand.Up.To.2.782979.htm



♥Kim

Tuesday, August 26, 2008

All clear, NED again, wonderful news. Hannah's MRI went well, quick today since it was only the cranial MRI. She even did well with the contrast injection, it was very quick and only a couple of tears. Last night she said she wanted to "make a deal" with Dad about the IV. They made a deal that if she was still, she would get $10 of lottery cards. The girl is a lottery fiend. She loves scratch off lottery cards. She called Dad right away after the MRI to report that she won the deal, and he owed her. This sparked a lot of discussion on her part about whether she wanted five $2 cards, or ten $1 cards, or 2 $5 cards, etc. She finally decided on four $2 cards and two $1 cards (she wanted me to write it down so she could remember. She writes EVERYTHING down in great detail now!!) So, another 3 months to rejoice and relax. December will be the next MRI, cranial and spinal. Thank goodness for insurance, every MRI is $5,000, and that is for EACH part done. The cranial MRI is one part, the spinal is three, so a full cranial and spinal MRI is around $20,000. WOW!

Also, something very important to announce for everyone. Did YOU know that

  September is 
CHILDHOOD CANCER AWARENESS MONTH? 

Saturday, September 13th is National Childhood Cancer Awareness Day. Gold is the official color for Childhood Cancer. Here is a great way to show your support, these T-SHIRTS were designed by Heidi Randall, Jessica's mom. Jessica died from cancer last year in June, I'm sure many of you have seen her website, I have referenced it here several times. Heidi has been such a big part of Team Unite. If you are so inclined, take a look at the T-SHIRTS (they also have buttons and magnets) and WEAR ONE during the month of September to help get the word out there. P.S. Hannah's picture is one of the kids on the front. 

So many great things are happening this month, this is from the Team Unite website:

I am awaiting some facts that will help us determine the next steps but for now it is time to focus on the press, with this news and the need for the major networks to do something HUGE this year for Childhood Cancer Awareness Month. As many of you are aware, the major networks are teaming up and doing a “Stand up 2 Cancer” event September 5th . Let’s make sure that ABC, CBS and NBC are aware that September is Childhood Cancer Awareness Month. Let your voices and incredible stories of bravery be heard! We need a cure PRONTO so let’s ride the wave of this exciting news regarding S911 and get the press the children deserve. MORE AWARENESS = MORE RESEARCH $$$$$. Thank you to CURESEARCH for all you do to secure funding and move us toward a cure!

Please write to your local/national newspapers and TV New stations/programs asking them to do something to recognize September as Childhood Cancer Awareness month. And in addition, discuss the “Stand up 2 Cancer” event in your letters to ABC, CBS and NBC.

Thank you for what you are doing to support the kids!

Links for a few media outlets you may contact. Please send to any you feel would benefit our cause! We need to spread the news to get the recognition that children’s cancer deserves in September!

Contact your local ABC Affiliate station
Contact your local Fox Affiliate station
Contact your local NBC Affiliate station
Contact your local CBS Affilitate station
CBS email Form 

Thanks for being here with us, for all of your support and prayers (and cans too!!)
♥Kim

Monday, August 25, 2008

What a superstar we have! Hannah's play was Saturday night, and it was incredible! It's just amazing how they begin on Monday, end on Saturday, and put on an entire production of Hansel and Gretel. Here are a few pictures from the production. Hannah really had a good time and was very proud. She said she cried backstage because one of the kids was a bit intense, yelling and creating tension, which made her nervous. She asked me "when I came out to say spiders, could you see the tears in my eyes?" No I couldn't. Here is Hannah getting her makeup done, and then on stage.







I was so happy that Hannah agreed to participate in the play. I think it really helped a lot in interaction with other kids. Although, when I showed up at lunch on the two days, she was out eating in the hallway with the assistant director, not wanting to be with the kids. She even had a friend in the group, who is also in her class this year, but that's the way it is. She would rather be with adults, or someone who is there to help only her (like her helper Marissa in the play). I see this time and time again, not just with Hannah but with all cancer kids. They shy away from regular interaction with kids their own age, and interact more with adults. It's an odd thing, but very noticeable for myself and other cancer parents. It sets out kids apart, and will always set them apart, no matter how hard others try to get them involved.

We're watching Ted Kennedy on tv right now at the Democratic convention. He looks good...even after brain surgery, proton radiation therapy (just like Hannah) and chemotherapy. You can see his hair gone on the left side of his head, he walks with assistance, and his speech seemed a bit stilted. He put on a good show, and I can imagine that now he will immediately go and lay down.

We go for Hannah's MRI of the head only tomorrow morning, we'll post results tomorrow after we get them. I'm nervous. I just keep thinking of little Julian, and how he recurred at 9 months (this is Hannah's 9 month post treatment MRI). Julian only lived for 6 months after that. Sleeping tonight will be a challenge.


♥Kim

Wednesday, August 21, 2008

Hannah wants everyone to know that despite little Tod's antics, she loves him anyway. Here are the pictures to prove it.


Hannah had a good day today, tutoring (reluctantly) in the morning and play practice in the afternoon. I was able to leave her there today during her 2 hour practice and all was good. Tomorrow practice is all day, so we'll see how that goes. This is such a good experience for her, and I'm so glad she is doing it. I can't wait until Saturday.

Tonight we went clamming-for those of you not from the east coast-it's where you hike out to the bay and take the rake and rake through the water and sand to find clams. We went to an area that is not very populated, and had lots of luck. Here we are with our friend Emilie, we got about 15 clams in all. Dave and I came home and baked them-they are the best I have ever had! Well, with the exception of Ronnie and Paul's!! It's not really my thing-standing in the bay in sandals, not being able to see the bottom and wondering what is going to bite you while digging furiously with the clam rake. We did catch one VERY big spider crab. But, it's definitely worth the work. Here are some pictures of our adventure.






That's all for tonight, a few side notes. Hannah's next MRI is Tuesday of next week. I'm trying to keep it out of my mind right now. I got the word from my doctor today that I have Lyme disease, which explains why I have feeling lousy lately. I guess I was bitten by a deer tick sometime, didn't even know it. I'm on antibiotics, which I hope are doing the trick, since it can get pretty bad if it progresses. So, signing off with my GIANT headache...

♥Kim

Tuesday, August 19, 2008

Our summer is coming to an end too quickly, only 2 more weeks left! Hannah surprised me this week by joining in a local play! Yes, she said she wanted to be a part of a play that a theatre company is putting on in town, Hansel and Gretel. All the kids that sign up get a part, it's amazing watching the directors work with the group and decide within 1 1/2 hours who will have which part in the play. They practice this week, the play is this Saturday night. Hannah had a few issues the first day, but a member of the staff really helped put her at ease. She is very excited about the play, she is playing one of the "nasties" in the play, I think those are the witches helpers. The director took a few minutes out to speak to me about Hannah, he is 23 years old and had a brain tumor as a child also, a benign tumor of the cerebellum (where Hannah's was located too.) So, he really gets it!

The girls got their teacher assignments for this year, and they are both very excited about them. Hannah will have Mrs. Wilcenski with her again as her aide this year (THANK GOODNESS), so we are feeling comfortable knowing that she will be with her. School starts on September 4th.

Tod, Tod, Tod. Oh we love Tod, or by now he would be roasted on a stick being served at the Olympics! Here is what Tod has been up to lately...

Red frosting from Hannah's birthday cake after eating the rest of it off the counter
Tod smeared in mud from the creek after he went down and rolled in it...talk about stinky!
Hannah giving Tod a bath this week
Tod spilled a chocolate milk shake all over the white carpet in the living room after I left the room for ONE MINUTE
Tod in his new bed that Hannah bought him for his birthday. See the part that he chewed after only the first night?
Tod with his ice cream dog bone birthday cake that Hannah made him

Tonight he chewed a piece to the pool that is used during cleaning. Oh joy.

♥Kim






Tuesday, August 12, 2008

Well Hannah has graduated! We went to clinic today for our monthly check up. Hannah's counts were largely unchanged, white cell count up only slightly, ANC up slightly too. Still not in normal range, but acceptable for now. We also got a script for her next MRI-end of August. Oh boy, looking forward (NOT) to that. We discussed the osteopenia-more on that below-and that was about it. Hannah's next monthly appointment will not be in clinic, we will now go to the "brain tumor clinic" which is separate from where we have been going since the beginning. The regular clinic is where all patients are seen, no matter what kind of cancer or other hemotology issue they have. She gets her finger stick, gets weight, blood pressure, height, temperature, then we wait to meet with the doctor to review the counts and discuss any other issues. Today it was crowded as usual, with many new kids we had never seen and some old friends too--HI KAITLYN!!

Hannah is now 9 months out from the end of her treatment, she is doing well, so she has graduated!! Brain tumor clinic is only once a week, on Tuesday afternoons. When we come in for a visit, Hannah will see the oncologist, the neurologist, endocrinologist and any other specialists on that afternoon. Sounds pretty convenient, we'll let you know how it really works. But, I do believe this means she won't have to get the finger sticks any longer (although I may be wrong on that one.)

I did speak with Hannah's endocrinologist yesterday. They said that her blood work all looks normal, but she definitely has osteopenia/osteoporosis. Why? They don't know for sure, it could be the radiation or the chemo or the steroids, or some combination of all of those necessary evils. They don't want to treat her with drugs they would treat an adult with, they have many unknown side effects for children, especially girls within child bearing age. They want us to supplement with 800 IU's of Vitamin D (double the recommended amount) and 750 mg of Calcium (about triple the recommended amount) daily. We will have to do follow up blood work also in three months to be sure she is not getting too much vitamin C in her system, which can cause kidney stones.

At the time we get that blood work done, we will also have the preliminary blood work done for growth hormones. Radiation treatment usually causes stunted growth and hormonal issues (if the thyroid was in the field of the radiation, less of an issue with proton rads we hope). When Hannah had her bone age test done, she tested at 6 years, 10 months of age. In one regard, that is good news, it gives her bones more time to grow to help catch up on growth that she may lose due to the radiation to her spine. However, another doctor explained to me that the other school of thought here is why did she test so young? Is there a growth hormone issue? Although they will do the testing, the wouldn't even consider giving her any type of growth hormones until she is 2 years out from the end of treatment, since it has been known to cause tumor regrowth. So, you would get taller, but you would only have less than a 10% chance of further survival when your brain tumor came back.

Everyone keeps remarking on how tall Hannah is getting, but she has fallen off somewhat in her growth chart already to the 5.9 percentile (from the 20th, to the 10th, to the 5.9th.) We have noticed that the growth is coming more from her legs than her trunk area (where she received direct radiation.) It's something we will have to monitor from now on.

I want to share a video with you from a little girl with leukemia. Unfortunately she lost her battle, but along the way she made this video diary. It is pretty realistic, and shows some of what it's like to be a kid with cancer. The rage she displays is from the steroids (which Hannah did not have to be on after surgery, thank goodness.) It's pretty powerful. It also gives you an idea of why I spoke with the doctor today about a psychologist referral for Hannah.

♥Kim

Saturday, August 9, 2008

We all have been enjoying the Olympics here since the opening ceremony last night. It's fun to watch something on television that we all enjoy watching together!

I have not spoken to Hannah's doctors yet regarding the osteopenia. The doctor was out of town all week, and I had been trying since Monday to get them to return my calls. I did get a message on Friday saying that all of her bloodwork came back normal, but that the DXA scans showed significantly low bone density. WHY? I didn't get to speak to the doctors yet so I don't know what their theories and suggestions are yet. I hope to connect with them on Monday. Hannah's other endocrinologist suggested doing HGH testing (growth hormone) to determine if all of that is functioning properly-with one theory being maybe there is an issue here since Hannah's bone age test showed she is only 6 years, 10 months.

Hannah spent the week at Camp Invention. The program was Monday-Friday from 8:30am-3:00pm. WOW! Hannah wanted to sign up for this when the information came home, and didn't know any other friends who would be participating. It took about an hour on the first morning before I was able to leave her there without crying. Each day got progressively better. She told me she cried each day at some point during the program (which she did almost every day in school last year too.) I spoke to the director the first day, and she already knew Hannah from scouts, and had spoken with Hannah's counselor to prep her on giving Hannah a little extra help/attention. I felt better leaving her knowing that. The staff was excellent, and Hannah really had a good time. She just loved inventing each day, and doing the crafts, etc. She said the only part she really didn't like was lunch! Here are a few pictures of her with her inventions. Her group created a spaceship (which Hannah ended up bringing home.) It covers the entire kitchen table, so it won't be there for too much longer! The other creation is her "alien" which she created from taking apart a non-working cd player and turning it into the alien. Very creative!
♥Kim



Hannah's Cans for Cancer Update

So many wonderful things have been happening with Hannah's Cans for Cancer fund, I wanted to give an update. Here are our most recent numbers for Hannah's fund:

Total amount raised: $9,828.40

Total amount donated to kids with cancer and their families: $4,655.66

Total amount currently in fund: $5,172.44

Thank you so very much to all of you who have helped us help the children and their families. So many people have donated money, donated cans week after week (even washed with soap and water!!), supported us through fundraisers, hosted their own Cans for Cancer drop off sites and so much more. I think the saying goes "many hands make light work." That is just so true. All of us working together have done wonderful things for these kids.  Here is a picture of Hannah outside of the hot dog stand run by the Bugdin family. See their Cans for Cancer bin on the side? Stop by for a great hot dog meal, they are across from the Capital One headquarters in Mattituck on Route 25. What a great idea! They drop off cans that are collected there to us.

I know of others who have vending machine routes, collect from their friends and family, and many who come by weekly.
We don't know all of you by name, but you are all making a difference. Thank You!!
Most recently, Hannah's Cans for Cancer helped a family pay for a service for their child that was not covered by insurance. His therapy is helping him learn how to swallow again, so that he will no longer have to have tube feedings. He has now graduated to pureed food, really great progress after not being able to eat anything after months. Some of our other ideas include :
helping Coleman (medulloblastoma) and his family as they come to New York City to try and beat the return of his cancer. Unfortunately, this is his second relapse.

purchasing season tickets to the Science Museum and Boston Aquarium for the children at Spaulding Pediatric Rehabilitation Hospital in Boston where Hannah lived while we were there for radiation. We were able to attend both places courtesy of a donation of tickets (they are both expensive). We would love for the other kids there to have the opportunity to get out when they can and go somewhere fun, it really makes a difference.

more Wii's for Schneider Children's Hospital. We are waiting until their construction and move is complete, since they can't be installed until then. The last time at clinic we saw two kids in the transfusion room playing Wii together, with such big smiles on their faces.

of course more games and crafts for Schneiders-they are always in need of those.

We would welcome your ideas, you can post them here or email! 

♥ Kim

Monday, August 11, 2008

It's been a while since my last update, wow! We've been busy with family in town and our trip to Maine.

First, no results yet on Hannah's osteopenia. I plan to call the doctor tomorrow to check on the results.

We had a great time this last week with all the family in town. My sister Sue and her daughter Sydney got here first, then Grandma and Grandpa with Great Grandma came last week, with Uncle Victor. We had a full house with all of us and the two dogs. We did a lot of swimming in the pool, that's for sure. Thursday we all headed up to Bailey Island, Maine for my cousin Jacque's wedding. We had some free time to do some hiking, eating wild blueberries and blackberries, collecting shells and beach glass. We went to the rehearsal dinner lobster bake on Friday night, what a feast! The girls had fun doing some downhill skateboarding (yep, enough to give me a heart attack) and we all had fun eating that great Maine "lobsta". Saturday was the wedding. It was such a beautiful and well planned day. Even the weather cooperated long enough to get everything in. The reception was at a small intimate place, really nice. Then, the dancing started, and we all got up and had fun. It really was a great time.

Here are a few pictures of us on a hike, and at the wedding. Hannah caught the bouquet, boy was she happy about that. The girls really didn't "get" the whole garter thing and Hannah asked why his head was up her dress (ha ha).

Also wanted to mention some of Colby's latest works on youtube, some very interesting work!!

Colby's YouTube Videos








Lots more later too,

♥ Kim
 

different paths

college campus lawn

wires in front of sky

aerial perspective

clouds

clouds over the highway

The Poultney Inn

apartment for rent