Marianne’s daughter, Melissa, is a 31-year survivor of pediatric brain cancer — essentially, she’s a miracle. But being a survivor doesn’t mean that the childhood cancer journey is over. Just the opposite. Here is Marianne with the story of a recent difficult chapter of Melissa’s ongoing struggle with the long-term effects of her treatment.
Marianne’s daughter, Melissa, with her nurse of 31 years. Melissa was diagnosed with brain cancer as a child and has since struggled with severe long-term effects from the intense treatment she received.
It’s been over 31 years and it can still make my heart race with fear. Cancer. Cancer. Cancer.
Melissa, my daughter, has lived independently for over 17 years, despite limitations caused by treatment for pediatric brain cancer. Seventeen years after finishing treatment, she began suffering through many seizures and 8 strokes. She was forced to quit her job with Disney and rely on disability benefits to pay her bills.
At St. Baldrick’s, funding childhood cancer research is our mission. But for six of our staff, the goal is deeply personal — because their children were diagnosed with cancer. Read on for thoughts from these moms on what Mother’s Day means to them, what they’ve learned about motherhood through the good times and bad, and how childhood cancer has changed their lives forever.
St. Baldrick’s staff members and cancer moms from left to right: Robyn with her son Keaton, Nancy with her son, Scott, and Vanessa with her daughter, Aubrey.
Danielle holds her son Mason, who was diagnosed with medulloblastoma in 2006. A force to be reckoned with, the little boy faced his cancer with stalwart determination and his signature stubbornness. Mason died in 2007.
Mother’s Day is always bittersweet for me. I will always be a mom to three boys. I just do not have one here with me because cancer took Mason’s life from us. Mother’s Day reminds me of Mason’s laughter, competitive nature, his love for his brother and the family we had. I am Mason’s mom. Cancer made me do things to my son I never imagined I would have to do to my child to get him to survive. Cancer taught me how to be a fierce advocate for my child. Cancer made me live my worst moments as a mom and some of the best. Cancer taught me I had to take care of and protect all my kids, not just the one who was sick. Cancer broke my heart. But being a mom to Mason, Mateo, and Marcus puts my heart back together every day.
Joey Chamness has grown up from being St. Baldrick’s very first Ambassador to become a longtime shavee and the VEO of his college event — helping fundraise for childhood cancer research to the tune of thousands of dollars. Why does he do it? Because this survivor knows firsthand how important it is to find better, safer treatments and cures for kids with cancer.
(Left) Joey rests and watches movies during his treatment for osteosarcoma. (Right) Now a survivor, Joey speaks during a St. Baldrick’s head-shaving event.
21-year-old Joey Chamness considers himself lucky.
When it comes to fighting childhood cancer, Honored Kid Tyler is a triple threat – he’s a survivor of kids’ cancer, a shavee and a nursing student! Why is he passionate about conquering childhood cancers? Because this three-time cancer fighter doesn’t want more kids to go through what he did.
Tyler smiles after his shave with 9-year-old Honored Kid Ally.
While Tyler was in the hospital, he became very good at pretending that he was asleep. He overheard all sorts of things – things that doctors liked to sugarcoat when he was awake. Like the fact that they thought he was going to die.
For Eric Haddad, head shaving isn’t just a one-time deal, because as the dad of a kid who fought brain cancer, he knows firsthand that the effects can last a lifetime. Next month, at the Rocky River event in Ohio, Eric will be shaving his head for the eighth time, while raising funds for research that he hopes will lead to better, safer treatments for kids with cancer.
During a past event, Eric shaves for his son, Shane.
When Shane Haddad was 4 years old, he started fighting childhood cancer. Eight years later, he hasn’t stopped fighting.
My kids are alive. My husband is alive. We are here and we are together. That is what I tell myself when the anger and bitterness take hold. My husband served the United States Army for over 22 years. During that time, two of our children, Collin and Patrick, were diagnosed with cancer.
Patrick and Collin are brothers and were both diagnosed with childhood cancer. Patrick, now 13 years old, was diagnosed with stage II intermediate risk hepatoblastoma, a rare cancer of the liver, in 2010. Collin, now 11 years old, was diagnosed with acute lymphoblastic leukemia (ALL) when he was 2 years old.
While my husband fought on foreign soil, I served our nation as a military spouse and tackled childhood cancer with our kids in North Carolina. As a family, we sacrificed so much for this nation and yet we ask so little in return – just a chance for a brighter future. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act can get us there.
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.
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.’
A childhood cancer survivor, Brittany Ross smiles during her long-awaited wedding day to her fiance, Patrick.
When Honored Kid Brittany Ross was told that she’d be lucky to live another three weeks, she didn’t react with sadness. She didn’t bury her head under her hospital bed blankets and cry or ask, ‘Why me?’
She was mad. She was fired up. She was determined to beat childhood cancer.
“They made it seem like I had no chance,” Brittany said of her diagnosis in December 2000. “At this time, I was like, ‘Look, I’m 15 years old. I haven’t really started living my life yet.’”
And she had a come-back that any teenager would be proud of.
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.’”
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.
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