Trying to make memories for Harley

Melissa Shuttleworth is striving to create memories with her daughter Lilly-Rose (19 months) and her terminally ill son Harley (7) that she and her family can cherish. Photo by Samantha McPherson.
Melissa Shuttleworth is striving to create memories with her daughter Lilly-Rose (19 months) and her terminally ill son Harley (7) that she and her family can cherish. Photo by Samantha McPherson.

Holding her 7-year-old son's life in her hands is one of the toughest situations Melissa Shuttleworth has ever had to face. The family, who have decided to stop putting Harley through surgery and chemotherapy, are focusing on making memories with him that will last forever, but they need your help. Samantha McPherson explains.

Melissa Shuttleworth is holding her 7-year-old son's life in her hands.

Harley has been fighting bilateral Wilms tumours for two years. His tumours, which are on his kidneys, have grown back twice this year and his body can no longer handle surgery and intensive rounds of chemotherapy.

''Being told every six months that his cancer has come back is something you don't want to hear. He has gone through so many rounds of chemotherapy. He had his tumour removed on his right kidney. At Christmas last year the tumour grew back and was bigger on his left kidney. He had that removed in January this year. Two weeks ago we found out that it has grown back again,'' she said.

Surgery was an option but Ms Shuttleworth could not bear to see her son put on dialysis.

''He would have a poor quality of life and would have to spend even more time in hospital than what he already has done. We just didn't want to keep putting him through everything for just a little bit of extra time. It could be months. It could be years. The doctors don't know how long he has,'' she said.

Palliative care was Harley's best option.

''I'm definitely holding his life in my hands. It's the worst feeling ever. His whole life has been a struggle. He's taken a lot longer to reach those milestones. In his mind he is a 2 or 3-year-old. It's hard expecting him to do what a 7-year-old does, '' she said. Ms Shuttleworth was now focused on making memories with her son that would last forever.

''We just want to let him be a child. To have fun, to play outside and to not have to worry about going to hospital. We want to fill up the backyard with all his favourite toys and I just want to be able to give him everything I can,'' she said. Harley, who also has special needs, loves motorsport.

''He just loves being in cars. And he always tries to get the keys to drive. His attention span is quite small but he does enjoy watching car racing on TV. I think he would love to take a hot lap,'' she said.

Ms Shuttleworth said Harley went to the V8 Supercars in Pukekohe earlier this year, met Mark Winterbottom and checked out his car.

''He got chauffeured to and from the airport in a Ferrari and a Chevrolet Camaro. He couldn't decide what car he wanted to get in. He didn't want to get out and he kept asking the driver if he could drive. In some ways he is a typical boy and in some ways he isn't,'' she said.

Ms Shuttleworth said Harley had low kidney function and it could take ''just one bit of tumour'' for him to go downhill.

''I just want to enjoy the time we have with him,'' she said.

- If you can help Harley create some happy memories, contact Star reporter samantha.mcpherson@thestar.co.nz.

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