What about the children?

Honestly, how many of you knew that September was Pediatric Cancer Awareness month? My bet is very few, if any at all. Now how many of you know that October is Breast Cancer Awareness month? …And the hands fly up.The pink is hard not to miss - sororities set up tables and ask for donations, the waiters at Hard Rock Cafe push breast cancer supporting merchandise on their guests, grocery stores sell ribbons, TV and radio are full of celebrities advocating for breast cancer support. We are simply bombarded. SAVE THE TATAS! With such great awareness initiatives and fund raising, it’s no wonder that breast cancer is one of the most curable forms of cancer.

I wear three rubber bracelets on my right arm, one of which is gray and yellow. This particular bracelet says HOPE RULES CURE KIDS. I wear it in honor of my little brother, Stefan, who died of a brain cancer diagnosis in 2006. Since then, it has also become a symbol of the innumerable other children I’ve watched waste away - Caleb, Regina, Jessica, Brayden… - and all of the brave little warriors still fighting for their lives. They deserve a little recognition, don’t you think? There are toddlers who have lived their lives in a hospital, getting poked and tested, and they think it’s normal. There are children too young to understand why they have to be subjected to treatments that make them sick, but they go through it anyway. The courage that each and everyone of these kids musters is awe inspiring, yet the only people who are there to support them are the others who were thrust into that world by a cancer of their own. Had my brother not been diagnosed with a brain tumor, I’d probably never have fathomed that children were dropping like flies.

I was prompted to express my feelings after reading the following letter written by Kim Spady, a cancer survivor herself whose eleven year-old son, Caleb, recently died of a brain tumor.

The end of September is approaching and Childhood Cancer Awareness Month has passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen. Except there’s no pushing gold aside. The way is clear for pink.

Even the American Cancer Society — the outfit that professes to represent all cancers and provide support for everyone affected by the disease — the organization for which we all come together and raise funds by holding a Relay each year — has chosen not to recognize Childhood Cancer Awareness Month.

Go to www.cancer.org and what do you see? The banner at the top of the page is pink and touts the ACS’ commitment to fighting breast cancer.

Of course, I, among all people, am grateful for the focus of so many foundations and researchers on breast cancer. I know I wouldn’t be looking at a future that is likely cancer free (or free of breast cancer, anyway) without the research and the focus on breast cancer during the past decade.

Still — I’d rather have my son.

What if the focus that remains on breast cancer was turned to pediatric brain cancer?

I know millions of women are affected by breast cancer. But almost all of them are effectively treated.

Only thousands of kids are affected by brain cancer. But many — perhaps most — of them die.

This is so politically incorrect, I am hesitant to write it. But, as I write, I am without breasts and sans colon.

And one son short a full house.

If anyone can speak to this issue, I think I can.

I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold — more in terms of funding for research, but also in terms of awareness — to usher in the pink.

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families.

Will you spread the word to someone who doesn’t know today? Send an e-mail. Copy this to your blog, your faceook, your twitter. Write a letter to a corporation or a legislator. Or to an editor.

Christine Reid, a colleague and fellow OCU Law and Hatton Sumner alum is editor of the “Kingfisher Times and Free Press”. She was astonished at the lack of attention given to childhood cancers and wrote a fabulous article on this subject earlier this month — for which we are most grateful.

Here is an excerpt:

September is a disease awareness month, which you probably recognized by the gold ribbons displayed on all the corporate advertising on TV and in magazines and the special media reports.

What’s that? You haven’t seen any? That’s because, for some reason, this class of diseases attracts hardly any public attention.

If I said “pink ribbon,” you would have immediately thought of breast cancer. “Red ribbon” might be a little trickier, but eventually you would have come up with heart disease.

But the gold ribbon is nearly invisible. It represents childhood cancers.

Today, as you read this, the equivalent of a classroom full of children will be diagnosed with cancer in the U.S., more than 12,400 a year. About 4,000 child cancer victims will die this year, making cancer the number one disease-related killer of children under 14.

While 75 percent of childhood cancer cases are curable, for some forms, a cure remains illusive.

Only one new cancer drug has been approved for pediatric use over the past two decades. For some of the rarest, but most deadly, childhood cancers, no new treatments have been introduced in more than three decades.

For every one child diagnosed with pediatric AIDS, 15 children are diagnosed with cancer, yet available funding dollars designated for research are vastly disproportionate: $595,000 for each AIDS victim and only $20,000 for each pediatric cancer victim.

Federal funding for breast cancer research is more than double that for all 12 major groups of pediatric cancer combined.

Those statistics are staggering, particularly here in Kingfisher County where we can superimpose the faces of so many amazing children over those raw numbers: Zach, Morgan, Colby, Logan and Shaelyn are just a few that come to mind.

Those portraits in courage, whose resilience and tenacity – sometimes against all odds – have inspired us all, make it even more important that our gold ribbons are not invisible this September.

For the full article: http://tinyurl.com/n64s4u

Caleb’s website: https://www.carepages.com/carepages/KeepingUpWithCaleb

I personally think that it’s great that the whole nation can come together and really make waves with breast cancer. If only we could do the same thing for our children. The prospects of a child making it through cancer unscathed are grim. If he doesn’t succumb, he has to deal with physical and mental disabilities for the rest of his life.

These children need someone to care, someone to notice and encourage them, someone to fight for their rights and their lives right along side them. Pediatric Cancer Awareness month has ended, but their struggle never does.

For a glimpse at the impact of childhood cancer, check out http://www.icouldbeyourchild.org/

My motivation: Stefan Kyle Shartouny Munn

My interest in helping children with brain tumors stems from going through it with my little brother, Stefan. In April 2006 he was diagnosed, after seven misdiagnoses, with a rare form of brain cancer called gliomatosis cerebri, which is not a solid mass and can’t be operated on. He fought bravely through the chemotherapy, blood tests, mounds of supplements he had to take several times daily, and anything else my mom or the doctors could think of to try to help him. Finally, after a bout with a respiratory infection, he left this world on December 31, 2006. (For the entire story visit his website http://mysite.verizon.net/bluetruly)

My mom uses the knowledge she acquired by being his caretaker to help other families going through brain tumors. Three pediatric brain tumors are diagnosed and one child is dies from a tumor everyday. Many tumors have little or no hope of going away completely and often there are neurological and physical problems to go with, but the families of the children try their hardest to find every potential solution. My own family went to California for three months in October 2006 attempting a treatment that promised the slightest bit of tumor reduction.

I watched my brother suffer through his cancer for nine months and have since kept up with several other children going through similar experiences. The thought of anybody going through the horrors of cancer, let alone a child, is unnerving. My prayers are with each and every child suffering through brain cancer and I hope that you can also find it in your heart to give notice to these brave little kids.

Jessica

Welcome

Welcome to my blog on brain tumors! The purpose of this page is to raise money to support children suffering from brain tumors. The treatments and traveling to hospitals and clinics is very expensive and often insurance doesn’t cover vital necessities like MRIs and certain medication. Any support you can give, monetarily or through prayer and good wishes, is greatly appreciated by everyone going through the hardship of brain cancer.

Jessica