First comes Black Friday. Then Cyber Monday. Then, on November 28, it’s #GivingTuesday, the day when people around the world give back. This year, our face of Giving Tuesday is Honored Kid Grace – AKA the Ninja Princess. Why is she jazzed about raising critical funds for research? Maybe because researchers are cancer-fighting ninjas just like her!
7-year-old Honored Kid Grace loves everything pink, frilly and powerful. She’s been learning karate since this summer and recently earned her orange belt, even after relapsing with cancer.
When she relapsed in August, Grace’s first question to her mom, Melissa, was a question no parent ever wants to hear.
The 7-year-old asked, “Will I die?”
“‘No,’ we told her, because we were going to fight the cancer,” Melissa recalled. “‘Good,’ she said, ‘because I want to grow up and get married and be a mom.’”
Rightly known as the ‘Ninja Princess,’ Grace Ellen has fought for most of her life. Her parents affectionately call her their ‘alpha female,’ because, as her mom said, “she’s always known who she is, what she likes, and she doesn’t let anything get in her way. Not even cancer.”
Over a series of four blogs — read the first blog here — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Austin. This 9-year-old pioneer was one of the first patients to receive this revolutionary type of CAR T cell therapy, which was made possible because of the hard work of the St. Baldrick’s – Stand Up To Cancer Dream Team.
Continuing from Part One, Austin’s bone marrow transplant has failed and we find his parents at a dead end in terms of treatment options — until a ray of light appears.
During his treatment, Austin always just wanted to be a kid. After finishing a chemotherapy and radiation treatment, he’d often joyfully run out to his backyard to play on the swings.
The options were few and the stakes were huge, but the choice was clear for Austin’s parents. With their 4-year-old son months away from death, they had to choose hope – hope in the form of a clinical trial testing a promising gene therapy called Kymriah.
Kymriah. For kids with high-risk leukemia, those seven letters spell hope. But what is this lifesaving ‘living drug’? And how did this exciting new therapy come to be? Buckle your seat belts, because today we are starting an epic journey – a journey made possible by St. Baldrick’s supporters like you. Over four blogs, we’ll follow the path of this immunotherapy breakthrough – from the Phase 1 clinical trial to its recent FDA approval — and see the process through the eyes of the kids, families and St. Baldrick’s researchers who made this revolutionary research happen.
In Part One of our blog series, meet St. Baldrick’s Honored Kid Austin, a now 9-year-old cancer survivor whose last chance at life was the first human trial for Kymriah.
Honored Kid Austin was diagnosed with a high-risk form of acute lymphoblastic leukemia when he was 2 years old.
Kim Schuetz can’t forget the moment she saw the symptoms of her son’s childhood cancer. It was May 2011 and Austin was nearing his third birthday. Austin and his grandpa were playing together when the man noticed something odd. He called Kim over and together they crouched by the living room couch to look at large bumps on the sides of Austin’s neck.
Alyssa takes a selfie before shaving her head for childhood cancer research.
When Honored Kid Alyssa Greenwell says she’s a medical mystery, she’s not kidding.
“I really am a medical mystery,” she said. “My legs are in a medical journal.”
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 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.
In April of 2013, our family joined the club that no one wants to be in – the childhood cancer club. We were told that our 2-year-old daughter, Hazel, had Stage 3, high-risk neuroblastoma, which came with the added baggage of only about a 50% survival rate. To say we were utterly terrified and shell-shocked would be an understatement.
Honored Kid Hazel and her mom, Lauren, smile together during a day at the park.
But our daughter adapted to her new normal with ease and bravery. She guided us in our fight and inspired us in our determination to get through this arduous journey and give her the best chance, not only at survival, but at living a full life.
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?
When Kristine’s daughter McKenna was diagnosed with a rare pediatric brain tumor that no child has ever survived, she learned there was no known cure because of a lack of funding for research. You can help — get involved.
McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.
Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.
It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.
Honored Kid Ava struggled with eczema and severe, life threatening allergies for most of her life. Then, at 5 years old, Ava was diagnosed with biphenotypic leukemia, a rare form of childhood cancer. After tough treatment and relapse, Ava passed away in January 2017, when she was 8 years old. Her mom, Esther, shares a post from 2016 that shows what it’s like to face the impossible choices that are all too typical for families dealing with childhood cancer – choices that no parent should have to make.
In a moment of joy between mother and daughter, Esther and Ava smile for the camera in front of blooming lilacs.
July 30, 2016
Because Ava’s cancer is so rare, she’s never really fit into standard protocols. Doctors have scrambled to keep her alive these past two and a half years using different regimens. They’ve even moved to newer drugs when conventional medicine failed.
And now that we are up against the wall, Mike and I have been invited into the conversation.
We are asked questions like: “What is your end goal?”
“What intensity chemos are you comfortable with?”
“Are you looking to prolong life or are you looking for a cure?”
With every question comes an answer that changes the course of treatment.
When Honored Kid Hazel H. relapsed, there was no clear path forward. There was no tried-and-true roadmap to survival. There was no cure. But now, spunky, precocious little Hazel is cancer free for the second time. How? Three words that bring kids with cancer and their families hope – childhood cancer research.
Diagnosed with neuroblastoma in 2013, Hazel relapsed after two and a half years cancer free. Now, in a turn of events rare for kids with relapsed neuroblastoma, she’s cancer free once again.
It was the summer of 2016 when Hazel and her family went on vacation to Yosemite National Park. For once, they were all together – Lauren and Aaron, plus the five kids: Micah, Elizabeth, Hazel, Jonah and Zoe. It felt normal. Like a regular family vacation.
For some families that might sound typical, like something every family does every summer. But to this family – which had spent the past few years in and out of hospitals, making life-or-death decisions – typical was wonderful. It was a strange, unfamiliar kind of bliss.
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