Family navigates pediatric cancer care and insurance struggles (With VIDEO)
CJ looks like any other baby -- happy and healthy, exploring his surroundings. But CJ is missing his left eye.
He was recently diagnosed with retinoblastoma, a cancer that grows in the retina (a layer of nerve tissue in the back of the eye that senses light and sends images to the brain). The diagnosis required the surgical removal of his left eye, and six rounds of chemotherapy for his right.
Tonight, Burgandy and her mom, Beckie, will drive Beckie's 2004 silver Chrysler Pacifica, pushing 200,000 miles, nearly five hours to
They're hopeful a tumor in CJ's right eye is shrinking. But even if the family is met with the best medical news, they're still left with a number of dilemmas.
The
Also a worry, their medical bills are piling up. Without Medicaid coverage, the family owes more than
----CJ's diagnosis wasn't immediate. When he was born, his left eye was enlarged, but the doctors weren't concerned. The condition, however, worsened as he grew.
No pediatricians are available in
At first, CJ's family traveled to
She then drove CJ to a
The
St. Jude's says if the tumors are contained within the eyes, 95 percent of treated patients can be cured. If left untreated, the cancer can spread all throughout the eye, to the brain, to the bones and to bone marrow.
If treated, many kids with retinoblastoma can retain the use of both eyes. Unfortunately, CJ's left eye had to be surgically removed. His eyelid simply remains closed now, a permanent wink. He'll soon be fitted to receive a prosthetic.
----Dr.
"Pediatric sub-specialists are primarily found in
The
"In addition, the AAP believes that the current distribution of primary care pediatricians is inadequate to meet the needs of children living in rural and other underserved areas," the AAP. org site says. "More primary care pediatricians will be needed in the future because of the increasing number of children who have significant chronic health problems, changes in physician work hours, and implementation of current health reform efforts."
The
Rhodes says a significant part of general pediatric care is well child care -- routine checkups that can be conducted by a number of practitioners, including family practice physicians, physician assistants and nurse practitioners. But with every specialty comes more precise knowledge about a specific population, whether its geriatrics, obstetrics or pediatrics.
----CJ's condition -- bilateral retinoblastoma, meaning tumors were growing on both eyes -- required an emergency surgery at the
His left eye was removed
"We got a call
Nine requests from
"When you're talking about a heart transplant, that's a significant amount of money, even when negotiating for cents on the dollar."
Providers, even in
Rhodes says as a practitioner, he frequently is involved as a mediator between insurance companies and hospitals to try and find a solution for patients in need of care. He says he used to find it hard to comprehend why coverage couldn't be provided.
"The older I get, the more I see of the limited funds we have in
For the upcoming fiscal year, state funds will account for approximately 26 percent of Medicaid dollars spent, while the federal match is 74 percent.
"The federal match is great," Rhodes says. "But the state has to continue to contribute their share."
----Burgandy, 25, is unemployed while she cares for her son, and his 2-year-old sister. Their father is out of the picture. Their grandma, Beckie, is helping the family out a great deal financially -- they're living with her for the time being.
CJ has been covered by Medicaid since he was born. Until his cancer diagnosis, Burgandy said she had no issues with coverage. But ever since, she says the process has been "a constant fight."
"Every day, it's phone call after phone call to doctors and insurance companies when I need to be focusing my full attention on him, and his 2-year-old sister. It's hard trying to explain everything to her and trying to take care of him when you're on the phone all day with insurance companies and doctors trying to figure out where we're going to get this little boy seen."
After his surgery, she found out insurance wasn't going to cover any of his hospital stay in the days leading up to the surgery, nor the cost of the surgery itself.
In email correspondence with
CJ's family heard back
"We have a bill that's six digits," Burgandy says, shuddering at the thought. "Every time I think about it, I want to throw something."
A couple providers unrelated to the Sampson case reached out to
As of last June, the
----During the
The specialist in
"This doctor being willing to stay until CJ finishes his chemo is a blessing," Beckie says.
But they still have a long road ahead -- in traveling for continued medical care, facing the medical bills from
Any time CJ has a fever above 100.3, his doctors have recommended he go immediately to the hospital. With chemotherapy, his immune system is weakened, and he's much more prone to infection.
The family recently received a bill from an
After media coverage from WVVA in mid-May, the Sampsons received a little more than
"It takes a little over
Anyone interested in donating to the medical expense can do so via Go Fund Me -- gofundme.com/padhdt-family-needing-help.
For updates on CJ's health, the family has created a Facebook page called "Prayers for Baby CJ."
-- Email: [email protected] and follow on Twitter @WendyHoldren
___
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