A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

National Siblings Day — Alex’s Lemonade Stand and SuperSibs!

 

Phoenix Children's Hospital, Make-A-Wish Hope Tour

Phoenix Children’s Hospital, Make-A-Wish Hope Tour

Today, April 10th, is National Siblings Day. This annual celebration honors the relationships of brothers and sisters. Although Siblings Day is not recognized federally like Father’s Day and Mother’s Day, 39 of our states have official proclamations recognizing Siblings Day. Claudia Evart created the concept for the holiday in 1997, to honor the memory of her sister and brother.

Siblings of kids with cancer have an enormous burden upon them. They live with fear of losing their brother or sister. They watch their sibling suffer in ways that children should never have to witness. They step to the background so their parents can attend to life-threatening issues and provide care  that steals all of their time. They continue with their so-called “normal” life while their sibling and at least one parent are away at the hospital. They try their best to bring joy to their family when their family is falling apart. They sit with their ill sibling just to be with them. To any sick child, this is the greatest of all gifts… time. These kids are SUPER!

Today, Alex’s Lemonade Stand announced it will be working with the organization SuperSibs! in the near future, to provide support for siblings of children fighting cancer.

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From April 2014 Newsletter from Alex’s Lemonade Stand:

“ALSF is going to join forces SuperSibs!, an organization that has worked to support siblings of children with cancer since 2002. SuperSibs! was established when Melanie Goldish’s older son was diagnosed with leukemia, and she was unable to find support services as her younger son struggled to cope. Goldish hoped to fill that void, creating SuperSibs! to focus on the well-being of siblings who may experience fear and isolation as their brother or sister fights childhood cancer.”

To view this new program on their website: www.AlexsLemonade.org/supersibs   

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Today on Twitter, Beads of Courage tweeted a photo of their Sibling Program Guide for kids at Phoenix Children’s Hospital.

https://twitter.com/beadsofcourage/status/454390377772875776/photo/1

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Tweet: “This is the Sibling Program Guide for kids at @PhxChildrens with a brother or sister in the @beadsofcourage program.”

Do you know a sibling of a childhood cancer patient? They need us. They need our time. We need to show them they are extremely important. Thank you to Alex’s Lemonade Stand, SuperSibs!, Beads of Courage, and all of you out there taking care of the kids who are taking care of siblings fighting childhood cancer.

Go SuperSib Zach Hofen….. Z-Force!!!

 

Guinness World Record Shave for St. Baldrick’s Foundation on the Today Show

David Alexander, Guinness Record-Holding Barber

David Alexander, Guinness Record-Holding Barber

What a great day it is Today! Childhood cancer advocate and barber, David Alexander, teamed with St. Baldrick’s to break the record of the most heads shaved in one hour by one barber. In the past, David has raised over $600,000 for pediatric cancer research. I read that he even has a St. Baldrick’s tattoo on his chest!  Today, David shaved 73 heads of hair back to their shiny domes live on the Today Show to beat the world record– with eleven seconds to spare. This record shave is a huge thrill for everyone working to end childhood cancer. Hearty congratulations and thank you, David!

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“I think we’ve established that Bald is Beautiful!” ~ Savannah Guthrie

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Hearty thanks go to all the volunteer “shavees”who have formed teams, raised money and awareness, and traveled to leave your hair behind. I’m thankful St. Baldrick’s sent out an email to alert us about what would transpire this morning! As I tuned in, feelings of excitement rushed through my heart. I was happy to see St. Baldrick’s on the Today Show, because awareness is extremely important! I was happy to know that a lot of money was being raised for childhood cancer research. I was routing for David to break the record. And then…

St. Baldricks Record Today Show Shave 003

The camera turned to the very first person who would become bald. I recognized her immediately as Susan Heard. Memories of her son, David, and his origami cranes filled my mind, then my heart flooded with sorrow. My eyes filled with tears. I could see the celebratory mood of everyone in the crowd, but my eyes would not leave Susan’s eyes. As only another mom could, I felt I could see in her eyes what she was feeling at that moment. It was all for David. It was all for love.

I lost it.

Viewers of the Today Show this morning got a short glimpse into the world of what “lengths” childhood cancer advocates are willing to go to in order to make a brighter future. Record-breaking excitement, hair flying to the ground, and Today Show appearances are great. What is beyond great is that people like Susan Heard are choosing to use their pain to lead all of us.

Susan Heard ~ David’s Warriors

http://www.stbaldricks.org/teams/mypage/94079/2014

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“Bald never looked so beautiful.”

                                                          ~Al Roker

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Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Six Year-Old Joseph Maroney on the Today Show 4 -9 -2014

 

Would you like to make a donation on this record-setting event & help fund childhood cancer research?

http://bit.ly/Donate-to-the-record-breaking-event

 http://www.today.com/news/close-shave-barber-sets-guinness-world-record-cancer-charity-2D79506021

http://www.stbaldricks.org/

https://www.facebook.com/46Mommas

https://www.facebook.com/StBaldricksFoundation
Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

Mr. Jon Lester, Please Meet Mr. Tony Stoddard. Light Major League Baseball Gold for September

 

Red Sox Pitcher Jon Lester

Red Sox Pitcher Jon Lester

There was a story in the news last week that grabbed my attention because our family is what you call “a baseball family.” Melinda’s brothers played Little League ball, her dad coached, and she sat in the stands for countless games, cheering her brothers on. My first trip to a major league baseball game was to see the Red Sox play at Fenway Park in Boston in the late 1960’s. Gosh, do I ever I remember the excitement of seeing the Green Monster and my favorite player, Yaz—Carl Yaztremski. So, when I read last week that Boston Red Sox pitcher, Jon Lester, is raising money and awareness for pediatric cancer, my Red Sox Fan Meter went sky high.
Jon Lester was diagnosed with non-Hodkins Lymphoma in 2006; now he and a few of his teammates, along with players from other teams, are working on a project called “Never Quit” to encourage children battling cancer. For many children, meeting a major league ballplayer would be the thrill of a lifetime. For children in cancer treatment to be able to meet Jon- a cancer survivor himself- has got to be highly inspirational and even healing.

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“Lester has big plans to expand the program, in Boston and beyond. He hopes to bring in players from other sports to help, especially in cities that don’t have baseball teams.”
                                                                                                                                                                      ~Don Fair, coordinating producer of Fox News’ Los Angeles bureau

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Is there anyone else thinking what I am thinking? I think Mr. Jon Lester needs to meet Mr. Tony Stoddard. In case you missed yesterday’s post about what Tony Stoddard is doing to help children with cancer, you must know!
https://gracemelinda.com/2014/04/07/a-day-of-yellow-and-gold-to-fight-childhood-cancer-tony-and-cole/
Every time I hear of someone using their lives to help children with cancer, it inspires me and encourages me to do the same. Whenever I join with others who feel strongly about the importance of making a change in the world of childhood cancer, the results of the outcome of our work jumps exponentially. This is what will happen when Jon and Tony meet. Tony, I think Jon might know one or two people in the Front Office at Fenway Park. I think Jon might know a bit about how one would go about Lighting Major League Baseball Stadiums yellow and gold for Childhood Cancer Awareness Month in September.
And the best news of all, Tony, I will bet—I will double-down—that Jon has a heart that is willing to help you make this happen. Jon, will you please help honor these warriors? Will you please help Tony spread awareness that will lead to funding for cures? From the work you have already done, you’ve demonstrated you feel our children are worth every bit of effort and sacrifice. Thank you for all you are doing, Jon, and thank you for your consideration to step up to the plate to accomplish even more… for Tony… for Cole… for all the kids who should never have to face the Monster. The only Monster I want our children to face is that big Green One I marveled at as a kid at Fenway Park!

http://www.foxnews.com/sports/2014/03/31/opening-day-ace-jon-lester-hopes-to-shut-out-childhood-cancer/?intcmp=latestnews

Tony and Cole

Tony and Cole

Guest Blogger: Lee Marchiano

“A Day of Yellow and Gold to Fight Childhood Cancer” Tony and Cole

 

“A Day of Yellow and Gold to Fight Childhood Cancer”

What a world this would be if…

…if we would choose to take care of our children first.

Tony Stoddard is a leader in the world of childhood cancer advocacy, believing our kids deserve the best we can provide. Melinda and I have great respect for this man, his mission, and his brilliant campaign to color our country gold for Childhood Cancer Awareness Month in September. Along with Tony, we honor the memory of his son, Cole.

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“This past September I was mired in grief at the loss of my precious five year old son Cole. He passed away from neuroblastoma cancer on January 20th 2012. I created my page “A Day of Yellow and Gold to Fight Childhood Cancer” to honor the memory of my son Cole and all children who have faced the monster that is Childhood Cancer.
I am determined that we will never go through another September without the gold of Childhood Cancer Awareness shining everywhere. Without awareness childhood cancer will remain underfunded and ignored, leaving many thousands of children to continue to suffer through antiquated treatments and to have less than the best chance to survive this monster. I am unwavering in my attempts to see gold each September on town buildings, on the White House, on the fields of the NFL and MLB, on ribbons worn by celebrities, politicians, and media personalities. I want to see as much gold in September as we see pink in October! Our children need and deserve this!”
                                                                                                                 ~Tony Stoddard, Cole’s Dad

  (From People Against Childhood Cancer (PAC2) website)

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I am not sure where or when the motto, “Women and children first” went out of style. I have a sneaky suspicion it left the moment our nation decided money is paramount. I have suspicions it left because treating children with cancer is not a profitable business, unlike treating adult cancers. I suspect it left because we have lost ourselves in adult selfishness.

Today, I ask you to take a stand with Tony for Cole. Take a stand with Tony for all the children who have fought, have suffered, and have taught us that they are worth every bit of “guts” we need to spill to see they receive a much different future. Tony is right. Without awareness, kids with cancer will continue to be treated with “antiquated treatments,” and funding for research will remain frighteningly low. If you haven’t already, please like Tony’s page to color our country yellow and gold. While you are there, tell him how much you appreciate what he is doing for our children. Tell him his heart and the “guts” he is spilling for our dear children are making a difference. Steer your heart under Tony’s wings and help his mission to end childhood cancer soar!

https://www.facebook.com/yellowandgoldforcole

https://twitter.com/smilesforcole @smilesforcole

Smile, Be Happy (Cole’s Song)

https://www.youtube.com/watch?v=ZSn2WcSo9fc

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Advocacy Opportunity!

Please give a few moments of your time to be an advocate for kids with cancer.

From Kids V Cancer Facebook page today:

#endchildhoodcancer “Please post this pic and put the hashtag #endchildhoodcancer on your status. For every photo shared Hyundai will pledge another $1 to AACR Pediatric Cancer Programs, up to $5,000… as many times possible until Wednesday!”

https://www.facebook.com/kidsvcancer?hc_location=timeline

Can you say "Viral"?

Can you say “Viral”?

 

 

 

                   Ready, set, go!

 

 

 

 

 

Guest Blogger: Lee Marchiano

Melinda will be back soon!

 

 

“Talk is (Bleep); We Need Action” — The Truth 365

“Stop Talking and Start DOING!”
                                              ~Gabriella Miller
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Gabriella tells us to “Stop Talking and Start DOING!”

https://www.youtube.com/watch?v=QaoqnILa0l4

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Are you laughing and crying at the same time after watching and hearing ten year-old Gabriella express her opinions about our elected officials? One of the greatest things about being around kids is they tell you exactly how they feel. Is there anyone else who feels they need to hug her and give her high fives?

The signing of the Gabriella Miller Kids First Research Act by President Obama is the result of a long, arduous, and fervent campaign spearheaded by two of the most passionate people Melinda and I have ever had the blessing of meeting, Mike Gillette and Dena Scarpelli-Sherwood. This progress for childhood cancer research can be traced back to their hearts to help children with cancer and to their willingness to dive into the unknown and “stop talking and start doing.” They produced The Truth 365 Childhood Cancer Documentary to raise awareness, raise funds for research, and to gather petition signatures, all with the goal of uniting the childhood cancer community to work together to end childhood cancer.

http://m.whitehouse.gov/photos-and-video/video/2014/04/03/president-obama-signs-gabriella-miller-kids-first-research-act

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“Talk is (Bleep,) we need action.”
~Gabriella Miller
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“WOW…A 10 YEAR OLD WITH MORE BRAINS THAN ANYONE IN WASHINGTON!”

 The Truth 365 Childhood Cancer Documentary
The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to children fighting cancer. The film features compelling and inspiring stories of children and their families fighting cancer as well as interviews with political leaders and several of the country’s most respected pediatric oncologists. With the help of thousands of volunteers and highly focused social media campaign, the film will inspire millions of people to show their support for children with cancer. Host: Melinda Marchiano
To learn more about The Truth 365, visit www.thetruth365.org or Facebook at www.facebook.com/thetruth365film .
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“By combining the powerful medium of documentary with the viral nature of Social Media, we aim to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, the nation’s top pediatric oncologists and several influential celebrities. In this election-year we need for our politicians to hear the cries of these children and their parents, who are desperate for funding, less toxic treatments, and ultimately a cure.”
~Dena Scarpelli-Sherwood
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http://www.thetruth365.org/one-voice/
http://www.thetruth365.org/petition/
My hope is that Gabriella, Mike, and Dena will educate you, enlighten you, and inspire you to do more than talk about making a difference in the world of childhood cancer. Let’s play Follow-The-Leaders, or become leaders ourselves. There is no time to waste. We must begin Smashing Walnuts today.
Thank you Gabriella, Mike, and Dena. Thank you!
http://www.smashingwalnuts.org/

The Truth 365 Childhood Cancer Documentary

The Truth 365 Childhood Cancer Documentary

Gabriella Miller Kids First Research Act Signed by President Obama

“If I go, if I lose my battle then I’m going to want other people to carry on this war.”

                                                                                   ~Gabriella Miller

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Today, something extraordinary happened in the world of childhood cancer. President Obama signed the Gabriella Miller Kids First Research Act into law, with Gabriella’s family present. Gabriella was diagnosed with a brain tumor at nine years old, and became a fierce advocate for childhood cancer research before cancer stole her at ten years old. As you can see from her quote above, she now needs all of us to carry on the “war.”

http://abcnews.go.com/Health/wireStory/obama-signs-cancer-research-bill-memory-girl-23182252

http://www.wjla.com/articles/2014/04/gabriella-miller-kids-first-research-act-to-be-signed-into-law-101786.html


“This Act may be cited as the Gabriella Miller Kids First Research Act.

Termination of taxpayer financing of political party conventions; use of funds for pediatric research initiative”

The full text:

https://www.govtrack.us/congress/bills/113/hr2019/text

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“When you get cancer, you have to be all grown up and you don’t really get a childhood.”

                                                                                                                ~Gabriella Miller

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While I am feeling happy along with other childhood cancer advocates over what happened in Washington today, I cannot help but think of the Miller family. What did it feel like for them to be there for the signing today? How are they ever dealing with the grief over their loss of Gabriella? One of the things that strikes me most when I watch Gabriella’s videos is when she says, “If I die, I will be with my friends.” What an enormous burden these childhood cancer patients carry, not only fighting for their own lives, but emotionally fighting for their cancer-stricken friends as well.

If you have never “met” Gabriella, you absolutely must. Gabriella shows wisdom that comes only through suffering. The purity of her soul and her message will grab your insides and squeeze them until only love remains. Sweet Gabriella, may your mission continue. Your spirit lives. Your spirit will save the lives of many children in the future. To Gabriella’s family, thank you for raising a child with such tremendous insight, grace, and love. She has forever made an impact on my life. May she forever have an impact on our nation and our on our world.

http://www.thetruth365.org/2013/04/04/welcome-10-year-old-gabriella-miller-to-the-truth-365-documentary/

Gabriella Miller’s words: Sugar, Protein, and the need for Constant Awareness

https://www.youtube.com/watch?v=4a7NZxNMpcA

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“My biggest fear is that a little child is going to die.”

                                                                    ~Gabriella Miller

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

 

Guest Blogger: Lee Marchiano

A Hero’s Welcome for Zach Hofen

 

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Zach Hofen is ten years old. Melinda and I first met Zach three years ago when we traveled to Kansas City, Kansas to participate in Braden’s Run, a fundraiser for Braden’s Hope Childhood Cancer Foundation. Braden is Zach’s younger brother. Braden was diagnosed with Neuroblastoma in December of 2007, the exact same month Melinda was diagnosed with cancer. Unlike Melinda, Braden’s fight against cancer continues to this day.
From Braden’s Caringbridge site:
“Braden was admitted to Children’s Mercy on Friday, December 28, 2007 after a visit to the ER for abdominal pain. A chest x-ray revealed a large white shadow across most of the right side of his chest and extending partially across the left side. A CT scan determined that it was a solid mass, which doctors suspect is a Neuroblastoma, a rare tumor found in infancy and early childhood.”
Braden has endured unimaginable pain and suffering, yet he continues to be an amazingly bright- spirited boy. Without any doubt, Braden’s family has been an enormous factor in his ability to stay positive and stay alive. His parents, Deliece and Brian, are more educated about Braden’s illness than many doctors will ever be. The Hofens have struggled through piles and piles of “bad stuff,” yet, incredibly, this is a family who gives other families hope. Deliece posts beautifully written pieces of her heart about Braden’s illness on Caringbridge and also in her blog, No! This is SERIOUSLY My Life! Amid all the chaos of treatment, they made time to found Braden’s Hope for Childhood Cancer, to be sure they would make a difference in the lives of many other children.
And this brings us to our hero, Zach. We don’t often think of the effects or the challenges of siblings of those battling childhood cancer. Most of their parents’ time and attention is gobbled up by caregiving. The household has illness living there; there are no “normal” days, yet they are still “normal.” They have constant terror from witnessing their brother or sister suffer and constant fear that death will take them away. In the case of this courageous sibling, Zach has made a hero’s choice and he has completed a hero’s deed. Zach is a bone marrow donor, and his recipient is his brother, Braden. Not only has Zach supported his brother and family with his wit and exuberant personality through the past difficult years, but he has given LIFE to Braden. Deliece says, “Zach is hilarious and has many “Zachisms”. He keeps us laughing every day! “
Zach and his Dad, Brian, return to their home from Children’s Hospital of Philadelphia in two days, on Friday, April 4. Family friends are planning a Hero’s Welcome for Zach! If you live anywhere near Olathe, Kansas, or if you are able to get there somehow, please, please give Zach the warmest, most sincere and grateful welcome home there could ever be!

Big Brother, Zach! You are a Hero!

Big Brother, Zach!
You are a Hero!

Details are in these links!

https://www.facebook.com/BradensArmy
http://www.caringbridge.org/visit/bradenh/journal/view/id/533c2331ca16b42c0269d871
https://www.facebook.com/deliece.hofen/posts/10152337426025970

 

 

Time to Take Action– 2014 Childhood Cancer Action Days

2014 Childhood Cancer Action Days

Registration opened today for the 2014 Childhood Cancer Action Days in Washington, DC. The Alliance for Childhood Cancer will be the host of this two-day event that will encompass advocacy training and Capitol Hill meetings with Congressional Representatives. The training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. Childhood Cancer Action Days not only educate people who want to learn more about how they can institute change, but they provide everyone in the childhood cancer community an opportunity to share their concerns about current issues before Congress.

Schedule

Monday, June 23, 10:00 am- 6:30 pm / Training and issues presentation, by Soapbox

Tuesday, June 24, 8:00 am- 5:00 pm / Kick-off and Hill visits

The Alliance for Childhood Cancer is a uniting force in the childhood cancer community. The following is a list of members in their organization from their website.

American Academy of Pediatrics , American Cancer Society , American Cancer Society Cancer Action Network , American Childhood Cancer Organization , American Society of Clinical Oncology , American Society of Pediatric Hematology/Oncology , Association of Pediatric Hematology-Oncology Nurses , Association of Pediatric Oncology Social Workers , B+ Foundation , Children’s Brain Tumor Foundation , Children’s Cause for Cancer Advocacy , Children’s Oncology Group , CureSearch for Children’s Cancer , Leukemia & Lymphoma Society , National Children’s Cancer Society , Pediatric Brain Tumor Foundation , Sarcoma Foundation of America , Society of Pediatric Psychology , St. Baldrick’s Foundation

Melinda and I just registered. I encourage others who share our passion to make a change in the world of childhood cancer to do the same. You don’t need to be a member of any of these organizations to register; parents, survivors, and all advocates are welcome.

We need research. We need less toxic treatments. We need access to medicines. We need supplies of medicine that don’t run out. And the list goes on…

This is the registration link!

http://www.allianceforchildhoodcancer.org/events?eventId=855348&EventViewMode=EventDetails

H.R. 2607: Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act

https://www.govtrack.us/congress/bills/113/hr2607

H.R. 2019: Gabriella Miller Kids First Research Act

https://www.govtrack.us/congress/bills/113/hr2019

We need to act and do much, much more to end the suffering of our children. Please join Melinda and many others who are devoting their lives to make sure there is change for the better.

Bear and Chemo Bag

Guest Blogger: Lee Marchiano

 

Delaney Clements, Kamryn Renfro, and a St. Baldrick’s Shave Challenge for Caprock Academy

Kamryn Renfro has taught our entire nation a lesson in friendship. Just 9 years-old, she shaved her head in solidarity for her friend, Delaney Clements, who is battling cancer. Like I wrote yesterday, kids teach us. I imagine what a great friend Delaney must be to Kamryn for her friend to want to do this for her, and I applaud the compassionate selflessness Kamryn showed with her beautiful act of love for her friend. However, Caprock Academy, the school Kamryn attends in Grand Junction, CO, sent her home on Monday, stating she was violating their dress code. She could come back if she wore a wig.

The dress code “was created to promote safety, uniformity, and a non-distracting environment for the school’s students,” Catherine Norton Breman, president and chair of the academy’s board of directors, said in a statement.“

There is so much wrong with this, I do not even know where to begin!

Number 1:

I do not understand a school “dress code” that does not allow “bald heads.” There are people who cannot help being bald—including kids with cancer. Are we actually this unaware that kids get cancer? Is it not enough that children stricken with cancer have to lose their hair? This “policy” is antiquated. Will Caprock Academy send a child who is fighting cancer home until they come back with a wig? Ugggggggh! Please, Caprock Academy, strike that policy down now!

Number 2:

Hello, compassion? This is a crystal-clear example of selflessness. This is a brilliant example of friendship at its best. I would love to see Kamryn honored rather than reprimanded. I would love to see Delaney honored for the beautiful person she must be to have a friend who loves her so. These are the exact values we need to be teaching our youth. Let’s make an example of them, and honor them.

Number 3:

On Tuesday, the school’s board of directors took a vote that allowed Kamryn—with a special “waiver”– to come back to school. The vote was 3-1 in her favor. 3 to 1? Who is the “1,” and what objection could they possibly have? Gosh, if I could speak with that person… if I could open up that brain… or maybe that isn’t the problem area. It very well could be the heart.

Number 4

May this media storm bring lots and lots of attention to St. Baldrick’s Foundation—and not just attention, but throngs of people willing to shave their heads to help raise money for pediatric cancer research. Wouldn’t it be FANTASTIC if the Caprock Academy administrators atoned for their error by shaving their heads for St. Baldrick’s? We all make mistakes. We are all on a path of learning to become better people. There is nothing like turning mistakes into victories. I say, “Shave!”

“The whole reason we chose head shaving was to be in solidarity with kids who are going through treatment. I can’t believe people could miss the point like this.”

– Tim Kenny, co-founder, St. Baldrick’s Foundation

News Stories

http://www.foxnews.com/us/2014/03/25/girl-barred-from-school-for-shaving-her-head-to-support-friend-with-cancer/

http://www.denverpost.com/news/ci_25418689/girls-shaved-head-draws-national-furor-at-grand

More about Delaney

https://www.facebook.com/donationsfordelaney

http://www.miraclepartyfoundation.org/#

Melinda's St. Baldrick's Shave

Melinda’s St. Baldrick’s Shave

B+ Foundation "It

 B+ Foundation! Hope Tour 1

bepositive.org

 

Childhood Cancer Advocacy Momentum — Connect Connect Connect

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My name is Lee, and I am Melinda’s mom. As a college sophomore, Melinda has responsibilities that make time for blogging difficult. Sleep is a rarity. The world of childhood cancer still goes on, which means this blog about childhood cancer needs to continue. Melinda has invited me to be her guest blogger until Pepperdine lets out for the summer.

Since the time of her treatment, six years ago now, we have worked together as a “team” to help children with cancer. Having a strong focus to help others was instrumental in Melinda’s physical and emotional recovery from cancer, and I have no doubt it has helped me as well. There is something indescribable about helping others when your very own self is falling apart. Isn’t it true we feel as humans that we need to have our act together before we can help anyone else; we need to have all of our “ducks in a row” before we have “extra” to output for others. The plain truth is, we are often more compassionate, more understanding, and more helpful when we are broken, mangled, or bent. Any parent whose child has fought childhood cancer falls into this broken, mangled, or bent category. I am no different. My heart will never recover from the terror of Melinda’s suffering. But… I will rejoice every moment of every day for the rest of my life that she has come through the suffering. I intend to take this mangled heart of mine and form its love into a huge, fierce fire– a fire that will light the world of childhood cancer.

The childhood cancer community is a community no one chooses or dreams of joining. We are “drafted.” Not long after I was drafted, I realized I needed to “Enlist.” My love for children is so deep, so great, so overflowing, that I have no choice but to help these children in every way I can. I will admit there are kid parts of me that have never grown up. I have been known– on many occasions– to randomly and suddenly break into a skip. This is just one thing I love about kids; they teach us joy. They teach us about what we have discarded and left behind in our adult lives. When that adult reserve kicks in and tells me not to skip next time, I plan on inviting it to join me!

I want to express my thanks to moms and dads in the childhood cancer community for sharing your daily lives through social media. I feel I know so many of you, just from following. You have given me a better understanding of the problems, pressures, and battles you face each moment of each day. I want you to know how much I care. I want you to know how hard I will work for change. I want you to know you are not alone.

Finally, I am excited about the momentum that is building. I am honored to know many of you who work your tails off so that there can be newly funded research for less toxic treatments. I am amazed by the courage of so many of you who have lost your children to cancer that now run foundations to help the kids. After five years of my personal advocacy, it’s clear to me that the tides are beginning to turn. Four years ago, a dear lady named Christine began a campaign intended to raise awareness of childhood cancer. She was inspired by her friend, Deliece Hofen and her son, Braden, who is currently undergoing a bone marrow transplant. The campaign aimed at getting Oprah’s attention for a segment on her show and was called, “Oprah, Please Do A Show On Childhood Cancer.” Within no time, the childhood cancer community came together with a loud voice. Unfortunately, Oprah did not answer our pleas to help raise awareness. She had never done a show about childhood cancer and never did one before the show went off the air.

Recently, the outcome of our cohesiveness did bring about something extraordinary. “Under intense pressure” from social media and grassroots, Josh Hardy was able to get the medicine he needed, but had been denied. Another beacon of hope for progress is the Gabriella Miller Kids First Research Act. Because we are connected and engaged with each other in our community, we are beginning to achieve some success. This means we have opportunities to save kid’s lives! This means we can build even more momentum for avenues of change.

Josh Hardy

http://video.foxnews.com/v/3329179339001/7-year-old-cancer-patient-receives-new-drug/#sp=show-clips

The Gabriella Miller Kids First Research Act

http://www.foxnews.com/politics/2014/03/11/congress-passes-bill-to-support-childhood-cancer-research/

Yes, let’s connect, connect, connect so we can achieve as much as we possibly can. Childhood cancer is the #1 cause of death by disease in our country. Seven children die from cancer every day here in the United States and over 40,000 children are currently in treatment. Many of these children fight for years. Many of these children suffer even more from the effects of their treatment than they do from cancer.

To all my fellow onc-parents, I love you and your children.

“Charge!!!!”

Please leave your contact on this page so we can all connect.

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