We have big news. Yesterday, the the FDA Reauthorization Act passed the Senate which includes critical components of the Research to Accelerate Cures and Equity (RACE) for Children Act. Read on for more about the RACE Act and what this news means for Rob Lenfestey, the dad to Honored Kid Scott, and for families everywhere.
Honored Kid Scott ‘speaks up’ for kids’ cancer research on Capitol Hill during this year’s Childhood Cancer Action Days.
When our son, Scott, was diagnosed with acute lymphoblastic leukemia at age 3, my mind was swimming with questions about his treatment options. During the last 20 years, the FDA has approved approximately 190 new cancer therapies for adults; only three new treatments have been approved specifically for treating kids with cancer. Our hopes hinged on the existing treatments available, and the prospect of drugs that may be waiting in the pipeline if conventional treatments weren’t effective at killing his leukemia.
Last week, we shared Honored Kid Zach’s amazing story and the news that the three-time cancer fighter was going to get a bone marrow transplant — a procedure that could put the 15-year-old into remission for good. Today, about a week after the transplant, Zach’s mom has an update.
The family gathers before Zach’s bone marrow transplant. From left to right: Nancy, Ben, Tom and Zach, with Gabe on Facetime.
My son, Zach, is fighting cancer for the third time, which means this is the third time going through tests, treatments and all the uncertainties that follow. Zach had three months of intense chemo therapy to try to get him into remission before his bone marrow transplant or BMT. At the end of his treatments, through numerous hospitalizations, we learned that Zach was not in remission.
Honored Kid Zach has faced leukemia three times since he was 6 years old. On Wednesday, after 10 years of fighting, he hopes that this is it — that a bone marrow transplant will put him in remission for good. Learn about his tremendous journey and why children’s cancer research is important to him.
Zach clowns around during treatment.
Wednesday is a big day for 15-year-old Zach. After two relapses and years of childhood lost to cancer, it’s a new start.
“Our son would not be with us today if it weren’t for St. Baldrick’s,” says Phineas’ dad, Carlos. Read on to see how research saved the little boy’s life.
VIDEO: Phineas’ Story >
On a mountain bike ride with a friend, 9-year-old Phineas was sailing along when he decided to take a risk and pedal over a bridge not meant for bicycle traffic. He wiped out in a big way.
But without so much as a single tear, he picked himself up, dusted himself off, and got back on the bike.
Compared to what this boy had been through two years before, that was nothing.
Katie Pierantozzi always wanted to be a mom. But she never imagined she’d be a cancer mom. In celebration of Mother’s Day, read on for a message and a Mother’s Day wish from Katie for all those moms out there who have a child with cancer.
The Pierantozzi family from left to right: Nicky, Justin, Michael and their mom, Katie.
Her name was Junie. I loved to rock my favorite baby doll in a little wooden crib, painted pale pink. I liked real babies, too. I looked forward to being a mom. I would be good at it.
Eventually, God gave me three beautiful baby boys. It didn’t take long to realize that motherhood is no Pampers commercial, where babies crawl around on spotless ﬂoors and moms look perfect.
Honored Kid Ryan C. faces childhood cancer with a contagiously positive attitude — and our social media manager, Alison Sutton, got to experience this firsthand when she hung out with him last month! Read on to see what life is like for Ryan and bask in the glow of this amazing kid, his awesome family, and their St. Baldrick’s fundraising team — Team Rally for Ryan.
St Patrick’s Day is a special day at the St. Baldrick’s Foundation because 17 years ago, our founders hosted their first head-shaving event!
This St. Patrick’s Day I spent the day at Arnold Palmer Children’s Hospital in Orlando, Fla. with Honored Kid Ryan C. to see what a day in his life is like.
Honored Kid Georgia knows what it’s like to be bald. After being told she would lose her hair during chemotherapy, she shaved her head and never looked back. Now, Georgia is 17 years old, five years cancer free, and about to go bald again — but this time, by choice. Read on to find out why Georgia is willing to lose her locks one more time.
Georgia with her dad, Trevor, her mom, Courtney, and her sister, Ivy.
I’m never going to forget my 10th birthday — mostly because I spent it in the hospital.
It was my first visit to a hospital since birth, and I really didn’t know what to expect.
There were some pleasant surprises. They wheeled me around everywhere, even though I could walk just fine, and the Child Life Specialist made a birthday sign for my door.
I had a direct line to room service at all hours — milkshakes at midnight! The nurses were really nice, and most of them wore Silly Bands on their wrists (all the rage in 2009).
Help Georgia reach her goal of raising $10,000 for kids’ cancer research! Donate towards her shave today >
But not every surprise was a good one.
The day after my birthday, I was diagnosed with acute lymphoblastic leukemia (ALL).
Childhood cancer survivor and budding chef, Petey Miceli, celebrates 5 years cancer free and recognizes Pi Day — the day we celebrate the ratio of the circumference of a circle to its diameter — by sharing his story, along with his famous pizza pie recipe. (Pi Day is today, March 14 or 3.14 — get it? See, math can be fun! And delicious.)
Petey shows off his handcrafted pizza pies.
For 13-year-old Petey Miceli, his passion for cooking all started with an egg — and childhood cancer.
You might know Honored Kid Maddox — or Maddy, as his mom calls him — as the 10-year-old cancer survivor spouting off words like “dexamethasone” in our latest campaign videos. Maddox’s childhood changed drastically after he was diagnosed with leukemia eight years ago. Now, he’s doing everything he can to take his childhood back from cancer — but, as his mom Geri explains, life in remission hasn’t been easy.
Maddox’s mom Geri, little sister Danika, and dad Brad pose for a photo with Maddox during a St. Baldrick’s event.
In 2010, after months and months of intense chemotherapy, Maddox was in remission.
He had one last phase of treatment for acute lymphoblastic leukemia (ALL), and it was meant to keep him there.
It was a gigantic step for us towards some sense of normalcy.
Honored Kid Leon is one tough cookie. He’s fought childhood cancer not just once, but twice, and this time, Leon and his family hope it’s gone for good — thanks to an immunotherapy trial run by Leon’s buddy Dr. Daniel Lee, an investigator with the Stand Up to Cancer – St. Baldrick’s Dream Team.
Leon and St. Baldrick’s researcher Dr. Daniel Lee share some smiles.
Everything changed one hot summer day in Colorado. Leon was spraying his cousins with a water gun and playing with the hose. Then the 9-year-old slipped on the slick deck and fell hard.
It was a badly bruised hip, said the doctors in the emergency room. It will heal. But it didn’t. Leon’s grandmother, Lisa, watched her normally active grandson walk gingerly and even resort to crutches.
Then she watched Leon get tired more quickly than a kid should. And then she watched him sleep. He slept and slept.
“And I knew then,” Lisa said. “I was like, ‘I think he’s sick again.’”
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