Clubs jump in to help boy with cancer
A boy with a rare form of thyroid cancer is one of 27 children from across the world who has been accepted into a trial programme, based in Washington DC (US), for specialised treatment.
Six-year-old Jordan, from Boksburg, was diagnosed with medullary thyroid carcinoma, a form of thyroid cancer, in October.
The Rotary Club of Benoni Aurora and the Benoni Lakes Lions Club joined forces with SA Home Loans, to raise funds for Jordan’s treatment, the costs of which go well beyond the usual.
One of the ’90s Mania shows at the Barnyard Theatre, Emperors Palace, was used as a fund-raiser by the company and organisations.
The entertaining dancers, singers and musicians gave Jordan and his mom, Eileen van Tonder, sitting close to the stage, a night to remember.
The family previously lived in Benoni, after moving from Brentwood Park to Morehill, then to Rynfield, where they lived for about five years.
Jordan’s condition is caused by Multiple Endocrine Neoplasia type 2B (MEN2B), a gene mutation with which he was born.
According to van Tonder, the strand of cancer from which Jordan suffers occurs in three to four per cent of thyroid cancer patients.
“His thyroid gland was removed in an operation on November 6,” said van Tonder.
With the rarity of his diagnosis, comes the fact that there is no treatment in South Africa, forcing Eileen and Jordan to travel to the US for treatment.
“We can import a pill named Vandetanib, but, depending on the exchange rate, the medication will cost us between R45 000 and R50 000 per month,” said van Tonder.
She added that the programme in Washington allowed her to avoid these costs.
Van Tonder and her son flew over for two weeks in January and will return to Washington in July, for more tests.
“I promised him next time we’d go to Disney World,” she said.
“They’re taking us on a compassionate basis, giving us free residence and treatment, we just have to pay for food and plane tickets.”
She said the first trip cost her around R120 000, as she had to take a paramedic along, but she hopes future journeys will cost less.
Van Tonder said she and Jordan will have to go to the US at least twice a year, possibly indefinitely.
“It’s a cancer which grows slowly, but can develop into pheochromocytoma, which could lead to other cancers, but, in January, he tested negative for that,” she added.
“We know there is cancer left, because there’s a mass around the main artery in his neck, which we can’t remove with radiation, because it might damage the artery.
“For now it’s just management, but this will be our lifestyle now, as there could always be other tumours that have to be removed,” Eileen said.
“At the moment, because of the tracheostomy, I can’t leave him alone, he needs someone who knows how to work with the pipes.
“So I can’t work at the moment and we’re very dependent on the public and help from family and friends.
“At first we had a Facebook page and opened a trust fund and got a lot of help from people.
“If it goes big enough, the goal is to help other kids with rare cancers.
“There’s nothing so frustrating as sitting in the hospital, among many kids with cancer and everyone’s getting medication and here you are with your child and there’s absolutely nothing they can do for you.”
Van Tonder expressed her hope for the future.
“I believe in miracles and he’s doing very well,” she said.
“People are always so concerned about the small things in life, then something like this happens, and you learn to appreciate being human again.
“Jordan always says the most important thing is love.”
Jordan’s mother said none of the children with this condition can cry with tears.
“We went to so many doctors, who always laughed it off when I said he cries without any tears,” she explained.
“We are very grateful for all the help from everyone.”
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