Guide on cancer journey (+video)

By Rebecca Malcolm

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When a child’s cancer diagnosis brings family members’ worlds crashing down, in come the Child Cancer Foundation to help them navigate their way through. Rebecca Malcolm talks to Rotorua support worker Barbara Richardson about what she does, why she does it and how the public can help this appeal month.

Barbara Richardson is one of those people who comes in to your life at the worst possible time, helps you through it, then never really leaves.

To dozens of child cancer families around the Lakes district she's become like family, and her help is more in demand than ever.

The Child Cancer Foundation normally has two or three children in the Lakes district on "active treatment". At the moment it has 12, something Barbara describes as "purely random".

"Childhood cancers aren't caused by lifestyle factors. They're usually random and hugely bad luck," she says.

Luckily, she said, the foundation was able to adapt quickly and react ensuring no families missed out.

All up, the Lakes branch of the Child Cancer Foundation has about 50 families on its books. Some, like the 12 at the moment, are in the thick of the diagnosis and treatment phase, others are on maintenance and in remission, some have fought that battle and are moving on with life but still keep a link with the foundation.

In some cases, parents may have lost a child from cancer but remain involved.

Barbara points out that every case is different, every family is different.

The purpose of the organisation is to provide families with emotional, practical and financial support. It changes depending on what each family needs but can range from the Beads of Courage, scholarships to help children with extra education if they've missed school or had learning affected by treatment, grocery and petrol vouchers, arranging family support events, special days out and camps for both kids with cancer, siblings and bereaved support camps. The list is extensive and ever-changing, and as a charity, it is reliant on fundraising for every cent.

She says often families weren't around people who knew anyone with a child with cancer, so the gatherings with others who "got it" were instrumental.

"It normalises a very abnormal situation. It is helping parents to find ways to continue to raise their families and build lives with this increased stress. We want to help them get through it."

On diagnosis, families are visited by a social worker who, if the family agrees, passes on details to the organisation.

Barbara says most agree.

"It's an incredibly isolating experience. Apart from the physical side, families have to be isolated, they have to say don't come around if you're sick, they can't take the kids out, even the supermarket shop is incredibly difficult."

For many parents, just having support and someone to talk to is

one of the biggest things.

"It's the relief to talk to someone who gets it, who has experienced something similar, who understands that stress, the despair to get their children well."

Barbara says sibling support is vital, too. "They are often quite traumatised. Often you can hear the sibling saying, 'they're getting all the presents, I wish I had cancer'."

Of course they don't, but Barbara says it can often be quite confusing. "We do a lot around that [helping the siblings]."

Sometimes it's just another set of ears in an appointment, asking the questions they might not have thought of, being an advocate or helping. When treatment is over, many families come back and volunteer.

"That's the lovely part when parents want to give back to other families and volunteer to help out."

Seeing the kids growing up, working at the supermarket or bumping into them in town makes it special, Barbara says.

"Part of the job is building relationships with the gorgeous children. I just love it when they start to get through that initial treatment and start to get back to normal childhood and having fun.

"They grow into real resilient children and teenagers and there is something special about them because they have gone through such a trauma."

Barbara has been "employed" 10 years but her relationship with the foundation stretches back to when her daughter had cancer when she was 6 and 7.

"It definitely give me an empathy and understanding of what they are going through. I couldn't have got through it without them which is why I wanted to do my bit to give back."

While she is the first to admit there are hard times, she says it comes with a lot of happy moments. A highlight is parents "taking a different direction because their values have changed" and pursuing something they love.

"You never come out the same person. Your values change, you really come to understand life has got to be lived and don't sweat the small stuff. And so much of it is small stuff. The most important thing is the people around you."

- Rotorua Daily Post

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