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.
Kalea and Noah snuggle in one hospital bed during treatment.
From waking up in the morning to getting tucked in at night, siblings Noah and Kalea were practically inseparable.
They’d eat their breakfast together – whatever 6-year-old Kalea had, 4-year-old Noah wanted too – and brush their teeth together. The two kids would get so immersed in playing together, and so quiet, that their parents, Duncan and Nohea, would get nervous and go check on them. Inevitably, the adults would interrupt some elaborate imaginary adventure and the kids would shoo them away.
We talk a lot about how childhood cancer affects the family. But what about the siblings, specifically? 2016 Ambassador Cheyenne’s mom opens up about how her 5-year-old son, Tristen, copes with his big sister’s childhood cancer journey, and how she and her husband balance their children’s needs.
It’s September. This is a big month for those of us in the childhood cancer community.
If you know anyone impacted by childhood cancer, I am sure your Facebook feed is blowing up with heart wrenching facts about how underfunded the research is and how rare childhood cancer ISN’T.
One thing that tends to be forgotten is how childhood cancer impacts the rest of the family. Most specifically, the siblings.
Honored Kid Micah shows off his dance moves as his dad, Jeff, looks on.
I’m sitting in the waiting area of a hospital 100 miles from home to get the results of my 7-year-old son’s latest MRI scan. Strange to think of myself as one of the lucky ones, but in this club that no one wants to join, I am lucky. My son Micah is now celebrating four years with no evidence of disease, after being diagnosed with an aggressive form of cancer when he was just a toddler. But that good fortune didn’t come out of nowhere. We are lucky because Micah had treatment options – options made possible by St. Baldrick’s Foundation donors like you. Now I need your help to make sure that every child with cancer has as many options as my son Micah had.
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”
What Does it Take to Beat Cancer, Fly on a Zip Line and Go to School Without Sight? Bravery Every Day
Honored Kid Matthias was diagnosed with retinoblastoma when he was just 3 months old, leaving him blind. But that hasn’t stopped him. Today, Matthias is a childhood cancer survivor and an independent 10-year-old who is learning to navigate the world without sight. As his mom, Katie, shares, he’s one brave kid.
Matthias was just a baby when doctors had to remove his eyes to save his life. Since then, he’s learned to read braille and use a cane to help him get around. Photo by Jen Sherrick Photography
When Matthias lost his eyes to bilateral retinoblastoma nine years ago, we never could have imagined how happy and full his life would be. He is a hiker, traveler, and adventurer who has visited 23 states and two countries. He loves sports, especially hockey. He is obsessed with learning about weather, and he is a good student. He is a loyal friend and a fierce advocate for pediatric cancer research and disability rights. He has shaved his head five times for St. Baldrick’s, traveled to Washington D.C. twice to talk to legislators about the STAR Act and is a guest speaker for a disability awareness organization.
What should you say to someone whose loved one has died? Vicki Bunke has some simple advice that comes from heartbreaking experience — her 14-year-old daughter, Honored Kid Grace, died of bone cancer in March. Here’s what Vicki has to say …
Vicki’s daughter Grace grins and laughs in her mom’s arms. Grace was diagnosed with osteosarcoma when she was 11 years old and lost part of her leg to the disease. After her third relapse, she knew her disease was terminal but remained determined to experience everything life had to offer. Photo by Ashton Songer Photography
For 20 years, I have had the privilege of working as a school psychologist. I am honored to get up every morning and go to a job where I get to spend hour after hour interacting with young people. Sadly, this past spring, a young student who attended the high school where I work — and whom I loved dearly — died of osteosarcoma, a childhood bone cancer.
This student happened to be my 14-year-old daughter, Grace.
From the moment he was born, Ambassador Kellan has been fighting childhood cancer and its devastating effects. But he doesn’t fight alone. His dad, Dan, is right there with him — and Dan wouldn’t have it any other way. In honor of Father’s Day, Dan wrote this letter to Kellan to share how blessed he feels to be his dad.
Ambassador Kellan and his dad, Dan.
As I sit here writing this letter, you are in the operating room at Boston Children’s Hospital. This is a familiar place to you, your Mom and me. As we walked down the halls yesterday to check in, waves of emotion came over me as I reflected on the past six years. We have spent many days and weeks here since your birth.
They’ve told us that your operation will be approximately nine hours, but I know it’ll feel like a lifetime before I see you again. So, here I wait and try to put into words what it means to be your Dad. I don’t know that it’s possible to say exactly what it means to me. Although your smile and thumbs up prior to today’s surgery tells part of it.
Since day one of your life, you have been an inspiration. We watched your battle with cancer begin on the day of your birth. Chemotherapy started on day three. Your tumor resection surgery was month three. Hundreds of visits to the doctor, scans and appointments followed. At 17 months, you got your wheelchair and started to run, Kellan style. At year five we celebrated no evidence of disease — cancer free! Although you are free from cancer, you are paralyzed. Cancer left its mark, but it doesn’t define you or your remarkable life. This year, you were named an Ambassador for St Baldrick’s, an honor I know you don’t take lightly. Your willingness and ability to advocate for all children and families impacted by childhood cancer humbles me. You speak about it from the heart and I am filled with pride when you and your Mother work so hard for others.
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.
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