Ashtyn Carrier, a one-in-a-million child, is home in Detroit Lakes after treatment
BY PAULA QUAM
Little Ashtyn Carrier bounces around her kitchen being a little silly and worrying about a spider she saw.
If you didn't know her before she got sick, you would think she was like any other 8-year old.
If you did, you'd maybe notice a strength in her eyes she wouldn't have had reason to have a year ago.
"I feel good," she smiles.
Ashtyn and her family are home in Detroit Lakes after just over a year battling a very rare immune disorder called Hemophagocytic Lymphohistiocytosis (HLH), which rolls off the tongues of Ashtyn's parents like nothing.
It's the disease that had Ashtyn fighting for her life and her family fighting along with her.
Red flags started to pop up when Ashtyn was just a baby.
"She'd get these high fevers out of the blue," recalls her mother, Kelly, "and when she'd get sick it would take her two or three weeks to get better."
Numerous emergency room visits and a bout of arthritis-like stiffness had the family down to Mayo Clinic when she was 3 years old.
Her rare disease went undetected and the Carriers carried on with life with numerous sick days and unanswered questions plaguing them.
"We knew it was something with her immune system because every time she went somewhere where there were a lot of people and germs it was like clockwork -- she'd get sick," Ashtyn's father, Matt, said.
Several doctors from different hospitals conducted countless tests on Ashtyn, including genetic, allergy, and infectious diseases.
Doctors in Fargo called her their "mystery patient," but the mystery would soon be solved after Ashtyn took a turn for the worse last April 2.
"She had a fever, was lethargic, had a bloody nose..." said Matt Carrier.
One more misdiagnoses and 10 days later, Ashtyn's liver failed, and she was immediately life-flighted to Mayo Clinic.
That's when Ashtyn was told she had HLH, a diagnoses that literally made her one in a million -- one out of 1.2 million children to be exact.
The Carriers finally had their answer.
"It just wasn't a good one," said Kelly Carrier.
"Basically when she gets sick with something, her white blood cells fight it off like everybody else's," explained Matt Carrier, "but once the cells kill the illness, they don't stop. They keep attacking like soldiers that don't know the war is over, and so they start attacking her organs."
So while all her first grade classmates were going on end of the year fieldtrips, Ashtyn was going to chemotherapy, first at Mayo, then in Fargo.
Although HLH is not cancer, its treatment is similar.
Steroids and other medications caused the once slight-framed little girl to double in size and the chemo had her nearly bald.
"That was really tough to see her go through that," said her parents.
A month of chemo wasn't cutting it for Ashtyn though, and baffled doctors suggested the Carriers move on.
So they did ... to Cincinnati Children's Hospital, one of the highest ranked in the nation and where the one and only American doctor who specialized in HLH worked.
The family of six (Ashtyn has three younger siblings, Ethan, Mason and Kaitlyn) fit as much as they could into their suburban and moved to Cincinnati.
"We weren't going to be split up," said Matt Carrier, who is a financial advisor, "so thankfully my clients stuck with me and I just worked from there."
Those loyal hometown clients made it financially possible for the Carrier family to stay together, as they rented a small Cincinnati townhouse for their big family.
Another huge show of support came as friends and family traveled to Ohio in shifts to help care for the younger three, while Ashtyn's doctors dug into her disease.
"This place was like ground zero for children's health care," said Matt, as he talked of all the children on Ashtyn's floor who suffered from other rare, and often deadly diseases.
The Carriers were told Ashtyn would need a bone marrow transplant, and fast.
"If HLH isn't treated right away, it's fatal," said Matt Carrier.
But although Ashtyn's little brother Ethan was a match, he could not be her donor.
"Because the doctors didn't know whether or not he had HLH too -- they hadn't found the gene that caused it in Ashtyn, so unless something triggers it in the other kids, we won't know if they have it or not."
Out of 9 million people on the bone marrow registry, Ashtyn's options were whittled down to three.
Her donor ended being a 26-year old male, and on August 6, 2010 she got her life-saving transplant.
"That was scary," said Ashtyn, "I had lots of things hooked up to me."
The chemo wiped out her immune system, so when the new stem cells were planted into her, they produced new white blood cells, which should then cure the HLH.
"And it worked," said Kelly Carrier, "she's blown through this perfectly and has had no complications so far."
The reason for the "so far" is because Ashtyn still runs a risk of complications from a weak immune system (it takes two years for it to build up), or there is a small chance her old cells could overtake the new ones.
The Carriers stayed in Cincinnati throughout the winter so they could be close to the specialists there.
They kept themselves in isolation, with the exception of incoming nurses, physical therapists and tutors.
"Ashtyn and Ethan's teachers back in DL sent all the homework books and curriculum to them, so whatever academics their classmates were doing back home, Ashtyn and Ethan were doing too, so they never fell behind," said Matt Carrier.
In fact, during their time away, the Detroit Lakes Community never forgot the Carriers, as the Roosevelt students raised money for a laptop for Ashtyn and benefits were held to offset hospital bills.
"Those were about $1.8 million for last year and so far this year about a half a million," said Matt Carrier, who said insurance paid everything but $8,000 last year.
Now, the Carriers are back in their home by Pickerel Lake, still keeping themselves in partial isolation until they get the green flag from doctors.
Ashtyn remains on three different medications, and has to avoid direct sunlight because that can trigger a relapse reaction.
A trip back to Cincinnati in a few weeks will gauge Ashtyn's immune system and determine whether or not she will be back to Roosevelt School next year, which she hopes to do.
"I'm a little nervous though," she smiled, "about people telling me I'm famous."
She is, too.
Not only has Ashtyn captured the hearts of Detroit Lakes residents, but she's a bit of a living legend back in the Cincinnati Hospital.
"All the doctors knew her as being one of the bravest kids they'd seen," said her dad.
Once the dust settles and Ashtyn is fully recovered, the Carriers say they plan to start up some area bone marrow drives.
They say now the only help their family needs is to see others being helped.