A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Mel Majors and EmpowerRadio Interview

How are you doing this lovely day– at least here on the Central Coast of California!

I am grateful to be living in paradise today:) Mel Majors has posted the podcast of the interview we did together this past Wednesday. I enjoyed talking with Mel; there is something very cool about answering questions that are formulated by a survivor. She has a great sense of humor, and it makes me wonder if she has always been witty or if it is chemo-induced! Just kidding Mel. I will be looking forward to that book you are going to write:):):)

 http://www.empoweradio.com/home/shows/cancer-warrior/367-The-Cancer-Warrior.html

Chemistry test today went well, danced at school today, dancing tonight… life is great, isn’t it?!

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Publication Day for Grace: A Child’s Intimate Journey Through Cancer and Recovery

Today is not just like any other day. Sprinkled throughout my normal activities of the day were spurts. You know what I’m talking about! I went to school today like any other weekday, and I went to dance today, like every day of the week, but one– but there were moments when Grace popped into my mind and the spurts gushed forth. They were quite robust I might add:)

I think back to those scribbles in my spiral notebooks that I began just to be able to write. I have always loved writing. Writing was healing to me at that time, and I began filling those notebooks. 

As I was asked to speak and share my story more and more, I realized my story could help people. My mom, God bless her, began typing the 90,000 words that filled those spiral notebooks. I love you Mom… this day would not be without you.

And Matt… there really aren’t any words, so I will say, “Thank you. I will pass it on.”

And Greenleaf Book Group… Hobbs, and Bryan, and Sheila, and Linda, and Jenn, and Kristen, and Katelynn… and Clint:)…  you guys are the best. It has been an honor and a true blessing to work with you.

 And God…  thank you for this blessing of my life. Thank you for this opportunity to share the firsthand voice of what a child with cancer experiences. Thank you for the blessings for your dearly loved children that I know You have planned.

 I love you!

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Let the Awareness LIVESTRONG

Here it is, the final day of September. What a blessing this has been for me to share with you during National Childhood Cancer Awareness Month and also to learn more about it myself. One thing I just learned yesterday while reading the stories parents have posted about their children on the Oprah Please Do A Show on Childhood Cancer Facebook page, is that a baby can be born with cancer. I never knew that, did you???????? Another thing I learned is one of the warning signs of childhood cancer. A mom posted a photo of her child before he was diagnosed with cancer and one of his eyes showed a big white spot. She never knew this was a sign.

Imagine if we raised awareness of childhood cancer even one “rung on the ladder.” How many children’s lives can we save by helping adults become aware of symptoms? How much earlier will it be possible for a child to receive a diagnosis? Can we really catch childhood cancer in earlier stages– saving many lives???????????

I say, “Yes!”

If you really want to learn the truth about childhood cancer, “Like” the Facebook page and read the stories.

http://bit.ly/br6Mrg

Each one is unique, yet each story is similar because a child is suffering. One thing that strikes me is how many foundations have been born from a family’s grief over losing their child to cancer. This is such a momentous event in their lives that they need to make a difference for other families who must follow their path. What an unbelievable act of goodness and kindness!

Alexa would have turned eight years old this month. Her mom, Joann Nawrocki, turned the loss of her beautiful two year-old daughter, Alexa, into Alexa’s Foundation. Guess what Alexa just did for the teens at Children’s Hospital of Philadelphia? She bought them laptops so they can keep up with their schoolwork while they are in the hospital! And guess what Alexa bought for the younger kids at CHOP? A Slurpee Machine!

I am sooooooooooooooooo excited about the Children for LIVESTRONG event on Saturday! What great support I am receiving from teachers at school! My mom and I met Megan today, the manager of the Jamba Juice where the event will take place and she is excited too. They will have Blender Bikes for people to ride and blend their own smoothies! Now really, is that cool or what?

Get it? Blender Bikes– bikes– LIVESTRONG–Lance– I love it!

I’m ready to hop on my Blender Bike and whip myself up a Peach Perfection Jamba Juice:)

http://www.santamariatimes.com/extra/publications/the_adobe_press/article_8d76c490-cc03-11df-8332-001cc4c03286.html

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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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The Shrinking Pocketbook

I have touched on the subject of how a family’s finances get wiped out when their child has cancer. My health insurance company played nasty games.  Money is the last thing a family needs or wants to think about when their child is fighting for their life. What a horrible shame it is when people pay their health insurance premiums for years and then find it necessary to go into battle to receive coverage when they become ill. Childhood cancer is so much more than a child’s battle to stay alive– there are ugly monsters everywhere you turn and medical bills and insurance coverage are two of the big ones.

My parents never talked about money in front of me during my illness; I guess they figured I had enough to deal with. The way I see it, they had plenty to deal with of their own. I remember hearing my mom say one time that she didn’t care how much it cost… she would, “scrub toilets till I’m 90” if she needed to (in order to pay for my medical bills.)

This is something I really don’t get. Why is it that when a child leaves the hospital after a serious illness like cancer, their family is responsible for enormous medical bills– even when they have “good” insurance? And then, at the same time, if a prisoner needs medical care, our taxes cover it.  This twists my brain into shapes it really shouldn’t twist into!  Wouldn’t you agree that we need to switch this around? Let’s have our taxes cover treatment for children with serious life-threatening illnesses and make prisoners responsible for their own medical bills.

Having been “down the road I’ve been down,” I can honestly say that I would love to see our healthcare a top priority. What good are roads and schools if we are too ill to use them?

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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 at School

I love that LIVESTRONG has an educational program for school-age children. If you are a teacher, please consider taking a bit of time to educate your students. There is age-appropriate material, according to grade, and LIVESTRONG makes everything very easy for the user. Teachers can even get a free poster from the LIVESTRONG site when they teach material. 

http://www.livestrong.org/What-We-Do/Our-Actions/Professional-Tools-Training/For-Educators/LIVESTRONG-at-School-Curriculum 

One of the reasons I think it is extremely important for this information to be taught in schools is because nearly everyone’s life has been affected by knowing someone with cancer. Teaching children care and compassion for others at a young age needs to be a priority. This LIVESTRONG curriculum can help children truly understand what cancer patients are going through, and they will learn how they can help. 

When I returned to school after my treatment had ended, it was rough. It was rough with a capital “R.” I’m not sure who it was rougher on, me or my mom– who had to go into serious battle with the school district– so I wouldn’t die. If there are any cancer patients out there reading this who are about to return to school, or have returned to school and are having problems, my mom has some incredible letters that you are very welcome to use– so you won’t die. 

From Grace: A Child’s Intimate Journey Through Cancer and Recovery: 

School had become too much. Almost immediately, Mom and I realized that attending school for the entire day wore me out to the max. However, with Mom’s requests that I cut back my hours, the school system began to show their ugly side. Soon, they had my mom jumping through rings of fire, like some sort of crazy circus act.

  

Boy do 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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