Emily Chapman Laing
Earlier this month four-year-old Liam and his mum Michelle received the best possible news: Liam’s cancer was in remission again.
But the family aren’t as celebratory as you might expect.
“It’s like a roller coaster, you’re excited because you’re back there, but also, it’s only been a week,“ Michelle said.
“How long can we stay there.
“I keep thinking, we’ve been here, and we relapsed.“
While Michelle is full of gratitude to see her son in remission for the second time, she is plagued by his relapse last year.
“Everyone says be positive and I’m trying, but it’s hard when you’ve been down this road and you see what happens.“
For Liam, Michelle said the label of “remission“ hasn’t meant much as far as he can understand.
“He’s still going to hospital appointments,“ Michelle said.
“So he’s like, if I don’t have cancer, why am I still going to hospital.“
During the Covid lockdowns of October 2021, Michelle noticed two-year-old Liam was starting to turn pale and was losing weight.
“But living with him, I didn’t see how much he was actually rapidly losing,“ Michelle said.
“Then he went off eating, drinking, everything and I thought, this is something major.“
Michelle made a call to Liam’s doctor, but was told she couldn’t bring him in for an appointment until they both returned a negative Covid test.
During a telehealth appointment later that day, Liam’s asthma specialist told Michelle to send her daughter Sienna to her parents, pack a bag and get Liam to Monash Children’s Hospital immediately.
“We went in and they started doing all these blood tests and not even 24 hours later they said they found a mass in his stomach and it was a tumour,“ Michelle said.
Liam was sent into surgery to have a line put in his chest, and started chemotherapy straight after to treat Stage 4 neuroblastoma- cancer on the adrenal glands.
“He went from 23 kilos down to 8 kilos,“ Michelle said.
“The tumor was just taking over everything, it was that big that it actually had to expand before declining down.
Michelle said Liam’s tumour started at his breastbone and went all the way down to his pelvis, taking up most of his abdomen.
With little room for the tumour to “blow up“, it began rupturing.
“He was getting internal bleeding because the tumour was bleeding out,“ Michelle said.
Liam was admitted to ICU and a short while later single mum Michelle received the devastating news: Liam only had 72 hours to live.
“Because of Covid I had to be in there on my own with no support person,“ Michelle said.
“I was literally still trying to get my head around the fact he’s just been diagnosed with cancer.
“And then it was like, well now you’ve got to prepare for the worst.“
Liam was intubated in ICU and received numerous blood transfusions.
“As fast as he was bleeding out, they were putting another bag back in,“ Michelle said.
“Then it got to the stage where he had a buildup of fluid in his lungs.
He wasn’t even stable enough to be moved to the theatre for surgery, they had to perform the surgery in the ICU.“
Michelle said after a tube was placed into a semi-conscious Liam’s lungs, litres of fluid and blood were drained.
“He was awake, but gone to the point where he didn’t even know who I was,“ Michelle said.
“I put my hand out to hold his hand and there was nothing.
“You could see he was petrified in his face, but it was also like he didn’t know who you were.“
Despite the odds being stacked against him, Liam pulled through, but both he and his mum were left with scars.
“I’m now traumatised of ICU because of what he went through,“ Michelle said.
“I didn’t even want to walk back into the room because it was like, I don’t know who he is, he didn’t look like my son.
“He lost that much weight he literally looked like a skeleton.“
The tumour had started wrapping around Liam’s insides, and the doctors couldn’t remove it until it shrunk enough to release his vital organs.
Liam underwent several rounds of chemo as well as 12 days of radiation.
His stem cells were harvested, then placed back in two stem cell transplants later down the track.
Things improved, and by August 2022, Liam was in remission for the first time.
However, the triumph was short-lived, with the cancer returning a mere month later.
“They found there were nodules in his liver and they were tumorous,“ Michelle said.
Liam was put through another round of chemo, combined with immunotherapy.
Between his initial hospital stay and his treatments following relapse, Liam has a hospital record all too long for his age.
Alongside the 12 days of radiation, Liam has had 22 rounds of chemo, 16 surgeries, 5 rounds of immunotherapy, “hundreds“ of blood tests and transfusions and 20 long hospital admissions.
“It really knocked him on some of the days,“ Michelle said.
Liam also suffered side effects.
A little known side effect of chemotherapy is the development of leukemia, according to Michelle.
“We were treating cancer with chemo, but then you also get cancer from it,“ she said.
“No only did we have to fight the nodules in his liver, but he was showing he had early stages of leukemia as well.“
Liam also suffers from hearing loss and weakness of the muscles as a result of his treatments.
“He’s four years old and pretty much lives in a pram, because he can’t walk for long periods,“ Michelle said.
“We’re looking at getting him a wheelchair.“
Michelle said Liam’s seven-year-old sister Sienna “suffered more than anyone“ during Liam’s hospital-heavy days.
“Even at the start, I told her we were going in for the weekend and we were still there six and a half weeks later,“ Michelle said.
“I didn’t get to see her, and it’s like, when you finally come out of hospital you’re sad as well.
“Every stay that we go into the hospital has been a long one, and she gets to the stage where she doesn’t want to be close to you anymore.“
Michelle said her heart would break each time Sienna would ask when she would see them again, and Michelle didn’t have an answer.
“Even if you say, okay, chemo only goes for five days, but then if his temperature spikes during those five days you could be there longer,“ Michelle said.
“It’s all these what-ifs.“
Sienna has been lucky enough to have her grandparents living right across the road, so she has lived with them on and off and been given the loving attention only grandparents can offer.
Michelle, Liam and Sienna are hopeful this remission will last and they will be able to stay together as a family.
To donate to Liam’s GoFundMe campaign, visit: https://www.gofundme.com/f/little-liams-neuroblastoma-journey
To follow Liam’s journey, visit: https://www.instagram.com/brave_little_liam
