A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Beyond the Cure, Beyond those Dreams

The National Children’s Cancer Society

“We serve as a financial, emotional, and educational resource for families that can’t make ends meet when their child is diagnosed with cancer. Since our inception, we’ve provided more than $57 million in direct financial assistance to more than 33,000 children nationwide, and we work closely with over 300 hospitals and pediatric oncology units throughout the US.”

There is no way I can count the times in these past months of my freshman year at Pepperdine that I look around, take in where I am, and then gasp– realizing how blessed I am. For anyone who has visited the campus, you know there are many long, steep staircases for students to navigate from one place to another– as Pepperdine is built into the Malibu hillside that looks out over the Pacific Ocean. There was a time, not so long ago, that I dreamed of being strong enough to just walk across my room. This not-so-distant memory creates a strong context for the world I now see around me. Being healthy enough to notice what is around me, being healthy enough to take part in the world around me, and being healthy enough to use my life to maybe help someone else’s is “Beyond” my wildest dreams of those days I was flattened on my bed.

Now, outside my dorm room, there is a view that… well… the vast, blue, expansive Pacific! I love the students, dancers, professors, and the atmosphere here! I love learning here. Before I began attending Pepperdine, I never even imagined a college where I would be able to combine my curiosity to learn Bio-Chemistry, my passionate desire to continue to DANCE, and my deep need to grow in my faith. I have all of that; I am so happy here I could scream… or cry… or both!

Without scholarships, my education at Pepperdine would be out of my reach. I am thankful to Pepperdine University, and also to one other organization that has helped me tremendously. The organization I am speaking of is the National Children’s Cancer Society and their Beyond the Cure Scholarship Program. I am very, very thankful to be a recipient of a 2013-2014 Beyond the Cure Scholarship.

http://www.beyondthecure.org/scholarships-2012-2013

I want to let my fellow student/cancer survivors know that the 2013-2014 Beyond the Cure Scholarship Program is now accepting applications. If you are younger than 25 and have been accepted to an accredited educational institution, and you are a childhood cancer survivor (diagnosed before age 18,) then I encourage you to apply.

Application

http://www.thenccs.org/Document.Doc?&id=219

Renewal Application

http://www.thenccs.org/Document.Doc?&id=220

Beyond the Cure Scholarship Information

http://www.beyondthecure.org/scholarships

“The Beyond the Cure Scholarship Program awards college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation. A total of $125,000 was awarded to 38 childhood cancer survivors for the 2012-2013 academic year.”

Application deadline is April 1, 2013

I am sending this off with great love and respect for my fellow survivors of childhood cancer. May you receive all the help and support that you need to reach for your wildest dreams…

… and don’t be afraid to reach even further… “Beyond” those dreams!

Go Waves!

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What A Gift to the World

This is International Childhood Cancer Day, a day we can learn to expand our focus on childhood cancer to include not just children in our own country, but throughout the world. For me, the problems of late diagnoses, toxic treatments, late effects, shortages of medicines, and a dire lack of development of new, more effective—less invasive—treatments keep me focused on all we need to do as a country. We have so much to do. This should not be discouraging, but encouraging. Be encouraged there is a growing army of people who know The Truth about childhood cancer. Be encouraged by becoming an individual who does their part. One way to do your part is to let our elected officials know that childhood cancer research is a top priority.

St. Baldrick’s Foundation has made it easy—like, really, really easy to contact your representatives.

Go ahead…. it takes just a few minutes, and you will know you did something to help!

http://www.capwiz.com/stbaldricks/issues/alert/?alertid=62399601

Did you do it yet???

Please don’t read on until you do!

If you would like to learn more about World Child Cancer:

http://www.worldchildcancer.org/who-we-are/our-latest-news/

One way that we will be able to better treat children with cancer in the future is to gather data on childhood cancer survivors. Alex’s Lemonade Stand is doing just this. If you are a survivor, or your child is, you have an opportunity to provide vital information that will help researchers develop better treatments for kids who come along after us.

Please take the time to help Alex’s Lemonade Stand in this very important mission and pass this link on to others who might be willing to help.

http://www.alexslemonade.org/treatment-journal

When we do discover those new treatments for more cures…

what a gift we will have to give the world!

What we really need, and really want, is an end to this…

“( ) passed away on January 25, 2011 from a glioblastoma multiforme brain tumor. He fought cancer for 3 years and 7 months. He was known for his compassion and kindness. He was once asked, “What would be the greatest super power that a person could have?” Ben’s response was simple, but powerful – “Forgiveness.””

“Even though he is nearing the end of his earthly life, he hangs on for the love of his family. Please keep them in your prayers and thoughts. No one parent should be in this position. No child should have to fight to live and especially not for 5 years, only for modern medicine to have still failed him. We Need A Cure! Too many families, too many children- It doesn’t make sense”

“Surgeon just came out for a break ( ) is doing great. Her tumors were a lot worse than they thought but praise God she has been able to remove the most difficult ones so far. The vascular surgeon is in there now reconstructing her iliac artery. She will finish removing the rest of the tumors and then reconstruct her ureters. Then she will apply the hot chemo wash to her entire abdominal cavity.”

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I Want to Make All of Them Full

Definition of “Full”

Containing or holding as much or as many as possible; having no empty space

This past Friday night, I had the honor of dancing at Wish Night for Make-A-Wish Tri-Counties. I had the honor, and the great pleasure, of dancing to Becca Solodon’s original song, “Through the Fire.” Becca was diagnosed with cancer when she was sixteen, and she lost one of her legs to the beast. I have known Becca for a few years, through the Teddy Bear Cancer Foundation where she now works. The most accurate way I have of telling you who Becca is…. is to tell you her photo belongs next to the word “SWEET” in every dictionary. She has dedicated her life to making a difference for kids with cancer. She has an unsurpassed special beauty in her voice and in the music she writes and performs.

Topping off the musical talent of the evening was Wish “Kid” Jessica McKenzie, who has studied voice at UC Berkeley. Her gorgeous vocal performance had everyone on their feet clapping when she was finished.

I was overjoyed to be there! The whole evening, I kept envisioning all of the kids I have met who are fighting for their lives. Looking at the people in the room, I gave thanks for their hearts. Some of the people there were Make-A-Wish volunteers, like John MacFadyen, who was the fabulous MC for the evening.

Some were Make-A-Wish employees, like Shanna Wasson-Taylor, CEO of Make-A-Wish Tri-Counties, who was honored for seventeen years of service. I must also mention Linda McKenzie, my most incredible Wish Planner! The others were those who had paid to come, people who gave more money for auction items, and people who raised their hands to personally choose and fund a portion of a child’s wish.

After several wishes were funded, there were no more hands raised, and John asked one more time. We all looked at the bar graph showing there were some children whose wishes were not fully funded– and there were some that were not funded at all.

There was a man who raised his hand…

“I want to make all of them full, ” he offered.

Poor John, I think he nearly fell off the stage. He was speechless. The entire room of people stood and applauded this man’s generosity. It was an incredible moment!

Full… “no empty space”

This generous man left “no empty space” in the hearts of the children. He made them all full. With this kind act, he left no empty space in his own heart either.

… I can “see” the kids everyone helped that evening. I “see” the moms and dads and siblings who will be blessed.

Hope and Joy and Love are beautiful things to share; this is what Make-A-Wish does as their specialty!

Gramma & Poppy, always supportive, were at Wish Night!

http://www.youtube.com/watch?v=2SZ0hJpwZMw

Childhood Cancer survivor Becca Solodon rehearses her original song, “Through the Fire” before Wish Night for Make-A-Wish Tri-Counties. It was an honor to be there… to dance to Becca’s beautiful music, and to help make more wishes come true.

Written

on February 12, 2013

World Cancer Day… “Clouds”… and Freedom

As human beings, we are endowed with freedom of choice, and we cannot shuffle off our responsibility upon the shoulders of God or nature. We must shoulder it ourselves. It is our responsibility.

~Arnold J. Toynbee

My emotions drift from one place to another on this day we call World Cancer Day. My first emotion is “Goodness Gracious” (honestly, words a lot stronger than that!) There is a killer loose and wild on our Earth who strikes everywhere at once—one who leaves a trail of destruction like no other disease here on the globe we call home. Until we trap, capture, and disable the enemy named cancer, we cannot truly be free. The People Shells we embody on Earth will forever be threatened, and perhaps even worse, our loved ones’ bodies will be threatened.

Adults do have some degree of control over preventing certain types of cancer, but for children, there is no known cause. In my case, I ate vegetables grown organically from our garden from the time I was born, which makes me skeptical of those who are quick to suggest that the cause for childhood cancer is diet. My hunches are that the causes are more tied to environmental and genetic factors, but hunches are just that, hunches.

Research, research, research.

I will say it again, research.

People often-times create New Year’s Resolutions; I would like to suggest we create a resolution and renew it yearly on World Cancer Day. If each of us finds even one thing we can do, one thing we can sacrifice, to bring “peace” to the People Shells of our world, imagine.

… imagine our world without cancer.

Zach Sobeich is fighting a cancer that has no more treatment options. This beautiful song, “Clouds,” is his love-gift to the world. Let’s share it widely– with great hope Zach’s music will inspire our world to be a safer place where we can live without fear.

https://www.youtube.com/watch?feature=player_embedded&v=sDC97j6lfyc

Please sacrifice, give to cancer research, support patients in their fight, and believe our efforts will lead to the extinction of cancer.

Freedom!

Bye Bye World Cancer Day…

Thank you Zach, for your inspiration and beauty in our world.

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Jack Andraka, Hope for Early Diagnosis

“A man of genius makes no mistakes; his errors are volitional and are the portals of discovery.”

~James Joyce

Finding cancer in early stages is a key factor to a patient’s survival. Jack Andraka, who happens to be fifteen years old, appears to have just changed the course of the future of cancer detection. Jack found out he won the Gordon E. Moore Award at Intel ISEF for developing a sensor that has tested 100% correct in diagnosing pancreatic cancer. I had to listen to this next part several times because I really wanted to believe what I was hearing…

Jack’s sensor can diagnose before cancer becomes invasive!

This video of Jack describing his work– and of the announcement of his win– is worth every bit of your time to watch!

http://www.youtube.com/watch?v=pmVzs3-GNBc&feature=endscreen&NR=1

Jack’s enthusiasm and joy seriously made me cry when I saw this!

Jack… Jack… you give me HOPE!

For those who advocate for children with cancer, this is breathtaking news. I realize that childhood cancers are different from adult cancers, but this discovery must also mean a whole new world of research possibilities for detecting childhood cancers at early stages. This is news that renews my hope that children with cancer will be diagnosed sooner. That terrifying statistic, “80% of children who are diagnosed with cancer are diagnosed at late stages, compared with 20% in adults,” will become one of the past.

Without a doubt, earlier diagnoses will mean less suffering and more lives saved.

Wow Jack!

I am so stinkin’ proud of you!!! Thank you.

I am going to have to do a Happy Dance with Willie the Wave!

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Letters to and from Jessie Rees’s Daddy

Be faithful in small things because it is in them that your strength lies.

~Mother Teresa

From Jessie Rees Foundation Facebook Page 1-24-2013

https://www.facebook.com/JessieReesFoundation

“My Jessie Journal:: Hi Sweet-Pea! I miss you so much. It has been really hard for us after your one year Heaven date. I think I have been medicating myself with busyness and not really dealing with some stuff that I need to. Bottom-line is I’m mad at God. I’m not turning my back on him but I am mad. It took me years to understand why He let my dad physically and emotionally abuse me when I was a little boy. But I’ve learned there are certain things in life that I won’t fully understand until I’m with you. So I will add that to my “talk to God bucket”. The main reason I’m mad now is the immense residual pain your fight has left on our family. I don’t like seeing your mommy, sister and little bro cry. I just want to take aware their pain like I wanted to take away your cancer. But I can’t. And as a dad that prides himself on being a great “daddy” not being able to take pain away and protect my kids is so hard. Then I think of the million+ other families that sit with the same residue in their heart. I have been able to help some of these families navigate their grief the last year, which is a good thing but I just reminds me of the broken brutal world we live in. This is not heaven!!! There is a little saying that says, “Life Hurts…God Heals”. I fully understand the “life hurts” part and want to believe God “heals” but after months of praying, pleading, begging, negotiating with Him for your healing and then getting no earthly healing it really was hard. So again, I’m left to “trust” in God. My counselor is challenging me to “fall back in love with God”. That seems so distant but sometimes in life there are situations that call for us to move forward despite our feelings and fears. So I’m going to focus on your little motto and message NEGU to keep my momentum going as I repair my relationship with God and strive to help mommy, Shaya and JT. NEGU on God and NEGU on Life is what I need to focus on. If you get a chance, please visit in my prayers. I would love to hear, “I’m ok daddy”. I know in my head you are but my heart would love to hear from you. Miss you tons, love your more and I will see you in a “wink”. I promise!”

Jessie’s father’s cry breaks my heart. It breaks my heart. Little kids are not supposed to suffer; they are not supposed to die. The emotional damage of childhood cancer is deep, and it’s something so painful that we have difficulty acknowledging it. If we have never experienced the horror ourselves, we feel much better not getting close to those feelings. Those feelings are unimaginable—if we even go to the place of imagining… oh my gosh… it might happen to us!!!

But the trouble with turning away is that this same nightmare will continue its devastation on children and their entire families. We must ask ourselves how we can stop it and then do everything we can, as fast as we can, to get it done.

We need research for cures for childhood cancer. With proper funding, cures are within our reach.

Dear Mr. Rees,

I can hardly see as I write this to you. I will always remember this message of yours. Before this day, I had already dedicated my life to doing all that I can to bring cures for children with cancer. What I want you to know is that your heart has renewed, inspired, and encouraged my fight.

If I may encourage you in your faith, it would be a great blessing. We hear all the time that “God is in control,” but what I would love for you to consider is that He gave all of us free will. If “our will” was to cure childhood cancer, it would have already been done. We are missing what is right in front of us. We have the tools, the resources, and the knowledge. But our will, as a society, is twisted into false perceptions because what we imagine to be truly important is oftentimes nonsense. One example… how much did we spend in the United States last year on cosmetic surgery? Since I asked this, I had to look it up… $10.4 BILLION…

I am so sorry for your tremendous loss. My prayer is that your pain will transform people’s lives– like it has mine– to help them to make choices based on care, compassion, kindness, and love. I pray you grow closer to our loving, living God. You have made an imprint on my heart forever. I wish there was a way I could thank you.

With hope for all of our futures,

Melinda

What can YOU do?

Please take a moment to sign this petition:

Light the White House Gold for the month of September to honor pediatric cancer fighters.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

St. Baldrick’s Shave

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

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Childhood Cancer… The Unspoken Beast

“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/

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Why I Shave… Max is Forever Seven

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.”

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.

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.

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

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Going Bald Again…This Time for The Kids

Brushing 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 30^th, 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.

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Lance Armstrong, Oprah Winfrey, and LIVESTRONG

At thirteen years old, Lance Armstrong was one of my greatest heroes. I admired and connected with him in many ways– as an athlete (yes, dancers are athletes,) as someone who had also faced cancer, and as someone who helps others fighting cancer. Friends and family know this about me, and many are asking me how I feel about Lance’s cheating and lying confession last night during his interview with Oprah Winfrey. I feel sick. He must feel sick. Everyone he has betrayed for so many years must feel sick. Lying and cheating create a tangled web that traps innocent people. Cheating creates a false fortress that can only be supported by lies. Lying builds the foundation for more lies.

Confession is good. Lance’s confession sets the table for forgiveness.

What makes me feel the worst is that I looked up to Lance as a hero—not because of his awards or celebrity status—but because I was touched by the kindness of his heart. I imagine those who are suffering the most right now are people who know him best… his family, close friends, and those who run LIVESTRONG. This brings me to the most important part of my post.

This year, for the third year, I will be a LIVESTRONG Leader. I have had the tremendous opportunity to visit headquarters and to communicate with employees at the foundation over the past two years. Although my main focus in advocacy is childhood cancer, I will continue to support LIVESTRONG because those who run the foundation, including CEO Doug Ulman, do an outstanding job of serving the cancer community.

This is a link to Mr. Doug Ulman’s interview this morning on the Today Show.

http://todaynews.today.com/_news/2013/01/18/16583667-livestrong-ceo-armstrongs-admission-brings-both-sadness-and-relief?lite

Sometimes I think too much…

As I was searching my mind for comparisons that will stress the importance of continuing support of LIVESTRONG’s services, even though its founder has fallen from Grace, I think of what would have happened to St. Jude Children’s Hospital if Danny Thomas’ reputation was “tarnished” in some way. My point is… the need would still be there.

The need is still here.

People are diagnosed every day with cancer. They need a place to turn for answers. They need navigation services. I know of no better place for this than LIVESTRONG. I know of no finer people to take your hand and lead you through the fight of your life.

LIVESTRONG was born through Lance Armstrong, but it lives on because of the millions of people who have shown their support for helping others in need. Please look beyond the media feeding-frenzy and remember the cancer patients who still need our help.

My heart breaks—not because I feel betrayed—but because I fear for those who may not receive the help they need. What if… what if this means less support for critical services that save lives?

I cannot accept that—not without fighting hard to keep hope alive.

Let’s move on to the business of saving lives.

LIVESTRONG

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Melinda Marchiano

A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Beyond the Cure, Beyond those Dreams

What A Gift to the World