A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for March, 2012

Why I LIVESTRONG

Grace: A Child's Intimate Journey Through Cancer and Recovery

“The goal of ours has never been the biggest. It’s to have the most significant impact. We can’t do it without you”  ~Quote from @LIVESTRONG Twitter Page

I find myself in Austin, Texas today. I am here to attend a LIVESTRONG Leader Assembly. Two hundred leaders (serious cancer ButtKickers!) from around the world have gathered here. It is no secret that I am focused on doing all that I can do to end childhood cancer; I also know that the mission of LIVESTRONG is one I absolutely need to support.

When people hear the word, “LIVESTRONG,” most know the organization has something to do with Lance Armstrong. The last middle school I spoke at, the kids had no idea of who Lance Armstrong is! I was excited to tell them who he is, what he has accomplished, what he has created, and to give them yellow LIVESTRONG wristbands. They were then excited to go tell their friends about Lance and LIVESTRONG.

What I have learned about LIVESTRONG has given me a great desire to help them achieve their goals. I have tremendous respect for the respect they have for their fellow humans. I find that compassion, understanding, intelligence, commitment, dedication, tenacity, and guts define LIVESTRONG.

Rather than attempt to summarize the LIVESTRONG Manifesto, I will copy it in full below. If you know someone who has just been diagnosed with cancer—someone searching for treatment options— calling LIVESTRONG is an excellent place to begin gathering information. This is just the tip of the iceberg for the help they have to offer.

The LIVESTRONG Manifesto (from www.livestrong.org )

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is LIVESTRONG.
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet.

I am grateful to have been chosen as a 2012 LIVESTRONG Leader. I look forward to using everything I learn here to truly make a difference in this world for people fighting cancer.

Did you know that LIVESTRONG has a program called LIVESTRONG At School? http://www.scholastic.com/livestrong/

If you are an educator, you can have a huge impact in the life of a child by sharing this information.

Now, more meetings… more knowledge… more cohesiveness… more hope!

For these reasons and many more… I choose to LIVESTRONG !

 

 

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Wait a Minute… I AM Somebody!

Grace: A Child's Intimate Journey Through Cancer and Recovery

“I wondered why somebody didn’t do something. Then, I realized I am somebody.”

~Author Unknown

One of the most disturbing facts surrounding childhood cancer is the lack of development of new therapies over the past couple of decades. Yes, I mean decades. While a multitude of technological advances, ahem– such as the worldwide web—have seen an explosion of growth, the treatment of childhood cancers is burdened with shortages (methotrexate) and the absence of new therapies. The bottom line here seems to be money. Producing drugs that are needed to fight childhood cancer is not profitable. The factories and labs that were in top shape in the 1970’s are now run-down and outdated.

It’s easy for all of us to think that the economy is bad, or childhood cancer will never affect me, or believe someone else will step in to take care of it all.

The Bottom Bottom Line is we need to act now to provide a life insurance policy for our children of the future.  If money for research is what it takes, then we need to show our care for children by taking responsibility for developing new targeted therapies. Imagine a vaccine that prevents cancer. Imagine.

The truth is we do not even know what causes childhood cancer.

Shouldn’t every one of us want to know what causes it? Every day brings newly diagnosed children, and every day brings death. I want to thank Amy Baldwin and Jordan Smith for allowing me to use Jordan’s photo collage in my post yesterday. Of sixty-six children in the collage, twenty-six children have passed. One third.

Supporting Alex’s Lemonade Stand, CureSearch, and St. Baldrick’s will help us find cures for childhood cancer faster. This is a race, and this is war. I want all of us to be the Navy Seals who put an end to the tortuous reign of childhood cancer.

Your “Navy Seal” opportunities of the day:

Hold a lemonade stand to raise money for Alex’s Lemonade Stand & pediatric cancer research

If you enjoy walking, join the CureSearch Walk in Raleigh N.C.:

Or… give to St. Baldrick’s in memory/honor of a child who has fought cancer… for example, Ethan Jostad

I see two choices here.

1) Be ostriches with our heads buried in the sand (scared you, didn’t I?)

2) Believe, “I am Somebody” and act accordingly.

What a smile, Ethan!

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Where Have You Gone, Mr. Rogers?

Grace: A Child's Intimate Journey Through Cancer and Recovery

Since my post yesterday, I am still scratching my head, trying to figure out why even highly educated people in our society are grossly unaware about childhood cancer. An even more important question surfaces next… how can we change this?  

“It’s easy to say ‘It’s not my child, not my community, not my world, not my problem.’ Then there are those who see the need and respond. I CONSIDER THOSE PEOPLE MY HEROES” 

~Fred Rogers

 Could it be that there are people who are saying, “It’s not my child, not my community, not my world, not my problem”? No wonder it was always such a nice day in Mr. Roger’s neighborhood!

 What I aim to accomplish with this little ol’ blog of mine is to let the world know that, even though I am technically still a child myself, I consider these children my children. Their problem is my problem.  I see their tremendous need and I must respond.  These incredible children fighting cancer are my heroes. I aim to keep telling people of their heroism.

 Quote from the mom of a brave Warrior Princess:

 “My warrior princess is kicking butt this morning! She guzzled down her first prep in record time-like less than 10 minutes flat! Her IV went in smoothly with little fuss, and now her second prep is going down-a little slower, but she’s working on it! Next up-CT scan-and she’s a pro!!!! ♥”

 Quote from Patrick Doughtie, father of Tyler:

“Seven years ago, almost to the minute, I lost one of the most important persons in my life… my son, Tyler. As I reflect on how beautiful of a person he was, his gorgeous smile, his athleticism, his love for God, his family and people he met, I find myself smiling and thanking the Lord for the time that I did have him. I know he had a purpose here and he served the Lord well then was called home. So many things have changed since that day, some I regret but I find myself in a happy place today. I know that without going through what I did with my son, I wouldn’t be the person I am today. Though it was difficult getting to where I am, it’s been worth it knowing the lives he changed through his life and even through the movie God allowed me to share. I’m waiting for the day I’m able to join him, though I pray I have many more years upon the earth to do God’s will for my life!”

 If you have seen the movie, Letters to God, you know Tyler’s story.

 Each child’s story is unique. Each child’s story matters.

 These are our children. This is our problem.

 Who will choose to be heroes for them?

 Hero opportunity:

 Send emails to your Members of Congress to support specific legislation:

HR 3737 the Unlocking Lifesaving Treatments for Rare Diseases Act or ULTRA
S 606/HR 3059 the Creating Hope Act
Rare Disease Congressional Caucus

Each Child has a Story that Matters

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Intelligence and Awareness– Two Different Things

Grace: A Child's Intimate Journey Through Cancer and Recovery

“If we are to teach real peace in this world, and if we are to carry on a real war against war, we shall have to begin with the children.”                                                                                                                          ~Ghandi

 Each time I speak at a book club, I learn something new. Last Friday’s Book Club for AAUW (American Association of University Women) was no exception. This is one thing I learned: if a woman is highly educated, it does not necessarily mean that she knows anything about childhood cancer. One woman admitted to me that she had wiggled and struggled to get out of reading my book because the subject of childhood cancer is not one she wants to explore. She then admitted she was very glad she did read it. She went on to ask excellent questions, even giving me multiple opportunities to explain that when children are diagnosed with cancer, 80% have advanced stages of the disease. They were dumbfounded when I told them that this figure is only 20% in adults—because adults are much more aware and those who treat them are as well.

Their intelligent minds went on to develp another important question, “What causes childhood cancer?” I will bet that most Americans can tell you what causes cancer in adults. I will further bet that most Americans cannot tell you what causes cancer in children.

Top medical professionals cannot tell us what causes cancer in children, so how would anyone else know? I answered their question by telling them the truth, “We do not know what causes any of the twelve major types of childhood cancer. We just don’t know.”

This is one huge reason why we need to pour money and time into childhood cancer research. I learned yesterday about Gabrielle Sassin, who is raising money for St. Jude Children’s Research Hospital in honor of his sister, who is a survivor.

“My son is participating in the math-a-thon to raise as much money as he can for St. Jude in honor of his big sister a cancer survivor and many others just like her. He only has 2 more days left, Will you please help him in his effort, each day he comes home from school he asks me to check his page, it would be really awesome if I told him he made it to $300 today:) Here is the link to his page, if you cannot donate anything please share his link, at least go check out his page because he feels very important and cool to have a page of his very own. Here is the link….”

https://waystohelp.stjude.org/sjVPortal/public/displayUserPage.do?programId=551&eventId=288156&sectionStyle=subMenuTwo&userId=792250

This reminds me of how Lily Nunn shaved her head to raise money for St. Baldrick’s to honor the memory of her brother, Max. When I see young children acting for the benefit of other children in need, it gets me. It really, really gets me. Instead of claiming their “right” to be a carefree, self-centered kid, they decide to turn the care in their hearts into more than just care.  Instead of being carefree, these special children give their care freely.

When I see children leading the way to work for good, creating hope, and shining like brilliant examples of goodness, I feel blessed. Kids like this give the rest of us a good rep!

Thank you to all the Little Hope Creators.

 

I think this doggie needs to be a Therapy Dog!

 

 

 

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Spark Lighters

Grace: A Child's Intimate Journey Through Cancer and Recovery

“There can be no keener revelation of a society’s soul than the way in which it treats its children.”                                                    

~Nelson Mandela, former president of South Africa

 It is a good thing when we are reminded of the importance of human life and the importance of living our lives the best we can live them. Daily life has a way of running us into ruts where we discontinue maintaining our concern for other humans. Then, we lose a bit of our own humanity. It takes a spark to get our humanity back. Gradually, we see our fellow humans clearly. We see their needs, their sorrows and their suffering. Because we have that Spark, we see our part, our purpose, and we move forward with purpose to make change.

One huge Spark in my life has been a seven year-old boy (who should have turned nine on February 6th) named Max Nunn. The day I saw his face and heard how he was bravely fighting brain cancer, I fell in love with his heart. I fell in love with a little boy named Max. I watched how, at seven years old, Max raised money for St. Baldrick’s & pediatric cancer research, “Two Bucks” at a time. I don’t think a day ever goes by that I don’t think of Max.

Following a child who is fighting cancer on Facebook or CaringBridge helps educate us about what kids and their families are facing. There is so much we can learn. Our hearts will grow, not shrivel.

Some Facebook sites:

Braden’s Army

Emmalee’s Angels

1,000 Candles for Baby Reef

Anjali’s Army

The Spark can even spring moments of laughter from where there is utter chaos.

In this video, a toddler with cancer laughs for the first time after chemo. I am grateful for the Spark someone lit inside of him!

I believe when you watch the video… this little boy will light a Spark inside of you.

Oh yes, he lit my Spark, he did, just like my buddy, Max.

I love this photo of Max. The SPARKle in his eyes gets me every time!

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