A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘St. Baldrick’s Foundation’

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

 

 

 

 

 

 

 

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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

 

Hairless or With a Head Full of Hair

I have been unable to focus on much else this week, but my upcoming shave for St. Baldrick’s/Pediatric Cancer Research tomorrow at Oakland Children’s Hospital. Friends are asking if I am nervous, and all I feel is excitement! I can see faces cringing back at me in horror, as they ask themselves (yes, faces ask themselves questions all the time,) how can this terribly deranged girl feel such a thing?

Any family who has been touched by childhood cancer knows why I am excited; they know exactly why I have chosen — this time– to go bald. When I read of another child who passed today, from childhood cancer, I fought back tears. Then, I decided I would let them go. I decided I would let that feeling of pain and torture and loss and helplessness and hopelessness penetrate my soul.

Now, I ask you to do the same. Imagine our most precious, most delightful humans on Earth suffering and dying from cancer. 

I ask you now, “Would you not do the same to help them?”

Childhood cancer will continue its terror unless many, many of us do something. The “something” I can do tomorrow… through the help of many thoughtful and generous friends… is raise money for research that will help strangle the enemy called cancer.

Oh yes, cancer is my enemy. I will happily let those hairs fall to the floor tomorrow. As each individual hair falls to the floor, each one carries with it a prayer for the end of childhood cancer and a commitment to do all I can–hairless or with a head full of hair.

http://www.stbaldricks.org/participants/mypage/579474/2013/

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I just hope I don’t scare anyone… especially Debbie!

From Grace:

Mom and I were on our way home in the car, and we slid to a stop at the giant blue mailbox in front of our post office. Rolling down my window, I stretched out like a giraffe reaching for a leafy dinner. Plop!

The envelopes fell in and disappeared. Just then, a lady who works at the post
office, who we have known for years, came strolling out with a large container
to collect the pile of mail.

My first thought was, “Look! It’s Debbie!”

But then I recalled that my appearance was slightly different from when I’d seen her last.

“Oh crap! I’m bald!” I cried, fumbling for my beanie.

She neared the box—everything seemed like it was National Geographic slow. Not wanting to explain my whole story in my exhausted state, I scrambled, found my hat, and jammed it in an awkward way atop my head. Mom found an opening in the traffic, and we zoomed away. I felt like Mrs. James Bond.

Scream laughter erupted from Mom and me. That was a close one. There were times when we cried together, there were times when we laughed together, and there were times when we laughed and cried together. This was one of those moments.

 

 

Ben Franklin’s Doo and Cindy Lou Who

 

 

 

I remember talking with my mom about the impending  loss of my hair when I was beginning cancer treatments. We both wondered how it would happen. I mean, would it all fall out at once? Would I wake up one morning with a huge “nest” on my pillow? Would it fall out in clumps here and there? As we imagined different circumstances, we would end up laughing until our bellies hurt. Never did we imagine what actually happened… and never, ever did we imagine it would be so funny that we would laugh about it for years to come!

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

Dad nearly collapsed , and his eyeballs bugged out from his head. I guess that was the first time he ever really noticed the progression, or shall I say regression, of my hair loss. What occurred was quite fascinating. I had expected for hair to fall out everywhere, leaving patches of hair and no hair until all was gone. But instead, my one-eighth-inch part grew wider and wider until a stripe of a little over an inch created almost a “freeway” on my head. Hmm . . . Route Baldo . . . kinda has a ring to it. Anyway, each attempt to brush my hair resulted in more lanes being added, my own personal “tax dollars” at work. I needed some cones to set out.

A bit further on in Grace:

The mirror was a visual aid in grasping the reality that I had just about as much hair as a naked mole rat. My male-pattern baldness was most prominent where my part once stood. From there on out, the forest became slightly thicker. The near crop circle on my head was disturbing, yet hilarious. The phases went from top to bottom, and looking into the future, I saw myself with almost a “curtain” of hair along the side of my head, but nothing on top. I laughed so hard that it hurt. 

“Mom,” I shouted, still in a slur of giggles, “I’m gonna look like Ben Franklin!”

We laughed until our bellies hurt, our eyes were watering, and we were nearly
peeing in our pants. And then . . . we laughed some more.

As my crop circle continued widening to the extent of covering my entire head, I would gather the few strands into a tiny pony-tail on top of my head. My mom called me Cindy Lou Who… “who was not more than two!”IMGP2601 006

After this photo was taken, I returned home to the razor…

From Grace:

With Mom on one side and Nicholas on the other, we crawled down the hallway, as if preparing for launch. My hand grasped the metal hair buzzer on our bathroom counter. I was ready. With a “click,” I fired it up . . . all eyes watched my steady hand. As though using my own personal, mini-lawn mower, I executed a perfectly straight line from the center of my forehead to the crown of my head. 

I paused. It was an epic moment, and I knew it . . . everyone did. The now free hair floated elegantly down to the waiting floor as I began to form a parallel row. Feeling the cool air on my bare head, I giggled. It was something virtually no one experiences, let alone a thirteen-year-old girl.

I followed the contour of my head. I had never really known what shape it was. The tiny, delicate hairs slid down the back of my shirt, making me itchy. Carefully, I formed a giant circle on the top of my head, trying hard to make it as even as possible. The circle grew larger, just as a crop circle mysteriously forms in cornfields at 3:00 a.m.

Suddenly, I stopped and stared at the stranger reflected back at me. I had purposely ceased midway to, truly, be the one I resembled. I was Ben Franklin. With only straggly hair running around the majority of my head’s circumference, I depicted the founding father perfectly! Laughter erupted, and I found a chuckle that squeezed shock, excitement, embarrassment, and joy right out of me.

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 I am thinking I should Bring Ben Back– even for a few moments on my shave day– this Saturday, March 30, at Oakland Children’s Hospital for St. Baldrick’s Foundation.

http://www.stbaldricks.org/participants/mypage/579474/2

Kids need fun. Adults need fun. 

Cancer is no fun.

Let’s stop cancer together. 



 

One Happy Bald Head

With less than a week to go until my Shave Day for St. Baldricks  and pediatric cancer research, I want to share my feelings when I discovered I was going to be bald… the first time…

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

This is what Dr. Dan spoke of. This is also the first time he used the word “chemotherapy,” his New Jersey accent giving it a unique sound. My heart, a hair-raising roller coaster, plummeted down and did a double loop before finally ascending to the top again. Suddenly, that “medicine” that “melted the mass” revealed its true identity. I was totally and completely taken aback. Me. Chemo. It was unreal, like a fairy tale . . . actually a nightmare. 

I looked to my dad, his eyes seemed watery. Instantly, I could see it hit way too close to home. His dad, my grandpa, had received chemotherapy for a very rare blood disorder, but sadly, he passed away that June after a long, grueling battle. My dad’s face read, “Oh no, not my daughter, not her too.” 

It was quiet . . . too quiet for my comfort, and way too long for my comfort.

Breaking the silence, I asked, “Will I lose my hair?”
“Yes,” Dr. Dan confirmed.

Whoa. What a concept. I pictured myself resembling ET more than my own family. The positive, comedic side of me could not help but break through the layer of seriousness that coated me.

“Well,” I chimed, “I won’t have to put up my hair in a bun.” 

That brought a much-needed laugh to the dismal room, with Dr. Dan’s deep chuckle making me laugh uncontrollably. Once our momentary silliness ceased, we got back down to business. I had one more inquiry that was haunting my mind.

“Will I still be able to dance?” I questioned, my eyes donning a soul-twisting, puppy dog look.

The answer somewhat surprised me.

“For the most part, yes,” he replied. “We have a young man who played football through treatment.”

That’s all I wanted to know. I was set . . . content, a whole and complete person.

Imagining myself bald as a newborn, dancing in class, I wondered how the other girls would react. I pictured shocked faces the first time I returned to dance, no one being able to concentrate with me in the room.

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This second time, my bald head will laugh when it feels the wind tickling its barrenness. This time, my bald head will know it shines like a dome for the kids. My bald head will smile, knowing it gave up its crop for the purpose of ending the suffering of children with cancer. I am going to have one heck of a happy bald head!

Thank you from my heart to each of you who has supported my efforts with your donations, your encouragement, and your kindness.

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!

We totally fell in love with Kaiden!

 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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