Last year, Perth couple Kylie and Dave Bacon were hit with two life-changing surprises. The first, in February, was a happy little shock – an unplanned but not unwelcome pregnancy with a baby girl. The second was the worst thing imaginable. Lurking within their rambunctious toddler, Tommy, was a rare and deadly form of leukaemia. From the moment his blood test came back, the family was plunged into a scary and uncertain reality. There was a glimmer of hope: Tommy might survive if he received a stem cell transplant. But they needed to find a matching donor, and that proved more difficult than anyone expected.
Their remarkable story began in May last year. Dave was about to turn 40, and he and Kylie had booked a trip to the UK to see his family. As the date of the departure approached, they considered cancelling their flight. Tommy, then two-and-a-half, had a temperature, and “there was no way we were going to do a 17-hour flight with a sick toddler,” Kylie says.
She wasn’t worried, exactly. Tommy had been bringing home the usual maladies since starting daycare six months earlier, in November. He was an only child, and very gregarious, so as soon as he could talk Dave and Kylie enrolled him so he could socialise with others. “He was like a little celebrity. He’d go in there and wave at everyone, ‘Hi friends!’” Kylie says. “He’s never been a timid baby. He’s got a celebrity energy.”
As all parents know, childcare means illness. “He was picking up all the viruses and I was taking him to the doctor, and they were just putting it off as daycare,” Kylie says. “Whenever I would take him in with suspicious rashes it would just be put down to hand, foot and mouth or a this or a that.”
The morning they were due to fly to the UK, Tommy woke up “completely fine”. Kylie and Dave “literally packed everything last minute and went off to the airport”.
Tommy was a little quiet on the flight, but he was okay. “He just wasn’t drinking very much, which was a worry,” Kylie says.
When they landed in the UK, Kylie realised Tommy had tonsillitis. She could tell he needed to see a doctor. “I had a feeling he needed to be admitted for fluids or antibiotics. He wouldn’t even open his mouth for us, it was that bad. We literally landed, dropped off our bags and went straight to the walk-in centre,” she says.
The clinicians at the medical centre sent Kylie and Tommy to the hospital. “They nearly didn’t admit him,” Kylie says. “They were trying to send us home with oral antibiotics and I got a bit annoyed and said, ‘If you can get him to open his mouth we’ll take him home’.”
The doctor was trying to get Tommy to open his mouth when his boss walked past and wanted to know what on earth was going on. She looked at Tommy and suggested a blood test.
From there, things took a sharp turn. “Doctors were talking about it around me. I was picking up on the words they were using and kind of got the gist of it,” Kylie says.
“They were talking about his spleen being enlarged and his white blood cell count being high.” She didn’t want to accept what she was hearing. “I remember being in complete denial but just wanting what was best for him as well.” It was hard to believe her energetic little boy could be gravely unwell. “I was holding so tightly to the fact that maybe it was an infection.
“He doesn’t look anything like what you would imagine a sick child would look like,” Kylie adds. “That was the other thing. We kept looking at him going, ‘Have they made a mistake?’ He’s just been a robust little dude who bursts his way through life. Everything’s an adventure. Even blowing bubbles is this mystical wonder. You can’t walk down the passageway without going through a forest and fighting pirates.”
Sadly, it wasn’t a mistake. Tommy was transferred to the children’s cancer hospital. It was four days before they were given a definitive diagnosis, and it was not good. Tommy had leukaemia, and the doctors suspected it was a rare type called Juvenile Myelomonocytic Leukaemia (JMML), which affects only one in every 1.2 million kids that get cancer.
Within the diagnosis of JMML there are 10 subsets. “We had to wait six weeks for genetic testing to come back and tell us what kind,” Kylie says. “He was in hospital for 12 days in the UK while they were testing him, trying to get him over the tonsillitis, and then cold sores. He was an absolute mess.”
It was a horrific time. “The hardest phone call I’ve ever had to make was to call my dad and say, ‘Tommy’s got cancer’,” Kylie says. “The same thing for Dave. When he had to phone work and tell them he wasn’t going to be back for a while, he couldn’t form the words. He tried to say it and he choked up, and he tried to say it again. Then I heard him cry. He couldn’t put that into words for a really long time.”
Their doctors told them Tommy could begin treatment in the UK or come home to Perth. They decided to come home. “We landed back on a Friday afternoon and went straight to PCH [Perth Children’s Hospital] from the airport.” Tommy was “okay-ish” and he was allowed to spend the weekend at home, but by Tuesday he needed to be admitted.
“He had some kind of infection, and the cancer markers went through the roof. There were stress factors in his blood that showed a breakdown in his organs, so they were worried about that because that’s how the disease works.
“They said to us, ‘He’s going to have to have a stem cell transplant. He’s going to have to go into isolation and have chemotherapy’. It’s a big deal. So, we knew that he needed to find a match on the donor registry.”
A stem-cell transplant was their only hope for a cure, and they didn’t have long. From the moment the Bacon family learnt Tommy had JMML, the clock started ticking.
“With JMML they only have between 10 months and two years in terms of survival, and we didn’t know how long he’d been sick,” Kylie says.
Tommy had been developing rashes and other complaints since he started childcare but Kylie and Dave didn’t know which symptoms were caused by common germs, and which were caused by the cancer.
“The disease is so rare that nobody knew how it was going to go,” Kylie says. “Prognosis-wise he only had a 50/50 chance.” She read every medical paper she could get her hands on. “I had one screen open to read it and one screen to translate what it meant.”
The JMML subset Tommy had was PPTN-11, one of the most aggressive variants. “That wasn’t good news,” Kylie explains. “The good news we had was that there wasn’t a secondary mutation.”
Kylie and Dave made a conscious effort to focus on loving and supporting Tommy and to try their best not to get too distracted by what might lie ahead.
“Right at the beginning of the process we had to make the decision to love more than fear because if we had let fear get in the way, nothing good would have come of that,” Kylie says.
While she put everything into keeping Tommy safe, calm, comfortable and healthy, she also had to be mindful of her unborn daughter, who had grown now from that little blip on a pregnancy test in February to a proper bump.
“I remember writing an Instagram post: How do you choose between your children? How do you protect the one that you’re pregnant with and still be there for the one that needs you the most? I don’t know how to do this.”
Putting love before fear is easier said than done. “During the day it’s fine but those nights are long,” Kylie says. However, she and Dave had a task to keep them focused: helping to find Tommy a stem-cell donor. Kylie has been a registered organ donor for as long as she can remember but the stem-cell registry works differently. You can’t register to donate to a particular person.
At first, the doctors were confident they’d easily find a match for Tommy. He was a Caucasian male, they expected there would be plenty of options.
“But when they did the initial, local search around Australia, nothing was coming up,” Kylie says. “So, they’ve gone from saying, ‘Don’t stress, don’t worry,’ to, ‘Actually there are no options for him’.”
Frantic, Kylie and Dave started an international donor drive to raise awareness and to encourage people to join the registry. They were desperate.
As haematologist, Dr Gareth Gregory from Cell Care explains, once someone on the registry is matched to someone in need the process is relatively simple.
“The way that we can access stem cells from a donor can be from bone marrow, or more commonly, what we’re doing these days is collecting the stem cells from a drip in the vein, similar to when patients donate plasma at the Red Cross,” he says. “It’s quite a cool way of collecting the stem cells without actually having to do an operation.”
Once transplanted in Tommy, stem cells from a matching donor would help him grow healthy red and white blood cells and platelets, but the wait seemed interminable.
Finally came the call that the family had longed for. Tommy’s doctors had found a donor. A young male from overseas was a strong match. Tommy was booked in for a raft of tests, and more chemotherapy ahead of a transplant that would be followed by up to 12 weeks of isolation.
Kylie, who by now was quite heavily pregnant, was planning ahead. Their daughter was due at the end of October. The timing was good. Tommy would be through the majority of the chemo by the time she was born.
Then a week before Tommy was due to begin his pre-transplant chemo came another call. The donor had pulled out. The family was crushed.
“There was no explanation why. It’s all done anonymously. So, you never know the reasons behind it,” Kylie says.
But her date with her baby girl couldn’t wait. She spoke to her obstetrician, who agreed they’d induce Aria on October 12. “As we were going in to have her, we got a phone call saying they’ve got another match.”
The family had been jolted from hope to despair and back again. But as a failsafe, Kylie and Dave made the decision to collect Aria’s cord blood, which is a rich source of stem cells. It was a longshot, but perhaps she would be a match.
The day Aria was born, a Cell Care representative was on hand to collect her cord blood and test it. “They just zoomed in, collected her blood and disappeared. It was very unintrusive,” Kylie says.
For a brief period, the family was able to revel in the joy of their new baby. Tommy got to meet his little sister. He gave her a kiss and admired her pale pink knitted cap. He was due to begin his pretransplant chemotherapy when the family received yet more bad news. The second donor had pulled out. Tommy’s medical team said this had never happened to them before. The family was heartbroken.
They searched for a third donor but there were other worries now. Tommy was on his fifth session of toxic chemo. They decided to prepare Dave to be a haploidentical (or half-matched) donor. In the absence of a close match, this was Tommy’s only hope.
“I was worried because I didn’t have a good feeling about that outcome,” Kylie says. “Tommy had antibodies against Dave’s antigens. Either way, they would have had to transplant, or he’d have died.”
It was a tense time, but then came a call from Cell Care. They had tested Aria’s cord blood. She was a perfect match for Tommy.
From there, things moved fast. “They literally told us on the Friday and they were admitting him on the Monday.” Kylie says she was overwhelmed with “all of the feelings; all of the emotions”.
This type of donation is not intrusive at all. Aria didn’t need any procedures. Cell Care already had her cord blood.
Kylie and Dave threw an early Christmas party, because Tommy would be in hospital over Christmas. “Those memories are really beautiful but you’re going through them thinking: Is this our only opportunity to have our family together for something like this?” Kylie says.
On November 22, Tommy had his transplant. The following days and weeks were a heart-stopping wait to see if he responded. Within 10 days his cell count started to come up. Sixteen weeks later he was completely clear of cancer. Kylie says there are no words to describe what it was like to receive that call. They were overjoyed.
Aria arrived in the world when she was needed most. “She managed to hold on through all the stress we were going through and came into our lives and literally saved her big brother,” Kylie says. “It’s just beautiful.”
And Tommy couldn’t have been braver while he waited. “He led from the front,” Kylie says. “We would have been absolutely broken without him. He showed us how to do it.”
Despite everything he was going through, he never lost his curious, adventurous, caring spark.
“I remember I went in there one day and his hair was falling out. He was on three really hectic painkillers to try and keep him comfortable, and I sneezed, and he said: ‘Mummy are you sick?’” She laughs. “I said, ‘No baby I think I’m going to be alright’.”
With this type of cancer, there are no certainties. For now, Tommy is healthy and enjoying his new role as a big brother. Kylie and Dave are revelling in normal family activities while marvelling at their daughter’s strength and their son’s courage.
“He’s always just lived right at the front of his life. Full speed ahead. He’s never been scared. People couldn’t believe how resilient he’s been. How happy he was. He’d do a thumbs up, and he’d tell us: ‘Tommy brave’.”
To learn more about cord blood storage, visit Cell Care at cellcare.com.au To register to be a bone marrow donor, visit abmdr.org.au
This article originally appeared in the October 2024 issue of The Australian Women’s Weekly. Pick up the latest issue from your local newsagent, or subscribe so you never miss an issue.
