Jacob Knudsen would give anything to be an ordinary college freshman.
He’s resuming classes following winter break at California State University in Long Beach next week — and he’s also in the fight of his life.
“There is something currently in my lung, and there’s a 50-50 chance that it’s cancer,” the “panicked” 18-year-old California native told The Post ahead of diagnostic scans. “I’m willing to bleed, I’m willing to lose limbs, I’m willing to lose organs, I’m willing to do anything just to survive.”
Knudsen was diagnosed with osteosarcoma when he was 12, and has since endured 21 surgeries and countless, grueling rounds of chemotherapy and radiation after tumors were subsequently discovered in his lungs, on a kidney and a lymph node.
“I remember a lot of nights crying,” the teen recalled. “Because I’m thinking, ‘How precious is this life? How beautiful is this life? I never had a girlfriend. I never got to fall in love. I’m going to have to leave my brother behind.’ I don’t want other people to experience this.”
Amid the anxiety over whether illness remains lurking in his body, Knudsen is pushing for the passage of the Mikaela Naylon Give Kids a Chance Act — a bipartisan bill named after his friend, a fellow osteosarcoma patient and advocate who died late last year at 16.
Last month, the bill — designed to allow pediatric cancer patients to participate in clinical trials and to ensure them access to key treatments — passed unanimously in the House.
Shockingly, when the bill moved to the Senate, it was opposed by Sen. Bernie Sanders, who demanded a quid pro quo be attached for the funding of other efforts, such as community health centers.
Branded “evil” by detractors, Sanders was the lone senator to vote against the bill, singlehandedly slowing it from advancing to President Donald Trump’s desk to be signed into law.
It was a blow to Knudsen and the tens of thousands of other pediatric cancer patients suffering across America.
“They feel like they’re dying and nobody’s watching,” Nancy Goodman, executive director of Kids v Cancer, who is championing the new bill, told The Post.
‘How can we say Congress is functioning?’
Goodman and her husband — former US Trade Representative Michael Froman — lost their 10-year-old son, Jacob, to medulloblastoma in 2009.
“The bill would ensure the most innovative, promising pediatric cancer clinical studies are conducted, and it would incentivize companies to develop novel, potentially curative drugs for these kids,” Goodman explained.
She says the bill’s failure to pass in the Senate speaks to the dysfunction crippling contemporary American politics.
“How can we say Congress is functioning if it can’t pass the easiest bill that one can ever imagine?” Goodman asked. “This is a bill that has bipartisan support that saves the lives of children with cancer that costs taxpayers nothing, and yet they can’t pass it.”
The Post has reached out to Sanders for comment.
This month, however, there’s fresh hope that the bill may return to the chamber — and Knudsen and other young cancer patients are begging Sanders to help get it through.
“We need heroes. You have a chance to be a hero,” Knudsen said.
“You do not think about the fact that your child or grandchild could just all of a sudden have a disease, and there’s nothing you can do about it,” he continued. “You would rather die yourself than have them go through that.”
Other patients feel similarly.
“I would probably tell [politicians] to talk to someone [with cancer], just to see what they’re going through,” Anderson Coy, 21, told The Post.
Coy was diagnosed with diffuse intrinsic pontine glioma, a rare type of brain cancer, over the summer. DIPG is classified as a pediatric cancer and had likely been growing in Coy’s brain since his early teens.
Despite a terminal diagnosis, Coy and his mom, JuliAn, are also determined to see the Mikaela Naylon Give Kids a Chance Act signed into law.
“When 16,000 kids under the age of 20 are diagnosed with pediatric cancer every year, and I find out that senators like Bernie Sanders make uneducated decisions to throw extra things into the act that cause it to not get voted through, it’s very upsetting,” JuliAn told The Post. “I’ve raised a son who’s done all the right things in life and didn’t deserve this.”
Heartbreaking setbacks
The Mikaela Naylon Give Kids a Chance Act will open up the possibility of more innovative medicines and clinical trials.
Knudsen has already been a part of two clinical trials during his seven-year cancer battle and says more needs to be done.
At 12, doctors discovered a tumor growing on his femur, leading to a full knee replacement with an internal prosthesis.
The avid baseball and basketball player had to learn to walk again and underwent months of high-dose chemotherapy that caused his hair to fall out and his weight to plummet.
After months in remission, Knudsen was left devastated by the news that a new tumor had been found in his lung.
“We all started panicking and crying on the couch, just falling apart,” the teen recalled, saying his selfless parents have been shattered by his ongoing health battle, featuring five relapses.
Despite spending the ensuing years in and out of the hospital, in a nightmare cycle of fresh hope and subsequent devastation, Knudsen remains remarkably resilient.
He graduated from high school on time and obtained his driver’s license after 10 attempts — a testament to his sheer grit.
Investment in the future
Now in college, he’s using that same dogged determination to help fight for the passage of the Mikaela Naylon Give Kids a Chance Act, calling it an investment in America’s future.
“The sooner we pass acts like this, the more lives we save,” he declared. “How many children have died from cancer? How many of those were the next Albert Einstein that never made it? These kids could solve the world’s problems.”
Coy agrees.
Like Knudsen, he has stared down death, battling through radiation, which has left him with “nausea, fatigue, muscle pain and memory loss.”
Still, he and his mom aren’t giving up hope despite the odds
“As for Anderson’s particular type of pediatric cancer, there’s been no progression in [researching a cure] since the 1960s, and the survival rate is less than 2%,” JuliAn bluntly said, saying it’s proof that the new kid’s cancer bill is of the utmost importance.
“It’s been extremely devastating for our family,” she stated. “But why not Anderson be the person [to] fight this battle and beat it? And so that’s how we’re living lives.”
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