A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Teenage Author’

Oprah Please Do A Show On Childhood Cancer

I will leave my current Twitter theme to let you know that the Oprah Please Do A Show On Childhood Cancer Facebook page is growing rapidly. If you visit the page tonight (And Please “Like” if you have not already 🙂 ) http://bit.ly/br6Mrg you will find great excitement about a news story that has “gone viral.” A story that aired in Kansas City with the founder of the page and her inspirations, girlfriend Deliece and her son, Braden (who are both fighting cancer,) is being aired in cities across the country tonight! This is awesome, awesome, awesome!

Okay, I see you shaking your heads and wondering… why Oprah? Why “awareness”?

What if just one parent learns to ask for a second opinion? What if just one teen realizes they need to speak up and tell someone they trust that they don’t feel well? What if one child with cancer sees the show and knows deep inside that there are people who care and there are people who are working to make things better for children with cancer?

What if viewers realize for the very first time that there is a Monster attacking our children?

What if a viewer who has lots and lots of $$$$$$$$$$$ they couldn’t possibly spend sees the show and decides to “fully fund” pediatric cancer research? (oooooooooo I love this one!)

Childhood Cancer

 We tell children that there are no such thing as “monsters,” but the truth is there is a monster that attacks from within and destroys in horrific ways.

The monster’s name is Cancer.

I’m out to get it.

Oprah Please… Pretty Please?

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KSBY 6 Interview– Oprah Facebook Page Movement for Childhood Cancer

When I decided to put all of those scribbles in my spiral notebooks into book form, I was entirely motivated by the belief my story could help others. This belief didn’t come easily. It took several times of being asked to speak at events before I realized how what I have been through needs to be shared. Now that Grace: A Child’s Intimate Journey Through Cancer and Recovery  has been  released, I see even more why God kept tugging on my heart– asking me to pour it into this project. There is nothing that makes me feel better on this Earth than being able to help someone else (okay, dancing is really, really close!) When other kids who are going through cancer, or their parents, contact me to ask for help with something, I gasp with amazement at how God can use something utterly horrendous and use it to bless those He loves. Wow. Double WOW!!!!!!!!!!!!

I feel change today. I feel hope today. My day began with an interview with Carina Corral of KSBY 6, San Luis Obispo, CA. We A Scarf for my Child Life Specialist, Jaynietalked about how this incredible movement has begun with parents, friends, and loved ones whose lives have been affected by childhood cancer. An amazing woman named Christine started the Facebook page, “Oprah Please Do A Show On Childhood Cancer” out of her loving care for her friend and her friend’s son who are both battling cancer right now. There is SO much that needs to change.

Did you know that when adults are diagnosed with cancer, only 20% of them have advanced stages of the disease and when children are diagnosed, 80% have advanced cancer. Many, many times, children are originally misdiagnosed (Hello, me!) and this leads to valuable time wasted and terrible progression of their disease.

Also, childhood cancers are different from adult cancers. Adult cancers are sometimes caused by lifestyle choices such as smoking and diet, but the causes of childhood cancers are largely unknown.

I am extremely grateful to Carina and to KSBY 6 for recognizing the HUGE need to air this information. We MUST do everything we can to put a stop to the #1 disease killer of our children.  My heart is bursting with gratitude, and hope is flying out!

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Hearst Cancer Resource Center

San Luis Obispo has a wonderful cancer resource center located right next to French Hospital. I have been told that before the Hearst Cancer Resource Center was established, there was no place in the area for support groups to meet. Tomorrow, I’m scheduled to share with a Leukemia, Lymphoma, Myeloma Group. Each time I have the opportunity to speak with cancer survivors, I am blessed by what they have to share with me. Funny how that works.

I visited the Hearst Cancer Resource Center once before (I dropped off a copy of Grace: A Child’s Intimate Journey Through Cancer and Recovery:)) Those who have created this special place for survivors have put a lot of thought, care, time and money into it. How touching it is that there are people and organizations that care… and they do something to show they care!

Talking with Mom on the way to dance today, the subject of meeting with the support group tomorrow came up. Our conversation came around to how there is no such thing as follow-up support groups for children who are cancer survivors. No such thing. At least not anywhere near where I live. I would imagine the follow-up support needs for children are much different from those of an adult.

I heard something the other day that broke my heart in two. A nine-year old girl named Abbey, who is growing her hair back that she lost due to chemo treatments, is mercilessly teased at school about her hair. Wish I could have just a few words with her tormenters. Children recovering from cancer treatments need support too. Lots and lots of support.

One more reason why I need to keep raising awareness…

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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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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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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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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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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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Memoir Writing Class

I had the pleasure of speaking with a group of people today who are taking a memoir writing class. It strikes me that the more opportunities that I have to connect with authors, the more I realize how important it is for us to do this. Writing is such a solitary existence– the human-ness in us needs the bonds.

Not only do we benefit from the “love bonds” between us, but there is always, always something new that we can learn from one another. There is no such thing as “smarter” or “better,’ but only our willingness to share the uniqueness of our lives and ourselves with each other. Seriously, when we learn something of value, we need to pass it on. I guess that the challenge is to look within ourselves to find exactly what that is that we have to share.

I realize, being only sixteen years old, that I do not have the wisdom and insights that others who have been on this Earth a long time have. The more I learn, the more I learn that I have bunches to learn. Maybe, because I am only sixteen, I just might have an insight to some things in life that my older counterparts would not recognize. Maybe, just maybe, I have something to share of value.

Actually, everyone has something of value to share. Our job is to find it– and give it away.

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Selling 10,000 Books at a Time

Does this post title grab the attention of my author friends?

I imagine your ears are perked as high as a German Shepherd ready to protect his family from danger. I received an email today from my friend, Matt, who wants to assist me in achieving exactly what my title states.  You can imagine that my ears perked up to their perkiest level and my brain started crackling with all that he wrote in his email. Don’t you love when someone shares their wealth of knowledge with you– just because they want to help others?

It seems that authors and publishers would hoard this information, fearing that helping others would result in even slightly higher sales of other author’s books. This just might send them to the poorhouse. But then… there are people like Matt. Without Matt, I would never have had a clue of how to go about getting my book published. And I never would have met Matt if I had not taken a spur-of-the-moment, hour and a half drive to Santa Barbara last February with my mom.

Sometimes the decisions we make, the teensy-weensy little decisions, end up making a huge difference in our lives– and even in the lives of others. More and more, I am learning that we need to reach out to life every chance we get. That “reach out to life” last February has to be one of the best decisions of my life!

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