Back in April, Ambassador Zach was finally healthy enough after his bone marrow transplant to go out in public. What did he decide to do after that momentous milestone? He joined the hundreds of advocates speaking up for kids’ cancer research on Capitol Hill during Childhood Cancer Action Days. Here’s his recap of that trip and the big moments that have come since …
Ambassador Zach poses for a photo in front of the United States Capitol building and its famous dome during Childhood Cancer Action Days in April.
I received a bone marrow transplant over a year ago, and I was so glad that I was healthy enough to speak on Capitol Hill this past April as a St. Baldrick’s ambassador. As an ambassador, I am a face and a voice for childhood cancer, and while in Washington, D.C., my family and I represented thousands of children and families who are affected by childhood cancer. I was lucky enough to share my story and talk about the importance of funding childhood cancer research through the STAR (the Survivorship, Treatment, Access and Research) Act, the most comprehensive childhood cancer legislation ever taken up by Congress. With the recent passage of the STAR Act, we have come so far, but we still have so far to go.
Honored Kid Jack is selfless, brave, passionate, and funny. The seventh grader works hard, even when the odds are against him and if he could be friends with everyone in the world, he would be. In a word, Jack is special. Even cancer couldn’t take that away from him. And that’s what makes him a legendary hero to us — and this year’s League Champion of the St. Baldrick’s League of Legendary Heroes. You can be a legendary hero too! Get started today.
Jack was named 2018 League Champion for the League of Legendary Heroes because of his dedication to fundraising for kids’ cancer research. Photo by Courtney Van Alice Photography
Driving home from a visit with her sister, Vickie decided to run an errand. She pulled into the parking lot at Office Depot and stopped the car, expecting her son, Jack, to get out with her. But he didn’t.
“He’s like, ‘I can’t get out of the car, Mom. I can’t move,’ And I was like, ‘What? You were just wrestling with your cousin.’”
From its inaugural Phase 1 clinical trial through its successful Phase 2 trial, we have traced the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia and few options, like Honored Kids Austin and Ori. (Read the whole series here.) Now, with a historic decision made in August, we are at the end of our story, but not at the end of the story of Kymriah. Instead, Kymriah’s is just beginning – and starting a new chapter of hope for kids with cancer.
Austin (left) and Ori (right) are both alive today thanks to Kymriah and their participation in the Phase 1 and Phase 2 trials.
On August 30, 2017, big news rippled through the childhood cancer community. On that late summer day – before the start of Childhood Cancer Awareness Month – the FDA made a historic move that changed the landscape of childhood cancer research forever.
Over a series of four blogs — catch up with parts one and two about the Phase 1 trial — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Ori.
After relapsing for the second time and with his cancer spreading to his nervous system, Ori’s best chance at life was a Phase 2 trial of this experimental CAR T cell therapy. With a sunny attitude and staggering strength of spirit, Ori gave this new treatment a shot – with astonishing results.
Ori was in cancer treatment for much of his young life and throughout the journey, his strength and positive attitude have been remarkable. “He has been through so much, but has done it all with a great attitude and a smile on his face,” said his mom, Kaye.
When a child with cancer relapses the first time, their treatment options shrink. But when a child with cancer relapses again, their options and chances at survival don’t just shrink – they’re nearly extinguished. That is what happened to Ori.
Investing in the next generation of childhood cancer researchers — like researcher and St. Baldrick’s International Scholar Dr. Joseph Lubega — can change the lives of kids with cancer all over the world. Read on (and watch a video shot at the Uganda Cancer Institute) to learn more about the huge impact Dr. Lubega is making on kids with cancer in East Africa.
When Belinda heard, ‘leukemia,’ she was terrified.
She feared cancer. Belinda saw the impact it had on her family. In fact, she’d attended her cousin’s funeral in the spring. But cancer striking her 5-year-old daughter, Christa? How could that happen?
We sat down virtually with St. Baldrick’s researcher, Stephan A. Grupp, MD, PhD, for a Q&A on immunotherapy. Dr. Grupp, located at Children’s Hospital of Philadelphia, is a key member of the Stand Up to Cancer – St. Baldrick’s Pediatric Dream Team. He treated the first child with CAR T cell therapy, which was recently approved by the FDA for acute lymphoblastic leukemia (ALL). Check out our Twitter chat with Dr. Grupp and see what he thinks the future is for immunotherapy and childhood cancers.
There’s nothing sweeter than a reunion with someone you love. Nancy Swart knows that better than anyone. Earlier this month, she had the happiest of reunions with her son Zach, who has been away from home to get treatment for leukemia. Read on for more from Nancy about the time they spent together, how Zach is doing since his bone marrow transplant and the news that made him smile.
Nancy and Zach have a special moment together.
Zach’s dad, Tom, has been living with Zach in an apartment we have been renting in New York City, so that we can be close to the hospital for follow-up visits. It has been great for Tom to be able to spend time with Zach and I know Zach has needed some quality time with dad, so it has been a nice change to get some male bonding time.
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.
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.
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