Mum of child cancer patient - it's 'brutal' but we have to talk about it

Young Aston was diagnosed with leukemia in March 2021 when he was just two years old.

On Jessie Watson's 33rd birthday in March 2021, she was told her then two-year-old son had cancer.

Only a few days before, she'd learned she was pregnant with her third child, a baby girl.

The wave of emotions she felt was indescribable.

She told 1News: "It should have been the happiest time of my life."

Her son, Aston, had taken a fall on a trampoline just a month earlier and became unable to bear any weight on his leg.

She took him straight to Waitākere Hospital and doctors decided to put his leg in a cast. He was discharged with a visit to Starship booked for 10 days later.

Jessie said: "We knew it wasn’t broken but it was sore for him."

At their follow-up, X-rays didn't show a break so the cast was removed and doctors watched him in a playroom for a while before giving the family the all-clear to go home.

Jessie was given a phone number to call if any other further problems were to arise.

Aston has one more round of steroids and another theater visit to get through after countless treatments over the last two-and-a=half years.

That next week, Aston fell twice at home and Jessie got the sense something wasn't right when she noticed he was still struggling to walk.

She called the number and booked to take him back up to the hospital where doctors decided to run his bloods.

Jessie was told they'd be including a test for leukaemia as a precaution but not to be alarmed as his first results hadn't indicated anything was seriously wrong.

She said: "The result came back clear but the next day they put his blood under a film.

"They rang to tell me I needed to go back to Starship as they'd found blast cells. I said 'no, you're mistaken, the leukaemia test is negative'. They said they didn’t know what it was but I’d needed to go back to Starship.

"Starship called within about 10 minutes and instructed us to come to level seven for bloods the next day.

"I looked up what level seven was at Starship and it confirmed it all for me - it was the cancer and transplant ward. I immediately Googled the entire internet and realised he might have leukemia. I knew that I was walking into a cancer diagnosis the next day."

 He puts on a brave face for his chemotherapy daily rounds or tri-monthly lumbar punctures.

At Aston's appointment, Jessie's heartbreaking presumption was confirmed.

She said: "They basically look at you both and ask 'what one are you are quitting your jobs?' Because it's a full-time role.

"One minute you'll wake up and it seems like your day is going to go fine and the next minute they're vomiting, borderline dehydrated and you're being admitted through ED. It can change so quick."

But her "stubborn” little boy was born a fighter. He puts on a brave face for his chemotherapy daily rounds or tri-monthly lumbar punctures.

He's known at Starship for carrying around vehicles from the Cars movies. He's collected over 150 of them because he gets one for every clinic appointment, theatre visit, blood test, chemo, X-ray, heart echo test or port access, which is placed under the skin to draw blood and give treatments, such as chemotherapy and antibiotics.

Jessie says watching Aston's health decline has been beyond hard but is so proud of how he has pushed through

His dad Craig said: "A two-year-old doesn’t understand being hooked up to a pump via his port at all so we came up with a way to make it less scary by telling him he gets a car.

"We now have a basket that overflows and is too heavy to carry. The staff know when they find a Disney car that it's Aston who has left a trail."

Aston has six months left of his treatment plan, which all up has been about two-and-a-half years. There’s one more round of steroids and another theatre visit to get through.

Bringing him into remission is relatively quick - but the relapse rate threatens to be another kick in the guts - about 10 percent will have to fight their battle all over again.

The family has had countless trips to Starship emergency and a few admissions onto the ward over winter while contending with the pandemic, lockdowns, and sickness at an all-time high.

A temperature for an oncology child is a medical emergency and the family is required to reach Starship within the hour.

Some days are tougher than others. Aston thinks that if he leaves his shoes on he won’t have to stay the night on the ward, so he sleeps with his shoes on anytime he’s admitted and refuses to take them off.

Aston has six months left of his treatment plan,

Despite the incredibly challenging times, Jessie says the unsung heroes within the oncology team, emergency department and on level 7 have made the world a better place.

She said: "It seems like none of them have a bad day - they are always so calm and happy.

"Our oncologist delivered the worst news in the best way. The nurses have a way of catering to the most wild needs of our particular four-year-old."

Jessie's move to share her experience with her son's cancer isn't an attempt to draw sympathy. She wants to paint a picture of the reality parents of children with cancer face.

She feels there is a misconception that cancer only happens to sick kids. And that paediatric oncology is rare.

She said: "Once you're in this world it really doesn’t seem that small at all. And no one wants to be the small percentage that doesn’t make it. There are so many kids fighting this fight."

The family has had countless trips to Starship emergency and a few admissions onto the ward over winter.

In New Zealand, more than three children are diagnosed with cancer each week. One in five children who are diagnosed with cancer in Aotearoa will not survive.

Aston's doctor says his prognosis was strong — around 90 percent.

She feels there's more to be done in getting the message across that these families need support, hospitals need more resources and research is vital.

"I think children with cancer are almost taboo to talk about because it’s confronting and uncomfortable," she said.

"There’s more to be done. We need more awareness. The gold ribbon is for these kids. I want to walk into a store and see gold ribbons being sold like we do pink ribbons. I want to turn on the radio and hear them say it’s childhood cancer awareness month."

At first, Jessie, like many others, kept her son's cancer journey totally private - but she now sees that her voice can help bring understanding to those who have no idea what it's like.

She said: "I never wanted him to be the kid with cancer or known as the cancer family. We hid it from everyone until September 2022 - which is Child Cancer awareness month.

"But I’m a strong believer that you have to try and leave something better than how you found it."

Aston's mum and dad have been behind him the whole way.

Jessie says child cancer is "brutal" - but not talking about it is only making more people suffer in silence while desperately-needed funding opportunities go elsewhere.

With no known causes and no prevention, research matters. She says it's kids like her son who don't stand a chance unless more can be done to find out why this disease preys on otherwise healthy, nourished and adored youngsters.

She said: "It’s a fight our youngest and most vulnerable shouldn’t be fighting - we need to talk about it because it’s a silent fight.

"I dream of a cancer-free life but the reality is that we will all be touched by this beast at some point in our lives. But our kids should be off-limits.

"It takes a village to fight childhood cancer and by getting Aston's story out there, I'm hoping to grow this community, not just for Aston, but for every child and family affected."


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