Families

Our Family is Lucky Because My Son Had Options

by Jeff Bernstein
September 17, 2018
Micah dances in the hospital

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.

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Families

From Sushi to Superheroes, This Cancer-Free Kid Had the Best Answers to Our Questions [VIDEO]

by Erinn Jessop, St. Baldrick's Foundation
September 4, 2018

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…

Micah in the hospital and cancer free

(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” 

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Families

Dear Son, I’m Proud to be Your Dad

by St. Baldrick's Foundation
June 16, 2018

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.

Kellan and Dan

Ambassador Kellan and his dad, Dan.

Dear Kellan,

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.

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Real-Life Stories

This Is What Childhood Cancer Survivorship Looks Like

by St. Baldrick's Foundation
June 1, 2018

Today is the first day of National Cancer Survivors Month. To kick it off, 2014 Ambassador Lauren shares what survivorship means to her and gives us a peek into what life is like as a childhood cancer survivor.

Lauren

Diagnosed at age 14 while still in high school, Lauren is now 20 years old and is pursuing her dream of becoming a pediatric oncologist, so she can devote her career to both to the treatment of kids with cancer and to the research to find cures.

June 7th, 2012 is a day that will forever be etched into my memory. This was the last day of my freshman year of high school, but also the day my life was forever changed. After eating dinner, my mother began shaking in her seat as my stepfather informed me that the tumor that had been removed from my abdomen was malignant and so were the surrounding lymph nodes. I had stage 4 neuroblastoma.

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Events and Fundraisers

Mom Shaves in Memory of ‘Brave, Beautiful’ Daughter With Neuroblastoma

by Erinn Jessop, St. Baldrick's Foundation
March 21, 2018
Leanne, Ava and Addalyn

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

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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Families

Kellan Knows Cancer, but Not the Word ‘Can’t’

by Erinn Jessop, St. Baldrick's Foundation
February 1, 2018

February 4 is World Cancer Day AND the 6th birthday of St. Baldrick’s Ambassador Kellan! Born with cancer, this kid started life beating the odds and defying limits, and that’s been his MO ever since. In honor of World Cancer Day and Kellan’s birthday, help us take childhood back from cancer.

Kellan grins from his wheelchair

Ambassador Kellan received his first wheelchair when he was 17 months old. He now has dreams of competing in the Paralympic Winter Games, a massive sporting event similar to the Olympic Winter Games, where athletes with a range of physical disabilities compete in everything from alpine skiing to ice hockey to snowboarding.

Elizabeth was driving her son Kellan back from his first skiing lesson when the boy lowered his voice to an excited whisper. ‘Mom,’ he said, ‘I have to tell you something.’

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Childhood Cancer

St. Baldrick’s Top 10 Highlights of 2017

by Erinn Jessop, St. Baldrick's Foundation
January 8, 2018

2017 was a big year, full of breakthroughs, incredible stories and some pretty amazing achievements in the childhood cancer world. Join us as we reflect on St. Baldrick’s top 10 highlights of the past year — and make sure you give yourself a pat on the back, because much of this was possible because of YOU!

St. Baldrick's 2017 Highlights

Are you ready to take a trip down memory lane? Here we go …

1) Passage of the RACE Act

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Families

Meet Kellan

by St. Baldrick's Foundation
January 2, 2018
Kellan in his wheelchair

With an irresistible laugh and the face of a cherub, 5-year-old Kellan wins the hearts of everyone he meets. No one even notices his wheelchair.

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News

Dream Team Discovers Potential New Weapon Against Neuroblastoma

by St. Baldrick's Foundation
September 28, 2017

Last week, in the pages of the medical journal Cancer Cell, St. Baldrick’s researchers announced a discovery that could radically transform treatment for kids with neuroblastoma – a new immunotherapy drug candidate that harnesses the immune system to fight cancer.

SBF research development neuroblastoma

Neuroblastoma is a cancer that begins in the nerve tissue outside the brain, usually in a child’s abdomen. It strikes very young children, up to about age 7, and is the most common cancer diagnosed in infants. Only about 50% of patients survive the high-risk form of neuroblastoma.

All of this makes this new targeted immunotherapy for neuroblastoma especially good news, but it gets even better.

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Advocacy

St. Baldrick’s Advocate of the Month: Ron Rozman

by St. Baldrick's Foundation
September 27, 2017

Honored Kid Amanda was just a year old when she was diagnosed with neuroblastoma and only a toddler when she died. This is why her dad, Ron Rozman, advocates for kids’ cancer research — so other parents and kids don’t ever have to endure the cruelties of childhood cancer. Read on for more about his exuberant girl, her tough fight and his advice on how you can become an advocate, no matter where you live.

Ron and Michelle Rozman cuddle with their daughter Amanda

Ron and Michelle Rozman cuddle and laugh with their daughter Amanda during a day at the park.

She loved to dance. Three-year-old Amanda twirling around and exclaiming, “Whee! Whee!” in sheer delight is a precious memory for Ron and Michelle Rozman.

It’s one of many favorite remembrances of their then-only child who was diagnosed with stage 4 high-risk neuroblastoma when she was 16 months old.

It is these memories that now fuel Ron’s dedicated efforts as an advocate for pediatric cancer research funding.

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