A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for March, 2014

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

 

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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.

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

Twitter: https://twitter.com/1ballerina

            https://twitter.com/HappyQuailPress

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