“You personalize it and you hug your family a little bit tighter. You can’t even put it into words. Our hearts break for this family and what they’re going through right now.”
Neesha Nicklaus is a co-worker of Robbie Roche at McLaren Health Care. She and Melissa Mickowski are a part of a team of people coordinating the River Runs Strong 5K on October 13.
River Roche, 2, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in late July.
“We’re trying to do as much as we can for the family,” said Melissa. “(We want to) bring awareness to DIPG and just make them feel like they’re not standing alone in this journey.”
Seeking Quality of Life
When Robbie and his wife, Alicia, were delivered the devastating news that their daughter had DIPG, they were offered the current “standard of care,” which is six weeks of radiation treatment.
While radiation treatment can shrink the size of the tumor, it isn’t meant to cure, only prolong life. So Robbie and Alicia opted not to go ahead with it.
“She’s still developing and they would have to sedate her every single time because she would move around too much during the treatment,” Alicia told the Times Herald.
“So we opted against that. It doesn’t really align with our values and the prognosis for children that have DIPG and go through radiation is still, they told us, six months to a year. That’s still in and out of the hospital and quality of life also comes into play.”
The Roche family has pursued alternative treatments for River while focusing on making memories and trying to be as “normal” as possible. They spend time at the beach, River watches her favorite movies, “Moana” and “Trolls,” and she plays with her little brother, Atlas.
“It’s been good to go to the beach and not talk about research and cancer,” said John Roche, Robbie’s dad.
River Runs Strong
As the Roche family focuses on each other, their community is fundraising and planning events to help as much as they can.
“Our primary goal is fundraising to support them financially because he is going to have lost work,” said Melissa. “We also want to bring community awareness. We have two little kids, unfortunately, in our small town that have DIPG.
“We’d like to get those families together at our event so they can meet each other and support each other.”
The other child in the community with DIPG is 4-year-old Olivia Marks, who attended the 5th Annual RunTough for ChadTough event in Saline. Olivia participated in pulling the fire horn to start the race.
“We want to make both families feel like they are supported in their journey and they’re not walking alone,” said Melissa.
How You Can Help
The River Runs Strong 5K will take place on Saturday, Oct. 13 at 9 am in Port Huron. Participants can register online.
You can also learn more about River’s story on Facebook at Raising For River.