The trauma of childhood cancer

Thylo Uys, 10, from Eastridge, who was recently diagnosed with stage 4 brain cancer has his hair cut. Pictured with him is his dad Taswell Uys.

With September being Childhood Cancer Awareness Month, Plainsman reporter FOUZIA VAN DER FORT met with an Eastridge family, whose son was recently diagnosed with brain cancer; a Cancer Association of South Africa (Cansa) TLC (Tough Living with Cancer) co-ordinator, offering support to parents of children who have cancer, a professor at Red Cross War Memorial Children’s Hospital and a Mitchell’s Plain Cancer Association of South Africa community worker.

On Friday September 15 Thylo Uys was confirmed to have stage 4 brain cancer, Glioblastomas (GBM), a fast-growing tumour on the brain, with a prognosis of just over a year to live.

His mother Leticia told the Plainsman: “I just want my happy son back.”

Thylo was treated to an outing with Reach for a Dream on Saturday September 16 but, said Leticia: “He used to get excited for things. Nothing excites him anymore.”

She had to prod him to say thank you. “He didn’t even smile,” she said.

Leticia first took her son, an academically-sound Grade 5 pupil at Cornflower Primary in Lentegeur, to Mitchell’s Plain Community Health Centre in Eastridge on Thursday June 29, when he was feverish and constantly falling.

A month later she received a call from Thylo’s class teacher Tyrone Smith to say he could not make out Thylo’s scribbles.

“We couldn’t understand because he did well during the June examination,” she said.

On Saturday August 5, Thylo was rushed to the Community Health Centre’s trauma unit because he was vomiting and limping. Two days later, on Monday August 7, he was admitted to Red Cross Children’s Hospital, where he showed right-sided weakness. Items were falling out of his right hand, he was limping with his right leg, his speech was slurred and he had aggressive emotional outbursts. It is here where he was diagnosed with hydrocephalus, a condition characterised by the excessive accumulation of fluid in the brain.

Non-communicating hydrocephalus, also called “obstructive” hydrocephalus, occurs when the flow of cerebrospinal fluid (CSF) is blocked.

Thylo was discharged on Wednesday August 16 but returned two weeks later complaining of a new onset of headaches, severe vomiting and dizziness since waking up. The fluid on his brain was drained and a shunt put in.

Leticia said last month they were told (by medical staff) there was nothing they could do for Thylo.

“He only has painkillers,” she said. But when a professor examined Thylo, he was responsive and strong and is almost immediately wheeled into surgery on Tuesday September 5 for doctors to remove 40 percent of the tumour. However, only 20 percent was removed.

Leticia had to take a leave of absence from the NGO she works at in Gatesville, while her husband Taswell, a carpenter, is now the sole breadwinner.

Thylo didn’t have much to say during our interview last Wednesday September 13 except to say he missed school. “I want to play with my friends,” he said.

Charlton Uys, Thylo’s uncle, who lives with them in their Eastridge home, said his nephew was not the same. “It is a real fight to get him to hospital. He does not want to go,” he said.

Leticia said family and neighbours had stepped in to help look after Thylo’s three siblings, Aiden, eight months, Logan, 3, and Chleo, 9.

She said the school sent food parcels and family members take them to Red Cross, when they can. Otherwise it is R45 per trip for Thylo and his parents to travel by taxi from Eastridge to Rondebosch.

Last Friday, September 15, he returned to hospital for the diagnosis and to discuss further treatment. Yesterday, Tuesday September 19, Thylo started a 30-day radiation programme as an out-patient at Groote Schuur Hospital.

No two cancer stories are alike and there is nothing positive about it said Anthea Lewis, Cancer Association of South Africa (CANSA) TLC (Tough Living with Cancer) co-ordinator.

She said the most prevalent childhood cancers were leukaemia shortly followed by brain cancer.

Since January, 46 children as part of the TLC programme, aged between nine months and 18, have died.

Ms Lewis works across the Western Cape, offering emotional support, palliative care, food support and taking the children on outings.

They also have a reintegration programme for children with cancer to return to their family, after parents may have been at their bed side all day and having to share them with siblings on their return home.

The programme also includes in-ward services where they teach parents crafts and skills.

Ms Lewis said often it took a long time before children wre diagnosed but parents could see that something is not right. “It is not the disease that kills children but the treatment as it may weaken their organs,” she said.

“You and I will never know what it is like. Parents whose children have cancer speak a different language. One child may be on steroids and the other on radiation. Today I may go into a ward and be chased out of the room and get a hug the next day. And that is just how the treatment is affecting them,” she said.

Ms Lewis said things changed all the time. “A child may be diagnosed today and be operated on about four times within two weeks,” she said. She said there was no time to recover or to process. “You as a parent want to protect your child but there are times when you need to hold your child down for needles to be put into your child’s body.

“Your child is operated on before chemo and can go into a state of depression. Parents say their children show mood swings but it is because of all the trauma the child has to face, going into theatre and being prodded,” she said.

Professor Alan Davidson, head of the Haematology and Oncology Unit at Red Cross Children’s Hospital, said in most cases of childhood cancers there was no known cause. “We focus on early detection rather than prevention,” he said.

Professor Davidson said childhood cancer was different from adult cancer as it was less common, there was a spectrum of cancers and it was fast growing. “More adults get breast cancer in Cape Town each year than all the children who get any form of cancer. We estimate that about 100 children under the age of 15 years are diagnosed with cancer in the Cape Town Metro each year,” he said.

He said there’s a different spectrum of cancers consisting mainly of brain tumours (25%), acute leukaemia (30%); and deep-seated tumours arising from primitive cells in deep-seated organs such as liver, kidney and adrenal gland, which make them hard to detect.

Professor Davidson said while it was fast growing, “luckily this means that they are usually more sensitive to chemotherapy”.

He advised parents to look out for the following symptoms, which if persistent, could be danger signs for childhood cancer:

White spot in the eye, new squint, blindness or a bulging eyeball.

Lumps in the abdomen or pelvis, head and neck, in limbs, testes or lymph glands.

Pallor and easy bruising or bleeding.

Aching bones, joint pains, backache, and easy fractures.

Neurological signs: change or deterioration in walk, balance or speech; regression of developmental milestones.

Headache for more than two weeks with or without vomiting; enlarging head.

Unexplained prolonged fever over two weeks, loss of weight and fatigue can also be signs of cancer but there are other diseases like TB and HIV that need to be excluded first.

The warning signs of cancer can be mistaken for common childhood ailments. “We would advise parents to take their child to a physician or a qualified healthcare provider for further consultation if any of these symptoms persist, and we try hard to educate doctors and nurses about these warning signs to improve early detection,” said Professor Davidson.

Saadiqa Abrahams, of Cansa’s Mitchell’s Plain Relay for Life Survivors’ Committee, said Cornflower Primary School participated in the local annual Relay for Life, an international event that unites cancer survivors and the communities that care about them by forming relay teams to continuously circle a track for 18 to 24 hours as a symbolic gesture to demonstrate that cancer neither slumbers nor sleeps.

Ms Abrahams said they had eight children in Mitchell’s Plain diagnosed with cancer, one of whom one had leukaemia, another with brain cancer and one with cancer in the eye.

“In most cases we contact families but we want them to contact us, so we can know about the children in our community,” she said.

Ms Abrahams said they try to offer as much support as possible. For more information, call Ms Abrahams on 061 494 1413, Cansa’s Mowbray office on 021 689 5347 or visit www.cansa.org.za.