General News
5 September, 2025
Family’s blood cancer story far from a strictly clinical outcome
EARLY September has a special and bittersweet significance for Horsham's Amor family, with the seventh day marking both the wedding anniversary of Angela and Anthony, but also the date in 1992 when they walked away from delivering their eight-year-old son, Justin, to the Royal Children's Hospital, with the gravity of his blood cancer diagnosis only just becoming fully manifest.
What they could not have known was how the crisis would mature their family, impact the broader community, help accelerate the adoption of better treatments, and possibly play a crucial part in bringing a cure for the condition.
Justin said the events leading up to that day were "a bit of a complicated story", starting one day with his mother as a nurse noticing lumps on his neck while he was watching TV and taking him to the doctor to get it checked, who "thought it might just be something glandular".
But that wasn't the end of the matter.
"We don't know exactly the amount of time later, but one morning, a huge lump about the size of half an orange was just on the side of my neck," Justin said.
"I woke up, and all of a sudden, things started to get a little bit real."
Following blood tests and a biopsy, the doctor organised to send him to Melbourne for further testing, and the sudden increase in visitors to his home and the trio's aforementioned arrival on the sixth floor of the RCH filled with "kids with bald heads … hooked up to drips" raised the level of significance for him even further.
Justin said he remembered thinking, "Yeah, this was cancer, and we were going to be in for a bit of a fight".
Reeling from the official diagnosis of acute lymphoblastic leukaemia, his parents hadn't properly considered the date, so it wasn't until they were heading to Ronald McDonald House, where families of sick children from a distance get to stay, that they ponderously wished each other 'Happy Anniversary'.
But perhaps if they knew the positive outcomes that have emerged since that day, they might have exchanged the wishes differently.
For the effects of their son's ultimately successful battle have continued to expand decades later, resulting in his tough life-valuing mindset and the career choices of his bone-marrow donating sister, Gerlinda (pronounced ja-linda); both their lives became an inspiration and help for countless others in the long term, and the story is far from over.
Decades later, Justin has been involved with a long list of community roles and fundraisers, including the Horsham and District Relay For Life, Ronald McDonald House Ride for Sick Kids, 14.8km Run for Kids, coaching footy and cricket, and working as a local rural outreach diversion worker; this barely scratches the surface of his relentless energy to give back.
Additionally, Gerlinda's journey has followed a closely related medical field: she is now a clinical trials project manager in Brisbane for a company heavily involved in blood cancer research.
She has reported that there is significant scope for further improvements in treatment.
She had no hesitation in describing her brother as "a superstar", acknowledging "he puts in so much heart into everything he does".
Justin's blood cancer journey
The path to Justin's recovery was not as straightforward as hoped.
His first battle with leukaemia propelled him through several long chapters of treatment on the road to recovery over the next two years or so.
Still, after about 18 months of remission, he suffered a major setback at 13 – the cancer had returned.
Justin reflected on how the relapse was a hard moment for him: "As a young person [I was] just heartbroken, knowing the amount of needles and things like that that I had in the first time around".
"My first thoughts were (of) having to go through all that again," he said.
"I'd probably heard or picked up that having a relapse might not be the best outcome, indicating the likelihood of survival ... decreases as people relapse and all that sort of stuff.
"But getting the reassurances from mum and dad and from the doctors that there were treatments (and) pathways for us to try and ultimately get the best outcome was a big thing."
In the intervening years since his first diagnosis, bone marrow transplants had become more common – hence why it hadn't been offered to him earlier.
"As a mainstream treatment, it was still emerging at that stage, and probably wasn't as widely used," Justin said.
When his sister was identified as a close match bone marrow donor – a treatment that she remembers well – she jumped at "the opportunity to help Justin", despite the potential negatives of the procedure.
"I don't remember being informed in terms of being painful," Gerlinda laughed.
"I (also) don't think anyone ever talked to me about how I would feel if it didn't work, but that was something we tried not to ever think about – (the family) all stayed positive.
"(The hospital) gave me a morphine drip – I do remember when I came to, they said, 'if you're in pain, press this button'… I remember just holding the button down!
"They said, 'No, no, no, it'll only let you have some every four hours.'"
Marking a match
The odds of Gerlinda – along with older brother, Paul – being such close matches to Justin were statistically rare; family members of blood cancer patients – typically siblings, if available – are checked for six markers from the HLA (human leukocyte antigen) system – basically the molecular 'name-tags' every cell 'wears' so the immune system knows how to identify something biologically 'self' from something foreign.
Both Gerlinda and Paul were 'six out of six' – a great result – but Paul was ruled out after an antibody test revealed exposure to cytomegalovirus, which has the potential to create problems for the weaker and immunosuppressed recipient, as dormant CMV can flare into pneumonia or other serious conditions.
Another interesting coincidental detail was that a year earlier, Gerlinda had done work experience at the very same lab that would be processing her donation.
She recalled the doctor explaining after the operation how it had been a little more challenging than usual to get enough bone marrow from her hips – a secondary consequence of Justin being 'beefed up' in the weeks leading up, taking preparatory drugs that were giving him an enormous appetite.
"(The doctor) showed me his blisters that he had on his hands from trying to extract the bone marrow out of me," Gerlinda said.
"(Justin) was having like 14 Weet-Bix a day, and he got more on the 'chunky' side.
"He wasn't your typical sick-looking, pale, leukaemia child."
Justin admitted he was scoffing down food at every opportunity, adding "a couple of bits of toast before going to school", "a fair bit of food" at recess, two-sandwich lunches, more cereal back at home, two servings of dinner "and then be looking for some sweets afterwards, having the predictable cumulative effect.
"(Mum and dad) nearly had to lock the fridge," he laughed.
Gerlinda's time in the operating theatre, therefore, took a little longer.
"So they actually tried to extract more bone marrow from me, because it's like a weight, volume type (of) thing," she said.
"I think they took a litre and a half out of me, which I don't think they normally take that much."
Why bone marrow?
Red blood cells are produced in the bone marrow, where hematopoietic stem cells reside.
Still, suppose the five to seven-day process sustains certain mutations (and the long list of causes includes ionising radiation, Hepatitis C, cigarette smoke, rare genetic disorders that run in families and chronic pesticide contact).
In that case, the corrupted cells continue to divide uncontrollably and eventually crowd out their healthy counterparts.
The result is usually a combination of anaemia (fatigue, breathlessness), infections (too few or poor-quality white cells) and bruising/bleeding (too few or defective platelets).
Justin explained the benefit of replacing the stem cells, which advanced the medical treatment protocol from a simplified "kill all the bad cells" approach to additionally "giving you new building blocks in your body".
The days following the operation were also difficult for the family, with the siblings' grandmother passing away on the same day; Gerlinda made it to the funeral, but Justin had to miss out – just one of several events the recovering teenager would have to sit out for a long time.
"My dad's mum passed away pretty close to the time that they hooked up my sister's blood," Justin said.
He said isolation defined his life for the next 10 months, whether he was at home - "no visitors outside of the immediate family" - or going back to the hospital for appointments.
The frequency of the Melbourne appointments became the most obvious marker of his restoration over the next few years, decreasing from twice a week to once, and progressively lessening the burden on his parents.
"Then it sort of went out to once a month, and over time, as results and all those sorts of things continued to improve, the space just got longer and longer," Justin said.
Research continues
Justin said his journey has strengthened the bond among all family members, and he has especially continued to watch his sister's subsequent career path with great interest, understanding that her blood cancer research work had their connection as "a major driver" for her to push for a cure.
"She's got that first-hand experience of seeing the impact that it can have on families," he said.
Gerlinda admitted, "We have a pretty special relationship", and in remembering how tough some parts of the treatment at the time were on her brother, said she would love to see ongoing improvement in outcomes for others.
"Seeing what Juddy went through – we met a lot of families through Ronald McDonald House as well – and through seeing that and meeting the nurses and doctors … that gave me my inspiration of what I wanted to do."
Her career ironically took her back to the RCH bone marrow transplant lab yet again, following her years at Adelaide University, and she has also spent time in London, where she increased her involvement in clinical trials and research.
In Brisbane now for seven years, the company Gerlinda works for (QIMR Berghofer) is in the process of reaching out for people living with blood cancer to be part of a new study that is surveying "a comprehensive gene panel" searching for mutations, with the goal of better matching a range of treatments to specific mutations, rather than a one-size-fits-all treatment.
The study has enrolled almost 200 blood cancer patients to screen another 200 on the Molecular Screening and Therapeutics in Leukaemia and Lymphoma (MoST-LLy) study.
"We are offering genomic screening to patients with blood cancers, testing over 500 genes, and looking to link patients to new treatments and clinical trials based on their genetic profile," she said.
"We are supported by the Leukaemia Foundation and Tour de Cure as well as a MRFF (Medical Research Future Fund) grant.
"It's increasing the blood cancer knowledge, as well as trying to offer patients novel or targeted treatments at the same time.
"It's a win-win – for patients (as) they might have an extra option they didn't otherwise have, and then we get that information, and we can hopefully help patients in the future."
With September being Blood Cancer Awareness Month, she said it was worth promoting the ongoing work as part of a bigger picture where many researchers are "all working together on the one goal" and sharing new information regularly.
However, the personal aspect remains very real for her, and Gerlinda admitted that her own donation history has sometimes made her emotional at work, as the occasional direct connection with those who have experienced their own battles isn't just an intellectual research matter.
"If they're telling me their stories and they're crying, I'm telling my story and I'm crying and I still can't talk about it very often without welling up," she said.
Justin said the family closely follows the work she is involved in, whether it involves more funding, approvals, or expansion of studies to new locations.
"We celebrate all those little milestones with her knowing that the more people that they can get involved in the studies, the more information that they have, will hopefully lead to better treatments in the future," he said.
"We're just super proud of the work that she does."