The bottom dropped out of Hunter Rose Jones' very young life after a routine visit to the dentist.
The bottom dropped out of Hunter Rose Jones' very young life after a routine visit to the dentist.
At age 4, she was diagnosed with stage 4 neuroblastoma, a particularly aggressive form of cancer, after a tumor in her tiny jaw was discovered during an appointment to have her teeth cleaned.
Now 5, after undergoing months of treatment that included five rounds of chemo, two stem-cell transplants, 12 rounds of radiation and six rounds of immunotherapy, Hunter Rose is cancer free.
For the moment.
That could change at any time, her parents know too well. For the past three months, they have battled their insurance company to get Hunter Rose into a cancer vaccine trial at Memorial Sloan Kettering, a fight they lost because the trial was considered experimental treatment and therefore not covered by their policy.
This week, thanks to financial aid granted by the renowned cancer clinic, the Joneses arrived in New York City from their home in Washington. There, Hunter Rose will begin a series of injections that will, if successful, drop her chances of relapsing from 35 percent to 10 percent, dad Jay Jones told InsideEdition.com.
Because her type of nerve cell cancer is so fast-growing, Hunter Rose's parents weren't appeased when she recently went into remission. They wanted to do absolutely everything possible to broaden their little girl's chances of living a longer life.
"As of right now, she's cancer free, but we have to have five years of being cancer free" before Hunter Rose is considered cured, her father said.
The parents heard about the Sloan Kettering trial from a conference they attended and from other parents they've come to know who are dealing with children plagued by the same kind of cancer.
They've struggled to cover medical bills and to get by, since both parents aren't working to be able to devote themselves to caring for Hunter Rose and her older brother. They established a GoFundMe account to help. Strangers have stepped forward to ease their financial burden.
The Joneses are eternally grateful.
They are living at the Ronald McDonald House on Manhattan's Upper West Side while Hunter Rose begins her trial treatment. On March 31, the family will travel to Walt Disney World in Florida for a fantasy trip courtesy of the Make-A-Wish Foundation.
"We have been blessed," said mom Kara.
Things have not always seemed that way. Hunter Rose had not a symptom when her jaw tumor was detected. Later, another was found in her abdomen and her hip. She spent 138 days Seattle Children's Hospital. The strong and harsh drugs used to kill her cancer also knocked out some of her hearing. She now wears hearing aids.
"As a mom, it's been really hard," Kara said. Especially when she watches her little girl do things that no little girl should know how to do. "At night, she puts her feeding tube on pause, goes to the bathroom, comes back, puts the feeding tube back in and turns it back on," her mother says.
That just breaks Kara's heart.
But nothing in the past 17 months of pain and anguish has broken Hunter Rose's giant-sized spirit.
In January, when her main protocol treatment ended, the child had not a doubt as to her disease's whereabouts. "She just goes, 'Mom, the cancer's gone,'" her mom said.
Jay Jones says Kara is the mightier parent when it comes to witnessing their child's suffering. "Bless her heart, she's the strong one," he said. "There were so many times I just had to step out of the room because I couldn't stand to see my baby girl in such pain and crying so hard," the father recounted.
Kara says that as a mother, she had no choice. "I had to be there," she said.
And for now, life is good. And the future holds hope.
"She's doing really good," Hunter Rose's dad said. "A lot of families break up over this." But not the Jones clan. They place faith in themselves, and in God. "We're just so lucky," said Jay.
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