'Kirra is forever 10': Families hurt by pediatric cancer join Sen. Martin to fund research in Pa.

Noelle Weinhold spent a lot of time praying that Kirra would get better.

The two girls became best friends at age 4, when both were being treated at Penn State Hershey. Weinhold, now 13 and living in Ephrata, got better within a year of her diagnosis with Wilms tumor, a type of kidney cancer. She’s been cancer-free for seven years.

But Kirra Broadwater’s B-Cell acute lymphoblastic leukemia, a form of blood cancer, was much tougher to treat. It returned four times over seven years, forcing Kirra to spend most of her short life inside a hospital room. She died in 2018 at age 10.

Noelle and Kirra forged an inseparable bond as they spent each week for seven months sitting next to each other in treatment, Noelle remembers. When their little bodies weren’t getting filled with chemotherapy to attack their tumors, the girls bounded the halls of the hospital together.

Kirra and Noelle conspired to prank the nurses with fake emergencies. They raced wheelchairs in the halls. They pretended they were wearing mustaches to ask everyone in sight, “We mustache you a question.” They even colored each other’s skin with red markers to try to convince a nurse they were suffering from a new skin “disease.”

For Noelle, the bond continues as she carries her best friend’s ashes in a vial around her neck.

Noelle said she remembers imploring God as she watched Kirra’s struggle, asking: “Why does my best friend have to go?”

Just before Kirra passed, Noelle said she promised her friend that she’d do everything possible to raise awareness for childhood cancer.

Noelle and other families confronted with a pediatric cancer diagnosis were able to get $9.3 million added to the 2021-22 Pennsylvania budget to fund pediatric cancer research. It’s not a huge amount in the overall war on cancer, which commands billions in federal research dollars annually. But because research on pediatric cancers nets just 4% of what the federal government spends on cancer research annually, it’s not an insignificant amount, either.

One of Lancaster County’s two state senators -- Sen. Scott Martin, R-Martic Township -- played a major role in helping the families secure the funds.

“Those families have been through enough, and to think about, despite their battles, to come in and fight for future kids and future treatments says a lot to me about their character, and I can see why it meant so much to them,” Martin said in a June interview.

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By the Numbers

* Childhood cancers account for only about 1% to 3% of all cancer diagnoses in the U.S. each year, or about 15,000 cases.

* Cancer is the second leading cause of death among children in the U.S., behind deaths caused by accidents.

* Between 1950 and 2019, 47 drugs were approved for pediatric use, according to industry publication OncLive. (In comparison, 83 drugs were approved for treating breast cancer in adults in that same time period.)

* Approximately 75% of children diagnosed with cancer will survive their disease, according to Dr. Stephen Hunger, the director of the Center for Childhood Cancer Research at CHOP.

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The money will be divided among the state’s four childhood cancer research institutes, including Penn State Hershey and the Children’s Hospital of Philadelphia, maxing out at $2.5 million per institution. The money, which comes from the state’s annual tobacco settlement payout, can only be used for pediatric cancer research, Martin added.

Children’s needs differ

Childhood cancers are much more rare than adult cancers, accounting for only about 1% to 3% of all cancer diagnoses in the U.S. each year, or about 15,000 cases. Still, cancer is the second leading cause of death among children in the United States, behind deaths caused by accidents.

Because these cancers affect a relatively small number of patients, pharmaceutical companies have focused most of their drug development resources on finding treatments for more common -- and profitable -- forms of adult cancers, said Dr. Lisa McGregor, a pediatric cancer researcher and doctor at Penn State Cancer Institute in Hershey.

“Children are not your major money maker when it comes to cancer,” McGregor said. “All those [adult] cancers have probably 10 times as many patients. That’s where drug companies are going to make their money, those are the drugs that are in development. That’s just a fact of life.”

With little financial incentive for pharmaceutical companies to develop drugs tailored to childhood cancers, it falls to governments and charitable organizations to fund or encourage this research, McGregor said.

“We don’t give little kids adult cold medicine, yet we’re throwing all these adult chemos at them,” said Jen Krazter, a mom of a cancer survivor in Dauphin County who has worked in advocacy with Weinhold.

Researchers approved eight cancer drugs for pediatric use in the last year, a result of federal incentives for drugmakers to invest in such treatments. This far outpaces the 47 drugs approved for all pediatric cancer patients between 1950 and 2019, according to industry publication OncLive. For comparison, there are 83 approved drugs or therapies to treat one class of cancers -- those affecting breasts in adults -- according to the National Cancer Institute.

Approximately 75% of children diagnosed with cancer will survive their disease, which is a great improvement in survivability, said Dr. Stephen Hunger, the director of the Center for Childhood Cancer Research at CHOP.

“[This] is wonderful, unless your child is one of the 25% of cancers that can’t be cured,” Hunger said. “If they survive their cancer, not all of them survive their treatment.”

Hunger said CHOP -- the No. 1 children’s hospital for cancer care as rated by U.S. News & World Report -- will likely use the money to continue research into cellular immunotherapy. Researchers at CHOP have made strides in treating acute lymphocytic leukemia, an aggressive form of cancer of the white blood cells, with cellular immunotherapy -- a process that reprograms a patient’s own cells to more effectively kill cancer cells, he said. He’d like to see if researchers could translate this strategy into other pediatric cancers.

At Penn State Hershey, McGregor said it hasn’t yet been determined how researchers would use the money, but she’d likely advocate research on the impact of exercise and nutrition on children receiving cancer treatments. Early research, she said, suggests that controlling a child’s diet during treatment can improve how well the therapy works. Additionally, she’d like to see more research into the molecular makeup of tumors when standard therapies don’t work to see if a therapy tailored to that individual’s cancer could be more successful.

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Four Diamond Fund’s impact

Pediatric cancer patients who receive care at Penn State Hershey are supported by the annual student-run dance marathon (THON) and its main beneficiary, the Four Diamonds Fund. The money raised -- $10.6 million in 2021 -- is given to families who need help with health care expenses not covered by insurance.

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The funds secured by Martin are a drop in the bucket compared to the total cost of bringing a new therapy to market, which often costs tens of millions of dollars, according to a 2014 report to the U.S. Department of Health and Human Services.

Still, both McGregor and Hunger said the state investment will help them move toward their goals of finding less toxic treatments and helping kids with cancer eventually lead long, healthy lives.

Lifelong toll of treatment

Noelle remains cancer free, but she faces the long-term effects of her treatment every day.

With so few drugs produced with children in mind, a lot of cancer drugs developed for adults can take a heavier toll on children. Depending on the treatment, a child can experience serious health problems, such as heart disease, neuropathy or loss of fertility, McGregor said.

And what can be worse, in McGregor’s eyes, is that some pediatric cancer patients also experience a much higher risk of developing another form of cancer at some point in their life.

“That is one of the devastating things of childhood cancer,” she said. “For the medical community, it’s heartbreaking that sometimes the treatment we gave is contributing to the next cancer.”

On the fifth anniversary of Noelle being declared cancer-free, she moved into the “survivorship” level of care. She remembers thinking she was walking into a celebration at her doctor’s office. Instead, she was given a list of 12 types of cancers to which she will be vulnerable for the rest of her life.

“They told her, ‘It’s not if, it’s when,’ ” said Sara Weinhold, Noelle’s mom.

Noelle hardly looks like the skin-and-bones photos taken of her when she was 4 and undergoing chemotherapy. She’s a tall 13-year-old who plays soccer and likes to talk about her crush. But Noelle has only been able to attend school for a few years out of her life, with long periods of absences. Two weeks into kindergarten, there was a chicken pox scare. She withdrew from school and was quarantined in Penn State Hershey behind yellow tarps.

“They are legit robbed of their childhood,” Sara Weinhold said of kids like her daughter, who attends a cyberschool after years of being in and out of school.

The ‘Cancer Mamas’

Sara Weinhold got Martin’s attention back in 2016 when he was running for his first term in the state Senate. Martin was riding on the back of a truck in the Ephrata Fair when Weinhold spotted him.

She recognized him from her alma mater, Lancaster Catholic High School, though she didn’t know him in school. Martin said Weinhold almost pulled him off the truck, as he recently recalled the moment in an interview.

“Allegedly,” Weinhold later laughed.

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Securing childhood cancer research funding in Pa.’s budget

The initial proposal: Sen. Scott Martin originally proposed creating a pediatric cancer tax credit, for up to $10 million each year. This would allow corporations to contribute directly to a research institution, instead of paying those dollars in taxes.

What made it in the budget: Caucus leaders came back to Martin with an alternative plan: use $9.3 million of the state’s tobacco settlement to send the money directly to research institutions.

Research institutions will receive these funds for cancer research every year, unless lawmakers decide to remove it from the budget.

“At the end of the day, no matter the source of funds, I just wanted to get the resources they needed as soon as possible,” Martin said.

What’s next: Martin and other cancer families still hope to get a tax credit passed in the future, with the lofty goal that one day researchers in Pennsylvania find a cure for childhood cancer. They will first plan a celebration for their achievements, then begin working on their next pediatric cancer-related legislation.

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Weinhold and other “Cancer Mamas” had been working with a state representative, a Democrat, to get their first pediatric cancer research-related bill through the Legislature. But that lawmaker got caught in a scandal, and Martin quickly stepped in to champion the bill, Weinhold said.

Since then, Martin -- who is considering a gubernatorial bid -- has been the Cancer Mamas’ top advocate in the state Capitol. Before securing the research funds this year, Martin got a donation box added to Department of Transportation license renewal forms and passed a law to allow children with serious illnesses to attend class virtually.

Pennsylvania state budgets are negotiated behind closed doors, which meant Martin wasn’t sure whether the state’s top leaders would agree to the $9.3 million for childhood cancer research until the budget deal was unveiled to rank-and-file lawmakers.

On the other side of the aisle, Rep. Ryan Bizzarro, a childhood cancer survivor, said he was constantly checking in with the Republican majority leader about the research dollars.

“I wish we could do more, but this is a good start,” said Bizzarro, a Democrat whose district is in Erie. “You have no idea how hard this was to get in the budget.”

Sara said she has formed many blisters from walking the stone floors of the state Capitol building. Noelle and other cancer survivors have testified before Senate and House committees, bringing some senators -- known for being harsh -- to tears.

Weinhold counted every day that the Legislature didn’t take up their issue: a whole 554 days. Before the pandemic, the group would knock doors or spend days off at the Capitol building. During the pandemic, they had to change their strategy, bombarding lawmakers on social media, by phone and by email, sending thousands of messages to keep awareness of their issue.

“Desperate times call for desperate measures, and we’re desperate moms,” Sara said.

Jen Kratzer, another advocate whose son Colin was diagnosed with cancer at 16 months old, said it’s usually just her and Sara Weinhold or a small group of parents and children, knocking doors to lawmakers’ Capitol offices. The office staff knows them at this point, she said.

“Whoever knew you could walk into the Capitol and just knock on doors?” said Kratzer, whose background is in social work. “It’s not like we have these big, screaming rallies. We’re not professional lobbyists. We just want to make it so that other families don’t have to go through all the stuff our kids have gone through. We need better treatments for them.”

Noelle Weinhold turned 13 in June. She celebrated entering her teenage years with a party inspired by her favorite TV show, “The Office.”

With an “It is your birthday” banner — a nod to how the show’s quirky, literal character Dwight decorated for a party in one episode — and with Kirra’s parents in attendance, Noelle celebrated the milestone she and her family were never certain would come.

But it was a day she should be celebrating with her best friend -- Kirra. Noelle spent the morning of her birthday crying into her mom’s chest.

“It’s a cluster of emotions; She’s here. We get to celebrate her turning 13,” Sara Weinhold said. “Every milestone of Noelle’s is just a cruel reminder of the milestones Kirra never got to get… another year where Kirra is forever 10."

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Crédito: GILLIAN McGOLDRICK | Staff Writer