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
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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

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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
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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
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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
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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

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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
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