Seven-year-old has spent 36 days in hospital and is still without a diagnosis

To help raise money for Josie and her a family, a fundraising event was held last Saturday.Some girls dream of getting a Barbie set for her seventh birthday. But girls don’t envision receiving the gift in a hospital bed.

For Estacada's Josie Jett, that nightmare became a reality during a stretch in which she spent 36 days in the hospital for an illness that doctors and specialists haven’t been able to pinpoint yet.

The problem began in mid-July when Josie’s father, Scott, noticed what looked like a fleabite on her ankle. The next morning, the sores had spread throughout her body — including on her chest, her back and all over her legs.

“It was very bizarre,” Scott said. “By afternoon, they had doubled in size and she had a really high fever, so we decided to take her in. At the time I wasn’t freaking out because we were thinking it was just an allergic reaction.”by: SUBMITTED PHOTOS - Josie Jett, a 7-year-old from Estacada, has faced a number of medical hardships over the past month and a half.

The moments of positive thinking, however, did not last long.

After hours of tests and blood work, the results were startling. While a normal person’s platelet count is somewhere above 150,000 per microliter of blood, Josie’s was around 1,000.

And the problems didn’t stop there.

The devastatingly low numbers also extended to her red and white blood cell counts, leading the folks at urgent care to recommend she be moved to Legacy Emanuel Medical Center immediately.

“They came out and said we need to take her to Emanuel because she’s really sick,” Scott said. “I was shell shocked. I couldn’t believe what was happening.”

Once in the emergency room, Josie was placed in the intensive care unit, where she began acting delusional. Once she had fluids back into her system and was placed on meds, she was able to snap out of it.

During Josie’s first four nights in ICU, she saw upwards of 15 specialists from throughout the hospital, all trying to explain exactly what the lesions across her body were and what sort of correlation they had to the breakdown of her body.

Despite all of the tests and consultations, an explanation still eluded the doctors.

“The day before this, she was fine and there was nothing wrong with her,” Scott said. “I don’t know how to describe it. I can’t describe the hell we’re going through.”

Finally, after six days of tests, a diagnosis was reached, as it was determined that 7-year-old Josie had Sweet’s Syndrome. The strangest part was that Sweet’s Syndrome is a disease commonly found in women between the age of 30-60.

“That’s not supposed to happen to kids,” Scott said.

With five antibiotics that deal with Sweet’s, doctors began planning for what was next because the worst part of the disease is that it’s typically a prelude to something else — sometimes leukemia.

The doctors believed the problem was likely tied to Josie’s bone marrow, which either was producing blood cells that were subsequently being destroyed, or not producing the cells at all.

For doctors, however, the fact that absolutely nothing was turning up on her bone marrow biopsies, bone scans, MRIs, cat scans or ultrasounds was puzzling.

“We’re putting this kid through all this stuff, and there was nothing that shows a malignancy,” Scott said. “The only thing they did find was five abnormal cells in her bone marrow, but no signs of malignancy.”

After three weeks in the hospital and after showing signs of improvement, Josie returned home. One requirement of going home, however, was the implementation of a feeding tube, as Josie had shrunk to just 38 pounds.

As part of a series of mishaps, the feeding tube they gave her was too large, and eventually it needed to be replaced. Another mishap was the contraction of pyoderma gangrenosum (PG) during a failed biopsy of her ankle sore.

With the help of steroids, Josie’s health had improved, so doctors began weaning her off the steroids. With a decrease from 40mg to 35mg, however, Josie’s ankle lesion exploded, and her fever rose to 103 degrees.

One day later, the fever was up to 105, and Scott and his wife Jenny decided it was time for a second trip to the hospital.

“We got in there, and she looked awful — I can’t even describe it,” Scott said. “Her temperature wouldn’t even register on the thermometer. Now I am freaking out.”

While Scott worried, the fear crept into the minds of the doctors as well, because despite all of their best efforts, no diagnosis had really been attained.

Once again, the doctors did their best to treat the symptoms they saw, and after 10 more days in ICU, Josie once again was released to go back home at the beginning of September.

At the moment, the belief is that Josie might have MDS, or preleukemia, which means her bone marrow isn’t producing what it’s supposed to.

“She had a blood transfusion two weeks ago, and in the cocktail they have her on, she takes some chemo pills,” Scott said. “It’s a very light amount, though. The doctors are all mystified.

“I asked what the survival rate is, and he said about 50 percent. I don’t like 50 percent; I like 90 percent much better.”

To add to the difficulty of the situation, both Scott and Jenny have struggled to find work of late.

Scott had been working, but he got a cataract that left him completely blind in one eye. To make matters worse, Scott was medically uninsured.

The Oregon Health Plan has been a huge help and has offered to put Scott and Jenny on the plan.

For Jenny, a 21-year veteran of the National Guard and an Estacada High School graduate, the work situation hasn’t been much better. While she still works part-time for the military, she was working at Michael’s before being let go because of the time she took off while Josie was in the hospital.

“They didn’t accept my medical leave since I was part-time,” she said. “Now they want specific days, but I can’t guarantee that with (Josie’s) condition.”

Through all of this, Scott and Jenny, along with their two other children, Jessie and Natalie, are in need of some help.

“We were fortunate enough that some family members were able to help us out, and we have some reserve, but that doesn’t last long when we’re headed to Northeast Portland from here every day, let alone the other expenses,” Jenny said. “Everything has been wrapped around that kid, and so we do have some out-of-pocket medical expenses, prescriptions and gas costs.”

Despite the financial issues they’re facing, Jenny and Scott admit that it pales in comparison to the challenge they are facing with Josie.

“The main thing is that day to day we don’t know how she’s going to feel,” Scott said. “We’re just frightened for our daughter’s life.”

For anyone interested in helping, the Jetts have set up accounts at both Key Bank and US Bank. For more information and for updates, check out the Facebook page that Jenny has set up at “For the Jetts.”

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