Family of Indiana child with cancer hopes to help others

MILTON, Ind. (AP) - Noah Rinehart is several months into remission, but even now, it's hard to say what might come next for the 5-year-old and his family.

Ever since the Rineharts learned their son - who was also born with Down syndrome - had acute lymphoblastic leukemia during a January 2015 doctor's visit, things have been different. In some ways, they've been easier, and in others, far more difficult.

Like most children his age, Noah paid little attention to the conversation taking place during his family's sit-down with The Palladium-Item at their Milton home.

He was too busy introducing himself to the stranger in the living room, hugging various family members, watching cartoons on the television and listening with his brother to music as it played from a tablet. He didn't like the earphones, so those ended up on the floor quickly.

"As a parent, you can't help but ask, 'Why couldn't it have been me, instead?'" his mother, Ida Rinehart, said as she corralled the young child for a moment. "He's a boy, you know ... why did this have to happen to him?"

Expenses and emotions

Noah, given his disability, doesn't yet completely comprehend what's happened to him. That has been both a blessing and a curse, Ida said.

The boy knows he's sick, and he knows he's been getting help, but he doesn't understand the pain associated with the treatments, she said.

"The most difficult part is when he receives his treatments and we have to hold him down to keep him safe," Ida said. "It's excruciating having to see your child suffer like that and to know there's nothing you can do ... to know he's not understanding the reasons for what he's going through."

In the minds of his parents, Noah is on enough medicine to fill a small pharmacy. Three of the primary drugs cost about $5,900, and that's after the insurance kicks in.

Overall, the family is staring down $343,000 in medical bills, and counting, Ida said. But the family doesn't want financial help for themselves. That's something with which they can cope.

"There's no easy way to say it: It's a bad situation," she said. "But there are also people out there who have it worse than we do. We, at least, still have our child. And not every family can say that."

She said while Noah is in remission, which officially began in February 2015, the cancer could still come back.

"I am hopeful that it won't return, but it's always a possibility," she said. "It's a parent's worst nightmare."

Ida said the form of leukemia from which Noah suffers has a 90- to 95-percent survival rate, though she noted she has had several friends lose their children in recent weeks to that and other forms of childhood cancer.

She said most of the people she knows with children who have cancer have been those she's met during the family's trips to the hospital or through online forums and message boards.

"There really isn't an in-person network that I've found for people who are in a situation like ours," she said, adding that having those kinds of groups would make the pain a bit easier to endure. But it wasn't just the lack of a coping network that surprised the Rineharts.

Giving back to families

In their journeys to and from Riley Hospital for Children at IU Health North in Carmel, the family has operated on limited resources, with little if any assistance from the hospital itself.

"There aren't a lot of resources for parents who need food or ways to pay for gas, or things like that," she said. "On Thanksgiving we were in the hospital and there was (no food)."

She said the hospital food isn't bad, but it is expensive and isn't something the family could always rely on as being available. The hospital's restaurant closes just after midnight on weekdays and at 3:30 p.m. on weekends.

Now, Ida and her husband Marlin Sr., want to help families going through similar situations.

Though representatives of Riley could not be reached for this story, Ida said she is hopeful the family will be able to work with the hospital as a pass-through organization to help distribute gift cards for food and gas, as well as other amenities.

The Rineharts have set up a fundraiser on Booster.com, through which they are selling "Noah's Nation" T-shirts to help raise money to pay for these gift cards.

The back of the shirts say "Together we're fighting childhood cancer."

Ida Rinehart said the fundraiser is scheduled to run through Sept. 30, with each shirt costing $20. So far, the campaign has sold six shirts, with a goal of selling 50. Ida said she is planning on continuing the fundraiser intermittently for the next several months.

"Our hope is that families are able to have a (better) experience in trying to get help for their children than what we have," she said. "That's really what I want to do here."

Ida pointed out she didn't have any issues with how the hospital has treated Noah or her family since treatments started a year and a half ago, but felt they need more assistance in their efforts.

"The hospital has been amazing, and the people there do amazing work," Ida said. "For us, the focus of this fundraiser is really to ensure that while these children are getting treated, their parents aren't going without."

She said many families have children who are in isolation and it is often difficult for them to leave their children to go and get food from the cafeteria when it's open or to run out and get food from a nearby fast food chain. A lot of the families can't afford to do that, even if they want to, she added.

Ida said she at times went several days in a row without eating, because vouchers were only distributed every so often and she couldn't afford to leave her child.

Lessening the burden

"A lot of families who need help never want to ask for it," Ida said. "It's a matter of pride for parents; they don't want their children to see them (asking for help). I know, because I was one of them."

Ida said she wants to make things easier on those who need assistance, so they don't feel stigmatized for asking for it.

"It shouldn't be so difficult," she said.

She said there are currently organizations, such as Pinky Swear, which provide families with children suffering from cancer similar resources, but many of the organizations are limited in their resources and can only offer families resources on a limited basis. Representatives of Pinky Swear could not be reached to comment for this story.

Ida said she is hopeful the T-shirts will help her become another one of these care providers for families.

Ida said she believes the things she's learned in dealing with her son's leukemia will pay off as she works to help other parents deal with horrors of their own. She said she is looking forward to continuing to work with the hospital, even as Noah continues his own fight, to make sure other families are receiving the help they need.

"I don't want people to be forced to choose between chemo medicine or paying for food," Ida said. "Because the kids, of course, need that medicine ... but the parents shouldn't have to go without eating."

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Source: (Richmond) Palladium-Item, http://pinews.co/2cDdzWn

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Information from: Palladium-Item, http://www.pal-item.com