Owen’s Story

The hardest fight of our lives.

In March this year, Owen was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare, highly aggressive and difficult to treat brain tumour found in the pons, a major structure in the upper part of the brainstem. It is involved in the control of breathing, communication between different parts of the brain, and sensations such as hearing, taste, and balance.

Unfortunately, like so many other South Africans, the family does not have medical aid and have to rely on the public sector for treatment. But despite numerous trips to several public hospitals, Owen has yet to receive the treatment he so desperately needs.

In mid-January, Candice noticed that Owen’s left eye had starting squinting inwards. Concerned that he may be developing a weak eye, she took him for eye tests and were told that he needed spectacles.
Two weeks later, Owen’s balance became affected and Candice took him to see a doctor in private practice. By March, he was experiencing mood swings and started drooling. Several private doctor visits later, Candice was told that Owen might have intercranial space-occupying lesions, caused by tumours or abscess in the brain. It was recommended that he urgently undergo a brain scan.

“We went to Tambo Memorial Hospital in Boksburg for four weeks in a row attempting to get a scan done, but every time, no matter what, when they tried to sedate him, it had the opposite effect. We even tried sedating him at home and once sedated, putting him into the car and having the hospital on call to be ready for us, but this also did not work,” says Candice,
who is supported through the ordeal by Owen’s dad, Carel Jansen van Vuuren.

The family’s attempts to get help for Owen was thwarted yet again when the country went into lockdown at the end of March due to Covid-19. They were cautioned not to visit the hospital. Once the country moved to lockdown level four, Candice took Owen back to Tambo Memorial Hospital and was given a referral letter for Charlotte Maxeke/Johannesburg Academic Hospital. A brain scan was performed and the neurologist on call insisted that Owen be booked in for observation as he suspected that he might have a tumour. Due to lockdown regulations, the four-year-old had to spend almost a week in hospital without Candice or his brother, Seth (6) being able to visit him. Owen’s illness has had a devastating effect on Seth, says Candice. He is struggling to come to grips with his brother’s condition and when Owen is not home, spends most of the day crying.

Following a desperate campaign by Candice, Owen was transferred to the Nelson Mandela Children’s Hospital in Johannesburg where he underwent a more advanced brain scan and was eventually diagnosed with DIPG. Radiation therapy is part of the standard course of treatment for DIPG patients. For roughly 70% of DIPG patients, radiation causes the tumour to shrink, which provides relief from many of the symptoms associated with DIPG. Symptoms include problems with balance, walking, chewing, and swallowing. Visual disturbances (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision), headache, nausea and vomiting are also common. Only 10% of children with DIPG survive for two years following their diagnosis, and less than 1% survive for five years. On average, children diagnosed with DIPG die within a few months of diagnosis.

An experimental anti-cancer drug (ONC201), developed in 2008, is currently undergoing phase III trials in the United States. Results from phase I and II trials are promising, showing that it is more effective and safer than radiation therapy in some patients with brain tumours. Although trials were started in 2014, ONC201 has not yet been approved by the American Food and Drug Administration, despite pressure from patient advocacy groups appealing for the speedy approval of the drug.

It has now been three months since Owen was diagnosed and Candice has been told that her son has days or at the most a few weeks left to life if he does not receive urgent treatment. But despite Candice’s attempts to get Owen the help he needs at Charlotte Maxeke/Johannesburg Academic Hospital, he is sent home time after time with no treatment. “Every time we show up for Owen’s appointment for radiation therapy, we are told that there has either been some sort of miscommunication, a general anaesthetist is required for the procedure to go ahead and one is not available, or they have a mould problem (mould can cause infection in patient’s whose immune system is weak). We are desperate,” says Candice. Owen was scheduled to undergo radiation therapy on 19 June, only to be told yet again that there was no general anaesthetist on call. They were told to return to the hospital on 22 June and if they were able somehow to obtain the services of a private anaesthetist, there is an improved chance that the procedure will go ahead.

“Each day that passes that Owen does not get help, brings the day closer that I might have to bury my son,” says a tearful Candice. Despite our continued efforts to raise funds for our little Owen for more treatment and literally begging and pleading with any one and every one we could get hold of, we ran out of time. My sweet innocent little boy lost his battle with DIPG on 16 November 2020.

Nothing can console us as a family. We all feel so devastated that its torn us as a family apart.

Written by Candice, Owen’s mother.

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