DL girl fights rare illness
A Detroit Lakes girl has spent the past six months dealing with a very serious, rare ailment that has required her to undergo a bone marrow transplant and spend months in a children's hospital in Cincinnati.
On April 2, Ashtyn Carrier age 7 (now age 8) and then a first-grader at Roosevelt Elementary in Detroit Lakes, developed flu-like symptoms.
A week later, Ashtyn visited the MeritCare clinic in Fargo and was admitted into MeritCare Hospital (now named Sanford Health) for dehydration.
As her condition worsened, a diagnosis could not be found. On April 12, Ashtyn was diagnosed with liver failure and life-flighted to the Mayo Clinic in Rochester.
"That was a terrifying day and our fear was beyond imagination," said her father, Matt Carrier.
Once at Mayo, Ashtyn was stabilized, and on April 14 she was diagnosed with a very serious and rare immune disorder, Hemophagocytic Lymphohistiocytosis.
HLH is often rapidly fatal without immediate diagnosis and treatment.
It afflicts about 1.2 out of every million children under the age of 15, according to the Histiocytosis Association of America.
At the Mayo Clinic, a treatment protocol was quickly implemented, including chemotherapy, steroids, and other immunosuppressive drugs. Though HLH is not a cancer, treatment for HLH is very similar to leukemia.
Ashtyn was released home from Mayo on April 20 with weekly chemotherapy performed at MeritCare in Fargo.
Ashtyn was hospitalized at MeritCare with fever and other symptoms three times over the following month and her condition was not improving.
Her hematologist in Fargo, Dr. Nathan Kobrinsky, became more concerned, and she was then referred to the Cincinnati Children's Hospital in Cincinnati.
"We did our research and agreed this is where we needed to go," Carrier said. "Dr. Filipovich and her team at Cincinnati Children's are world renowned for research and treatment of HLH."
Cincinnati Children's is a very large hospital with over 11,000 employees and is perennially ranked as a top 10 children's hospital in the United States. It is one of only eight children's hospitals in the U.S. to make the U.S. News and World Report 2010 honor roll.
"There is no question Ashtyn is at the right place," her father said.
"On Saturday, May 15, the doctors at Cincinnati Children's told us they wanted to see Ashtyn as soon as possible and that she may need to stay in Cincinnati for six to 12 months," he added.
After Ashtyn was discharged on Monday, May 17 from MeritCare in Fargo, we packed the Suburban for at least a six month stay and said goodbye to family," Carrier said. All six of them, Matt, Kelly, Ashtyn, Ethan (now 6), (Mason, now 4), Kaitlyn (now 15 months) departed for Cincinnati at 5 a.m. the next morning.
They arrived at a hotel in Cincinnati at 11 p.m. that night and met with doctors early the following day.
"In less than 48 hours, our lives were completely turned around," he said.
"Our first day in Cincy was difficult and disheartening. On about three hours sleep, all six of us spent the day at the clinic and were told that there was a 90 percent chance Ashtyn would need a bone marrow transplant. We were also told that it is very likely Ashtyn's HLH is genetic and our other three children may have a risk of developing HLH."
They decided to move to Cincinnati together as a family and return together once Ashtyn was cured.
"We are very fortunate Matt has a career that allowed us to stay together," said Ashtyn's mother, Kelly. "Many families in a similar situation would need to split temporarily." Matt is a self-employed financial planner and owner of the Ameriprise Financial franchise in Detroit Lakes.
"I have had to work remotely and Bob and Bonnie at the office have done an excellent job handling everything," he said. "My clients have been very patient and understanding. My family thanks them for that," he added.
Once in Cincinnati, Ashtyn continued outpatient treatment at least three days a week and it was later determined a bone marrow transplant was needed.
The search for a donor began and Ashtyn underwent significant testing as part of the pre-transplant regimen. Her brother, Ethan, was found to be a perfect match.
A non-related perfect match donor was also found and the doctors chose the non-related donor in case Ethan's cells were also predisposed to the genetic HLH.
Ashtyn was admitted for her bone marrow transplant on July 22.
In preparation for the transplant, her immune system was basically destroyed in preparation for the infusion of new donor cells that would rebuild a new immune system and save her life.
On August 6, Ashtyn received her transplant. The majority of time Ashtyn was in the hospital, she could not leave her room as a precaution against acquiring an illness. Visitors were restricted.
"Family and friends generously came to Cincinnati to care for our other children while we stayed in the hospital with Ashtyn," Matt said.
On Sept. 16, after 57 consecutive days in the hospital, Ashtyn was discharged. Her doctors recommended that she be isolated from her siblings for at least two more months to allow her immune system to strengthen further.
"So after Ashtyn's release, we began renting the neighboring townhouse here in Cincinnati for Ashtyn to live in as a precaution until Thanksgiving weekend," Matt said. "On Thanksgiving weekend we will move into Ashtyn's townhouse and live together under the same roof for the first time since July."
Ashtyn is in second grade and working with a school teacher provided by Cincinnati Children's Hospital.
"Roosevelt School in Detroit Lakes sent Ashtyn her textbooks and has done an outstanding job keeping Ashtyn involved. We are currently homeschooling Ethan as he would be a kindergartener at Roosevelt this year."
Ashtyn should be able to return to Roosevelt as a third-grader the fall of 2011. It will take one to two years after transplant for Ashtyn's immune system to gain full strength, and her doctors have advised that Ashtyn not return to school until next fall.
Currently, Ashtyn has weekly visits to the hospital for blood labs and treatment. She continues to take a long list of medications. Her immune system is still weak and she remains at risk of infection and other complications.
However, Ashtyn's prognosis is very good and without major complications, the family hopes to be able to move back to Detroit Lakes in two to three months.
"We are proud of Ashtyn. As parents, it's an amazing feeling when your hero is your 8-year old daughter. We are also proud of Ethan, Mason, and Kaitlyn. They have all handled this experience extremely well," Matt said. "Ashtyn is very brave and has incredible strength and courage. We can't remember once when she felt sorry for herself or wanted to quit fighting. She has inspired those who have met her or followed her journey."
Ashtyn's story was featured in the Cincinnati Children's Hospital fall newsletter and on the main landing page of the Cincinnati Children's hospital website.
"Even a world-class hospital like this is impressed with Ashtyn," Matt said. "Ashtyn also has a good heart. Ashtyn is not in awe of all her recognition; she has more concern for the other sick children who were in the hospital with her. Many of us could learn to live better through her example.
"We are very thankful Ashtyn is doing well and that we are all together."
The family has received tremendous support and needs to thank many special people: Bev Berg and Grace Lutheran Church in Detroit Lakes for coordinating Ashtyn's very successful benefit and for their love and prayers.
"God has provided us the strength we needed and our trust is in him. We relied deeply on our faith through this challenge," Matt said.
"We also want to thank our family (for holding down the fort and caring for our dog, "Cooper"); friends; Detroit Lakes classmate and friend Sara (Baumgart) Edwards and her husband Darian in Cincinnati for all their help; the doctors, nurses, therapists, and others who have cared so well for Ashtyn; Roosevelt School; Matt's co-workers Bob Bekkerus and Bonnie Helm; Lucky Dog Boarding and Training; Thrivent Financial; State Bank and Trust and many others in the Detroit Lakes community".
"We especially want to thank the generous bone marrow donor who saved Ashtyn's life," he said.