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Real Stories

David, Kate and Margaret: Cancer impacts the whole family

“The further you get away from treatment, the more normal you start to feel, and that terrifies me.”

Cancer impacts the whole family, even grandparents. Kate asked her mother Margie for support during David’s cancer journey.

We look back and there were heaps of warning bells, but not knowing anything about paediatric cancer, nothing would have sent up a red flag.
~ Kate says of her son David’s first symptoms

Kate: After a blood test ordered by our GP, my husband Steve and I suddenly found ourselves sitting in a hospital consultation room. An oncologist told us that our three-year-old David had a 90 percent chance of being diagnosed with leukaemia.

My mother Margie remembers the speed of the diagnosis.

Margie: When we were driving down to see them, Kate called me and said: “Mum, how did we go from normal to this in 24 hours?”

Kate: David’s treatment was complicated by a reaction to chemotherapy, which caused him to have a stroke.

After that it was very much a fine balance. The oncologist said that we needed to keep going with treatment and the neurosurgeons would say that we needed another couple of hours for the brain to recover.

After three months as an in-patient and nine months’ intensive treatment, David moved onto maintenance treatment, which lasted another three years.

For four years I couldn’t have a standard job, even part time.

The transition to maintenance came with its own challenges. We went from treatment every day to chemo at night, at home.

Maintenance is supposed to be another milestone you’re working towards, but when you hit it, it can really throw you.

Margie: With David’s diagnosis, my role as a grandparent living interstate changed dramatically. Instead of starting a new job and preparing for the next family wedding, I moved in with Kate and Steve to help care for the other children in the family.

Kate had to hand the baby over to me – we just had to wean him so I had Matthew at six months and Madeleine at five and a half years old.”

Madeleine was fabulous through it all, but we couldn’t give her the full weight of it – I had to keep up a sort of persona.

Kate’s father-in-law would come down on a Wednesday and give me a break. I would often just go somewhere and cry. Then I’d be right to keep going.

When a social worker talked to me about the “double impact” grandparents sometimes feel, the phrase made sense. I was watching my daughter go through hell with her son, and I was terrified for my grandchild. It was big.

I felt like I’d never been tested. I’ve had a pretty good life and things happened with no huge dramas. This tested me.

I didn’t feel like this during David’s treatment, but on reflection, I feel like I had the resilience I hoped I would have.

Margie: Kate and Steve were a unit of strength throughout David’s diagnosis and treatment.

One of the things I observed very strongly was that Kate and Steve were as one – and I know that isn’t always the case. They were as one in their worry and in their strong love for the kids. It was wonderful to see.

Kate: Childhood cancer can pull a parental relationship in separate directions. It’s very difficult to manage your own emotional response to something this dire at the same time as trying to manage your spouse’s emotional response.

If I felt Steve wasn’t upset enough, or didn’t understand that I’m having this terrible day – I think that can really fracture the relationship.

Steve and I found strength in that we had very similar responses.

Kate: Finishing treatment was another “rocky” period.

I’m noticing that the further we get away from treatment, the less under a cloud he is.

For a long time, he was very withdrawn and he was kind of a different child. The further away we get, the more I’m noticing he’s changing and becoming more like the David I think he is.

There are two sides to life after treatment. David’s getting better as we’re moving away, but there are also more subtle, longer-term effects that we’re noticing. He has a genuine problem with fatigue. He can’t concentrate for long periods of time. He gets distracted easily.

He has problems changing activities. We’re putting that down to a combination of the stroke and chemo.

The further you get away from treatment, the more normal you start to feel, and that terrifies me. When people ask me how David and I are now, I tell them we’re doing well.

But we’re always aware. It’s just this ongoing thing. It’s part of our lives now.

The further you get away from treatment, the more normal you start to feel, and that terrifies me. It’s just this ongoing thing. It’s part of our lives now.
~ Kate

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