A swab event has been scheduled for Friday in Havelock in the hopes of finding a donor for Justice Disney.
HAVELOCK | Amanda Disney first noticed it in May: Her 1½-year-old son Justice had an odd bruise on his spine.
“It was a weird shape and color bruise,” she said, “but it was just one bruise.”
Doctors seemed unconcerned and they calmed her down: Justice was a healthy, active toddler, they pointed out.
But within a month, Justice would be in intensive care, given chemotherapy, and would find himself in dire need of a bone marrow transplant.
A swab event has been scheduled for Friday in Havelock in the hopes of finding a donor.
Amanda said her son’s case came to a head on June 3 when she was snuggling with him on the couch and felt a lump on his spine.
“It was black, perfectly circular,” she said, “with a nodule.”
She called her husband, Derek, an air frame mechanic on CH-53 helicopters at New River Marine Corps air station, and they got Justice to doctors who discovered a white cell count of 460,000: 7,000 to 12,000 is normal.
Dr. Beng Fuh, a pediatric hematologist-oncologist at Vidant Women and Children’s hospital in Greenville, was contacted and, after examining pictures, said Justice had to be admitted right away.
“We packed a bag and asked how long we would expect to be up there,” Amanda said. “We packed a bag and came up here.” A week turned into several and “we haven’t been home since.”
At Vidant, Justice was placed in ICU for three days as his white count continued to climb to 513,000 before peaking.
“It had penetrated his kidney, spleen and liver,” Amanda said. “Dr. Fuh explained the disease burden was so high it was forming those deposits on his skin.”
Derek’s squadron, Marine Heavy Helicopter Squadron 366, was scheduled for deployment in early June but, he said, the base found someone to fill his spot so he could stay with his son. He was put on PTAD (Permissive Temporary Additional Duty), he said.
“I’m basically allowed to be here at the hospital with the Marine Corps’ permission for a certain set of days. … It’s really a big help. (My unit) helped out a tremendous amount,” he said.
Since June 3, the family of four has resided at the hospital with Amanda nursing their 6-month-old daughter Annabelle and the parents sleeping on an inflatable mattress.
They have access to the Ronald McDonald House, where she does laundry, she said, but they sleep in his room instead.
“If Justice were older and he were able to understand we were just leaving for the night, we would be more comfortable about leaving,” she said. “But for now we didn’t want to be too far away. And outside the room is too far away.”
She said that Justice has good days and bad days, but the good are “few and far between. … In the beginning he was my happy little boy, still trying to play,” she said. But his sickness and the treatment for it have taken their toll. “The steroids he was on the first 30 days (caused him to) gain a lot of weight.” This and the muscle atrophy of so much bed time have resulted in him having trouble doing simple things like walking or sitting up or lying back on his own.
She said the doctors allow him to be off his fluids from 2 to 6 p.m. each day so he can get exercise and play.
The family attempts some form of normalcy, such as eating together and taking time to watch TV and play games. Family has helped, with her mother staying at their Hubert home, and friends they’ve made in the area, particularly in Cherry Point where Derek was stationed before his move to New River, have come through in big ways.
She said they are especially thankful to the hospital staff who have come to know them and the different organizations that have helped them such as Riley’s Army, a local group that provides many of their meals. The Ronald McDonald house, she said, “They’ve been huge.” So, both parents say, has the Marine Corps.
“Lots of times things spiral and they come out of our hands,” she said, “but with lots of faith and prayer we get through.”
One of her close friends, Ashlee Arredondo of Havelock, has helped her, and Be The Match, a national organization that helps match bone marrow donors and patients, set up Friday’s event.
She said that it is highly unlikely she or her husband are qualified donors. Annabelle has a one-in-four chance of being a donor, but at 6 months old, many doctors feel she is too young.
Strangers, oddly enough, have a better chance at being donors.
The Swab Event is set at Fidget, 318 U.S. 70 West, in Havelock on Friday from 3 to 7 p.m., and donors ages 18 to 44 are sought. At the event, volunteers have the inside of their cheeks swabbed and they are added to a national registry accessible to other patients. The process takes less than 15 minutes.
If a donation is made, the donor is put under anesthesia and the marrow extracted from their hip bone.
The Disneys hope their son will be released from the hospital before the event and, if his immune system can handle it, he and they will attend. If not, at least one parent and Annabelle will be there, Amanda said.
Friday’s Swab Event also will benefit Thor Forte, a 5-year-old sickle cell anemia patient in Havelock who has been on a waiting list for bone marrow.