Menu arrow

 

Kate and Margaret's story

 

diagnosis

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

 Margie and David

After a blood test ordered by their GP, Kate and husband Steve suddenly found themselves sitting in a hospital consultation room. An oncologist told them three-year-old David had a 90% chance of being diagnosed with leukaemia.

 

Kate’s mother Margie remembers the speed of the diagnosis. “When we were driving down to see them, Kate called me and said, ‘Mum, how do we go from normal to this in 24 hours?’”  

going through treatment

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,” Kate explains. “The oncologist would say, ‘We need to keep going with treatment’ and the neurosurgeons would say, ‘We need 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,” Kate says. 

 

Kate goes on to explain that 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’s role as a grandparent

With David’s diagnosis, Margie’s role as a grandparent living interstate changed dramatically. Instead of starting a new job and preparing for the next family wedding, she 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,” Margie explains. “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,” Margie says. “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 Margie 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.” Margie explains. “It was big.” 

 

“I felt like I’d never been tested,” Margie adds. “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.”

David and sister

effects on Kate and Steve’s relationship

Margie describes Kate and Steve as “a unit of strength” through 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 adds that 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. But Steve and I found strength in that we had very similar responses.”

Redkite’s support

“It’s like a bomb goes off in your life and nothing is quite the same,” Kate says of the extra financial burden during treatment. “We were really lucky that Steve’s work was flexible. I know a lot of fathers aren’t given that luxury.”

 

Kate remembers when her social worker explained Redkite’s financial assistance. “That made a huge difference. It was at that stage when it started to hurt and we started to notice we were forking out and forking out – it was just amazing.” 

 

“Since then David had to have ongoing occupational therapy support, which is really expensive,” Kate adds. “So we got an education grant through Redkite and that was an absolute godsend too.” 

 

Margie and Kate are also fond of the support pack they received when David was first admitted to hospital. “We still use it! We just packed that bag with everything and it would stay by the front door. If we had to go in the middle of the night, that bag had the charger in it and all the bits and pieces we needed.”

late effects and life after treatment

After transitioning to maintenance, Kate describes finishing treatment as another “rocky” period. 

 

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

 

But Kate explains that 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,” Kate says. Margie adds that when people ask her how David is now, she tells them he’s doing well. “But we’re always aware,” she explains. “It’s just this ongoing thing. It’s part of our lives now.”

 

– September 2017

 

Would you like to share your story? Have a look at Kite ConnectorsRedkite celebrates the diversity of personal experiences and stories. The stories shared on our website include opinions that may not necessarily represent Redkite's views.

 

Kate, David and the rest of the family