A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Children’s Hospitals Hope Tour- My Make-A-Wish

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

 

 

 

 

Last Tuesday, Panera Bread in Santa Maria generously hosted my Make-A-Wish presentation party. When I walked in, there were beautiful decorations, a lot of delicious food, and loving people who were there to help me celebrate my wish. Thank you to everyone at Panera, to Cal Poly Sorority Chi Omega (they adopted my wish and raised money,) and to all of the staff at Make-A-Wish for your love and support.

                               

Staff at Panera Bread in Santa Maria, California

Thank you for hosting my Make-A-Wish Presentation Party!

Make A Wish Party Panera Staff

 Chi Omega from Cal Poly, San Luis Obispo, thank you for all of your fundraising work!

I want to send out a huge thank you to Linda from Tri-Counties Make-A-Wish for believing in my wish, and for your hours of work in support of my heartfelt wish to help children with cancer. Linda has believed in my mission, and has been working on my wish for a very long time. More to come on Lovely Linda…

Thank you to Chi Omega Sorority at Cal Poly San Luis Obispo!

Mom and I picked up our rental car on Saturday and began the loading process—boxes of books for the children, cases of water for the road, and just a few belongings for our month-long journey. Last year, we named our rental car Hugo the HopeMobile, so this year, of course, we needed to name our travel vehicle. A car name is not something you can pick out before you “meet” the car. So, after we had driven about thirty miles, up the Atascadero Grade, “his” name came to us. It fits perfectly. Our vehicle has been lovingly named, Herbert the HopeMobile. When we are feeling especially affectionate, we call him Herbie the HopeMobile. Herbert is adorned with childhood cancer awareness signs—he is one decorated box of hope!

 Yesterday was our first day of the Hope Tour. We left home at 9 a.m. on the dot, and as we turned the corner off of our street and onto my Gramma and Poppy’s street, there was something we could see up ahead of us. As we made out what it was, we began to laugh… Poppy was standing by the side of the road holding a sign, “Go Car of Hope!” What a great surprise, and what a beautiful and loving send-off my grandparents gave us!

Poppy and Gramma give us a surprise send-off!

Poppy and Gramma with loving send-off wishes for the Hope Tour!

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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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What if I’m Not Taylor Swift?

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

With all of the excitement this past week about Taylor Swift asking eighteen year-old cancer patient, Kevin McGuire, to be her date for the ACM Awards, I hope that our excitement will lead us all to look inside ourselves and ask what we have, personally, to give. I mean, what if our mere presence does not elicit the excitement that Taylor’s does?

What if I am not Taylor Swift?

I am so happy you have asked. We can do plenty. Remember the four-year old boy named Kyle who needs a bone marrow transplant and is looking for a match? If having an opportunity to directly save a child’s life appeals to you, please register with Be The Match. 10,000 patients need transplants, and only one half of those patients will receive one. The very generous woman below is in the process of donating.

Amanda Simas Giving Someone Life


 

This next story will inspire you; I bring you the example of Sean. Sean is not yet an adult, yet he is raising money for St. Baldrick’s in honor of his twelve year-old cousin, Maeve, who is fighting osteosarcoma. St. Baldrick’s funds more in childhood cancer research grants than any organization except the U. S. government.

Sean’s St. Baldrick’s Fundraising Page

For good measure, I am delighted—truly delighted– to bring you the final option I will suggest today.

You can fill a child fighting cancer with pure joy by making it snow!

http://triangle.news14.com/content/top_stories/654306/family-creates-snowy-scene-to-make-memories-with-young-leukemia-patient

How terrific it is to know we don’t have to be Taylor Swift in order to truly bring joy to children fighting cancer.

Time to get going now… to make it snow!

https://www.facebook.com/pages/Blake-Jordans-Miracle/140550415991818?ref=ts

Blake Jordan needs a miracle kidney

 

 

 

 


 

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Taylor Swift, Thank You for the Spoonful of Love

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

Dear Taylor,

Since I heard the news about your response to the invitation to go with Kevin McGuire to his prom, I cannot stop smiling. It is truly stupendous that, rather than declining the invitation to his prom, you created your own invitation for Kevin to be your date for the ACM Awards!

I want you to know that this gift you are giving to Kevin goes far beyond the actual evening of your date. Each day between now and then, Kevin has the gift of looking forward to meeting you. When treatment times get rough, he has your gift to help heal his body and heart. When Kevin kicks cancer’s rear into remission, your gift will also lead him to help others.

Your heart-gift does not stop there.

Do you realize the impact of your actions on the entire childhood cancer community?

You see, the world of childhood cancer is packed full of suffering and sorrow. Children endure tortuous treatments, and parents crumble as they watch what no parent should have to see—what no child should have to endure. The reality of fighting childhood cancer is that the fight goes on and on. Even when treatment finally ends, 2/3 of children who survive will deal with life-long effects from the medicines that saved them.

Because of all this, it is absolutely necessary to add huge doses of love to the treatment protocol for children with cancer. To these children who are fighting for their lives, every bit of care has enormous meaning. A smile, a warm hug, a laugh, an open heart… all of these are more precious than gold.

How do I know?

I am a seventeen year-old survivor. Moments of love gave me the ammunition I needed to fight to get well. I won’t ever forget.

This is why what you have done for Kevin means more than what you ever imagined, to a multitude of people. Although Kevin is the one who received your invitation, I feel as elated as if it were me who received your warmth and love. Your gift to Kevin is a huge spoonful of love to all of us who work to stop childhood cancer.

Thank you for your loving heart and for the huge spoonful of love,

Melinda

I found this video with your song… 

Taylor Swift “The Best Day”

Believe in Magic Children’s Charity Pirates and Princesses

Creating moments of love!

Reef was diagnosed three years ago today-- Go Reef!

http://www.savebabyreef.com/

 

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Share Dreams and Wishes with Kevin and Owen

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

As thoughts of Kevin McGuire and his second battle with leukemia raced through my mind today, I also thought of Taylor Swift and her incredible act of kindness in asking Kevin to attend the ACM Awards as her date. I am still awestruck by how fast word spread through Facebook, and I want to thank each one of you who took the time to like his page and pass on the request. I admit that I rarely watch TV, opting to dance every night instead, but I will be sure to have myself plunked in front of the television on April 1st so that I won’t miss a moment of “Kevin & Taylor” coverage!

Along with thoughts of Kevin today, I also thought about Owen McMasters. Owen and Kevin have something in common. They are both in need of the drug methotrexate for their treatments—the medicine shortage we have been so very concerned about.

Owen and his parents spoke with Sanjay Gupta on CNN about their concern over the shortage of methotrexate.

Owen has decided for his Make-A-Wish to wish that children will be able to receive the life-saving drugs that they need to live. What a heroic, loving, and generous wish! Yet, there is something very, very wrong when a child needs to use his Make-A-Wish so that children can get the medicine they need to live.

Shouldn’t this supply problem already be taken care of by responsible adults?

St. Baldrick’s gives us an update on the current shortages of drugs used to treat childhood cancer.

When we are speaking of a child’s life or death need for medicine, we must ask ourselves, who is responsible for making certain that each child who needs medicine will receive it?

Let’s all take responsibility; let’s make Owen’s wish come true.

“But how?” you ask.

Let’s make Owen’s wish come true the same way that everyone helped make Kevin’s dream date come true…

Please speak up and spread the word!

Owen McMasters

 

 

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Taylor Swift’s Surprise Response to Kevin McGuire

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

There is no end to what we can accomplish when we work toward a goal from our hearts. What Kevin McGuire’s sister imagined would never happen, took a highly favorable turn toward the Even-More-Than-Anyone-Can-Imagine. Thanks to everyone who supported the Facebook Page that Victoria McGuire created for her eighteen year-old brother, Kevin will have something incredible to look forward to, as he battles leukemia again.

Four short days ago, I asked readers for help liking Kevin’s Page…

https://gracemelinda.com/2012/02/22/will-taylor-swift-say-yes-to-kevin-mcguire/

Although the Facebook page asks Taylor Swift to go with Kevin to his prom, Taylor’s response one-upped the request when she found she was unavailable on Kevin’s prom night. Instead, she invited Kevin to be her date for the ACM Awards!

Taylor wrote this response to Kevin on her Facebook page:

 “Kevin, I’m so sorry but I won’t be able to make it to your prom. But I was wondering, the ACM Awards are coming up. Would you be my date? Love, Taylor”.

The news story:

This news thrills me in so many ways. I find it thrilling to think that Kevin’s spirits will remain hopeful and positive through the worst of times in his treatment. It’s thrilling to know there is a young celebrity walking in our midst that has—first of all—responded to this heartfelt request, and–second of all– has responded with utmost kindness and compassion.  

Clearly, Taylor Swift’s talents go far beyond what we have enjoyed musically. Her physical beauty and musical talents have Earthly limits, but she has shown her heart has a beauty and grace that knows no bounds.

Taylor, I will always remember how you have shown Kevin the love inside you that is not of this Earth.

May many others follow your lead…

Kevin is Going to the ACM Awards with Taylor Swift!

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