Your action item for this month …

Jonathan and I have been asked on several occasions this question: “What got you into pediatric cancer fundraising? Do you know someone who has cancer?”

Honestly, we were pretty oblivious to pediatric cancer prior to 2007. And I mean oblivious as in ‘head stuck in the sand because you just don’t want to know about such awful things’ oblivious. But in 2007, a friend told us about Taylor Love. I still have the email and vividly remember watching the video for the Loneliest Road Campaign. At the time, our first born was not even a year old. It hit us so.very.hard. What if this was our child? The sorrow and desperation we felt was immediate – and we both said, “what can we do to help?” We started by holding our first ever cut-a-thon to “cut out” neuroblastoma, the rare pediatric cancer with which Taylor was diagnosed at just 18 months of age, and have held six annual cut-a-thons.

Fast forward to 2010. I wanted to re-connect with a mother I’d met on a cloth diapering network. I had been meaning to reach out to her as I wanted to get our kids together for a play date and I felt awful that I hadn’t even met her newest, then 6 month old Casey. The email I received back made my heart stop and my eyes immediately fill with tears. Her son, at just 6 months old, was diagnosed with atypical teratoid rhabdoid tumor (AT/RT), a rare form of brain cancer. He was undergoing extremely toxic treatments of chemo as there was no drug or therapy formulated specifically for babies. So toxic that she would have to wear gloves to change his diapers as his urine was toxic. Casey fought his battle with pediatric cancer until he was 14 1/2 months old. I can’t write anymore about Casey because I will start crying (again). Please read his CaringBridge site to learn more about the wonderfully cute little baby boy, Casey Kropf.

So yes, this is the really, really bad stuff — the stuff no one wants to talk about because it’s kids and it’s so awful. This is the stuff I tried hiding from for so many years. But the truth is, it’s real, and it is awful, and if we DON’T talk about it, nothing is going to get done. 

About that same time in the summer of 2010, we learned that Taylor Love, who was showing No Evidence of Disease from the neuroblastoma, was diagnosed with chemo-induced leukemia. Yes, you read that right — the very chemo she was given to cure her of neuroblastoma gave her a secondary cancer. Taylor has fought both cancers and is in school living a mostly normal life. But she and her parents live in fear every day of several scary thoughts: will the cancer return and what long-term effects did treating her cancer have on her body?

Unfortunately, our list of “do you know someone who was diagnosed with pediatric cancer” didn’t end with Taylor or Casey. In late 2011, we learned that a client’s 2 1/2 year old daughter, Ava, was diagnosed with Pre-B Acute Lymphoblastic Leukemia, or ALL. Little Ava has been undergoing chemo since 2011, and has six more months to go. And, just about three weeks ago, a long-time friend shared that her 2 year old, Kate, was also diagnosed with ALL. Pictures of Kate from just three weeks ago show a healthy, happy 2 year old. This is a startling contrast to the photo that her mom Lindsay posted today of a newly bald Kate, recovering from a fever and bone marrow biopsy in a hospital bed. This one hit me especially hard as Lindsay and I were pregnant at the same time — I with my third and her with her first. Again, this could be my daughter.

There are more kids — an acquaintance on a yahoo group lost her 11 year old Stephan to a brain tumor. Our friend’s nephew lost his battle with leukemia at age five. A friend’s neighbor also lost their 5 year old son to leukemia. Isabella Santos, whom we heard of through a client and friend, lost her battle with neuroblastoma last year — she was just 7 years old and had been fighting for five years. Now we are up to eight children, and that’s just children in my circle of friends and doesn’t include the many others I read about daily.

After having our eyes open to this epidemic the last several years, there are a few things that have really stood out. The first is that most of the folks out there doing the fundraising and trying to spread awareness are the parents and families of those directly affected. This just isn’t right. They have enough on their plate – it’s our duty to relieve them of that burden. Second, childhood cancer, to us, isn’t rare. We’ve heard the words “proportional funding” and “rare” often in this world of childhood cancer — this needs to change. These kids need more funding; childhood cancer isn’t rare (at least not anymore).

Here are some of the hard truths about childhood cancer from The Truth 365:

• Of the $5 billion of federal funding allotted for cancers, pediatric cancers receive only 4% of those research dollars.
• Pediatric oncologists spend 60% of their time fundraising as there is not enough money to keep research flowing for these kids.
• Childhood cancer is the leading cause of death of children under the age of 5.
• One in 330 children will be diagnosed with cancer by the time they are 20.
• Each year, there are 13,500 children diagnosed with cancer.

• Incidence of invasive pediatric cancers is up 29% in the past 20 years.

• In 20 years the FDA has initially approved only one drug for any childhood cancer.

• The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society.

• Childhood cancer survivors are at significant risk for secondary cancers later in life.

• Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed.

After reading this post — and let me warn you, the post is, with every right, edgy — we decided we weren’t going to call our September community outreach “Childhood Cancer Awareness Month,” but instead, “Childhood Cancer Action Month.” What one or two things can you do this month to help these kids? We’ve got some ideas for you, and many of them don’t cost a dime, but will have a profound impact as you spread information about pediatric cancer.

First, here’s what we are doing:

1. We will be donating $1 from every haircut in September to The Arms Wide Open Childhood Cancer Foundation.
2. This year, instead of a cut-a-thon which only lasts one day, we wanted to do

   Gold Hair for a Cure

   something that people could participate in for the entire month. Similar to the Pink Hair for Hope campaign, we are launching a Gold Hair for a Cure campaign. Come and have a SO.CAP gold extension added to your locks for just $10 and we will donate 100% of our profit to finding a cure for pediatric cancer. When people ask why you have a gold hair extension, tell them about Pediatric Cancer Action Month! (And, we have contacted SO.CAP USA to see if they can make this a national campaign. We’ll keep you posted!)

3. We will be asking every person checking out if they would like to add $1, $3 or $5 to their ticket to be donated to pediatric cancer research funding.
4. I am hosting a Silpada fundraiser this month. I am donating 100% of my profits from this fundraiser and am raffling off free jewelry for those who order. Need gifts, want something for yourself and want to help? Easy! Shop the fundraiser here.

Here’s what you can do:

1. Take a Crazy Hair Day for Kids’ Cancer flyer to your school and have your school host a no-cost fundraiser. It’s so very simple. Kids get to wear their hair crazy for a day and they bring in a small donation. We have a flyer for preschool and elementary schools, and one for middle and high schools. When other kids ask why their hair is ‘crazy’ for the day, it’s a *great* opportunity for these kids to share why. Don’t have kids in school? Take a flyer to work and hang it in your office kitchen. And if you are not a client of ours, take the fliers to your salon. Share with your stylist or the owner of that salon. Get them involved in promoting this amazingly easy fundraiser.
2. Donate to any one of the many organizations helping kids battling cancer. Here are just a few great ones we know about or have donated to in the past: The Band of Parents, The Isabella Santos Foundation, Journey 4 A Cure, Arms Wide Open Childhood Cancer Foundation, and the DC Candlelighters. Please do not think any amount is too small. If everyone gave $1, these organizations and the children they serve would benefit tremendously!
3. Participate in a walk or run, or triathalon.
4. Get involved through a social media outreach campaign through The Truth 365.
5. Watch the Truth 365 Documentary to learn more about the state of pediatric cancer.
6. Write your Congressperson, and ask him or her to sign The Pledge. We need more than 4% of federal cancer research dollars going toward pediatric cancers.

Hopefully one of these will speak to you. These kids do not have a voice. They are busy fighting for their lives. Be their voice, take action for them.