Ahhhh September, it’s finally cooling off a little, and the cooler fall weather seems closer now then the harsh heat of July and August. As you open this magazine, or read it online, most likely your children are in school, or tucked into bed, maybe playing on an ipad in the other room. They have just finished the first few weeks of school, and you had to spend some outrageous amount of money on the right backpack, or the perfect outfit. But for some of us, this narrative doesn’t ring true.
Our child, our Riley Rose should be sitting in her second grade class, doing her math, memorizing her spelling words, and fighting with us about Wednesday church uniforms. Alas, she is not. She died on April 13th, stolen from us by childhood cancer. Many people read that, and say, “wow that’s harsh,” but it’s the honest to goodness truth. And prior to the story of Desi Cechin and this valley’s outpouring of love, I didn’t even realize that kids got cancer. Yes kids get cancer. About 43 kids a day, every day are diagnosed with more than 100 types of childhood cancer. Furthermore, every day, yes every day, 7 kids die.
Childhood cancer was never on our radar. We believed the words used so often, rare, unknown, unlikely, etc. The truth of the matter is that prior to August 22nd 2016, we had a completely different story. We had a perfectly ideal life; two blonde-haired children, we paid for private school, had good jobs, and a cute house. We lived in a bubble and on August 22nd that bubble was destroyed. And what was left behind was a legacy that involves one precious little girl, her impact on the world, and what we have learned in the wake of this storm.
A legacy is defined as something that is a part of your history. Stage 4 Neuroblastoma, and Childhood Cancer are part of the story, but it is not part of her legacy. Yes, she died of cancer. A cancer that is so rare, that only 700 children in the US are diagnosed with it every year, but so deadly that the survival rates barely edge into the 50th percentile. And if a child relapses with this cancer, there is no known protocol that can guarantee survival. Let me repeat that sentence, there is no known protocol that can guarantee survival if your child with stage 4 NB relapses!
Regardless of the battle, regardless of the pain, regardless of the loss, her legacy is one that wakes us up every day, driving forward, forging a new path. Her legacy is one of love and music, and joy, pure joy! We have partnered with BeatNB (www.beatnb.org) which funds the clinical trials of Dr. Giselle Sholler and her consortium of hospitals to raise 1 million dollars in research money prior to her 10th birthday. We have an army of people that want to make this happen, and we have made a huge impact already, raising more than $40,000 in the four months since we lost her. Additionally, Riley Rose loved art, and starting with her school, Sacred Heart School, we are going to raise money for Riley’s Art Cart – which will provide art supplies to schools and hospitals. Art was an outlet for her, on the days of pain, and sadness, and boredom, she could turn to art and find solace. I want other children to know that joy, and to find their passion. Eventually I would love schools and children’s hospitals across the nation to have a “Riley’s Art Cart” so that they can live like her, and live on. Finally the last part of her legacy is deeply personal and it is our faith. Our faith, and by proxy the faith of those in the community who have been strengthened by this battle. Her legacy is her faith, our faith, and all of the faithful that prayed for her, with her and beside her, and us for two long years. We saw so many miracles. Time and again when they said, she won’t live through the night, or through this battle, she came back to us. She lived two long years, mostly in the hospital, but she LIVED! She walked when people said she would never do that again. She went to school when they said she would never attend. She accomplished so much in her young life, and the impact on others makes us proud. She showed the world how to LIVE with cancer, and through cancer. When we have to do really tough, impossible things, we buckle up and surge forth, because of her and her example. And we know that there are thousands and maybe tens of thousands of people that do the same. This can-do attitude, and perseverance, this grit, this is her legacy. September has been deemed Go Gold to raise awareness for childhood cancer. This September I urge you to think about the legacy of the fighters, and the survivors, and the ones we have lost, and really GO GOLD for them. There is a quote in the childhood cancer world that says something along the lines of “if you see a child fight cancer, it will change your life forever.” I’m urging you to see a child fight cancer. Not just this September or next September, but every day. Find a way to help them fight so that six year olds don’t have to have a legacy, they can just be kids, sitting in classrooms, arguing about homework and clothing choices.
Just a few ways to get involved:
BeatNB.org – raising money for research and to beat Neuroblastoma – the most common solid tumor cancer in children.
DesiStrong – www.desistrongfoundation.org – A local organization committed to research and assisting families with the cost of battling childhood cancer.
Debbie Chisholm Memorial Foundation – www.dcmfwishes.org – a foundation based in the Inland Empire that provides gifts, wishes, and support to children who are battling cancer.
Whip Pediatric Cancer – https://whippediatriccancer.org/ – a NY based organization that was started by 17 year old Jordan Belous – who has raised more than $180,000 in money for research that has been donated to Memorial Sloan Kettering Hospital in NYC.
Candlelighters NYC – http://candlelightersnyc.org/ A NYC based organization that supports families who travel to Memorial Sloan Kettering for treatment. Their approach is to support the whole family in the quest to fight childhood cancer.
Photo by Michelle Jeffers
