Six months ago, Owen van Vuuren was a healthy four-year-old. Then one morning in January he awoke with a squint in his left eye, and later started to lose his balance and have aggressive mood swings.
Owen was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare, highly aggressive and hard-to-treat tumour in the brain stem – and parents Candice Hamman and Carel Jansen van Vuuren said the Covid-19 lockdown played havoc with his treatment.
It was only on the family’s 11th visit to Charlotte Maxeke Academic Hospital in Johannesburg that Owen had his first session of radiation treatment, Hamman said, adding that the others were bedevilled by problems.
“Every time we showed up for Owen’s appointment for radiation therapy we were told there has either been some sort of miscommunication, a general anaesthetist is required and one is not available, or they have a mould problem,” said Hamman.
Between February and March the family said they tried four times to get a CT scan done at Tambo Memorial Hospital in Boksburg but Owen had adverse reactions to sedation.
“We were then forced into the national lockdown and cautioned from attending the hospitals because of Covid-19, so we had to stop all attempts to get a scan. Ultimately we were delayed getting the scan, diagnosis and treatment due to Covid-19,” said Hamman.
She said Owen’s neurologist had told them radiation would eventually become ineffective and Owen would die. But she and Van Vuuren are pinning their hopes on an experimental anti-cancer drug, ONC201, which is in its final testing phase in the US.
Hamman has started a crowdfunding campaign in an attempt to obtain the drug. “There is a mom in America who has said we can have what she had left. We have insisted on paying for the shipping but have been told it’s being held at customs,” she said.
“As for the life extension, we don’t know exactly how long but people that have used [the drug] have added a minimum of a year to their lives.”
Prof Jennifer Geel, a paediatric oncologist at Charlotte Maxeke Hospital, said while the hospital would treat Owen and “support the family every way we can”, so far ONC201 trials had “shown minimal to no efficacy”.
However, “if the mother needs to feel that she has done everything, we will help her in her efforts. As long as there is not an excessive increased cost to the hospital we will administer the drug if it is available.”
Gauteng health department spokesperson Kwara Kekana said some of the factors that delayed Owen’s treatment were failure to arrive for appointments, the fact that he had eaten too recently before anaesthesia, and weight gain, which meant a mould that had been made for him did not fit.
“The mom refused to have the mould done without anaesthesia and said she was waiting for a drug from outside the country,” said Kekana.
“The child had a CT scan done on June 3 and the treatment plan was approved on June 5. A planned five-traction session was agreed, and the patient has completed four tractions and is due for the last session in early July. The treatment of the patient was not delayed by lack of staff or resources.”