It's Frustrating': Parents of 6-Year-Old With Rare Cancer Agonize Over Health Care Decision After Getting the Obamacare Letter No One Wants to Get

Five months ago, Paul Porter's 6-year-old daughter was playing outside on a slide. Later that night while sitting on the couch she complained of a stomach ache. Life changed forever.

Fast forward to present day. Ellie Porter has undergone major surgery, rounds of radiation and chemotherapy -- and there's more to come for the girl that likes to wear flowered headbands.

But the difficulty didn't end there for the Salt Lake City, Utah, family that has helped their daughter battle cancer for the latter half of this year. In late November, they received a notice regarding their insurance. Porter, a dentist who chose his own insurance, was told his coverage no longer qualified as an acceptable plan under the Affordable Care Act.

Paul Porter, a dentist who paid for his family's insurance out of pocket, recently received a notice that his plan was no longer fitting under the Affordable Care Act. His daughter, Ellie, is in the middle of treatment for a rare cancer. (Photo credit: Paul Porter)

From stomach ache to cancer

So how does a little girl go from a healthy, playful 6-year-old with steely green-blue eyes to a little girl who has lost her hair and is dealing with the painful side effects of chemotherapy?

Porter recalled coming home from work to find his daughter on the couch. Learning of her stomach ache, he started feeling around her appendix area.

"I could feel a mass in her stomach," he told TheBlaze in a phone interview. "You couldn't see it protruding, but I could feel a hard mass."

At that point, Porter thought it was still her appendix. Ellie was taken to the emergency room and doctors agreed that could be the case, but her symptoms were not severe enough to merit immediate surgery. They sent the Porters home.

[sharequote align="center"]"It's another thing to the whole experience you wish you didn’t have to go though."[/sharequote]

They came back later that night after Ellie continued complaining of the pain. They insisted on an ultrasound and got one. That's when they diagnosed the mass as a tumor on her kidney. Initially, the doctor's thought it might have ruptured, but fortunately when the tumor was removed on Aug. 2, it was intact.

Ellie Porter is suffering through cancer treatment at just 6 years old while her parents are having to decide what insurance plan will best serve their family. (Photo credit: Paul Porter)

Ellie began radiation for clear-cell sarcoma, but on her last day of treatment, doctor's told Porter they had new analysis from her tumor and found the cancer was high-grade undifferentiated sarcoma, a very rare form of childhood cancer.

Porter said doctors could only point to 10 documented cases of similar tumors in published literature.

Based on its high-grade nature and how the tumor looked, Ellie's treatment was changed to one her father said is four times more aggressive against the disease.

"Now she’s handling it really well," Porter said of the difficult situation. "It has definitely been hard, no doubt. The side effects from chemo are scary, not fun at all."

He explained that a neurotoxicity that results from the chemotherapy can cause Ellie to hallucinate. It could also lead her into a coma or death, which are his greater fears.

"When she feels good though, she’s up and at ‘em, playing and being herself," Porter said. "It's a huge adjustment for a kid to all the sudden have to go through treatment like that."

The insurance decision

Among all the other things weighing on the minds of Ellie's parents, Porter said he received a notice from Humana that he has until Dec. 15 to make a decision about what he would like to do with his insurance.

The well-publicized quote from President Barack Obama that "if you like your plan, you can keep it," which has been turned on its head in recent months as provisions of the Affordable Care Act law have disqualified insurance that many had liked, is exactly what got Porter.

Porter has until mid-month to choose from three options, deciding what's best for his family and his little girl in the middle of treatment. He could:

1) Keep his current insurance for the next year under the extension that arose from "if you like your plan, you can keep it" outrage;

2) Switch to a compliant plan; or

3) Seek out insurance under the Affordable Care Act.

And Porter did like his insurance, but since the passage of the Affordable Care Act, he's been worried.

"I was nervous when this all hit because we’ve been a healthy family. We've never had to use our insurance before," he said.

When Porter signed up for insurance, he said he picked a plan they could afford "that would cover us if something catastrophic happened." And their catastrophic did happen.

"It's frustrating. We're right in middle of treatment with our daughter and now have to worry about which way we were going to go," he said, noting that he's hired someone to help them weed through the decisions that have to be made in an amount of time he finds wholly inadequate.

Porter worries he'll have to pay a high price for coverage on any new plan because of his daughter’s condition. And it's not just her treatment: the actual chemo is only one step on the road of years of tests and check-ups that will be required to monitor her condition afterward.

Under their current insurance, Porter said Ellie's treatment was a "stretch but manageable." Now, he said he's "back to we don't know."

Porter said the premiums are almost double than their previous plan.

KSL-TV reported Jason Stevenson, communications director with Utah Health Policy Project, said most families in a position like the Porters could potentially find a better coverage option under Obamacare.

"Generally folks with cancer, with pre-existing conditions, are finding both their rates much more affordable and finding their options more widespread," Stevenson told the news station.

But to Porter, "it's another thing to the whole experience you wish you didn’t have to go though."

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