Local families advocate for most comprehensive childhood cancer bill
Matthias Vescelus is like most 9-year-old boys. He enjoys sports, appreciates a good story and loves to spend time with his family and friends.
The Noblesville youth is also a cancer survivor, who lost his sight to the disease.
But he’s making a difference in the world for other kids who are struggling from similar afflictions.
He recently returned from a trip to Washington, D.C., visiting Capitol Hill as part of a group advocating for the Childhood Cancer Survivorship, Treatment, Access and Research Act, which is being called the most comprehensive childhood cancer legislation ever introduced.
The House of Representatives passed the bill, also known as the “Childhood Cancer STAR Act,” on May 22. President Donald J. Trump signed the bill June 5. The United States House Committee on Appropriations’ is currently deciding whether it will be funded.
“There are a lot of urgent matters in our country, for sure, but every day more and more kids are being diagnosed (with cancer),” said Katie Vescelus, Matthias’ mother. “I think that people really do believe that if you get a cancer diagnosis, everything is going to be OK. The reality is, one out of five kids die within five years of diagnosis, and two-thirds of the survivors have long-lasting, physical effects from treatment.”
A price to pay
Matthias Vescelus was just 3 months old when he was diagnosed with retinoblastoma, a cancer that begins in the back of the eye. He was about to turn 1 when he lost his vision in 2009. “We managed to remove my eyes before the cancer took hold of me,” he said.
Each year in the United States, an estimated 15,780 children between birth and the age of 19 are diagnosed with cancer. Cancer also continues to be the leading cause of death by disease in children under the age of 14, according to the Centers for Disease Control and Prevention (CDC).
“We’re considered lucky,” said Katie Vescelus. “Our son lost both eyes and has to go through lots of medical testing … They’re constantly monitoring for long-term consequences of treatments he (Matthias) received almost 10 years ago. That’s a problem when we’re the lucky ones.”
Katie Vescelus and her husband, Craig, knew they wanted to use their family’s story to help people understand that, even though their son is alive, he paid a high price.
In 2012, Katie Vescelus shaved her head for the first time with the St. Baldrick’s Foundation to raise money for cancer research. She’s since written guest blogs for the foundation, penned letters to government officials and attended events to help educate the public.
She’s not alone, either. The rest of the family, including Matthias’ older brother Magnus, 11, has each participated every step along the way.
“Our hearts went to research … We found ourselves pretty shocked at the lack of treatment options,” Katie Vescelus said. “We thought that modern medicine was something that could really help (Matthias) more. It’s crazy that there’s nothing better out there for these kids.”
The foundation, in 2013, asked Matthias Vescelus if he wanted to serve as a St. Baldrick’s ambassador to represent the thousands of kids touched by childhood cancer.
He agreed to do it. Other ambassadors don’t get the opportunity to be an ambassador while they’re alive.
An amazing little boy
The five children who are selected each year as St. Baldrick’s Ambassadors act as a reminder that childhood cancer doesn't discriminate and that one in five kids diagnosed in the United States will not survive.
Brooks Blackmore had just turned 6 when he died May 21, 2016, less than a year after he was diagnosed with two stage-four inoperable brain tumors.
“He was so silly and funny,” said Tracey Blackmore, Brooks’ mother. “He loved life and learning new things. He was very social … He made us laugh and was a reason to smile. He was an amazing little boy.”
Tracey Blackmore, who lives in Carmel with her husband, Josh, and 4-year-old fraternal twins, was caught off guard when her eldest son started to lose coordination and struggled to form words.
“(Brooks) was a completely healthy, athletic, fun-loving little boy,” she said. “It was a big shock to us when he got diagnosed.”
The prognosis? There is no cure.
“It’s a nasty tumor,” said Tracey Blackmore. “We just had to do what we could to prolong his life.”
Six weeks of radiation treatment and oral chemotherapy did shrink both tumors, and Brooks Blackmore’s condition improved to the point where his parents planned to register him for the following season of T-ball.
“We started to get hope again with (Brooks) regaining a lot of function,” Tracey Blackmore said. “We thought maybe this is our miracle. Maybe we are the ones who are going to beat it.”
An emergency MRI shortly after revealed a cervical tumor on Brooks Blackmore’s spine.
“They (doctors) told us once again, ‘There’s nothing you can do for a cervical tumor, and it will go fast,’” said Tracey Blackmore. “It was devastating.”
Brooks Blackmore died two months later.
“After Brooks passed, I knew I had to make his life mean something and try to help other families at the same time,” Tracey Blackmore said. “Not in a million years would we have ever thought this would happen to us — it can happen to anybody.”
Cancer can happen to anyone, and it’s being diagnosed in children at a higher rate than most people realize.
Becky Chapman Weaver, chief mission officer of the St. Baldrick’s Foundation, said in a press release that studies conducted by the International Agency for Research on Cancer, the specialized cancer agency of the World Health Organization, show that every two minutes a child is diagnosed with cancer worldwide.
“Until now, we have all underestimated just how many kids are affected by cancer,” Weaver said in 2016. “We must continue to invest in cures for all childhood cancers.”
St. Baldrick’s has helped raise about $234 million for lifesaving childhood cancer research since 2005, its site reads. Tracey and Josh Blackmore discovered the foundation while they researched various organizations and liked the way St. Baldrick’s helped fund adolescent cancer research.
The couple started a “Be Brooks Brave Fund” through the foundation to raise money to allocate toward the research of high-grade gliomas. Since the fund was created in 2016, $132,350 has been raised. The fund was created “so no other family will hear the words, “there is no cure,” it reads on the fund’s online page.
St. Baldrick’s noticed the Blackmore’s commitment and passion and asked if they’d want their son to serve as a 2018 Ambassador.
“I just broke down crying,” Tracey Blackmore said. “It’s just such an amazing way for (Brooks’) story to still be told and for him to be remembered. At the same time, he’s helping so many other children.”
Work to be done
The Blackmore and Vescelus families had met once -- at a fundraising event -- prior to their D.C. trip that took place April 22-24.
They reconnected in the office of Congresswoman Susan W. Brooks, who represents the 5th District of Indiana, along with two other Indiana families to share their stories with their representative and encourage her to support the STAR Act. They also met with Indiana Senators Joe Donnelly and Todd Young during their time in the nation’s capital.
“They were incredibly helpful in being an advocate and sharing their stories on how important the bill is. It was a very powerful meeting,” said Susan Brooks. “It has a significant impact when people share with us the importance of a piece of legislation … Childhood cancers are different than adult cancers, and we are trying to put additional focus in our country on expanding opportunities for childhood cancer research.”
The Coalition Against Childhood Cancer reports just four percent of federal funding for cancer research goes to childhood cancer. Research also shows that by 2020, the population of childhood cancers survivors is expected to be 500,000 individuals.
Surviving doesn’t mean it’s smooth sailing. Matthias Vescelus is at risk for other cancers, both from his treatments and genetic condition, his mother said. He’s closely monitored, with frequent blood draws and MRIs that make him sick.
“We get a lot of testing done, and that’s because they don't really know what they’re looking for,” Katie Vescelus said. “They lack a lot of cooperative research. They know that he’s at risk for stuff, but they don’t have anything narrowed down … Wouldn’t it be nicer if we had a better understanding of what we are looking for and better data from all over the world?”
Katie Vescelus is optimistic the STAR Act will help.
Specifically, the bill will, among other items:
Authorize $30 million a year through fiscal year 2023 for grants to support the National Childhood Cancer Registry.
Authorize the National Cancer Institute (NCI) to make awards to support childhood cancer biorepositories available to health care professionals and scientific researchers.
Authorize the CDC to award grants to state cancer registries to enhance and expand infrastructure to track the epidemiology of cancer in children.
Require at least one individual with experience in pediatric oncology to be included on the National Cancer Advisory Board.
Require the Director of National Institutes of Health (NIH) to ensure that childhood cancer research projects conducted or supported by NIH are included in the appropriate reports to Congress.
Allow the Secretary of Health and Human Services to make grants establishing pilot programs to develop, study, or evaluate model systems to improve the quality and efficiency of care for childhood cancer survivors.
Allow the NIH Director to make grants to entities to conduct or support research relating to pediatric cancer survivors.
In short, the STAR Act will allow for better research, access to life-saving treatments and maximize the quality of life of childhood cancer survivor.
There’s still work to be done, however. The measure has been enacted but it still needs funding, which was the reason a previous version of the bill failed on its first attempt in 2017.
“Without the funding, then all of these efforts were for nothing,” said Katie Vescelus.
Susan Brooks anticipates the STAR Act will be funded.
“I will certainly advocate for it,” she said. “I think the STAR Act has been incredibly well received … and I believe there will be strong motivation to authorize it at the full level.”
The United States House Committee on Appropriations’ decision on whether to support the bill could come at any time, Susan Brooks said, as the committee is currently deciding on funding decisions for the upcoming fiscal year, which starts Oct. 1.
The public can help the cause by writing their government officials through St. Baldrick’s website, www.stbaldricks.org, and encourage them to support the STAR Act.
“We were so proud to be a part of (the group) supporting the efforts toward this,” said Tracey Blackmore. “I never thought that I would be on Capitol Hill, advocating for childhood cancer and telling Brooks’ story … To be a part of that is an honor. This really is a big step for childhood cancer.”