Family refuses to give up faith during boy’s struggle with rare genetic blood disease
Written by Susan Acker
Like most two-year-olds, Silas Cameron enjoys his mother singing to him while they cuddle. But Silas isn’t your typical child—he has defied incredible odds to survive from a rare blood disorder that almost took his life.
Silas has hemophagocytic lymphohistiocytosis (HLH), a rare genetic blood disease. It is a potentially fatal disease of normal but overactive histiocytes and lymphocytes that typically appears in infancy—but has been seen in all age groups—and can manifest as fever, jaundice and rash.
Jen and Jon Cameron of Newport News know how fatal HLH can be. Almost five years ago, they lost their son Carter to the disease when he was just 15 months old.
Like Carter, Silas started showing signs of the disease when he developed an ear infection in February 2011. He was 17 months old. He started vomiting and having other symptoms not normally associated with an ear infection. For Jen, it was a repeat of what she experienced days before Carter died. She and her husband called 911. When the ambulance drivers said they could not take them to Children’s Hospital of The King’s Daughters, where Carter was treated prior to his death, they drove Silas there themselves.
“They weren’t authorized because he was apparently not in distress,” says Jen.However, soon after they were admitted to the hospital, Silas’ organs began to shut down.
“He was given a 10 to 15 percent of survival,” says Jen.
Silas was put on dialysis and a ventilator, and stayed at CHKD for four months before he was allowed to go home. The attack on his body left him with brain injury. Jen prefers the word injury over damage because “injury means it can heal.”
A bone marrow transplant was ordered to treat the disease, and Silas’ nine-year-old sister, Hailey, turned out to be a match. Silas’ only requirement was to be sitting up on his own and playing—a milestone he has yet to reach.
Now the disease seems to be in an unexplained remission. Several recent tests have been unable to detect it.
Though he cannot sit up on his own, he can make some sounds via a speaker valve. He responds to recorded books, especially ones with duck sounds, and enjoys playing with toys that make sounds. He can track with his eyes. Jen says he has made some connections that he didn’t have before. It seems like visual things please him now, too, such as a collage of pictures that makes him smile. This is progress for a child who could not even smile several months ago.
The Camerons’ play room currently functions as a sort of hospital bedroom for Silas, complete with a children’s hospital bed and other equipment. The wall next to the bed has several pages of instructions for the many evening nurses who come in to care for him so his family can sleep.
He frequently needs medical attention, such as suction of his various valves, and works with physical therapists. Jen is constantly doing research into possible treatments. One exercise she found required the physical therapist, the occupational therapist and her. Lying on his stomach, she moves his head from side to side while the therapists move his bent legs and arms.
“It is to simulate crawling,” she says.
Despite what others may consider challenges, Jen calls herself blessed.
“I am blessed to have people who brought us dinners when Silas was in the hospital. I am blessed because of people who are willing to take Hailey on outings. I am blessed for all this medical equipment that we got; we could never have afforded [it], but got it for free. I am blessed for the people who organized fundraisers and I am blessed for all the prayers from people who care,” she says.
Jen admits she has her rough days. She has become the main caretaker to Silas. A former teacher at Hampton Christian School, it interrupted her part-time career of writing homeschooling material.
Last Christmas, a group called Secret Santas filled the family’s Christmas stockings with goodies, because Silas’ condition made it hard for them to go Christmas shopping. Jen grieved at the time because she was not the one who filled Silas’ stocking and he was not the one to pull it down and empty it. But he was home, and for that she was thankful.
Silas’ dad, Jon, finds it difficult to talk about his son, but his faith is ever present. Earlier this year he nominated Jen for a complimentary makeover and pampering offered by the Hampton Roads Show. In his letter to the show’s producers, he wrote about Jen’s commitment and strength. As a result, she was granted a day of pampering. When Jen appeared on the show, his reaction was, “Shazam, I did not think you could make her more beautiful than she already is.”
He is convinced that her constant care, stimulation and research are helping Silas get better. Even though the disease seems to be in remission, the ability for Silas to walk, run and play is a hope. For the Camerons, it is a daily plea to friends and family for prayer, that Silas’ brain will grow and that neurons will grow around damaged cells. The hope is that Silas will regain the neurological function he lost.
When around Silas, it’s hard to shake the feeling that he senses he is loved. His eyes draw toward sweet talk and it appears he is fighting to get better, just like he fought in the hospital to stay alive. A visit with him gives one a sense of peace, and a hope for his future.