Ollie's story

Ollie's story

For one little boy, the joy of Christmas arrived nine months after treatment.

One day in December 2018, during her family’s early Christmas celebration with relatives, mum Rachel noticed her three-and-a-half year old son, Ollie, had bruises suddenly appear across his body. A few hours later the family’s lives, and their Christmas, were rudely interrupted by a diagnosis of leukaemia.

“In a way we were lucky,” Rachel says. “The bruises appeared and the cancer was diagnosed immediately, meaning the treatment could begin quickly, before things became worse.”

What I remember about that day is that for a moment the whole world stood still. Then it reorientated itself, and everything took off in an entirely new direction.

It’s amazing how quickly you go from worrying about whether they’re going to be alive for Christmas, to worrying about money, to telling family members, to organising the practical things and more.”

 

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The greatest loss felt, Rachel recalls, is the optimism around the future that parents naturally feel as soon as their children are born – the hopes and dreams, the plans and imaginings.

“You naturally assume, without question, that your children are going to live long, happy and healthy lives,” she says. “Having that assumption torn away from you is very life-changing.”

The medical journey begins

Ollie was diagnosed with acute lymphoblastic leukaemia (ALL) which, Rachel says, felt like a small blessing during a terrible time.

“ALL has had so much really good research done around it. As a result, it has the best outcome of any type of cancer,” she says.

But that wouldn’t necessarily help.

The day after being diagnosed, Ollie went into surgery to have his central line inserted. He also had a chest X-ray, a lumbar puncture, began intravenous chemo and was given intravenous fluids.

Ollie then spent the next nine months in several different blocks of chemotherapies.

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“He had a few blood infections that were really bad, he had micro perforations in his bowel that caused an infection at one point and, on the worst day, during the final two weeks of treatment, he went into liver failure after having a reaction to one of the drugs,” Rachel says.

“He nearly died that day. The treatment itself almost took him out. He declined over a week and on the worst day we were waiting for an experimental medication to come in. He was deteriorating and the doctor said we just have to hold out hope that the drug gets to the hospital on time. His liver was completely shut down and he was going into renal failure and his spleen was dysfunctional as well.”

“We were very lucky that the drug arrived on time. It came in at 11pm and it pulled him back from the brink. Because of that, he pulled through.”

Prior to the drug arriving, Rachel video-taped Ollie as he slept in his hospital bed. She believed it might be the last night she’d ever see her son alive.

“I didn’t quite know what else to do,” she recalls. “Everything is just so up and down, but the treatments to get there are just so brutal. Then, in that moment, you’re just hoping for another hour, maybe even another day.”

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Since that experience, life has been on the up and up for Ollie. A few weeks later he was released from hospital and he hasn’t spent another night there, since. Maintenance treatment will continue until mid-2022.

 

The Kids’ Cancer Project is funding several exciting studies into new, more targeted and less damaging therapies for ALL. These include Dr Michelle Henderson’s laboratory investigation into the NAD pathway as a new therapeutic strategy for children with high-risk ALL,  Associate Professor Tamas Revesz’s clinical trial to improve survival of kids with high-risk relapsed ALL, and Dr Alla Dolnikov’s pre-clinical work to overcome the current limitations of immunotherapy against paediatric ALL. 

Light in the dark

“When I look at Ollie now, at how healthy and lively he looks, it blows my mind,” Rachel says.

“My Facebook memories come up and I see this time last year what we were suffering, and how I was just hoping for one more hour of his life, and then this morning I dropped him off at school, like any other child!”

His time in hospital, however, wasn’t all bad. In fact, there was one particular moment that offered a sad boy great joy.

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“In the clinic they’d put his port in and it was a big needle and they had to do blood tests and none of that was very nice. It all made him very unhappy,” Rachel says.

“During the last round of intense chemo treatment, he received Chef Bear*, one of the teddy bears from The Kids’ Cancer Project, and he was just so happy. He had been so sick for so many weeks and had almost died. That bear brought the biggest smile to his face and still sits in his room, watching over Ollie.”

*Chef Bear has since retired from active duty. See the full range here.

During clinic sessions, Rachel says, the children are allocated a bed or a chair. They’re told where to go and it’s all very impersonal and a little bit frightening. They’re already apprehensive and fearful and they’re not looking forward to what’s coming.

“Then, to have that teddy bear sitting in its box on the chair or on the bed, and it’s all for him, and he gets to open it up himself and find out what’s inside, he just loved it,” she says.

“They get so excited to receive something special, to have something cuddly to hold on to when they’re not feeling great. For ten minutes, they’re not thinking about all of the horrible things that are going to happen to them that day. It lifts their entire day.”

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