I was recently invited to serve as a patient family advocate for the St. Baldrick’s / Stand Up to Cancer Pediatric Cancer Dream Team representing the National Cancer Institute. If you’re not familiar with the Dream Team and what they’re doing, it’s worth taking a few minutes to read up on the project.
In short, it’s a multi-institutional effort to accelerate cures for childhood cancer by sharing the skill, knowledge and unique resources of 8 top-notch research institutions.
Carlos Sandi with his son, Honored Kid and Ambassador Phineas.
Before Honored Kid Emma Sophia was 2 years old, she was in a fight for survival after being diagnosed with leukemia. Now 7 years old and two years past treatment, this amazing kid is sharing her story to inspire others to support childhood cancer research — like the lifesaving research funded by the St. Baldrick’s Foundation and Stand Up to Cancer.
(Left) Honored Kid Emma Sophia in treatment as a toddler. (Right) Emma Sophia is now 7 years old, in remission and aspires to be an artist, a veterinarian and a chef.
Emma Sophia was barely 20 months old when she started limping at a family party. While the rest of her friends were running around and chasing one another, this little girl could hardly walk. All she wanted was for her daddy to hold her.
“She was so young and so small,” Emma Sophia’s dad, Joey, remembered. “She couldn’t tell me what was wrong.”
It’s officially Childhood Cancer Awareness Month and we are kicking it off by getting to know Honored Kid Micah! Bright, curious and quite the dancer, Micah has been fighting neuroblastoma since he was 15 months old. Thanks to research, he’s now cancer free! So, we asked him our burning questions, like how does it feel to be a cancer-free kid? And what song is he dancing to these days? This is what Micah said…
(Left) Micah goofs off in the hospital during treatment for neuroblastoma in 2015. (Right) Micah plays on the monkey bars — something he missed doing when he was stuck in the hospital during treatment. After multiple relapses and undergoing many different treatments and experimental clinical trials, Micah is currently cancer free.
1) If you could have a superpower, what would it be and why? The ability to turn into any dragon because I love the “How to Train Your Dragon“ books, movies, and TV series.
2) What ’s your go-to song to sing and dance to? “This Is Me” from “The Greatest Showman”
Honored Kid Sully loves to bike, run and wrestle with his brothers like any 11-year-old boy. He even tried out skiing over spring break. You’d never expect that just a year and a half ago, Sully woke up from surgery unable to walk.
Honored Kid Sully loves to bike, run, ride roller coasters and play with his brothers, Cashel and Finn. He wants to be a civil engineer when he grows up and dreams of designing the world’s best roller coasters.
It all started with back pain. It was innocuous at first. Hot baths would relieve Sully’s pain for a while, but it would come back with a vengeance. Finally, after many doctor’s visits, a lot of ibuprofen and no improvement, Sully’s parents, Dan and Jen, brought their son to the ER.
Hours later, the boy was in emergency brain surgery.
At St. Baldrick’s, funding childhood cancer research is our mission. But for six of our staff, the goal is deeply personal — because their children were diagnosed with cancer. Read on for thoughts from these moms on what Mother’s Day means to them, what they’ve learned about motherhood through the good times and bad, and how childhood cancer has changed their lives forever.
St. Baldrick’s staff members and cancer moms from left to right: Robyn with her son Keaton, Nancy with her son, Scott, and Vanessa with her daughter, Aubrey.
Danielle holds her son Mason, who was diagnosed with medulloblastoma in 2006. A force to be reckoned with, the little boy faced his cancer with stalwart determination and his signature stubbornness. Mason died in 2007.
Mother’s Day is always bittersweet for me. I will always be a mom to three boys. I just do not have one here with me because cancer took Mason’s life from us. Mother’s Day reminds me of Mason’s laughter, competitive nature, his love for his brother and the family we had. I am Mason’s mom. Cancer made me do things to my son I never imagined I would have to do to my child to get him to survive. Cancer taught me how to be a fierce advocate for my child. Cancer made me live my worst moments as a mom and some of the best. Cancer taught me I had to take care of and protect all my kids, not just the one who was sick. Cancer broke my heart. But being a mom to Mason, Mateo, and Marcus puts my heart back together every day.
Brooks was diagnosed with inoperable brain tumors when he was 5 years old. In May 2016, he passed away at home, surrounded by his family. “He did not like me to be sad,” said his mom, Tracey. “He had a caring and loving heart. He wanted everyone to be happy.”
After Ambassador Brooks got sick, he started painting – a hobby the 5-year-old had never considered before. His art was abstract and vibrant, bursting with life and joy. When he painted, it was as if he dipped his brush into his soul. A little bit of Brooks and his love was in every painting.
It was this art that St. Baldrick’s donor Mary Clency glimpsed when she was getting out of her car at the local craft store – a woman was carrying two bags emblazoned with these colorful paintings. Immediately, Mary knew exactly who it was. The woman was Brooks’ mom, Tracey Blackmore, someone Mary had held in her heart for years, but had never met.
Brooks had brought them together.
Joey Chamness has grown up from being St. Baldrick’s very first Ambassador to become a longtime shavee and the VEO of his college event — helping fundraise for childhood cancer research to the tune of thousands of dollars. Why does he do it? Because this survivor knows firsthand how important it is to find better, safer treatments and cures for kids with cancer.
(Left) Joey rests and watches movies during his treatment for osteosarcoma. (Right) Now a survivor, Joey speaks during a St. Baldrick’s head-shaving event.
21-year-old Joey Chamness considers himself lucky.
Ambassador Julia is a volunteering powerhouse. Bake sales, bingo, fun runs, speeches — she does it all. Why? In honor of Volunteer Week, read on for a heartwarming Q&A that will give you all the answers and leave you wanting to give back too. Join Julia and get involved!
Ambassador Julia goes gold for childhood cancer awareness.
1. What’s your favorite volunteering position and why?
My role as St. Baldrick’s ambassador has become a favorite, but I love any of the volunteering I do that helps sick kids. That’s most of the volunteering I do lately. Helping sick kids is my favorite, because I’m helping them like people helped me when I was on treatment and having so many surgeries. Also, when I grow up I want to have a foundation that helps create programs that make sick kids who are in the hospital happy. In fact, I want to perform for kids in the hospital when I grow up.
2. What is it like being a St. Baldrick’s Ambassador? What’s your favorite part?
It’s really exciting being a St. Baldrick’s ambassador! I get to make fun videos talking to people about childhood cancer and what St. Baldrick’s does, and I REALLY love going to shave events! There’s always a lot of action, everyone is really nice and I get to make speeches. The shave events are definitely my favorite part, along with knowing that I’m helping raise money for childhood cancer research.
Ambassador Julia smiles with a shavee at the Occoquan-Woodbridge-Lorton Volunteer Fire Department head-shaving event in Virginia.
3. Where else do you volunteer and how often do you volunteer?
I volunteer at least once or twice a month for several organizations in my community. Once a month, I visit a local assisted living facility with my music teacher and other students from the studio. We spend an hour performing for the residents. I play the piano and sing, and I really enjoy making the older people happy.
In honor of National Siblings Day, we bring you an amazing story of a brother’s love and dedication to honor his sister and raise money for childhood cancer research in her memory. Meet Geordan, a long-time shavee and the proud big brother of Honored Kid Rayanna.
Rayanna and Geordan share a sweet moment.
When Geordan shaves with St. Baldrick’s, his sister is there. When he drives his race car, she’s with him. When he walks the halls of his high school, rocking his bald head, Rayanna is never far away. The little girl is always with Geordan in his thoughts, hanging around her brother just like she did before childhood cancer took her away.
“Rayanna was my only full sibling and now it’s just me,” the 16-year-old said. “I miss Rayanna and wish there had never been childhood cancer.”
Leanne gives Ava a kiss on her peach-fuzz head, while her baby sister, Addalyn, giggles.
It turns out that being bald is an instant conversation starter. Leanne, who just recently shaved with St. Baldrick’s, loves it.
“It’s very empowering,” she said. “Honestly, it hasn’t even been a week yet and I can’t tell you how many times I’ve been asked about my hair. It just opens the door for conversation and I love that, because I love talking about my daughter.”
Her daughter’s name was Ava – Ava the brave, bald and beautiful.
Ava showed an independent streak as soon as she could sit up by herself. “I’ve never seen anything like it. She just really was her own person,” her mom said.
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