A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘St. Baldrick’s Foundation’

Childhood Cancer… The Unspoken Beast

Grace

 

 

“I give thanks for the gift of expression– the words to open minds and hearts. May my words be not just words, but clear, untainted truth.”

                                                                            ~Melinda 

 

Today… I would like to share something I wrote for Cancer Knowledge Network.  Every time I have the opportunity to write or speak about childhood cancer is a chance to raise awareness that will lead to funding for research that will lead to cures for all children with cancer. Thank you to Karen Irwin and Cancer Knowledge Network for the pleasure of working together!

http://cancerkn.com/childhood-cancer-the-unspoken-beast/

St  Baldrick's Flyer

 

 

 

 

Why I Shave… Max is Forever Seven

Grace

Is it possible for someone you have never met to influence your life in deep, profound way? I am not speaking of a famous writer, thinker, actor, athlete, or speaker. The person who has had one of the deepest influences on my life is a seven year-old boy… a seven year-old boy who will remain seven forever.  

Maxwell Kincaid Nunn was born on February 6, 2003. Max passed on Thanksgiving Day 2010. 

From Max’s obituary:

“Max was diagnosed with a Primitive Neuroectodermal Tumor (PNET) of the Central Nervous System (CNS). 

Max enjoyed was hunting & spending time with his dad. He liked riding his quad. Time spent hanging out with his friends, sitting by bonfires, collecting gadgets opening the mail & riding in his dad’s truck were some of the things that made Max happy. He also liked to go fishing, playing sports, and listening to music.

Max was an awesome individual with a heart melting smile that touched the lives of countless people across the world.”

Max Nunn

What I want people to know about Max is not written in his obituary. While Max was valiantly battling brain cancer– and at seven years old– he began raising money for pediatric cancer research. Yes, adults, please listen up. At seven years old, while existing in a body riddled with cancer, Max Nunn fully grasped the concept that we need to raise money for research in order to stop the beast called childhood cancer. I loved reading the posts each day where Max would open a pile of mail– envelopes with dollar bills in them that Max would send to St. Baldrick’s Foundation. His family shared his battle with photos, videos, and words of truth.  Max’s smile could melt the polar ice caps. Max’s personality could light up the world in the middle of a full-blown power failure. Max’s heart to help children fighting cancer lit a fire in me. I can never think of Max without hearing him say, “Two bucks, I mean it!” Max was serious about raising money for pediatric cancer research; he had no hesitation in asking people to give. It wasn’t for him… it was for the kids.

The Nunn family

There is no such thing as giving too little, only a matter of giving or not giving. Every “Two Bucks” matters. 

It’s no surprise that Max’s mom and sister have both shaved their heads to raise money for St. Baldrick’s Foundation. Max’s dad also works passionately for the cause of raising money for pediatric cancer research. I have tremendous respect for the Nunn family’s decision to share Max’s story with us.   Because they chose to share, I have been able to learn what we need to do to, what I need to do. If I can raise money for research by shaving my head, and honor courageous children by doing it, then bring on the razor. Over the next month, as shave day approaches, I will be sharing stories of childhood cancer warriors. I want to remember, and I want everyone else to know, I am shaving to honor them. I am shaving because I love them. 

 Max Nunn

I have been given the gift of loving this boy named Max… who will forever be seven.  Although Max will forever remain seven, the seeds he planted in me will grow like Sequoia Trees. 

My love for Maxwell Kinkaid Nunn the Great is one HUGE reason I will become bald again. I can hear Max saying it now, “Two bucks, I mean it!” 

Please consider a Two Buck donation in honor and in memory of Max.

http://www.stbaldricks.org/participants/mypage/579474

Going Bald Again…This Time for The Kids

GraceBrushing my teeth in a reflective daze, I stare at my shampoo bottle…I won’t miss it.  Nor will I miss my brush… bobby pins- none of them.  I imagine what it must be like to feel the tickle of the breeze on nothing but delicate fuzz.  Towel in hand, I think about how many strokes it would take to dry my head.  Staring into the mirror, I try to envision others’ questioning glances.  Oh that’s right- I knew… I know.  Yet recollection is a mysterious thing.   While I can vividly recall my chemo-ridden body reaching for the razor five years ago, the chaotic emotions of the time have instead been replaced with gratitude, excitement- hope.

            Who am I to have a choice?  They don’t.  I didn’t… once upon a time.  My own trials through cancer have been glossed over with the faces of kids around the country- of those whose stories I heard while sitting intently at their bedside.  Amazement continues to knock on my soul. 

There is no choice but to fight-  no choice but to bitterly resist the chemo bag hanging beside you, yet surrender to it…  place your absolute trust and hope in it.  What if… what if you had so much certainty in that little, seemingly harmless, bag that you could let go… trust… know.  That you could give in and not face fear of slipping… slipping…. leaving. 

This is my desire, and one that the St. Baldrick’s Foundation works towards daily.  The number once private funder of childhood cancer research, they hold events worldwide each year.  St. Baldrick’s raised $33 million last year; this money provides grants for researchers who are working tirelessly to find less toxic treatments and cures for those children who face, and will face the same beast I did.  As my heart overflows with appreciation for my own life, yet sadness that others still fight the battle I know all too well, I find that hope is the path that must be taken. 

I have decided to join in St. Baldrick’s mission and participate in an event that is taking place on March 30th, 2013 at Oakland Children’s Hospital.  The deal?  No more shampoo… no more bobby pins, brushes… or anything of that sort.  In an effort to be in solidarity with cancer kids everywhere, to raise awareness, and to raise money to fund research grants, I will be shaving my head…. again.

If I refuse…I lose.  It is as simple as that.  What is hair, anyway?  Something that keeps your head warm- something that gets tied back or covered up on bad days.  It can be straightened, gelled, curled, and colored.  However, many people don’t realize what else it can do- create awareness, provide greater funds for research, better treatments, and hope for each and every child fighting. 

I am just one person, but if everyone allowed that thought to build a wall in front of them, no change would ever happen… no amazing things would take place.  And so I choose to do what I can…give what I can in this life that can, at times, tell you to give up- to not give because “it is not enough.” I encourage you to do the same.  We never lose by giving… only by passing an opportunity to give our own unique contribution.

For information about St. Baldrick’s and their mission, please visit: http://www.stbaldricks.org

To support my individual participation, my team, and children with cancer everywhere, please visit:

http://www.stbaldricks.org/participants/melinda

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

“Failure Is Not An Option”

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

 

 

 

 

 

 

May the children suffer no more….may parents forever have their children…may all who turn a blind eye and think that this will magically happen by itself have their minds and hearts opened to who will actually propel change- them…us…you…me… ♥ ~Melinda

 

This is an excerpt from PAC2’s interview with Kathleen Ruddy, the Executive Director of the St. Baldrick’s Foundation.  This year, St. Baldrick’s has raised over $32 million dollars for pediatric cancer research. I cannot mention fundraising and St. Baldrick’s without giving a huge shout-out to ladies I love with all my heart, the 46 Mommas. I love how Kathleen Ruddy compares the mission of winning the “war” on childhood cancer to previous U.S. ambitious missions, like going to the moon…

In 1961, when President Kennedy challenged America to send a man safely to the moon and back by the end of the decade, he didn’t say, “but only if we stay within a certain budget.”  The goal was the moon, and the reason to shoot for the moon was to expand human knowledge, extend man’s exploration, and advance science.  He also acknowledged it would be hard and expensive.  We have no less ambitious a mission, and probably a more difficult one.  It’s also more precious as our children’s lives depend upon it and with them, our future.  

The notion of shared sacrifice is something our organization was built upon.  The World War II generation understood that each citizen must work and sacrifice together to achieve victory.  Our country came together again to win the space race.  It’s time we pull together again to finally win the war on cancer, and ensure that children fighting cancer not only survive, but thrive. 

This excerpt makes me think of a lot, including my brother Nicholas. When he was ten years old, someone asked Nicholas what his favorite movie was.

He quickly answered, “Apollo 13.”

(Yes, the person’s jaw dropped as he pondered the uniqueness of this ten-year-old’s choice in movies!)

 My brain dinged and chimed with quotes from Apollo 13 as they spun like pin-balls and connected to the world of childhood cancer…

 ***Funding for pediatric cancer research is critically low. Children have NO VOICE.

 “Houston, we have a problem.” ~Jim Lovell

 ***Far, far too many children are being tortured and taken away…

 “So long Earth. Catch you on the flip side.” ~Jack Swigert

***Kathleen Ruddy is correct. If our country will pull together with meaning, purpose, focus, and sacrifice, we can win the war against childhood cancer.

“With all due respect sir, I believe this is gonna be our finest hour.” ~Gene Krantz

***With seven children dying each day from cancer in the United States, it absolutely must be time—right now—to pour money, time, sweat, and guts into ending childhood cancer. We must treat this reality with the urgency it requires. Because…

“Failure is not an option.” ~Gene Krantz

Failure really is not an option. Warriors, like Lane, continue to fight while we either decide to act, or stand aside.

United States Flag for Lane Goodwin

Update for Lane:

“This morning has been a little better. Lane is a lot more lucid & calm 🙂 God is working really hard through Lane, us & others to bring awareness/funding/ cure to Childhood Cancer! We had a wonderful visit with Congressman Ed Whitfield, District Director Michael Pape & Field Representative Edward West. Lane was sleeping but he was excited to get the US Flag that was flown over the Capitol in Honor of him. We will have a big announcement this weekend :)”

Please feel free to copy, paste, and tweet!

We call the #NumberOneDiseaseKillerOfChildren in the U.S. #Rare #SoundsPrevalentToMe #ChildhoodCancer #FundPediatricCancerResearch

 

 

Stand Up 2 Cancer and Taylor Swift, Turning Tears Into Hope

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

“And we wept that one so lovely should have a life so brief.”

~ William Cullen Bryant

“One so lovely”…

The attention to childhood cancer in last night’s Stand Up 2 Cancer production was HOPE for my spirit. Stand Up to Cancer has partnered with St. Baldrick’s to create a Dream Team; research means HOPE in so many ways. There are children who need treatment options now, right now.

PAC2 brought me this great news in my inbox today! I could not summarize this or explain it any better:

“Headed into last night’s show, while SU2C had funded some childhood cancer specific research, it had yet not formed a Pediatric Dream Team (i.e., larger, higher-dollar, multi-institutional research projects).   There are seven existing SU2CDream teams.  

But yesterday’s show and the collaborative efforts of St. Baldrick’s and SU2C are going to change that.  It almost seemed like the majority of the show was focused on kids!  Having Julia Roberts caution viewers that cancer “kills a child every four hours in this country.”  Having Justin, St. Baldrick’s Ambassador Kid, featured so prominently, having Taylor Swift dedicate her song to Ronan, and the hearts touched by Avalanna’s story are all giant leaps forward for childhood cancer awareness!!  Reaching a nationwide audience no matter what channel you tuned in!!  Leveraging our ‘normal’ audience an order of magnitude, or two!! 

 Hopefully a prime example of Awareness–>Funding–>Research–>Cure”

Thank you to PAC2 for always bringing us updated news!

Taylor Swift’s song to Ronan:

http://www.youtube.com/watch?v=1ITrd7fM6aY

When we see the faces of childhood warriors, the youngest among us who fight cancer, they seem to always, always have a smile, even when their suffering is great. While they suffer, they think of others. They don’t want others to be sad because of their suffering. They don’t want to be their suffering.

“People know me for my happiness. I don’t want people to think of me for sadness.”

~ Jack Bartosz (August 24, 2012)

And so these brilliant spirits among us teach us strength. They teach us about courage and about what is truly important in our lives. They teach us not to be petty, or mean, or frustrated. Instead, their characters lead us to better ourselves. They lead us to the paths of compassion, gratitude, acceptance, and pureness of love.

I love them. I love these children with every speck of my heart. For this reason, I am one very happy Melinda! Stand Up 2 Cancer has stepped up to the plate for the kids!

SU2C, YOU ARE AWESOME!

Taylor Swift…

I keep searching for the words to thank you for your beautiful song, but it’s hard for me to see the screen while I type– and there are no words. If you could see the tears falling over my cheeks, you would instantly know the extent of my gratitude. Tears of the gratitude type speak volumes. Thank you!

To all of my AMAZING nurses, and to all the others… Thank you!

Did you know you can Be a Part of The Cure?!

 

 

 

 

 

 

 

 

Hope Tour– Long, Winding Road as we Dance to the Music

 

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

 

 

 

“If you don’t know where you’re going, any road will take you there.” 

― George Harrison

 

 

If I had to choose the most spectacular drive of our Make-A-Wish Hope Tour, it would also be the day of our longest drive. It would have to be our drive from Salt Lake City to the Grand Canyon, a fourteen-hour day on the road. We left Salt Lake City early in the morning, with Herbert The HopeMobile loaded down with our freshly cleaned clothes. Mom and I were excited– really, really excited to see what wonders of nature were waiting for us to explore!

Although Bryce Canyon was a bit out of our way, there was no way we could drive past the sign pointing to the side road without turning. Mom had been there with her family when she was a teenager, and she had told me about the spectacular beauty. As we climbed out of the car and headed up a hill for our first view of the canyon, I had no idea what awaited me on the crest of the hill. It took awhile to fully comprehend that what I was looking at was real!

Bryce Canyon on Make-A-Wish Hope Tour

I watched the teeny-tiny-sized people hiking in the canyon below and wished we had more time here. I felt teeny-tiny. I felt like the whole entire world was spread out before my eyes to behold. I felt blessed to be standing there looking at a sight that appeared way too special to be viewed by mere human eyes.

Can You Hear the Music?

 

 

 

 

“And those who were seen dancing were thought to be quite insane by those who could not hear the music.” Nietzsche

A dear friend sent me this quote. I love it on so many levels that I don’t even know where to begin telling you how much I love it! Taken literally, it is a gorgeous way of explaining why dancers dance. Not only do dancers “hear the music,” but we need to dance when we hear it. Taken figuratively, this quote is a beautiful explanation for why there are growing numbers of people joining together to stop childhood cancer. They are people who “hear the music.” They are people who hear the call to “dance.” It makes no difference what type of “dance” they do, whether it is ballet, modern, lyrical, hip-hop, or jazz, as long as they “dance to the music.”

One extraordinary example of this is 46 Mommas. Someone with little or no understanding about the great need for childhood cancer research would look at these women who shave their heads to raise money for this cause and think that they were “quite insane.” Those who “hear the music” know that these women are not only much more deeply connected to it than the rest of us, but they are “dancing” as gracefully as they can to “the music.” These women who have a very personal connection to childhood cancer also have a clear understanding of the great need for swift, strong action. Their selfless “dance” — raising money by shaving their heads– helps those who are currently “deaf” to hear. It turns The Unaware into The Aware. Thank you to all of the “Mommas,” and to one “Sister,” Leah Mireles, for Shaving for the Brave and for raising money for St. Baldrick’s and childhood cancer research!

Road to the Grand Canyon

The Glory of Nature on the Hope Tour

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!

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!

 

 

 

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!

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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