The faces of HLH: Awareness brings life and hope
Published 7:00 am Saturday, September 19, 2015
Nearly every month of the year, awareness is raised for a number of diseases.
During October, most people raise awareness for breast cancer, but the month also commemorates those affected by down syndrome, SIDS, pregnancy and infant loss and domestic violence.
There are many lesser-known causes and one Picayune woman decided to turn her heartbreak into an annual awareness campaign to help others understand the symptoms of a rare disorder known as Histiocytosis or HLH.
Tonya Cialona was waiting in an airport when she heard her grandson had died from HLH.
“I just sat in the airport looking around and thinking I’m not there when my child needs me the most,” Cialona said.
She booked her daughter Brandi a flight home from Cincinnati, who returned with only a clear bag filled with Cade’s pajamas, slippers and a piece of his hair, she said.
It was discovered that Cade’s mom Brandi is a carrier of HLH, but his sister Brianna tested negative, she said.
The Belsome family will soon welcome a baby boy, Kameron, who will be tested immediately for HLH.
According to histio.org, histiocytic disorders occur when there is an over-production of white blood cells, which can lead to organ damage and tumor formation and sometimes death.
From that moment in the airport, Cialona decided not to let this happen to another family and started letting people know about Cade and HLH.
“With HLH, early detection is crucial,” she said. “The red and white blood cells attack each other and internal organs. It can also lay dormant for years.”
September is HLH Awareness month and each year, Cialona has a new proclamation approved by Picayune’s city council. She also began Crusade for Cade. In the winter, Cialona hosts a coat drive at local businesses and schools called “Coats for Cade.” Last year they gave away 200 coats to needy children, she said.
“It’s important to get the word out and get an early diagnosis. If it saves one life, it’s worth it,” said Cialona.
On Apr. 6 2011, Laci Roche gave birth to a healthy 8-pound boy.
However, at 5-weeks of age, Cole broke out in a rash and his temperature spiked to 104 degrees.
Roche brought him to his pediatrician who diagnosed him with an ear infection.
He received a round of antibiotics, but still his symptoms persisted.
“I brought him back to the emergency room and the pediatrician told me to ask for blood work,” Roche said. “I was told that my child was way to young to have blood drawn.”
Roche took Cole to another doctor, who started discussing leukemia and other diseases, which didn’t process in the young mother’s mind at first.
Roche said she has known Cialona for years and knew about what had happened to Cade. She sent her a text message and asked Cialona about the symptoms Cade experienced.
“My heart dropped when Laci texted me that day,” Cialona said. “I told her the first thing she needed to do was ask her doctors to test specifically for HLH.”
Infectious disease specialists were brought in to see Cole and he was administered a spinal tap, Roche said.
At 6-weeks of age, Cole was taken to Children’s Hospital, where he saw a rheumatologist, hematologist and other specialists.
“They knew it was one disease, but were trying to rule out the others before diagnosing him,” Roche said.
Finally, doctors diagnosed Cole with HLH, she said. Immediately he had a port inserted, where he received chemotherapy and other nutrients.
“He was a trooper,” she said. “I didn’t leave his side at all, I was with him 24/7.”
On May 7, 2012, 1-year-old Cole underwent a bone marrow transplant.
“He received cord blood from a non-related donor,” Roche said. “After the transplant, he was in complete isolation for 74 days. When he was discharged, we went back to the clinic every day, the every other day and now it’s once every six months.”
During the first half of his life, Cole couldn’t experience a lot of things, including attending preschool or going to the park, she said.
“His immune system had to be knocked out in order to complete the transplant,” Roche said. “He has a speech delay because he was in the hospital at peak age. He sees a therapist twice a week.”
Cole is now a vibrant 4-year-old attending his first year of preschool and said his mama is his “best friend.”
He also enjoys riding his four-wheeler, watching monster trucks and mud riding.
“I like to get muddy and go to the creek,” Cole said.
Roche said it’s been a struggle, and one she would fight every day.
“Our bond is completely different from what it might have been,” she said. “He doesn’t let anything he’s faced with get him down. He’s been able to grow and make memories. I’m thankful all the time for that person who donated the cord blood. There’s a 10-year “cured” window and the chances of it recurring goes down each year. He is doing phenomenal.”