As a father, I feel like it’s my job to make sure my son gets to 18.
- Paul, Jack’s Dad
Jack was three when he was found to have a rare cancer growing in his brain. Known to be both strong-willed and stubborn, he amazed his parents with his strength, resilience, and capacity to remain calm during the months of treatment that followed.
Pre-diagnosis
Jack was an active little boy, on the go all the time. His mum, Kristen, describes him as ‘very outdoorsy and very sociable’ and says he was ‘living his best life’.
‘Life was pretty crazy, because we had Jack who was three, and we had Finn who was one. Jack is a pretty oblivious, do what he wants kind of kid. He’d be outside, see a bird, and run off to chase it. I’d be that mum in the park screaming to come back!’
Jack’s dad, Paul, was working full-time as an electrician, while Kristen was working four days a week in the Public Service. The couple had plans to scale back so they could start enjoying more time together as a family.
Symptoms
It had been a rough year, with the boys constantly sick. ‘It felt like it was Finn and then it was Jack, and then it was Finn and then it was Jack. I had at least four months where I did not work a full week because one of them was sick,’ recalls Kristen.
Jack had been very lethargic and had started to have a nap every day, which went longer and longer. It then became difficult to wake him. ‘Daycare would tell me, “He was just outside playing, then we found him asleep on the grass.” And that’s not Jack at all.’
All of a sudden, he grabbed his head and laid down on the floor and said ‘My head hurts’
Kristen, Jack's Mum
One night when the family were at a friend’s house for dinner, Jack went from being happy and playful to not wanting to eat. ‘All of a sudden, he just grabbed his head and laid down on the floor and said, “My head hurts. It hurts too much.” And I said to Paul, I don’t like this. We’re taking him to hospital.’
Jack was put under observation but after about 10 hours, with no further symptoms developing, he was sent home. Kristen and Paul were advised to bring him back if there were any other issues. When Jack had head pain the next night, followed by vomiting first thing in the morning, Kristen took him straight back to the hospital.
Eventually a CT scan was done. ‘They told us it looked like there’s something there,’ says Kristen. ‘Then they said Jack was to be taken to Sydney, but they couldn’t say when. Nobody could tell us anything; we just had to wait.’
Diagnosis
At Sydney Children’s Hospital, Jack went in at 10 o’clock that night to have an MRI.
‘I had a social worker come to talk to me, I had the surgeons coming to talk to me, I had ten different doctors coming to talk to me,’ says Kristen. ‘They were shaving Jack’s head to stick dots all over it. It was so overwhelming. I was trying to focus on what everyone was saying while also wanting to keep calm and happy for Jack; the last thing I wanted was for him to be worried.’
The next morning, Jack went in for surgery and a biopsy was taken from a mass in the pineal region of his brain. Kristen and Paul were told that it was most likely a cancer called rhabdomyosarcoma, and that the cause was unknown.
Because it is very rare for that type of cancer to grow in that part of the brain, there was concern that Jack’s mass was not a primary tumour, but was due to the spread of a cancer growing elsewhere in his body. Fortunately, those fears turned out to be unfounded.
Through the Zero Childhood Cancer Program (ZERO), Jack’s cancer was analysed and found to be a primary rhabdomyosarcoma tumour caused by a genetic mutation known as a DICER1 variant. This definitive diagnosis allowed his doctors to determine a suitable treatment strategy.
‘What Jack has is extremely rare,’ says Paul. ‘I don’t believe there were any other cases in Australia. We were very lucky they could diagnose it so quickly and work out the best treatment to give him.’
Surgery
While it was clear Jack would need surgery to remove the tumour, it wasn’t considered urgent. Paul says that by the time the operation went ahead three weeks later, the tumour had almost tripled in size.
‘At that point, the oncologist sat us down and told us that we’d be here for at least six months, and that we’d need to do chemo, radiation, and further surgeries. Apparently, though, it was good thing that the tumour was growing so quickly because it meant it would react to the chemotherapy.’
Jack recovered quickly from surgery, and was soon bouncing off the walls. ‘He woke up the happiest boy I’ve seen,’ says Kristen.
Treatment
Jack began chemotherapy to shrink the tumour. This was followed by a second operation, during which the surgeons removed as much of the tumour as they could. Unfortunately, one of Jack’s optic nerves was slightly damaged, resulting in one eye appearing slightly offset, though luckily, he retained full vision.
Jack also experienced tremors for a few weeks after surgery. ‘I found that really confronting,’ shares Paul. ‘I realised he’s not going to be the same kid at the end of this, and that haunted me for weeks.’
‘We didn’t know at that point whether he was going to survive, and it felt like even if he did, he was potentially going to have significant lifelong implications. In my darkest moments, I thought: how fair is it, if he’s left with all these disabilities? That was probably the lowest point for me.
It felt like we’d lost Jack… like whatever there was at the end was not going to be Jack.
Paul, Jack's Dad
Challenges
All in all, Jack had nine surgeries — a biopsy, two resections and six shunts — as well as six rounds of chemotherapy and six weeks of radiation therapy.
Kristen says that while Jack was ‘amazing’ during treatment, he did have his moments. One of the worst times was when he was on steroids, commonly associated with uncontrollable hunger and aggression. ‘He went from 16.4 kg to 24 kg. He got enormous and he was sweating a lot. He’d be eating and eating and he’d yell at you about what he wanted to eat next,’ she shares. ‘It was heartbreaking.’
The biggest challenge of all, though, was radiation therapy. Rather than have Jack go under a general anaesthetic every time, Kristen decided to try and prepare Jack mentally to go through the therapy without going under. ‘It was really, really tough, but we did it.’
Paul says he will be forever grateful for Kristen’s efforts. ‘I can’t thank her enough because it saved Jack 28 general anaesthetics. And I couldn’t have done that.’
More Treatment
When Jack’s radiation therapy ended, a decision was taken to fast track his treatment because he was doing so well. This meant starting chemotherapy again straight away. This time, however, the going was tough.
‘Each cycle, he didn’t recover as well, he got a little bit worse,’ says Paul. ‘At the end of the fifth cycle, he got a high temperature and had to stay in hospital for six days.’
‘We were told he either had to do six or eight cycles, and we were like, please don’t let him have to do eight. Where is the line and when is it too far? We started thinking: we seem to be on top of the cancer, but what’s the risk of the chemo… is that going to kill him?
We started thinking: we seem to be on top of the cancer, but what’s the risk of the chemo… is that going to kill him?
Paul, Jack's Dad
At that point, Jack’s oncologist recommended doing another operation to remove whatever of the tumour was left. Paul and Kristen struggled with the decision, eventually deciding to go ahead. After a difficult few weeks waiting, they received a phone call on the same morning the operation was scheduled.
‘I was on my bike trainer trying to clear my mind, and our surgeon calls,’ says Paul. ‘He said the MRI had come back clear, and they weren’t going to do the surgery. In the blink of an eye, we were back at home, having a barbecue in our garden. It was amazing!’
Today
With treatment now finished, Jack is getting on with life. He has had his central line removed, and will return to hospital regularly for scans to check for any signs of cancer, starting this month (December 2023).
‘I know I’ll get very anxious before that,’ shares Paul. ‘But then the next time, three months later, it will be a little bit easier, and then after we reach that one-year mark it will get easier again. I guess you work out how to deal with it.’
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