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Benjamin Davis and Valerie Wilkerson with their son Benjamin Jr.
Macclenny’s Valerie Wilkerson and Benjamin Davis, both in their early 20s, are devoted to their children.
Daughter Madison, 6, attends the PreK Center. her brother, Benjamin Jr., 5, wants to be a firefighter when he grows up and has been looking forward to starting at the PreK this fall.
Rhabda Myo Sarcoma [RMS] is a rare form of childhood cancer with only about 250 cases diagnosed in the US each year. Benjamin Jr., is one of those cases.
The cancer is an anomaly. there is no genetic or environmental cause and it strikes its unlucky victims at random. RMS is fast growing, aggressive and only afflicts children under the age of 18. And even if treated, it has a tendency to recur.
The area of the body it colonizes is random as well. It often targets the skeletal system, the lungs or the brain.
in Benjamin’s case, it struck his sinus cavities, nearly cutting off his oxygen supply before surgical removal of a large cancerous polyp that attacked his left nasal cavity and invaded his throat.
At the moment, young Ben seems quite normal for a boy his age. He’s quiet, but playful and happy-go-lucky, even if a little reserved.
That is because he’s been through a lot since his diagnosis March 11.
Chemotherapy, which he is facing for up to two years, has begun and will be a weekly regimen.
He already has a port in his chest for the chemo. soon, he’ll undergo another surgery to plant three metal screws in his head that will aid in aiming radiation to as specific an area as possible.
Benjamin calls the port his “hill” and doesn’t hesitate to flip up his shirt to show it off.
“He’ll be getting a feeding tube soon, as well,” said Ms. Wilkerson during a recent interview. “The radiation is hard on the tissues of the throat and eating is going to be painful. It’s being put in as a preventive measure.”
How it all happened
In early March, Benjamin got a runny nose and sore throat at the start of a weekend. since all kids get their share of colds, his parents didn’t become alarmed until he began breaking out in a rash. they decided to take him to the ER at Fraser Hospital.
The diagnosis was strep throat with a double ear infection and the youngster was sent home with antibiotics.
As the week proceeded, Benjamin didn’t improve. He developed a serious cough. His breathing became ragged, loud and laborious, especially at night when he slept.
His parent’s became increasingly alarmed, especially when they noticed he sometimes seemed to stop breathing.
“We would actually shake him to make him inhale,” said mr. Davis. “It was really scary.”
Young Ben knew something in his nose wasn’t right. He even tried pushing some wadded toilet paper up his nostril, trying to get “it” out. Ms. Wilkerson began looking closely at the interior of her son’s nose. She alerted mr. Davis and they could see something in it, but there was infection and blackened, dried blood.
“What we saw, but didn’t understand, was the end of the polyp which had begun to grow out of his nose,” said Ms. Wilkerson.
The couple returned to Fraser.
This time a doctor there realized their son had a nasal polyp extending into his throat and advised them to see a specialist. The following morning they made an appointment with an ear, nose and throat doctor in Jacksonville but the quickest they could be seen would be thecoming Friday, days away.
The couple didn’t wait for the specialist appointment. they took their son to the ER at Wolfson’s Children’s hospital in Jacksonville.
Benjamin was struggling so loudly to get his breath, the nurses could hear him out in their work station. Once his vital signs were recorded, it was discovered the child’s blood oxygen level had fallen to a dangerously low level.
“One hundred is about normal,” said Ms. Wilkerson. “Benjamin’s oxygen level was 52.”
He was admitted to the hospital and a CT scan revealed all sinus cavities and the areas behind his ears filled with infection. Surgery to remove the polyp was scheduled immediately. The ENT doctor at the hospital cautioned the anxious parents.
“I don’t want to alarm you unnecessarily,” he told them. “This could be just a polyp, but it could also be a tumor or worse, cancerous. we won’t know for sure until the tissue can be biopsied.”
The procedure went smoothly and the surgeon removed as much of the polyp as was possible at that time. To keep the affected nasal cavity open, an inflatable balloon was temporarily inserted.
Improvement was immediate. Oxygen levels came back to normal. The little boy relaxed and slept restfully.
“His breathing was so much better,” said grandmother Linda Davis. “The child actually slept after the surgery with his mouth closed.”
Mr. Davis was proud of his little man.
“He was in such bad shape but he was such a trooper. He didn’t complain,” he said.
“He woke up ready to eat too,” added Ms. Wilkerson. “He asked for macaroni and cheese and junior bacon cheeseburgers. He ate three of them at one sitting.”
Benjamin soon sat up in bed and busied himself with crayons and his coloring book, much to his family’s relief.
Daunting recovery ahead
That relief was brief, as it turned out. The news from the biopsy was very bad: the polyp was cancerous.
The parents were given a book on the nature of Benjamin’s rare condition to help them understand the nature of what they were dealing with.
Treatment would include aggressive chemo and radiation and there were no guarantees.
It was a mixed blessing, the surgeon told them, that Benjamin’s cancer showed up in his sinus cavities with symptoms like that of a respiratory and throat infection.if it had settled in his bones, there may have been no sign and they might not have known until it was much too late to do anything at all, he told them.
Still, the location is precarious. A second surgery is in the near future to try to remove even more of the cancer. Benjamin could suffer compromised vision, loss of sense of smell, even brain function. IQ tests are part of his treatment to track his cognitive function.
The couple has been on a downhill run of emotions — from shock and horror, to fright and fear to outright anger at what has happened to their child.
But, there has been no choice but to dig in and get ready for the long haul. Ms. Wilkerson left her job to devote all her time to her son’s needs. one immediate challenge is Benjamin’s immune system, which is compromised. The couple is trying to do as much with him as possible before the radiation starts.
They go to the beach, where he loves to swim and play with his trucks in the sand. after chemo this Wednesday they hope he’ll feel good enough to join his sister Madison on her PreK field trip to the Jacksonville Zoo.
She realizes what happened to her little boy is no one’s fault, just the bad luck of the draw.
And the doctors and surgeons at Wolfson’s have been outstanding. but she continues to be bothered by one fact.
“The doctors at Wolfson showed me the condition of his throat before the first surgery and that polyp was the size of a golf ball,” she said. “It was so big it was cutting off his air supply. It even caused his uvula (the tiny, free-hanging lobe of skin in back of the upper throat) to erupt. you couldn’t miss it and it doesn’t make sense that it could be mistaken for strep throat. I just don’t understand that at all.”
She hates to think of what might have happened to Benjamin if they had simply given him antibiotics and waited for the follow-up doctor’s visit.
The young couple is grateful for all the support they’ve received so far from family, friends, their pastor and New Hope Church. Donation jars are out at businesses around the community and all money goes into a Vystar account.
“It’s really helped us with travel expenses. We’re back and forth to Jacksonville all the time now,” said Ms. Wilkerson. “I’ve had to give up my job for the present and I don’t know how we’d be doing this if it wasn’t for the donations. And thank God for my mother, and mother-in-law.”
Family members have even started their own cookie campaign to help. “Cookies for Benjamin” are baked homemade and sold to friends and co-workers.
The cookies have been a hit. Little Benjamin’s favorite football team is the Florida State University Seminoles. The cellophane bags of cookies are decorated in the team colors.Family members and friends are also working behind the scenes to help organize local fund raisers which should take place in the near future.
“The only thing harder than coping when something like this happens to your grandchild, is seeing what it’s doing to your own children and how hard it is for them to see their little one suffer,” said mrs. Davis.