A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Arms Wide Open Childhood Cancer Foundation’

Curefest DC Welcome Event at Nationals Stadium

National Angel QuiltIf you missed CurefestDC this year, you can always begin planning for next year’s event that will take place on September 19th and 20th, 2015. After attending this year, I find it is a must for me to begin planning on attending next year as well.

The Welcome Event at Nationals Stadium was a wonderful time of entertainment, fun games, great food, and treasured times meeting others. Thank you to Arms Wide Open Childhood Cancer Foundation, Stillbrave Foundation, Smashing Walnuts Foundation, Children’s National, and Kyle’s Kamp for sponsoring the event! Families were decked out in their foundation and team support t-shirts. As we entered the stadium for the CurefestDC event check-in, the National Angel Quilt was gorgeously displayed. I had read about the emotional impact the quilt has on those who see it for the first time. I felt I was “ready.” There is nothing that can prepare one for this. On first glance, it is massive. The sheer size of the quilt speaks volumes about how many kids have suffered and died from childhood cancer. Seeing the children’s faces and reading their birth and death dates… 

At first, I felt I couldn’t breathe through the huge lump in my throat. Then, I had to stand back against the wall. As my body finally breathed in a breath, it came back out of me in a whimper. The whimper took over. It felt like I breathed in each one of those children’s souls and breathed out their suffering. I stood back to weep, not caring who saw me, not caring what anyone thought. My thoughts were, “This is why we are here. This is why we all need to step up for research for cures.”

National Angel Quilt

National Angel Quilt

Capitol Building

The Welcome Event was super-kid-friendly. Kids enjoyed a bounce house and lots of crafts and games. For some reason, they would not let me in the bounce house (ha ha!) This meant I needed to go back to the food table and eat an icing-topped cookie that looked like a baseball. Yum! The entertainment was spectacular; I was happy to see and hear Nicole Ricken perform again and to see her sister, Alyssa as well.

Nicole Ricken performing at CurefestDC 2014 Welcome Event

Nicole Ricken performing at CurefestDC 2014 Welcome Event

The fun went on and on, with Tattoo Tom Mitchell from Stillbrave Foundation spreading joy and tattoos. I am officially tagging Tom as a Kid-Magnet!

Tatto Tom spreading joy and tattoos

Tattoo Tom spreading joy and tattoos

“One day, the whole world will feel the touch of gold.”

~Dr. Irene Koesters

Curefest Welcome Event t-shirt

Curefest Welcome Event  — One Voice for Childhood Cancer

The very best thing about the Welcome Event? 

Voices for childhood cancer combined with action against childhood cancer.

Know what? This is a deadly combination for childhood cancer. 

Keep it up.

Curefest 2014 180

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

 

 

 

 

 

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Dear Mr. or Ms. BIG NAME Fashion Designer

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

I am sitting here in my soft, long-sleeved, pink “Team Max” shirt and ideas are bouncing around in my brainola like ping-pong balls. I love my Team Max shirt! I love not only its softness, but most of all that I am able to raise awareness of childhood cancer every time I wear it. I even have the opportunity to answer people when they ask, “Who is Max?” This is my very favorite part; I love having the chance to tell people about one of my biggest heroes. Max set a goal of raising $100,000 for St. Baldrick’s and pediatric cancer research, inspiring multitudes to give with his motto, “Two bucks, I mean it!” At only seven years old, Max knew all about giving and helping others. Last Thanksgiving Day, Max’s family learned the pain of saying good-bye to him. They are now carrying on Max’s mission to raise money for pediatric cancer research, and I have no doubt they will surpass Max’s goal.

Now for the “Bouncing Brainola” part…

I admit that I am “fashion challenged,” and have little knowledge of “what is hot.” Those name brands that have sky-high price tags just because they have a Hot Fashion Name puzzle me.

What if…

What if Team Max, Braden’s Hope for Childhood Cancer, B+Foundation (“It’s not a grade, it’s an attitude!”) Alexa’s Pediatric Cancer Foundation, Arms Wide Open, Isaiah Alonso Foundation, et al suddenly became popular high fashion? What if everyone suddenly needed fashion gear that not only covers their body and keeps them warm, but it fights childhood cancer every time it is purchased?

Maybe there is someone in the Hot Fashion Designer Name business who would like to give their name to help raise money for childhood cancer– just by lending their name, their brand.

Like I admitted before, I am fashion challenged; my knowledge in this area is slim to none. Please Mr. or Mrs. Fashion Designer with a BIG NAME, step forward into the light so I may see you and welcome you to the most noble of worlds you can live in… the world of helping children in great need.

Max, Mighty Leader and my Hero

 

 

 

 

 

 

 

 

TwitterLand People, please copy, tweet this, and vote to help raise money for Isaiah Alonso Foundation!

Pls RT & vote #kidsmatter 50k from #pepsirefresh http://t.co/P6M3zFg @The_IAF is #kickasscause@socialvest!

 

 

 

 

 

 

The Incentive is Love, not Money

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

I just conducted a very interesting childhood cancer experiment. I Googled “Childhood Cancer News.” The results I found are puzzling, and frankly disturbing.

 

The first article I found is dated October 11, 2006. Yes, really. Let’s see… nearly five years have passed, but this is listed at the top:

“ABC News: “Dark Side of Being Cured of Childhood Cancer”

If you do read this article, notice that it mentions Dr. Anna Meadows… the doctor I have written of before, telling how much I admire the work she has done in the area of childhood cancer survivorship. As more children are “cured” of cancer, this area of childhood cancer survivorship and quality of life issues will become something health care professionals must address.

“Today 80 percent of children with cancer become long-term survivors.”

“By the time survivors are 30 years out from their cancer diagnosis, however, almost 75 percent of them have a chronic health problem and 42 percent die or have severe life-threatening conditions.”

Hmm…. a little unsettling, no?

I love what Les Robison has to say:

“The No. 1 lesson is that we have to pay attention to long-term consequences,” said Les Robison, chair of epidemiology and cancer control at St. Jude.”

We desperately need less toxic therapies that will still assure a cure, but won’t leave permanent damage. Still, nearly five years after this article appeared in print, it is “current” news for childhood cancer.

Really? Really, really?

The reason?

Drug manufacturers cannot find a way to profit from the development of new, less-toxic treatments for childhood cancers… if they cannot profit from it, why would they ever do it? Instead, they stick to the development of new therapies for adult cancers that they can make huge profits from.

Arms Wide Open Foundation, established by Dena and Billy Sherwood, is on a mission to change this. There is even pending legislation that will hopefully encourage companies to take the plunge into helping children with cancer with incentives.

I can think of forty-six “Incentives” —the number of children diagnosed with cancer in the United States every school day.

I can think of seven more “Incentives”—the number of children who die from cancer each day in the United States.

A child’s life is worth so much more than “Incentives.”

Cure Childhood Cancer

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

 

 

 

Arms Wide Open

After I finished my cancer treatments, the most difficult part of my health battle began. This is one of the awareness concepts I hope to bring to light. Cancer treatments are brutal. I expected to feel better when it ended, but severe late effects from treatment surfaced and growled. 

I suffered from severe physical problems. Digestive problems made eating so painful that I avoided it. Reactions to my medications left me in a depressed fog. 

There is a foundation called Arms Wide Open Childhood Cancer Foundation that is working very hard for less toxic treatments for children fighting cancer. As a child who endured “toxic treatments,” you can imagine that I am all for this! I would love to have you participate in this Pepsi Challenge vote that will help Arms Wide Open with their goal. 

Funding for less toxic cancer treatments for children  

http://www.refresheverything.com/armswideopenchildhoodcancerfoundation 

Thanks to everyone who takes the time to vote and make a difference for children! 

From Grace

Suddenly, I experienced an overwhelming amount of feelings surfacing within me. Anger about things that did not even faze me at the time transformed me into a person neither my family nor I recognized. There was so much pain, so much suffering, within me I could not stand it any longer. 

Why? Why did I have to be so scarred, so haunted, so disturbed by all that I had gone through? 

Only pushing through it at the time, I did not expect the fear, anger, and desperation to arise months and months later. Now, I felt my pain: I felt my frustration. It was as if God had simply spared me the suffering during treatment so that I would be able to fight. The severity of all I had gone through left my mind in another world, one where all is dark, and nothing can pull you out except God Himself. 

   

 

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