Posted 2015-09-07T01:53:00Z

Day 230 - A CALL TO ACTION

It's here... Childhood Cancer Awareness Month. Where gold ribbons, bald heads, and big smiles will adorn your facebook feeds. Some you'll acknowledge and watch, and a few might move you to act, but if you're like the old version of me, most you will ignore.

I've seen this quote passed around a lot... 'The day before my child's diagnosis, I wasn't a cancer parent either.' My own ignorance led me to believe that this couldn't happen to me... I wouldn't ever be a 'cancer parent.' I never knew much about childhood cancer, but it seemed so rare. So intangible. And the photos I saw over and over again, adorned with yellow ribbons, big smiles on bald heads, thin faces with pale skin... they didn't get through to me. I didn't realize how horrible it could truly be.

Until I heard the words 'your son has a very large tumor.' Until I held him down as he screamed while getting his PICC line, a tube that felt like a garden hose, inserted into his arm. Until I heard a code blue siren through the hospital because he stopped breathing. Until I watched him gag and fight with a ventilator to try and get the tube out of his body. Until I signed consent forms to fill his body with poison, and saw the clause on the paper 'your child could die.' Until I had to get over my terror at the sight of a needle to give him daily shots... shots that left bruises in giant welts all over his thighs. Until I watched his beautiful head get shiny, and his hair hang on in patches. Until I saw his face thin, and his skin discolor. Until I felt grief so deep, fear so strong, and helplessness so debilitating.

Until this battle became my own.

My child was BORN with cancer. I did nothing to give it to him. And I was powerless to save him from it. And my story... it could be YOURS.

Are you listening now??

This month has hit me very deeply, and I've found myself sitting night after night crying over children's stories and grieving with parents. I can't shake the overwhelming knowledge that this is all so wrong. A few nights ago I sat up on the Truth 365 website, reading stories and watching clips of children sharing their experiences with cancer. Each one captivated me as they put words to the experience of going through treatment... words that my child can't yet say (and hopefully won't remember). At the end of each video I found myself searching for each child's website or facebook page to see how they were doing, and I kept finding the exact same thing... a beautiful eulogy.

A CHILDHOOD ROBBED OF PLAY BY GOING THROUGH TREATMENT... AND ENDED BECAUSE OF THIS HORRIBLE DISEASE.

Did you know that Cancer is the #1 cause of death by disease among children? 43 children receive a new cancer diagnosis EVERY SINGLE DAY. And 35% of those children diagnosed with will not make it past 35. More than 95% of those that survive will have a significant health related issue by the time they are 45 years of age; these health related issues are side-effects of either the cancer or more commonly, the result of its treatment.

Within the realm of cancer, Red's type, Neuroblastoma, is the most deadly and aggressive.

Since 1980, only THREE drugs have been approved for use in children and only four more new drugs have been approved for use by both adults and children. Since 1980, fewer than 10 drugs have been developed for use in children with cancer –-including those specifically for children and those for both children and adult–compared with hundreds of drugs that have been developed specifically for adults. Equally important, for many of the childhood cancers, the same treatments that existed in the 1970’s continue without change as of 2014.

WHY? Because the National Cancer Institute only allocates less than 4% of their cancer research efforts for children. (source)

4%.

This means that any advances in research are only possible through non-profits, through grassroots... through ME and YOU.

Here are our favorite tangible ways that you can participate in Childhood Cancer Awareness Month, starting with the easiest/least effort strategies, and going up in effort from there. 250,000 visits to this blog. Imagine if we each just did ONE THING.

MAKE YOUR SHOPPING COUNT > Such a no-brainer if you already shop in all these places, now you can make it count!

KROGER - Go HERE to change your Kroger card to donate a portion of profits to CURE.

AMAZON - Go HERE to link your amazon account to CURE so a portion of proceeds goes directly to them. Then make sure to always use the link http://smile.amazon.com/ when you place an order.

GO GOLD > Change your profile picture (and grab the header at the top of this post to use as your own!), share stories of cancer children that have affected you on your page, TALK to friends and tell them Red's story, and of course... WEAR GOLD! In honor of this month we are bringing back our Superheroes Wear Red shirt, available to order for only 14 more days! We need a minimum order of 50 in order to get these to you, and 100% of profits go directly to CURE Childhood Cancer. Can you help us get to our goal, and get an awesome shirt while you're at it? Be sure to post a picture for us to see either HERE, or on facebook with the tag #superheroeswearRED.

https://www.tilt.com/tilts/superheroes-wear-red

COINS FOR CURE > The group behind this program provides you with a jar to place in your office or favorite business. One jar of coins is an average donation of $800-$1000! We went into some of our favorite local businesses and asked them to participate and they were more than happy to! This program is easy... just go HERE to request your jar and then set it out for the month of September.

DONATE > Got no time but got money? It makes a huge difference to a cancer patient! Here are some of our favorite organizations that are funding pediatric cancer research...

St. Jude's // St. Baldrick's // CURE Childhood Cancer

And another organization that's doing amazing things to support kids in holistic ways DURING treatment (your donation provides a child with a box of supplements, treatments, vitamins, and important information about supporting their bodies to stay strong during chemo.) // Kick Cancer Movement

SPEAK UP > This isn't right. Children shouldn't be getting cancer. And, we shouldn't be treating them with adult chemotherapy simply because we lack the research to do better. So, speak up and be an advocate for a child like mine that can't speak for himself. Go HERE.

HOST A HEAD SHAVE EVENT > Have I mentioned that Red's medical team is simply awesome? A couple month's ago many of them participated in this event through St. Baldrick's, including our Oncologist, and our main Nurse Practitioner. They raised money for the cause, and once they received enough funding, they had a huge party and shaved their heads! Our nurse practitioner said it was such an incredible experience that she'll do it every single year. Go HERE to find out how to be a shavee or host your event!

DO YOUR OWN FUNDRAISER > You can get the help/guidance you need to do your own thing... whatever it is, HERE. Proceeds go to St. Baldricks. For some great fundraising ideas, check out this page.

'Unless someone like you cares a whole awful lot. Nothing is going to get better. It's not.' (Dr Suess, of course)