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Who is River? Why Rainbows?


This beautiful, brave little soul is the namesake of River's Rainbows, Inc. If not for him, this foundation would not exist, nor would we have ever known we needed to create it. River entered this world on February 13th, 2012 and left it on June 15th, 2017. He was, is, forever five.

River was born, completely healthy, but in 2014, just 8 weeks after welcoming his baby sister earthside, he was diagnosed with Stage IV High Risk Neuroblastoma, the most common cancerous solid tumor in children. His survival rate was 40-50% assuming best case scenario, best disease response. We spent the last 2.5 years of his life chasing treatments, from San Antonio to Ft. Worth to New York City, for all intents and purposes, Neuroblastoma did not kill River, treatment to kill the cancer did. Trying to save his life took a toll not only on his cancer, but also the healthy parts of his body. Cancer doesn't discriminate, and unfortunately neither do many of the treatments given.

When he was younger, I would ask him his favorite color, he could easily tell me a different color everyday, I joked that rainbow was his favorite, why chose just one when you can chose 7!? Towards the end, he stuck with red as his favorite, because red is the color of fire, and anyone that knew him, knew he bled red. I knew in our first couple rounds of chemo, I wanted to give back, we saw such generosity, I couldn't help but consider what our contribution to the next family would look like. I always felt called to do something, regardless of how River's journey went. Ironically one of my first and best ideas was giving back art supplies, as River loved painting in the hospital, and those items get used up very quickly. Even the names I'd think of were color or rainbow related. As his time on earth started winding down, as we knew it was going to, the possibilities of names and what his legacy looked like started to grow. The number one idea was actually something he would say, but doesn't quite fit my mission.

It's impossible to plan a funeral of any time without some sadness, but when it's a child, the grief is 10 fold. River had so many friends, young and old. It didn't seem right to have a sad service, we wanted to celebrate him, we wanted his friends to celebrate his life, and their friendships. A colorful memorial, a party would have been what he wanted. Such a shy little guy, he loved a good party. Rainbows were the theme, and even now, I constantly get photos of rainbows from the #teamriver tribe. River's Rainbows seemed perfect, on so many fronts.

The goal of this foundation is continue River's life through his legacy. I want to use his journey to continue to educate the public about what cancer really looks *. It's not always smiling, bald babies, or singing nurses, although we had *that* nurse, and he's just as amazing in person. (I'll post it at the end, because I love him that much. He's forever River's best bud.) We want to continue to push to increase federal funding for pediatric cancer research, we will raise funds to send to organizations that further research and also send directly to hospitals and doctors that need the funding to start and/or continue their work. If you've followed River for anything length of time, I'm constantly mentioning the doctor I saw speak at the CNCF Parent Conference, who reminded us that money equals research equals cure. Without funding, there is no cure.

The other purpose is probably more important to me, it hits closer to home. We're treated in SEVEN hospitals, and only one really had support for parents. There are groups for days for the kiddos, but there's not much out there for parents. And while we may not have our lives on the line, we aren't getting poked or pumped full of poison...we have to hold it all together. We have to advocate. We have to do it all...and somehow remember to eat, shower and SURVIVE. We need love and support too, and many times it's bigger than our friends, we need to be able to connect with other parents. Sometimes it's too soon, or we aren't ready but we need it when we are. I am not 100% what this look like yet, and it may take trial and error to find the best format. Maybe there will be several options, if I've learned anything, it's that grief isn't one size fits all. River cared about people. And if the one thing he can do is help bring love and peace to a newly diagnosed family, a family that's felt loss....it's worth it. My therapist told me recentlly I seemed angry, I let that sink in, and told her yes, I AM angry, but I want something positive to come from this anger...I can't let the grief and anger destroy me, I need it to build me up, and not let this awful journey be for nothing.

#charity #cancer #nonprofit #rainbows #cncf

 

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