New laws give hope to families touched by unthinkable

Posted at 3:13 PM, Jun 16, 2018
and last updated 2018-06-16 20:05:38-04

A pair of bills President Trump recently signed into law are giving hope to families touched by the unthinkable.

The laws going into effect are investing in childhood cancer research, and giving terminally ill patients a right to try some experimental medications.

Kevin Lyon lost his 17-year-old son Jason to an aggressive and incurable form of brain cancer three years ago. 

"Jay came home from baseball and said 'hey, I saw two baseballs today.' He had double vision, and it started from there," Lyon said. 

Jason was diagnosed with Diffuse Intrinsic Pontine Glioma, which effects 300 children each year. He passed away three months after the diagnosis.

"We’re losing children. Losing our children. Somebody else’s children. Kids," Kevin Lyon said. 

Lyon said a big problem with rare cancer is that there is little research invested because it impacts so few people. He says the recent bills are giving him hope that a cure can come faster.

Otherwise, Lyon said the only money raised for research will be through small fundraisers like the kickball tournament he organized Saturday for eight-year-old Gavin Morales, diagnosed with DIPG in March and given less than a year to live. 

"When Gavin was diagnosed with this particular disease, our whole lives changed," said Gavin's mother, Ashlee Campbell.  

Campbell said her son is a sweet boy who continues to fight hard. 

"Gavin was always the type of kid that will go into the lunchroom and sit with somebody that doesn’t have anybody to sit with," she said. "He’s just a great kid."

Campbell, a nurse, says her family is now focused on improving Gavin's quality of life, not quantity. She says that's what's guiding their decisions on the options to pursue. 

"Hopefully sometime in my lifetime we will find a cure, and no other parent has to lose a child to this unthinkable disease," Campbell said. 

She and Lyon both say they will continue to fight to make that happen.

Earlier this month, President Trump signed what’s called the STAR act, authorizing up to $30 million per year on childhood cancer research. That followed the Right to Try act, which gives terminally ill patients access to some experimental drugs not yet approved by the FDA.