“I don’t want you to get sad Mummy, but sometimes I think it would be easier if I died.”
Noah Johnson is 12. He shouldn’t be thinking about death.
But in his darkest, desperate moments, this beautiful boy, racked with unbearable pain and consumed by debilitating, gut-wrenching sickness, he can’t think of anything else.
Cancer does that.
Noah has been in a mental and physical battle since doctors told him, his mum and stepdad, he had this thing called ewing sarcoma seven months ago.
Over the unimaginable days since, Noah has had 14 rounds of chemotherapy and 31 rounds of radiation.
His treatment causes fevers, which ends in more hospital visits.
And then there are the blood transfusions, the platelet transfusions and the dressing changes.
To add to Noah’s pain, the radiation has left him with a third degree burn in the middle of his back the size of a small dinner plate.
Doctors say that he is the first person to suffer such a side-effect in a decade.
“It’s like a sunburn,” Noah’s stepfather Adam Jenkins said.
“I’ve never seen sunburn like that. It was just red raw, inflamed. And right between his shoulder blades, so he couldn’t lay back, he can’t twist, move, he’s just sore.
“That’s when he was at his worst. His body was fighting the radiation burn and the chemo and that’s when he just wasn’t eating, he lost all his weight, he had the NGT (nasogastric tube).
“So his body was fighting on two fronts, and he just had nothing in the tank.”
That was when Noah had to start using a wheelchair full-time “because he just didn’t have the strength”.
You could see all his bodyweight going,
“You could start to see down his spine, and his shoulder blades were really exposed because there was just nothing left on him.”
It was March this year when Noah was told he had cancer.
His mother Kristy Johnson tells how he started to complain of a sore shoulder — mostly at bedtime.
“We just put it down to ‘he doesn’t want to go to bed, he doesn’t want to go to school tomorrow’, or ‘he’s hurt himself on the monkey bars’, which is what he always did,” she said.
“He’d come back with calluses on his hands and I’m like ‘you must have pulled a muscle or something’.”
A couple of weeks went by and Noah was still in pain. So Kristy took her son to a doctor who misdiagnosed him with bursitis.
A couple of months later, another diagnosis. This time a possible cyst.
A four-week follow-up scan was ordered and the news was broken to them at Perth Children Hospital that Noah had cancer.
“Kristy broke down,” Adam said.
“It’s that feeling where your stomach just goes up into your throat like you’re going down a rollercoaster.
“Noah — he was in the room. He was confused and one thing that really hurt was that he got emotional straight away.
“And one question he asked was, ‘Am I going to die?’
That was the most confronting part of it — having a kid who should be out on the monkey bars asking questions such as if they are going to live or die and what’s going to happen.
Kristy added: “I don’t think anything could prepare yourself for that at all. Even walking into oncology, you’re not prepared for it.”
She calls Adam the “tin man” because of his stoic nature.
But walking through the doors of PCH’s oncology ward for the first time, even he was brought to tears.
Outside the ward was a little girl ringing a bell. It is a tradition at the hospital, a special celebration saved for when a child has finished their cancer treatment.
A sliding doors moment — one of happiness, of hope, for one child.
But for Noah, his journey was just beginning.
Kristy has seen changes in her son — who was 11 when he was diagnosed — during his treatment.
She is proud of his resilience.
He has an aurora about him and the ability to have a room in stitches. His mum says humour is his love language and he uses it, at times, to mask the reality of his situation.
“He’s got resilience, but I think it’s damaged his confidence in a sense too,” she said.
“He’s not as confident or outgoing as he used to be.”
Two months ago, Noah, whose weight dropped to 35kg at his lowest, had grown so weak and lethargic that his parents had to carry him out of the car to his bed. He was getting exhausted just going from his bedroom to the toilet.
“He fell to the floor going from the kitchen to the bedroom, he couldn’t stand anymore,” Kristy said.
When Noah started losing his hair, Adam decided to shave his off too, so that he would not be in it alone.
Those moments have been terribly difficult for the family. The darkest came when Noah told his mum that maybe it would be easier if he died.
“I don’t want you to get sad Mummy, but sometimes I think it would be easier if I died,” he told her.
In Noah’s words, his journey so far has been “horrible”.
“It’s a living nightmare,” Noah said.
“Because you have to taste everything they put in. Because it takes six days for us to get out (of the hospital).
“And then sometimes even longer if I get a fever or something. I’ll stay there a whole week. And then longer, and longer.
“One time, we basically stayed there the whole time until the next chemo.”
What does he miss the most?
Going to school. Being active and hanging out with his mates.
“I could walk for a long time,” Noah said.
“I could run. I could jump. I could swim. I could enjoy.
“I could not be bored and go out and do something. I could see all my friends and go to school.”
One thing Noah cannot wait to do again when he gets better? “Swimming,” he said, because, “it’s peaceful”.
Ewing sarcoma is the second most common type of childhood bone cancer and usually appears between the ages of five and 15. It is most common in boys.
In Noah’s case, there is a 75 per cent chance of survival.
“In terms of Noah, his cancer itself is showing good signs that it is reducing and the chemotherapy is reactive and doing what it’s meant to be doing,” Kristy said.
Noah’s situation is confronting, but it’s not unique. There are thousands of sick kids across WA right now with similar stories.
And it is those kids who should inspire us this weekend to donate to Telethon so they can all have brighter futures — and maybe one day, not have to suffer at all.
Noah’s family is grateful for the support it has had, particularly from the organisation Sock it to Sarcoma and the Kids Cancer Support Group, a Telethon beneficiary.
Becky Sinnatt, from the charity’s peer support program, has been supporting Noah and his parents and knows their battle well — their son was diagnosed with anaplastic large cell lymphoma when he was 18 months old.
“I think these kids just have all their normality ripped away from them,” Ms Sinnatt said.
Asked what their hopes were for Noah, both Adam and Kristy were united in their responses.
“Just to be normal, not to let this restrict who he can be and what he can achieve,” Adam said. “Just to see it as a dark chapter in a long book.”
“I just want him to be healthy,” Kristy added.
“At the end of the day, that’s what every parent wants.
“I just want him to be able to go out and play soccer like he wants to. To build those connections with his friends. And not to have to worry about someone sniffling as they are walking past him.”
And there is a moment they both dream of. The day Noah gets to ring that bell.
“I cannot wait for that day,” Adam said.