Kids With Cancer — Where’s the Outcry?
My local newspaper recently ran pictures of participants in the annual Avon Walk for Breast Cancer. Among them was a picture of two sisters walking in honor of their mother who had succumbed to breast cancer. She was 69.
There’s no doubt that breast cancer is a worthy cause. Who hasn’t known someone who has been afflicted with this disease, which is the second leading cause of cancer death among women in the U.S. But for those of us whose children have a pediatric cancer, the Avon Walk is another reminder that when it comes to high-profile cancer campaigns, the youngest patients — inexplicably — are relegated to the back-burner.
All about numbers
Of course a big part of pediatric cancer’s low profile is that like many causes, it’s a numbers game. According to the National Cancer Institute, some 13,400 children are diagnosed each year. A drop in the ocean, next to the NCI’s estimated 207,090 annual diagnoses for breast cancer and 217,730 for prostate cancer.
But there’s one obvious difference between childhood and adult cancers. Adults tend to get cancer later in life. According to the NCI’s Surveillance, Epidemiology and End Results, for the period of 2003 to 2007, the median age for a breast cancer diagnosis was 61. Just 0.9 percent of breast cancer deaths were in women under 35. Similarly the median age for a prostate cancer diagnosis was 67 with 0.1 percent of prostate cancer fatalities occurring in men under 45.
Compare this with pediatric brain tumors, the top cause of cancer deaths in children. The most common age group for diagnosis is between infancy and 8, and 32 percent of children including those with benign tumors, die within 10 years of diagnosis, according to the Central Brain Tumor Registry of the United States.
So why aren’t parents of pediatric cancer patients marching all over our national landmarks, demanding that Big Pharma and the NCI dedicate more funding and resources to the development of drugs for childhood cancers rather than for the larger more lucrative adult markets. And why aren’t we urging manufacturers to add the gold ribbon, the symbol of pediatric cancer awareness, to their merchandise?
I believe most of us have ongoing traumatic stress disorder. We are exhausted, mercurial, cynical and ever fearful.
Paid their dues
But where does this leave more detached individuals? Some of them, I suspect, feel they have already paid their dues by buying pink ribbon products at a premium or participating in a fundraiser for an adult cancer.
Actor Reese Witherspoon, a mother of three and the honorary chairman of the Avon Foundation for Women,which supports breast cancer research and awareness, has spoken out for early detection of the disease stating that there is a 97 percent five-year survival rate when it is caught in its earliest stage.
For parents of pediatric brain tumor patients, as well other childhood cancers, there is usually no early detection. The single risk for childhood cancer is being a child. Most of us would be thrilled to hear about a 97 percent five-year survival rate. Good for Witherspoon for speaking up for breast cancer. Now can someone with the Hollywood wow-factor please speak up for pediatric cancer patients?
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You speak my heart, my Odyssey and my advocacy.
Thank you, Mindi! Suzanne
I totally agree- my daughter is a two time neuroblastoma survivor and I would love to find a way for the world to go gold like it has gone pink. Come on Hollywood – these kids are the ones who are buying your tickets, your advertising – they need your help now!
Well, Lyle Lovett, the ex-Mr. Julia Roberts, has agreed to be spokesperson for the Pediatric Brain Tumor Foundation’s Relay for Life. He’s not Reese … but I appreciate his offer. Good luck with your daughter H. Stewart!
You brought tears to my eyes…I am the parent of a childhood cancer survivor…a very malignant brain tumor. These children not only need better treatment but less toxic treatment. These children pay a high price for surviving. The treatments cause learning disabilities, endocrine issues, damage to the kidney, heart,,,etc. Young lives changed forever. We need to sweep the country with Gold so when someone sees a gold ribbon, they will think about these young cancer warriors and hug their children a little closer and be thankful for their child’s health.
Very true, Kris. Positive thoughts sent to your child …
You have hit ‘the nail on the head’ Suzanne. This is so true and i do believe we are too traumatised somehow. Childrens cancer should be top of everyones agenda.
Thank you for speaking up, everything you say makes perfect sense to us who have children with cancer, but the ears are numb and hearts are hardend to the cry of kids with cancer. Lets keep working together 365 days of the year until these little voices are heard.
Right on, Dadvocate!
Preaching to the choir. My daughter has leukemia and we do every walk we can to raise money for pediatric research. I will stand up for my daughter and all the other children. I will never stop fighting.
this just breaks my heart! I couldn’t image, and you are right we need to practice, preventative behaviors and screening and we need to show our support! How can non celebrities help?
Good question, Erica. I think we need to lobby the government and the pharmaceuticals. But in the meantime (!) donating your cash and/or spare time to a worthy nonprofit is a good way to start. I pick those nonprofits that donate most of their revenue to cancer research, rather than support or information (thanks to the Internet we can get that ourselves). Thanks for your message.
Hi, could you tell me what organizations you would recommend to donate to or recommend to others who ask? My 4 year old daughter has medulloblastoma and we know we don’t want this to happen to other young children. Thank you.
Jeannie, I like those organizations dedicated to directing their dollars toward research for better treatments, rather than “information” and “support” (we can get those for free on the Internet, if we want). St. Jude is good, but a lot of its money goes on marketing outreach and it serves all pediatric cancers. I like the Pediatric Brain Tumor Consortium and the Pediatric Brain Tumor Foundation. You can also ask your neuro team if there is any promising research that they are doing, which could benefit from your family’s sponsorship. I wish you and your daughter the best. Suzanne
So, so true. My 5 year old son has just completed his treatment for stage 4 Neuroblastoma cancer. We are awaiting retests to make sure he remains in the clear. The fear factor of relapse is great as his chance if survival is 40%. Childhood cancer is around and certainly needs a greater profile to get more money spent on research and trials.
Sarah, I hope your son remains in that 40 percent. I’m sorry you are going through this. Suzanne
Beautifully spoken. I found you through a friend of mine’s blog. I am so glad I did. I’m so sorry for the loss of your daughter. I’ve been advocating for childhood cancer awareness for 2 years now, and I’ve never personally known any children with cancer. There’s a woman who has a blog that you may or may not know of. Her name is Sheila, and her blog is Mary Tyler Mom. She has a facebook page as well. Her daughter, Donna, was diagnosed with a brain tumor at 20 months and she died when she was 4. Sheila wrote about Donna’s story on her blog during the month of September 2011. She’s an amazing woman and she opened my eyes to the tragedy of childhood cancer and the pathetic amount of funding it gets.
Today is a day that Sheila calls ‘Donna Day’. She and a couple dozen or more of us bloggers are writing about Donna, childhood cancer, etc, to raise awareness and money for St. Baldrick’s Foundation.
Here are some links to get you started, if you’re interested in learning more:
http://www.chicagonow.com/mary-tyler-mom/donnas-cancer-story-2/ (this is a link to Donna’s Cancer Story on Mary Tyler Mom’s blog.)
http://www.stbaldricks.org/ (this is a link to the St. Baldrick’s website.)
Love and light to you and your family. I hope that one day we can get more support for these kids. I am so tired of reading so many sad stories. We need more storybook endings. xoxo
Thank you so much for advocating for our kids and raising money for St. Baldrick’s. Suzanne
Dear Suzanne, no word could express my feelings of support except a big hug for you and your family. My little contribution for investigation is done and I am working in a deeper compromise in helping and supporting children and family with cancer through technology and telecommunication. It would be a great pleasure for me to have a talk about what you consider are the more important needs for children and family passing through this fight. Keep it up Suzanne, so Natasha’s light shines forever.
Please dont hesitate to contact me if you consider I could be of any help.
Suzanne,
I don’t often comment on blogs but I am incredibly touched by your story and the beautiful stories of your daughter. This article made me want to share with you a video that was posted by a woman from my area who lost her son to cancer and is now fighting breast cancer herself. Her and her husband have made it their lives work to help kids in the fight against pediatric cancer.
Thanks so much for sharing this Jamie.
If people are looking to donate to a place where ALL of their money will go to help childhood cancer research, check out TNCI.org. Their CEO has not accepted any salary, and their staff are all volunteers passionate about the cause (full disclosure, I am one of the non-paid staff!). They have an opportunity now to push forward a research project for personalized treatment that when completed stands to save one child a day from dying, reducing deaths by 1/7th! They need $250K to complete the project. Check out their site, and look them up on charity navigator to see the facts about how they use the money. TNCI was started by a cancer-researcher at Scripps whose son was diagnosed with Neuroblastoma. She gave up a lot, including a steady job, to start and run this institute for nothing in return.
Thanks for the recommendation, Julie.