A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Children for LIVESTRONG

I am having the best time making all of the arrangements for LIVESTRONG Day this Saturday, October 2nd. There are lots of people who have joined in to help make this a great time for a great cause. Mr. Hubbell, my high school counselor and Key Club advisor has been very supportive and Mr. Clavery (teaches Ceramics) surprised me today by calling me to his classroom and giving me some of his beautiful art for our drawing. How very, very caring!

It’s fascinating to me to discover how people react when asked to help with something like this. Most people are eager and willing. Dolphin Bay Resort donated Brunch for Two at their award-winning Lido Restaurant. And my very, very, very (how many “verys” can you deal with???????) bread comes from a place called House of Bread in San Luis Obispo. They make the BEST bread anywhere! My very favorite is Garden Herb, unless I am making French Toast, and then it is Oatmeal Applesauce. Anyway, I am so excited about their bread that I am traveling off-track! House of Bread is donating…. (drumroll please) … cinnamon rolls. Yes, their” Too Good to be Described with Words” cinnamon rolls. (Anyone out there packing their suitcase for San Luis Obispo on Saturday?)

Meghan is heading up the bake sale and Becca is going to be our emcee who will also “grace” us with singing and drama. Mom’s friend from high school, Cindy Meyers, is kindly and generously going to share her musical talents.

Does Grace really release on Friday???????????????????

Is this what an about-to-give-birth woman feels like?????????????

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Surprises!

I love surprises! I love planning surprises and I love being surprised. One of the things that I cannot forget to mention during National Childhood Cancer Awareness Month is how important it is for children fighting cancer to have something to look forward to– or something to surprise them. It is those moments during my illness that allowed me to “store up for the winter” when difficult times arose. You know what is funny is that it never mattered what the surprise was, just that there was one.

… like the day Patricia Barker’s pointe shoes arrived in the mail. Ooooooooooooooooooooh my gosh!

I don’t think Patricia Barker will ever fully understand what she did for me on this day. It’s something that will last for much longer than a day and it’s something I truly look forward to passing on!

 

 

 

 

 

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Arms Wide Open

After I finished my cancer treatments, the most difficult part of my health battle began. This is one of the awareness concepts I hope to bring to light. Cancer treatments are brutal. I expected to feel better when it ended, but severe late effects from treatment surfaced and growled. 

I suffered from severe physical problems. Digestive problems made eating so painful that I avoided it. Reactions to my medications left me in a depressed fog. 

There is a foundation called Arms Wide Open Childhood Cancer Foundation that is working very hard for less toxic treatments for children fighting cancer. As a child who endured “toxic treatments,” you can imagine that I am all for this! I would love to have you participate in this Pepsi Challenge vote that will help Arms Wide Open with their goal. 

Funding for less toxic cancer treatments for children  

http://www.refresheverything.com/armswideopenchildhoodcancerfoundation 

Thanks to everyone who takes the time to vote and make a difference for children! 

From Grace: 

Suddenly, I experienced an overwhelming amount of feelings surfacing within me. Anger about things that did not even faze me at the time transformed me into a person neither my family nor I recognized. There was so much pain, so much suffering, within me I could not stand it any longer. 

Why? Why did I have to be so scarred, so haunted, so disturbed by all that I had gone through? 

Only pushing through it at the time, I did not expect the fear, anger, and desperation to arise months and months later. Now, I felt my pain: I felt my frustration. It was as if God had simply spared me the suffering during treatment so that I would be able to fight. The severity of all I had gone through left my mind in another world, one where all is dark, and nothing can pull you out except God Himself. 

   

 

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Sent a Package Today…

Do you ever have moments in life where you stop suddenly and marvel at what just happened? And then you start to realize that your marvelling is just beginning? I had one of those yesterday, and it’s still swirling around me. It began with an email, then an address, and then I sent a package today…

Stay tuned…

On this day 22 of  National Childhood Cancer Awareness Month, I have decided to talk with you about one of the most critical reasons why we need to help everyone know more about childhood cancer. I have been reading story after story– all posted by parents finding out about the Oprah! Please Do a Show on Childhood Cancer Facebook page. There are many parents who tell the same story as mine; it took a very long time to get a diagnosis.  http://bit.ly/br6Mrg

This is serious. We all know that with cancer, the earlier it is detected, the better. I imagine there are many reasons why it takes so long for a child with cancer to receive an accurate diagnosis. Small children don’t have the language skills to describe exactly how they’re feeling. This is one huge reason that parents need to be aware.

Another possible reason is that doctors don’t expect cancer in what looks to be a young, “healthy” person. When I became sick, I was dancing five days a week– I was pale as a ghost, my lips were blue, and I was coughing a high-pitched dolphin cough when I exerted myself at dance. (Take note: these are symptoms)  I knew I wasn’t healthy. I knew there was something very wrong. Most everyone around me thought I was fine. My mom believed me and kept taking me to doctors. It’s a really good thing she did.

I was slowly suffocating.

We need awareness.

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LIVESTRONG Day is October 2nd

Guess what I will be doing on LIVESTRONG Day? Are you guessing? Do you think it might have something to do with LIVESTRONG?

I will not puzzle you any longer:)

LIVESTRONG Day Event Page:

http://www.livestrong.org/Take-Action/LIVESTRONG-Action/Livestrong-Day-2010/Event-Details?EventId=3129

This, as you can imagine, makes me happy, happy, happy! Mr. Lance Armstrong did a tremendous thing for my project to help children with cancer when he endorsed Grace: A Child’s Intimate Journey Through Cancer and Recovery, and this is my opportunity to support his organization, LIVESTRONG! I will update you as more of the plans solidify. Children raising money to fight cancer is beautiful!

Now I will take you back to the theme of the month… yes, you know by now… National Childhood Cancer Awareness Month.

One of the most recent ideas from Congress is to create a US postage stamp for childhood cancer awareness. Please write to your US Representative to show your support. 

http://www.kristinasrainbowsofhope.org/facts.html

This link has a list of childhood cancer facts, including:    

  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents.)

Did you learn something????????????

Finally, I just spent a fun-filled weekend in San Francisco, celebrating my Gramma and Poppy’s 55th wedding anniversary with lots of our family. Congratulations, Gramma and Poppy! You are the heart and soul of our family, and I love you sooooooooooooo much!!!!!!!!!!!!!!!!!!!!!!

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21,322 “Likes” on Oprah! Please Do a Show on Childhood Cancer Facebook Page

Please let me tell you again today about how important it is that all of these voices are gathering in one place. I want to thank Christine and her brave son, Braden, for beginning this movement and for working so hard for children with cancer.

Just in case you have missed the link in previous posts:

http://www.facebook.com/pages/Oprah-Please-Do-A-Show-On-Childhood-Cancer-Our-Kids-Need-Your-Help/156632377680799?ref=ts

And just in case you would like to do some tweeting, here is the shorter version:

Short Link:

http://bit.ly/br6Mrg

You know, each and every day, I wake up and know that I am a cancer survivor. I could choose to move joyfully forward in my life– never looking back to see those other “wounded soldiers” on the childhood cancer battlefield. But I have to look at those children. They have my heart. They have my deep and passionate commitment to make things better for them.

So I plan to keep going back to the childhood cancer battlefield again and again– to “rescue” my fellow “wounded soldiers.”

 

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Wendy Robards and Reading for a Cure

Wendy Robards first captured my attention when I found out about her Reading for a Cure. 

http://www.caribousmom.com/reading-for-a-cure/

What an amazing, incredible, super-awesome idea for her to create, combining her love for books and reading and her love for children. This, my friends, is a golden opportunity for book lovers to help wipe childhood cancer off the face of this planet. I can see you twisting your face and raising your eyebrows. It may seem like as if you are not doing much, like you are a teeny-tiny drop of water in an arid desert. What is really happening is that there are a bunch of “drops” and pretty soon those drops will form a pond, and then a river, and then an ocean of help for children.

I will remind you once again: Cancer is the #1 cause of death by disease in children.

If this is true, why is there so little funding for childhood cancer research? This sickens me to say this, and it just about kills me to think it, but it boils down to profit for the companies who make the cancer drugs.

Profit????????????????????????????????????????

Unacceptable. Children are suffering. Children are dying. Families are ripped up with grief. My mission keeps calling me to action.

Can I share one more thing about Wendy?

Wendy read Grace: A Child’s Intimate Journey Through Cancer and Recovery, and she wrote a heartfelt, beautiful review:

http://www.caribousmom.com/2010/09/16/grace-book-review/

Wendy, when I get the chance to meet you, I just know that you will have angel wings:)

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Alicia Keyes Tweets for Cancer Kids

The very first thing I want to tell you about today is how the Facebook site requesting Oprah to have a show about childhood cancer has continued to mushroom in growth. One strategy the page originators are using now is to ask celebrities to tweet about the page and ask their followers to “Like” the page too.

I have always loved Alicia Keyes music. Now, I love Alicia Keyes– she helped to fuel this movement by opening her heart and using technology to make good things happen. Please go out and buy her music!!!!!!!!!!!!!!!!!!!!!!!!!!

For all you NASCAR fans out there (brother Nicholas, are you listening?) this is what Jimmie Johnson’s foundation is doing for children with cancer:

http://www.jimmiejohnsonfoundation.org/Events/Samsung-Helmet-of-Hope/Vote-Samsung-Helmet-of-Hope-For-More.aspx

And just one more link for you– telling about an amazing little girl named Layla Grace who lost her battle with cancer. Her tremendous spirit shines through this foundation to honor her gift of inspiration to all of us:

http://www.facebook.com/pages/Layla-Grace-Childrens-Cancer-Research-Foundation/111320672232355?v=wall

We have so much to do, and so many reasons to do it.

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Tommy Hilfinger and Alex Garfield PSA

It makes me happy to see that many people are reading my blog.  This isn’t because I have a secret ambition to be Master Blogger of the Universe, but because it means people are learning more about childhood cancer. I know I’ve been a little tough on you lately, expecting you to click “Likes” on Facebook pages and sign petitions and take surveys. I am really, really grateful for your participation!

Today, I will just do a little reporting and give you a tiny break till tomorrow:)

Fashion has never been one of my interests, but it just became an interest when I saw what Tommy Hilfiger and Alex Garfield have done to help raise funds for childhood cancer research– it’s called “Connor’s Heroes.”

http://www.youtube.com/watch?v=re17LbQtH4k

When I ask, “Is anybody out there,” I hear Tommy and Alex say, “Me!”

There is one other person to tell you about. I met a beautiful woman named Katya last Saturday at the Children’s Miracle Network event who had painstakingly, lovingly, and artistically created a work of needlepoint that she donated for the live auction. I cannot even imagine the time and energy she devoted to this brilliant artwork, and I imagine that it must have been very difficult to part with it. Whenever we put our heart and soul into something we make, it seems like it becomes a part of us. She must have felt like she was giving a piece of herself. Well, it is people like Katya– who give from their souls– who have made it possible for me to be living and breathing today. That she would care about sick children who are complete strangers is something we can all aspire to. That she would give such a big piece of herself… this will make me a better person.

If you would like to see her blog and photos of her incredible needlework:

http://astitchingtime.blogspot.com/2010/09/rancho-vino-event.html

Thank you Katya, Tommy, and Alex…

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Survey… how much do you know?

Childhood Cancer

Childhood Cancer

That Facebook page that I have told you about asking Oprah to do a show on childhood cancer has grown to over 14,000 “Likes.” What is truly heartbreaking is that people have posted story after story after story of children with cancer. As I read the stories, it touches me deeply to know that many families who have lost a child to cancer have decided to establish foundations to help other children. What a truly amazing feat to be able to turn their horrendous grief into a sparkling gift for some child who is suffering greatly. I love this so much! To know that this feat is even possible makes me believe I can find hope in the darkest of situations.

Now, I have a quiz for you so you can learn how much you know about childhood cancer… and how much you don’t know:)

http://www.surveymonkey.com/s/XQGLLQS

On this 14th day of National Childhood Cancer Awareness Month, I ask you to take the time to learn just one thing about childhood cancer. I ask you to go to the Oprah! Please do a show on childhood cancer! site and read about the heroic children and their incredibly supportive families. For today, just learn.

Oh, there is one more thing you can do… please “Like” this Facebook page as well! I know the author personally:)

http://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076

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