Every year an increasing number of South African children are diagnosed with cancer. But now, many more are beating it and it’s no longer a death sentence. That said, it’s still a tough battle – even after you’ve survived it
BY BETTIE KEMP

WHEN Anriëtte van Wyk of Fairland in Johannesburg received the news five years ago her life was turned upside down. Nothing would ever be the same again, not for her or her parents.

She was getting good marks at school and was a highjump champion. But after returning from a school trip the 10-year-old with the long dark hair felt nauseous, listless and tired.

Doctors could find nothing wrong with her but finally her GP sent her to hospital so a gastroenterologist (a specialist in diseases of the stomach and intestines) could do tests.

While on his ward rounds he saw her vomiting heavily. Clearly this wasn’t a simple tummy problem.

An MRI (magnetic resonance imaging) scan confirmed the specialist’s worst fears: Anriëtte had a large tumour deep in her brain. It was a medulla blastoma, a malignant brain tumour that usually originates in the cerebellum, quickly spreads to the rest of the brain and spinal cord and can damage vital areas of the brain.

Diagnosing a brain tumour early is extremely difficult. By the time a child experiences nausea, vomiting, headaches and other symptoms the tumour has usually been growing for an average of five months.

Anriëtte had to have an operation immediately. The specialist couldn’t say what her chances of survival were.

Only an operation could show whether the tumour had already penetrated her brain – in which case there would be nothing doctors could do. ‘‘We went with her right up to the theatre doors,’’ Anriëtte’s dad, Gert, says. ‘‘The doctor told us, ‘Say goodbye to her now’. We didn’t know if we’d see her again.’’

The doctors had to work extremely carefully, millimetre by millimetre, because the growth was against the brain stem and the area that controls breathing. One tiny mistake and she could stop breathing and die on the operating table – or she could end up blind, deaf or paralysed.

‘‘We were so grateful and relieved when it became clear the operation had gone well,’’ Anriëtte’s mother, Mariëtte, says. ‘‘We thought it was all over and the malignant stuff was all out. The doctor spoke of some post-op treatment. Little did we realise we were facing a full year of chemotherapy and radiation and all their drastic side-effects.’’

Anriëtte’s parents still aren’t sure whether it was the right decision to make their daughter go through chemotherapy and radiation. However without these treatments there was a good chance the tumour would regrow within 18 months and take her life. ‘‘Your first chance at eradicating it remains your best,’’ their oncologist insisted. Yet even with the treatments there was no guarantee the cancer wouldn’t come back.

The family had to face the possibility of terrible loss. One oncologist didn’t mince words: your child could survive but be deaf and blind and never be able to go back to school, he said. And that could easily have been the case.

Irradiating the brain and spinal column of a growing child can lead to memory, learning and hearing problems and growth retardation. It can also change the child’s social and emotional behaviour. But radiation is also one of the best means of shrinking a tumour and halting its growth. When Anriëtte went in for the first of her chemo and radiation treatments Gert pleaded with the doctors, ‘‘Just make sure my child doesn’t go blind or deaf.’’

He says the doctor spent weeks making meticulous preparations. He had a protective mask moulded for Anriëtte’s head and neck so the radiation wouldn’t destroy healthy tissue.

Her treatments became a way of life – three months of chemo followed by 48 sessions of radiation, then another three months of chemo . . .

The treatments had the same side-effects: she became tired and nauseous. The Van Wyks’ GP says he once had to give Anriëtte an injection on Christmas Day to ease the effects of the chemo.

Nevertheless, on the way to her sessions at the hospital the family would chat about ordinary things, just like ordinary people – discussing the movies they want to watch or Anriëtte’s favourite videogames. ‘‘For me the worst was being in hospital,’’ Anriëtte says. ‘‘I missed my friends a lot. But when you’re that sick you just have to keep believing.” ‘‘The children with cancer who do best are those who stay positive,’’ says Dr Charmaine Jacobs, a children’s oncologist at Unitas Hospital in Pretoria. ‘‘It helps the healing.’’

Anriëtte went to school on her good days but mostly the family helped her keep up with her studies at home. ‘‘Put your books aside for a while,’’ a doctor once told her. ‘‘The schoolwork is tiring you too much.” His words had a major impact – it was as if Anriëtte was being told she had nothing more to live for. She withdrew even more and it seemed she’d given up hope.

Then came the turning point. The Reach for a Dream Foundation asked her about her biggest dream. She had three, she told them. And all three came true for her – she received a laptop computer (from the Dream team), a helicopter ride (arranged by the SAPS) and a skiing holiday in Italy (from mom and dad).

‘‘She so badly wanted to touch real snow,’’ Gert says. ‘‘She was playing in the snow when she looked at me and simply said, ‘Daddy, I want to live’.’’

Perhaps the fulfilment of her dreams helped make up for the many losses that Anriëtte, like most children who develop life-threatening illnesses, have had to cope with. ‘‘Children still have to come to terms with the things they’ve lost long after the disease has been beaten and those emotional scars remain part of their lives,’’ clinical psychologist Dr Erika van der Wateren- Wakeford of Centurion says.

For Anriëtte, who was her school’s victrix ludorum and had achieved Gauteng colours for high jump, it meant not being able to take part in her favourite sport because her coordination had been affected.

She has taken up swimming, for the exercise and because she enjoys it – but it’s not the same. She used to be part of a group and when she could no longer take part competitively she became the outsider, the odd one out, her mom says. ‘‘Children make friends at sport practice and social events. Anriëtte misses her friends because they’ve moved on without her.’’

‘‘Well, she has also moved on in a sense,’’ Gert says. ‘‘On an emotional level she’s much more mature than they are. She’s experienced things none of us have been through. But on a social level she has been left behind in a way.’’

Anriëtte’s illness has also taught them just how cruel children can be. ‘‘Parents probably aren’t always aware how their children behave at school,’’ Mariëtte says. ‘‘Anriëtte told me kids used to run away from her – just because she was different.

‘‘As a mother you have such a clear picture of your child on the day everything came to a standstill. You saw the potential. And now you see how everything has changed. Sometimes you can’t help thinking, what would she have been like if all this didn’t happen?’’

‘‘Children who survive cancer literally get a second chance at life but they have to learn to live that life all over again,’’ Dr Van der Wateren-Wakeford explains. ‘‘Their entire being is affected. They look different which affects their selfimage and self-esteem. They lose some of their social skills and can become introverted. These are changes that don’t disappear overnight.’’

Anriëtte has also had to come to terms with the fact that her short-term memory has been affected. But she’s back at school and doing well – she’s in Grade 9 and maintains an average of more than 70 per cent.

In a tall family Anriëtte is the short one. ‘‘Because of the radiation she has stopped growing,’’ Gert says, paging through the 2004 Moments in Time calendar that depicts cancer patients’ moments of hope. We look at a glossy black-and-white photograph of Anriëtte taken just after she’d completed her treatment. It’s hard to recognise her in the short, trendy wig.

They all agree her hair was the greatest loss. Her thick, long tresses were Anriëtte’s pride and joy. She didn’t ever want to cut her hair. And then it all fell out. ‘‘She pulled the last bits out herself,’’ Mariëtte says. ‘‘The radiation destroyed the roots of her hair so it won’t all grow back again.’’

Anriëtte strokes her hair – the result of two hair transplants. They plan to have more done in future. ‘‘But you know what?’’ Gert asks. ‘‘Her hair reminds me of the grace and mercy we’ve received. It makes me extremely grateful. If her hair grew back perhaps we’d forget.’’ There’s a moment of silence before Mariëtte speaks.

‘‘It’s five years on, the time required before you’re declared ‘cured’. But you never know for sure. We’re still tense before each annual checkup.’’ Still, Anriëtte was pronounced ‘‘clean’’ at her recent five-year check-up so for all intents and purposes she’s beaten the disease.

Studies show a combination of surgery, chemo and radiation can ensure a five-year or longer survival period in up to 80 per cent of children if a medulla blastoma is diagnosed early.

Anriëtte has begun developing other skills. She has painting lessons and does beadwork. ‘‘I thought I’d like to teach other kids who’re sick to do beadwork,’’ she says. Her parents regard this as a huge step forward – their daughter, who had become so introverted, is once again reaching out to others.

She’s becoming part of life again, emerging from the cocoon they’d spun around her to protect her from the outside world. Anriëtte seems distracted during our photoshoot at the Roodepoort swimming pool. Afterwards she gets back into the pool, diving deep down into the water that seems to envelop and protect her. When she breaks the smooth surface her smile is spontaneous.

Later at Wonderboom Airport the photographer uses a parachute as a symbol of the tumbling fall every young cancer patient has to face. After the chute is opened and buckled onto Anriëtte it unexpectedly balloons in the brisk spring breeze. She holds on tight as she’s briefly lifted off the ground.

The photographer raises his camera, clicks and laughs. ‘‘They’re certainly not going to drag her back to Earth any time soon!’’ he says.

10 tips for parents of seriously ill children

1. Explain the medical facts in simple language.


2. Tell the truth. Kids can sense when you’re lying or hiding something.


3. Be honest about the side-effects of the medication. Prepare your child for the unpleasantness of the treatment.


4. Don’t brush off questions about pain, illness and death. Talk about these issues. Acknowledge your child’s fears and your own feelings of helplessness.


5. Be sympathetic but not too indulgent. A gentle but firm attitude helps kids feel safe.


6. Keep your relationship with your partner as healthy as possible. You’ll need each other’s support during this painful time. Consider joining a support group.


7. Let your child still feel like a child: play video and board games together, build jigsaw puzzles or do other fun things that don’t require much moving around.


8. Don’t wrap your child in a cocoon – keep her friends part of her life.


9. If someone offers to help, say yes – you can’t do everything yourself.


10. Hold on to your hope and faith.

MORE AND MORE CHILDREN ARE GETTING – AND SURVIVING – CANCER

Every year in South Africa about 600 new cases of cancer in children younger than 15 are recorded

INCREASING NUMBERS of children are being diagnosed with cancer. Every year in SA about 600 new cases of cancer in children younger than 15 are recorded.

Yet doctors know about 2 000 children a year develop the disease. That means about 1 400 aren’t diagnosed or treated – and die.

The most common cancers in children are leukaemia (about 25 per cent), brain tumours (about 25 per cent), followed by lymphoma, a kidney cancer known as Wilms tumour and cancer of the sympathetic nervous system known as neuroblastoma.

Although more cases are being diagnosed the survival rate for children with cancer has dramatically improved in the past few years.

Eight in every 10 children with cancer can now expect to survive, says Dr Christina Stefan, children’s oncologist at the department of paediatrics and child health at Tygerberg Hospital, Cape Town. In 1970 barely three in 10 would have survived. Today the survival rate for children with leukaemia is 85 per cent. In 1969 almost none survived.

The huge improvement in survival rates is due to better procedures for diagnosing cancer early; better and more effective chemotherapy; more accurate targeting in radiation treatment so fewer healthy cells are damaged; and better combinations of chemo, radiation and surgery.

Children’s chances of survival are better than adults’ because the kinds of cancer they get are mostly those that develop prenatally and react well to aggressive, modern treatments.

This is why it’s so important to help children come to terms with their losses – so they can once again enjoy a carefree existence.

‘A large part of my job is to help my small patients deal with loss. After the shock of the diagnosis they’re in such a struggle for survival they don’t get the chance to come to terms with everything they’ve had to take in. It causes emotional wounds that remain long after the disease has been beaten. Psychotherapy helps them rejoin society and start blossoming again'- Dr Erika van der Wateren-Wakeford, clinical and child psychologist

RED FLAG

The following symptoms may indicate life-threatening diseases such as cancer. Take action if your child complains of them. The symptoms are listed according to the letters of the name of ancient Greek healer SILUAN.

SEEK: Get medical help for symptoms that persist.
EYE: Any change to the eyes or vision – does the child screw up his eyes or see white spots, or is he going blind? Is an eye starting to bulge?
LUMP: A swelling or a bump such as an enlarged gland in the neck, under the arms or in the groin or a larger lump in the stomach that doesn’t go away.
UNEXPLAINED: Any unaccountable symptom such as a fever that has no obvious cause, weight and appetite loss, unusual listlessness, blue patches, bleeds or a rash of tiny red or purple blood spots resembling pinpricks.
ACHING: Pain in a leg, wrist or back when there’s no external sign of injury, or if the child’s bones break easily.
NEUROLOGICAL SIGNS: Headache (especially when it’s accompanied by nausea), problems with balancing, stumbling or a shaky gait, or if the child’s development suddenly starts slowing down or he falls behind at school.

KEEVE IS BACK ON HIS FEET AFTER BONE CANCER

‘‘CANCER is the last thing you think about when you’re 18. I still remember asking the radiologist if the operation could wait until after the exams and the rugby season. When he told me I had bone cancer it brought me up short. I ran to the parking lot and just started crying,’’ recalls Keeve de Villiers (20) of Parktown in Johannesburg. He’s now a medical student at the University of Cape Town.

After two biopsies, an MRI scan and a sonar scan the diagnosis was confirmed: he had osteosarcoma. It’s a rare cancer but the most common bone cancer in children and young people.

Luckily it hadn’t yet spread to his lungs. He started chemotherapy three days after being diagnosed. His father, Gerrie de Villiers, former managing director of M-Net, says nothing but Keeve’s life mattered. ‘‘He wanted to write his exams but I told him to leave everything. We were going to fight for his life.’’ The department of education later awarded Keeve a matric certificate because of his above-average academic achievements up to that point.

The disease is physically and emotionally so exhausting it’s easy to lose your will to live, Keeve says. ‘‘The biggest mistake I made in the beginning was not getting actively involved in my treatment. The question I kept struggling with was whether it’s worse to feel you’re dying or just knowing you are. It was an attitude that just made me even sicker.

‘‘Gradually I started accepting I was ill as well as responsibility for getting better. Once I’d forced myself to start eating and worked with a dietician to build up my body I recovered much faster from the chemo. I started taking an interest in my doctors and the patients who were undergoing chemo with me.’’

The parts of Keeve’s knee and thigh that were infected by the cancer were cut away and replaced with a steel prosthesis. Just a few years ago doctors would have had no choice but to amputate his leg. He now has a built-up sole in his left shoe because his left leg is shorter than his right as a result of the operation. He can no longer walk barefoot or play rugby. ‘‘I would give anything to run a little or play rugby again,’’he says.

His prosthesis is a daily reminder of the six months in which he suddenly had to grow up. ‘‘It becomes part of you and you move on. You have to. But cancer isn’t something you learn to handle and then overcome. It’s something I’ll carry with me for the rest of my life. I’ve made my peace with that.’’

Today he values everyday things a great deal more than he used to. ‘‘Just sitting in the sun or reading a book is something special. Recently I went on a trip with a few friends to look at the spring flowers, something I would never have done before. For me now it’s just about being alive.’’

He has tested negative for cancer for two years. Doctors believe there’s little chance of osteosarcoma recurring after one year. After five years the chances of a recurrence are minuscule. ‘‘By the end of the treatment I’d stopped asking why I’d got sick and started wondering why I’d been given a second chance. One day I’ll be able to stand on the other side of the hospital bed and really know how the patient feels.’’– Betina Louw

FOR MORE INFORMATION:

REACH FOR A DREAM FOUNDATION
011-781-0133; www.reachforadream.org.za

CHILDHOOD CANCER FOUNDATION SA (CHOC)
011-486-1212; www.choc.org.za

CANCER FOUNDATION OF SA HELPLINE
0800-22-66-22; www.cansa.org.za

YOU Pulse Summer 2007/8

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Cancer centre