Retinoblastoma Week

Retinoblastoma Week

This mum has been fighting for her son’s life and winning.

How do you react when a respected doctor who has operated to save your child’s life several times tells you your son only has a five per cent chance of survival? Alison Johansen remembers a lot of tears as well as a peculiar physical reaction – her skin became prickly and hot. But then her well-developed fight response kicked in.

"He said the cancer had come back and had breached the blood and tissue barrier into Josh’s brain,” Alison recalls.

She’s still unable to discuss the conversation, which took place five years ago, without her voice becoming wracked with emotion.

"He said we could put Josh on medication to make him comfortable and he’ll die in six to eight weeks. I said that until I’m told there’s nothing at all that we can do, I will fight. The doctor (Dr Luciano Dalla-Pozza from The Children’s Hospital at Westmead) agreed." "He said that knowing what we’d been through already and how much we had already fought, one more fight was definitely the way forward.”


Retinoblastoma diagnosis

Josh is now a teenager, but when he was just five weeks old, mum Alison was looking at photos and noticed, in several of them, a golden reflection coming from his left eye.

She knew this was a common sign of a deeper problem, so spoke immediately with midwives, a paediatrician, a GP and finally with specialists at The Children’s Hospital at Westmead. They found a tumour the size of a 50-cent piece and as thick as two coins. It was retinoblastoma, a rare form of cancer that forms, typically in infants, in the light-sensing area at the back of the eye.

Josh’s left eye was removed when he was nine weeks old. Six months later small tumours were found in his right eye. Saving that eye took five years of chemotherapy, laser treatment, cryotherapy and radiation, which resulted in two years of remission. But then a cancerous, golf-ball sized lump developed in his neck, and later a mass at the base of his skull which specialists eventually identified as another different rare cancer.

Seemingly endless weeks, months and years of intensive chemotherapy followed, with positivity and hope always crushed by more cruel news. Finally came the conversation with Dr Luciano.

“A five per cent chance of survival was enough for us,” Alison said. “Josh went straight into another six months of intensive chemotherapy then had a stem cell transplant. He was so sick. I have photos of him that are just horrible. When he was asleep he looked like he was dead. He had ulcers from his mouth and right through his digestive tract. One day he coughed up the lining of his oesophagus.”

But Josh took that five per cent chance of survival and ran with it. August 2018 was the fifth anniversary of his stem cell transplant.

“The sad thing is, it actually didn’t have to be this way for him,” Alison said. “With retinoblastoma they can now test in utero and can induce the baby earlier, meaning treatment can be started early so the eye can be saved.”

Science. Solutions. Survival.

Of course, doctors are also constantly learning about new treatment options, and researchers are doing vital work to understand how and why cancers develop in children, including new and rare forms such as those that Josh has suffered. In fact, Josh’s case study has been discussed at major medical conferences and has been written up into academic journals, in order to educate other specialists around the globe.

“Fourteen years ago I donated Josh’s eye to a research facility because if there is a way for researchers to find new ways to treat this cancer, then it is worth absolutely everything,” Alison said. “Josh is only 14, but he has shown doctors that there are unique ways to treat rare cancers, and that is a positive from his long journey so far.”
"How did I get through it? Actually, I don’t know. I never looked backwards and always stayed very positive. I ignored trivial things. Josh showed me that even when there’s only a five per cent chance, there is always a positive to be found."

The Kids’ Cancer Project thank Alison and Josh for sharing their story and Chris Sheedy for writing it.

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