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The van der Westhuizen family’s lives changed shockingly fast during an ordinary visit to the paediatrician, when what they thought was a squint was diagnosed as a cancerous tumour in their six-month-old baby’s eye. To save Wian’s eye, they put their faith in a procedure that is revolutionising the way chemotherapy is being administered to young cancer patients. This is their story.
Signs of something going wrong
“When Wian was four months old he sometimes squinted with his right eye. My husband initially felt that we need not worry as he believed it could be the result of an under-developed eye muscle. But we remained uneasy about it,” explains Hester, who is an educator at Potchefstroom Gimnasium.
“Then Wian fell ill with bronchitis and during our visit to the paediatrician, we shared our concern with her about his eye. She also noticed the squint and referred us to Dr van Wyk, an ophthalmologist.
We had an appointment with him on 23 August 2012. Wian was examined by the doctor and he noticed an abnormal growth of tissue on the inside of our son’s right eye. The ophthalmologist suggested that we examine Wian’s eye under anaesthesia.”
Investigating Wian's eye tumour
Wian’s dad, Mario, is the admin manager at MediClinic Potchefstroom and this was the same hospital that his son was booked into for the examination the very day after seeing Dr van Wyk. While baby Wian was under anaesthesia in theatre, some X-rays of his ocular cavity were also taken.
“This procedure was very stressful for us, as his parents,” says Hester. “The ophthalmologist asked to see us after the examinations and tests were done.” This was when the van der Westhuizen family received the life-changing news.
“He informed us that Wian had a tumour in his right eye, but that his left eye was healthy and that the X-rays did not indicate signs of the tumour spreading. It felt like our world came to a standstill.
It was an emotional moment, but the ophthalmologist treated our case with the utmost empathy. So many thoughts went through our minds simultaneously. We had conflicting emotions – grief over the news of the tumour, but at the same time gratitude that the growth was unilateral [only in one eye] and that there was no spreading.”
Finding out more
Hester and Mario went home after receiving their news and started doing their own research on Wian’s diagnosis of retinoblastoma. One of the ways to diagnose this condition is to take a photograph with a flash without red eye reduction. “The pupil of the healthy eye will show a red glow, whereas the eye with the tumour will reflect a white glow. This was indeed the case with Wian,” explains Hester.
Retinoblastoma is a rare type of childhood cancer that occurs when malignant cancerous cells begin to grow in the retina of the eye, forming a tumour. It occurs in 10 out of every 100 000 children and it is extremely serious: not only does it affect the child’s eyesight, but should it spread, the eye will have to be removed.
A week after the diagnosis baby Wian was back in hospital to undergo a lumbar puncture and bone marrow biopsy to eliminate the possibility of the tumour having spread.
An understanding big sister
Then more unsettling news for the devastated family: “Dr van Wyk referred us to another ophthalmologist in Cape Town. In order to treat Wian, we would have to travel down to Cape Town every month, for as long as it took.”
Wian has an older sister, Hesmari, who was only two years old when her baby brother was diagnosed with retinoblastoma. “It was very difficult to leave her behind whenever Wian had to go for treatment. The whole situation was challenging.
Throughout it all, we had to make sure that Hesmari also received enough attention. She was so understanding when we had to go to Cape Town ‘to make her little brother’s eye better’.”
A new type of treatment in SA
“During those visits to Cape Town, Wian was examined while anaesthetised. This was conducted by the ophthalmologist at the Groote Schuur Hospital. Photos of both eyes were taken during these examinations,” recalls Hester.
Wian’s Cape Town ophthalmologist explained to Hester and Mario that there were three priorities while rating the retinoblastoma in his eyes. The first was to save his life. Then they would try to save his right eye and lastly, save his sight in that eye.
“She explained to us that we had two options, namely: six months of full chemotherapy or a relatively new treatment in South Africa where the chemo is administered through an angiogram. We decided on the second option.”
During this angiogram process, chemotherapeutics are administered directly into the main artery of the eye via a microcatheter. Baby Wian received chemo on Fridays during his first two visits. The procedure was performed by a neurosurgeon at the Red Cross Children’s Hospital. He explained to the family that an angiogram is not always successful and that the arteries can’t always be penetrated. But the family held out hope.
“Wian responded positively to the first treatment and the tumour shrunk significantly in size. The tumour did not show a significant decrease in size after the second treatment, but there was also no growth.”
Going home with hope
After the third examination the van der Westhuizen family were referred back to Dr van Wyk in Potchefstroom for follow-up examinations. “At first these were done on a monthly basis, but at the moment, follow-ups are every four months,” says Hester.
Today Wian is 18 months old and the tumour, although much smaller, is still present in his right eye. His family explains that it is affecting his sight by obscuring the formation of images, but it is actually still too soon to tell the full extent of the problem.
“This experience has been an emotional rollercoaster. We were at times very positive and at other times heartbroken and despondent. Eye examinations must, however, continue until Wian is six years old. We are very, very grateful to be able to say that so far no spreading or growth has taken place.”
