Recommendations for children undergoing treatment for cancer

SHAYNE AND STUART HAY, LUKE’S PARENTS

You have your bad days, but you have to keep trying to see the good in everything.’

For Zimbabweans Shayne and Stuart Hay it was premature puberty that
alerted them to the fact that something was not quite right with their ten-yearold
son, Luke. ‘In a matter of months he went from a size four shoe to a size
seven,’ Shayne explains. ‘He turned into a teenager overnight.’

The family took him for tests and scans, but were told by doctors that it
was perfectly normal for Luke to be undergoing premature puberty, even
though his bone-age showed that of a twelve or thirteen-year-old. It was only
during a consultation with an endocrinologist in Johannesburg that he was
diagnosed with a brain tumour. His tumour marker (ß-HCG) was well into
the thousands, and should have been less then ten for a boy his age.

Apparently this could and should have been picked up earlier through the
blood tests. He was immediately booked in for chemotherapy and underwent
his initial round. Everything was going well; Luke’s blood had recovered
significantly and he was due to check in on the Monday for round two.

It was Sunday afternoon when Luke came through to the bedroom
clutching his head and shrieking in agonising pain. This was followed by
uncontrollable vomiting. ‘We sensed there was a problem, but at that time
had no idea of the severity. We rushed him to DGMC [Donald Gordon
Medical Centre] Oncology where he was immediately sent for a CT scan. It
was then confirmed that Luke had suffered a major brain bleed, resulting in
him slipping into a grade-three coma on a scale of three to fifteen,’ says
Stuart. It was the beginning of fifteen months of basically living at the Wits
University DGMC ICU in Johannesburg. The Hays’ two youngest children
had arrived in Johannesburg for a long weekend, but when their brother went
into a coma, they did not return to Zimbabwe or to their home school for
nearly a year and a half.

Luke spent over 107 days in intensive care and went in for surgery around
fifteen times – mostly so that excess cerebrospinal fluid could be drained from
inside the skull via a ventriculoperitoneal shunt. He was in and out of a coma
for much of the time in ICU. When he finally woke up, he could not move or
talk. The Hays were called into the specialist’s office one afternoon and told
that there was not much hope that he would ever walk or talk again. They
were also told that there was a good chance Luke would be on life support for
an indefinite period of time. It was recommended then that they look into
long-term nursing facilities and perhaps seek some form of counselling.

The Hays, however, did not let negativity or doubt enter their thoughts for
a moment. ‘We didn’t ask why it had happened to us, that just makes you
angry. We just tried to see the positive in everything. You have your bad
days, but you have to keep trying to see the good in everything.’

Luke had his next two rounds of chemo while in ICU. This was
administered through veins in his hands, as his port had been removed earlier
as it was an added source of infection. While undergoing treatment, he was
fed via a percutaneous endoscopic gastrostomy (PEG) tube. All his
medications (other than intravenous) were also given through the PEG.

Shayne says this method did him wonders, as she was able to feed him natural
foods that he might not have eaten otherwise. She took complete charge of his
nutrition, doing as much research as she could on the topic. Luke was fed the
Budwig Protocol (an anti-cancer diet founded by German biochemist
Johanna Budwig), glyconutrients and barley greens. Shayne also lowered his
sugar, dairy and red meat intake. She also attributes the family’s health
during this stressful period to the fact that they had barley greens every day.

Luke kept fighting through his treatment, despite recommendations that
the Hays start looking for a home to put him in. Ten months after his ordeal
began, he started talking again. Two weeks after that, he was walking,
determined to get better. In September 2012, the Hays were able to move back
to Zimbabwe and Luke returned to school. He has not yet fully recovered and
the Hays are still settling back into life in Zimbabwe, but Shayne says it is a
miracle. ‘We don’t worry at all about the future, we make the most of every
day. It was such a humbling experience; we wake up every day and are
thankful. It has been life changing.’

Shayne recommends a PEG tube to anyone undergoing treatment and
believes that nutrition played a very large role in her son’s recovery. Their
support system in the form of doctors, nurses, therapeutic staff, friends and
family was also a huge blessing. Faith also played a very important role in
their journey.

A NOTE ON CHILDREN UNDERGOING TREATMENT

Coping with a child undergoing cancer treatment can be very scary and it
might be difficult to get your child to eat nutritional foods when they are
feeling sick. The Queensland Cancer Council has made certain
recommendations for children undergoing treatment for cancer. These
include:

• Do not force children to eat at this time. Loss of appetite or feeling ill is a common side effect.

• Offer high-energy foods between treatments when your child is feeling better.

• For extra energy, try adding butter and cream to vegetables.

• Ask your dietitian for a list of high-energy snacks.

• Be generous with sauces, as food can taste bland to children (indeed anyone) undergoing treatment.

• Do not allow children to waste tummy space on food that is low in energy.

• Be flexible with meal patterns, as well as choice of foods.

• Give frequent small meals rather than three large meals a day.

In South Africa, there are a number of specialist treatment centres (normally
attached to academic teaching hospitals) that offer specialised paediatric
oncologists. Contact the Childhood Cancer Foundation (CHOC) to find out
more.