“I never thought I’d hear those words, ‘Your daughter has cancer’ … and then one day I did,” says Melissa Bradley, whose 4-year-old daughter, Belle, is currently in treatment.
The devastating reality is that a parent hears that news every three minutes.
And while childhood cancer is the leading cause of death by disease in kids under 15, research remains underfunded — currently, less than 4 percent of the National Cancer Institute’s budget is allocated to research it.
That’s why families, medical professionals and advocates are Going Gold this September for Childhood Cancer Awareness Month — to give the disease, and the kids affected by it, the attention they deserve.
“People tend to shy away from such a subject because it is terrifying to even fathom happening to someone you love,” says Paula Crosby Flake, whose son and husband both died of cancer. “There is not enough ‘talk’ about pediatric cancer.”
While it is devastating to see children who have to fight this disease, or hear the stories of those who we’ve lost to it, their parents want their daughters’ and sons’ stories to be told — and no two are the same.
Helping Families Dealing With Cancer: Do’s and Don’ts
By Claire McCarthy, M.D.
DO
Reach out. Sometimes, fear and worry can be paralyzing. We can get so worried about saying the wrong thing that we don’t say anything at all — leaving our friends feeling alone. So, reach out. Send a text, an email, a card, a Facebook message; while talking on the phone or visiting can be helpful, too, it’s often best to let the family schedule the call or visit. Don’t worry so much about what to say; “Thinking of you,” or “I am here to help” are fine.Remember that cancer affects the whole family. Sometimes babysitting other children — or just taking them to do fun things — helps tremendously. Caregivers need support, too — whether it’s a meal, a shoulder to cry on or a gift certificate for a massage; don’t leave them out.
DON’T
Assume you know what the family needs. Every family is different, and you don’t always know what everyone else is doing. Maybe they are drowning in casseroles — but need someone to walk the dog. Offer specific ideas- – but also ask, genuinely, what they would like.
20 Things a Cancer Mom Knows By Heart
I learned that kids can get cancer when Jackson was 1 year old. He’d just learned to walk. He still wore OshKosh B’gosh overalls and loved to be rocked to sleep. There was nothing that he did wrong, or was exposed to; one day, there was just a lump.
Chemo. Radiation. Surgery. Stem cell transplant. Immunotherapy. Intensive Care. Oncology. Even though it’s been four and a half years since he finished treatment, some days it feels like it was yesterday.
At times, I think I was born the day Jackson was diagnosed. The world falls silent as cancer shuts out all the background noise of work stress, mortgages, that extra 10 pounds or what’s on TV. It awakens a level of empathy to suffering and an awareness to what’s truly important in life.
Once a cancer mom, always a cancer mom. These are 20 things I know by heart:
- It is the most unnatural thing in the world to be told your child has cancer.
- There’s nothing you can do or say to take it away from them. There’s no fixing it.
- Babies can be born with cancer.
- Toddlers can lie on the floor and throw a tantrum while having cancer.
- Little Leaguers will miss their games because of cancer.
All of Me (John Legend cover) #StepUp for Children featuring 6-year-old Lily Noakes and 14-year-old musician Emily Brennan
Nearly $400,000 raised for pediatric cancer research
Over 1,000 Devon Still jerseys were sold in the first two days, with all proceeds going to Cincinnati Children’s hospital and in less than a week, nearly $400,000 were raised.
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The Medical Minute: Research Continues Improving the Odds for Kids with Cancer
Dr. Valerie Brown, clinical director of the Pediatric Hematology/Oncology Experimental Therapeutics Program at Penn State Hershey Children’s Hospital, said that although cancer treatment has improved substantially over the last 50 years, there’s still a long way to go.
Survival rates have doubled from 40 percent to 80 percent among standard risk patients since the 1970s, Brown said. That’s the good news. But one out of five children still die from the disease.
“We’ve sort of reached our limitations for how to shuffle the different standard chemotherapy agents,” she said. “We have used these drugs as intensely as possible and in as many different combinations as possible.”
“We’ve reached the limit with these drugs, and yet a proportion of children will still die from their cancer,” Brown said.
That is why Brown and other pediatric oncologists and researchers have focused their efforts on understanding what gives high-risk patients’ cancer cells a survival advantage. Her expertise is acute lymphoblastic leukemia or ALL, the most common childhood cancer.
Recent findings have revealed a “kinase signature” genetically programmed within the leukemia cells in patients who have a harder time achieving remission. Those patients are predominantly Hispanic and Native American. This discovery has led to the incorporation of novel drugs that target this “kinase signature.” Brown believes this discovery will lead to genetic testing of a patient’s cancer cells in order to personalize the treatment course as being the standard at the time of a cancer diagnosis.
MLS recognizes Childhood Cancer Awareness Month across the league
Each team created a version of this video, are doing various activities during games in September to raise awareness and funding for childhood cancer.
Tom Coughlin Jay Fund Foundation Honors Childhood Cancer Awareness Month with #GoGold Initiative at NY Giants 2014 Season Home Opener
The Tom Coughlin Jay Fund Foundation today announced it will honor its 2014 Childhood Cancer Awareness Month initiative “#GoGold” on Sunday September 14 at the New York Giants home opener at MetLife Stadium in East Rutherford NJ.Twelve families of pediatric oncology patients will attend the game as special guests of the Tom Coughlin Jay Fund watch the game from MetLife Stadium’s Legacy Club and wear special edition Jay Fund #GoGoldt-shirts. New York Giants Head Coach and Founder of the Jay Fund Tom Coughlin and his coaching staff will also wear #GoGold pins to show their support.Additionally Coughlin will wear the pin during all September games.
Check Tom Coughlin’s video about his Foundation here.
Will Ferrell hates cancer — and he’ll play video games on Twitch to prove it
Actor Will Ferrell, who starred in films like Anchorman and Elf, is asking the gaming community to help him raise at least $375,000 as part of an IndieGogo crowdfunding campaign to benefit non-profit organizations Cancer for College and DonateGames. If the project reaches its goal, Ferrell promises to spend Oct. 26 playing video games on Twitch. The event will feature special items for people who donate, like a tube of “Will Ferrell’s SuperMegaUVBlastMax: Gamer’s Sunscreen.” And everyone who contributes is entered into a sweepstakes to travel to San Francisco and take on Ferrell in a battle of gaming skill. You can get all of the details at WillFerrellHatesCancer.org.