A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Letters to and from Jessie Rees’s Daddy

January 25, 2013

Grace

 

 

 

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

St Baldrick's Flyer

 

 

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Childhood Cancer… The Unspoken Beast

January 22, 2013

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

 

 

 

 

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Why I Shave… Max is Forever Seven

January 21, 2013

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

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Going Bald Again…This Time for The Kids

January 20, 2013

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.

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Lance Armstrong, Oprah Winfrey, and LIVESTRONG

January 18, 2013

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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The National Children’s Cancer Society and One Day Soon…

November 12, 2012

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

Article 23 “Children who have any kind of disability should have special care and support, so that they can lead full and independent lives.”

~From UNICEF Children’s Rights and Responsibilities Leaflet

http://www.unicef.org/rightsite/files/rights_leaflet.pdf

Ask any childhood cancer survivor about survival, and they will undoubtedly tell you about people and organizations that helped them through their darkest of times. Thankfully, there are organizations that help survivors live “full and independent lives.” The National Children’s Cancer Society is one of these vitally important organizations.  I am personally grateful to NCCS for assisting me with my education at Pepperdine University with a Beyond the Cure Scholarship.  After suffering the financial devastation that comes along with childhood cancer, families are in even greater need of assistance to send their children to college.  Offering educational scholarships is one of the ways that NCCS gives “special care and support” to children who are fighting—or have fought—childhood cancer.

The National Children’s Cancer Society’s mission:

“The mission of The National Children’s Cancer Society is to improve the quality of life for children with cancer and their families worldwide.

We serve as a financial, emotional and educational resource for those in need at every stage of illness and recovery. In the United States, we ease the financial burdens that accompany major illness, give crucial support and address the challenges of survivorship. Abroad, we provide lifesaving pharmaceutical drugs and medical supplies to facilities that treat children with cancer.”

http://www.thenccs.org/AboutNCCS

The history of NCCS is fascinating to me. This organization was born in the late 80’s because BMT’s, bone marrow transplants, were becoming viable forms of treatment for some types of childhood cancers, but insurance companies would not cover the cost.

“Since its inception, the NCCS has provided more than $57 million in direct financial assistance to more than 34,000 children. The organization works closely with over 300 hospitals and pediatric oncology units throughout US and reaches thousands more through its ongoing education programs and materials.”

NCCS’s Pediatric Oncology Program, or POP, provides emotional and financial assistance to families in the midst of the emotional and financial devastation that is childhood cancer. They recognize that the burdens the families bear are extraordinary. NCCS even assigns caseworkers who will guide families through the treacherous, unknown “waters” they have been thrust into. The peace of mind of having someone available with information/advice makes this an enormously valuable service.

http://www.thenccs.org/help_during

Educational Services are one other type of service that NCCS provides, through web conferences for healthcare professionals and childhood cancer survivors and through regional survivorship conferences.

http://www.thenccs.org/webconference

“The National Children’s Cancer Society’s Beyond the Cure Survivorship Program provides funding to hospitals across the U.S. to host survivorship conferences in their local community.”

Schedule of Web Conferences:

http://www.thenccs.org/regional_conferences

 In addition, The National Children’s Cancer Society provides educational services for pediatric oncology nurses. Ped/Onc Nurses can earn up to eight hours of continuing education credit, with no charge. They will award one credit hour for each program.

https://www.thenccs.org/sslpage.aspx?pid=715

One final way NCCS serves to educate about childhood cancer is through publications and video available through their website.

http://www.thenccs.org/pubs-vids

The National Children’s Cancer Society is able to provide “special care and support” to children with cancer and to survivors through:

Private Donations:

https://www.thenccs.org/donateGeneral

Fundraising Teams:

http://www.stayclassy.org/fundraise/team?ftid=6717 

Corporate Partners:

http://www.thenccs.org/corporatePartners

Events:

http://www.thenccs.org/events

I must comment on this one–my dad, Stooge-fan-extraordinaire, will be first in line for this one!!!

Thrift Stores:

http://www.thenccs.org/thrift

Charity Vending:

This is a way for business owners to help children with cancer and their families.

 http://www.thenccs.org/charityvend

Treasure Chest Vending:

“The NCCS has partnered with Accessit Corp. of Canada on its new Treasure Chest machines. As their exclusive US charity partner, this program generates support for our Pediatric Oncology Program.”

http://www.thenccs.org/treasureChest

In addition to all of the services and resources I have mentioned, The National Children’s Cancer Society acts swiftly to assist families in times of natural disasters, like Sandy. Disrupted communication services caused by super-storm Sandy left children in treatment in even more danger, and NCCS acted to bridge those temporary gaps.

I love that NCCS was born out of a huge need that they filled, helping save children’s lives and families’ financial stability. I love that NCCS has a huge variety of services available to help families in the middle of the Crisis Of Their Lives. I love that NCCS recognizes the difficulties of survivor-ship and how they provide where there is great need.

Finally, I am grateful to NCCS for my Beyond the Cure Scholarship. I will always be grateful and show my gratitude by giving everything I have to my studies. May my cancer story come full circle to be able to help children through their cancer journey, to help gather funds for pediatric research, and to one day be able to conduct my own childhood cancer research—that will lead to cures for childhood cancer.

The National Children’s Cancer Society gives me hope; they give me hope that one day there will be no need for a National Children’s Cancer Society. Without a doubt, I know they feel the same.

One day…

One day soon…

Austin Munoz –Moorpark Football Senior Night

http://www.nationalchildrenscancersociety.com/

http://www.melindamarchiano.com

https://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076?ref=hl

 

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What I Know About Lance Armstrong

October 18, 2012

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

 

In three words I can sum up everything I’ve learned about life: it goes on.

~ Robert Frost

 

 

Thank you, Mr. Frost. Sadly, this applies to cancer as well. “It goes on.”

Two and a half years ago, when I was beginning the publishing process for my book, I began sending out requests for endorsements.  I found it fascinating that this was one of the very first steps; I found it fascinating that authors receive their endorsements from sending out the first couple of chapters before it is even edited, before the book is even complete.  I soon learned reasons why this is so.  People have very busy lives, and reading an entire book is beyond what most will invest for an endorsement request. Secondly, it takes a very long time to retrieve the endorsements from the requests before an author can compile their advanced praise for their work.

What I learned about human nature was one of the most valuable gifts that I received from being involved in the book endorsement process.  Responses were nearly all genuine and caring, even when people were “too busy” to take a look.  Each time that Grace would receive an email with an endorsement, I would be thrilled.

I remember the day clearly when an email arrived– not just any email– an endorsement for Grace from Lance Armstrong! What this meant to me, and what this still means to me, is something beyond our worldly vocabulary. I had read Lance’s book, It’s Not About the Bike, during my cancer treatment and received strength from it for my fight.  I had admired and respected his compassion and dedication to create LIVESTRONG.  Personally, I knew many survivors who had been helped tremendously through LIVESTRONG’s navigation services.  I knew of, and was grateful for, LIVESTRONG’s programs that teach children in schools about cancer.  Reality called and I also realized that Lance Armstrong was a “celebrity,” which meant the chances of him ever looking at anything that Little Ol’ Childhood Cancer Patient Melinda wrote were slim to none.

Was I ever wrong about that last one!

“In her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, Melinda Marchiano offers an honest and inspiring portrayal of her cancer experience through the eyes of a teenager and proves there is medicinal value in love and laughter. Melinda and I share a common bond. We are survivors. And we believe in the importance of empowering fellow survivors to live life on their own terms. By sharing her story, Melinda is giving a voice to this global epidemic that needs immediate attention. I am grateful to Melinda for having the courage to speak up and for her generosity in helping others fighting cancer.”

—Lance Armstrong

It is true that Lance and I share a common bond.  As survivors, we share an understanding.  As survivors, we share a passion to help others through the nightmare that is cancer. As survivors, we work to continue to “empower fellow survivors to live life on their own terms.” As survivors, we step up to the challenge of “giving a voice to this global epidemic that needs immediate attention.” 

What I do know about Lance Armstrong is that he is passionate about helping cancer patients— even young cancer patients who write books with the hope of helping others. 

What Lance Armstrong has created through LIVESTRONG is nothing short of a treasure of services for people who want to survive.  For some, these services mean the difference between life and death. LIVESTRONG services are vital.

This is undoubtedly a difficult time for everyone at LIVESTRONG. I want to send my sincere thanks to you for your outstanding work, and to encourage you to continue ahead with pride for all that LIVESTRONG provides and all that LIVESTRONG accomplishes.  You have my continued support.

http://blog.livestrong.org/2012/10/17/lance-armstrong-to-step-down-as-chairman-of-livestrong/

What I also know now about Lance Armstrong is that he wants LIVESTRONG to LIVE ON.  Lance chooses to save lives.

Me too…

LIVESTRONG Leader Assembly March 2012

Thank you LIVESTRONG, for 15 years of serving the cancer community!

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“Failure Is Not An Option”

October 3, 2012

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

 

 

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This Symphony will be a Masterpiece– “Music” to Change the World

October 1, 2012

 

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

“Every great dream begins with a dreamer.

Always remember, you have within you the strength,

the patience, and the passion to

reach for the stars to change the world.”
~Harriet Tubman

Patience is a tough one. We live in the age of The Instantaneous, which makes patience even more difficult to learn, being direly devoid of societal examples. But, anything worth our time and attention also requires our patience. I say this as I think of Mike Gillette, who has been pouring himself into the production of the childhood cancer documentary, The Truth 365. This project is not only enormous, it is delicate. Maybe it is because of this delicacy that it has never been done like this before. The World of Childhood Cancer is a sticky, tricky place to step into. Further, the thought of gathering information from diverse sources and compiling it into a visual call to action for pediatric cancer research is overwhelming to me! His task is nothing short of Conducting a Symphony. Only someone with tremendous love and passion would take on such a task—only a dreamer. Without a doubt, after meeting and working with Mike, I know he is a dreamer. Without a doubt, he has the “patience and passion to reach for the stars to change the world” of childhood cancer.

Our impatience tells us, “Hurry up and release the film!!!” Wisdom takes over and lets us know that there must be very good reasons for the wait. As this project has developed, it has taken on a “life.” There have been surprises and opportunities arising each day, and I trust Mike completely—which means patience. I admire his patience in choosing to make this film the best it can possibly be, and making the priority the children, instead of the awaiting, impatient audience. I will be the first to admit that I cannot wait to see it; I cannot wait to share it. When impatience knocks, I envision Mike juggling all kinds of things I could never imagine, and my selfishness shamefully subsides. Mike loves the kids, and his vision, compassion, and passion will be clearly evident when The Truth 365 is complete.

Thank you to all of the families, childhood cancer patients, siblings, doctors, teachers, and volunteers for your contributions of time and for your outpouring of support for this project. I patiently await the masterpiece I know will be arriving, via Mike Gillette, our Change the World of Childhood Cancer Conductor. 

Blessings to you Mike. May mountains move… all for our dearly loved children.

“For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice – no paper currency, no promises to pay, but the gold of real service.”       ~ John Burroughs

*** Thank you to Carina Corral and KSBY for your continued support to help children with cancer!

http://www.ksby.com/news/documentary-on-childhood-cancer-hosted-by-a-nipomo-teen-cancer-survivor-set-to-be-released-sunday/

Go Lane! Fire Department New Albany, IN

More and more support for Lane Goodwin!

Someone showed their love for this little boy by making him a Halloween Costume that included his wheelchair!

Update for my last post– Justin’s Tribute to Avalanna 9-29-12

http://www.youtube.com/watch?v=2sh3tmWFlB4&feature=youtu.be

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Justin and Avalanna, Mr. and Mrs. Bieber

September 26, 2012

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

 

 

 

 

 

 

 

Broken hearts.

News today of Avalanna’s passing is heartbreaking. This beautiful little girl has captured the hearts of millions of people who have come to know her as “Justin Bieber’s wife.”

This morning,

RIP Avalanna is trending on Twitter.

https://twitter.com/i/#!/search/?q=%22RIP+Avalanna%22&src=tren

Avalanna’s Story from Stand Up To Cancer

http://www.youtube.com/watch?v=mYRaPMcyL_g

Avalanna’s bravery, her exuberant personality, and her sheer loveable-ness needs to become a part of all of us. We, as adults in this complex society, tend to focus on the little daily things that pester and annoy us. When we look into the face of Avalanna, when we hear about all that she has dealt with, when we feel the pure, sparkling love spilling from her into our lives, we realize our focus is not where it needs to be. We realize we have a responsibility to respond.

Our response needs to be love for all children fighting cancer.

What joy Avalanna must have received from all of Justin’s love and attention! This really, really touches me. I will never forget what it meant to me to have love and support from someone I looked up to during my cancer treatments—Patricia Barker.

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

My hands began to shake, and my eyes became two glaciers, melting and forming rivers upon my cheeks.

 Patricia Barker . . . oh my gosh. I had watched her farewell performance at the Pacific Northwest Ballet in Seattle the previous June, in celebration of my thirteenth birthday. She inspired me. Her fluidity, musicality, and strength left me in awe. I was stunned by her grace . . . inside and out. Gasping for breath, I looked to Mom. I remained speechless. There were no words, truly, no words. Soaking up the beautiful moment, I realized that cancer had created it. Well, not cancer itself, but me having it. It was these times that I saw the other side of cancer. I knew I would not be standing there—my body numb, my eyes gushing, and that letter in my hands—if not for it. Cancer is battle after battle, struggle after struggle. And then, something beautiful happens that keeps you going.

 Venturing back into the package, my hand met something hard. The object was not in view, but I knew, from the feel and shape, exactly what it was. The only thing was . . . I didn’t believe it. My mind wouldn’t let me. Delicately pulling the precious gift from its royal sheath, a flash flood occurred in my eyeballs.

It was pointe shoes . . . her pointe shoes.

 “To Melinda” was visible on the tip of one shoe.

A gold ribbon tied the two slippers together, creating an almost angelic presentation.

 Oh my gosh. My heart pounded. I could not believe what was happening to me. After suffering so much, I almost felt it was too good to be true, like I didn’t deserve it or anything. My mouth hung open, my breathing was awkward, and my face was hot and red from crying. I lost it—completely lost it. Burying my head in my arms, I cried so hard that it hurt. Never had anything touched me in such a way. To hear encouragement to keep fighting from someone who I admired was breathtakingly unimaginable.

 Her letter was filled with wisdom, hope, and an understanding of what it is like to have a hindrance affect the dance in your life. She also told me that when I beat cancer, I would dance again with a new love and passion. Her certainty made me believe her and gave me a ray of light in the view of my future.

 She concluded by saying, “I will look for you on the big stage of life.”

 Ms. Barker, your words are eloquent, and they’ve had a huge impact on my life. What you did for me will forever remain in my heart.

 I believe Avalanna has taken all of Justin’s love straight to heaven with her. What a beautiful, heart-wrenching, uplifting, and inspiring story of love! My prayer is that this Love Story will inspire many others to open their hearts and give everything inside it away.

 Justin, please don’t stop. You may be young, but your actions show mature compassion and strong leadership. Please keep leading with love.

 Avalanna…

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