How do you tell your wife, the mother of your children, that your son’s got cancer?”
- Matt, Jacob’s dad
Life was good for Jacob, his little brother Joshua, mum Dani, and dad Matt. They were a happy and tightknit family who loved spending time together. Jacob had only just ‘graduated’ from daycare and was excited to be starting school the following year. Then came a diagnosis that would change life completely.
Before diagnosis
At 4 years old, Jacob was big and strong for his age, and was a typical boy: into cars, dinosaurs, football, swimming, and running around with his mates. His dad, Matt, describes him as “the loveliest child”… very friendly and happy.
Matt recalls reading a story about a child sick with cancer, just a week or two before Jacob’s diagnosis, and turning to his wife, Dani, to say ‘aren’t we so lucky to have two big, healthy, strapping boys?’
I had no idea what was coming. Absolutely no idea.
- Matt, Jacob's dad
Symptoms
On the Tuesday before Christmas, Matt was working when he heard screaming. He found Jacob in bed, writhing in pain. Dani took Jacob to hospital, but by the time they were through emergency, he had settled down.
On Christmas Eve, Jacob wasn’t looking at all well, and Matt decided to take him to the local hospital for some tests. The results were concerning, and Matt was advised to take Jacob to Westmead Children’s Hospital first thing the next day − Christmas Day. There, blood tests were done, and initially, a bone infection was suggested as the likely cause. However, after a bone scan a few days later, it became clear that Jacob had cancer. “That’s when everything changed,” says Matt.
Diagnosis
The following day, Jacob had a bone marrow biopsy done so a specific diagnosis could be made. To complicate things further, Matt tested positive for Covid-19. Matt’s 1st concern was that Jacob might have it as well, complicating things further, and his second was that he might not be able to stay with his son.
He was donned in full PPE (personal protective equipment) when the doctor delivered the devastating news that Jacob had acute lymphoblastic leukaemia. With Jacob also testing positive, they were both moved into isolation, where they remained for nearly a month while Jacob’s treatment began.
I can remember sitting and thinking for ages about how to explain cancer to him… a 4-year-old child.
- Matt, Jacob's dad
Treatment
The day after the official diagnosis so much needed to happen that it is was hard for the family to process at the time – a blood transfusion, a lumbar puncture to test the spinal fluid for cancer cells, intrathecal chemotherapy and then IV chemotherapy as well. Jacob also had to go on a whole raft of drugs, including high dose steroids. Several times a day, he had to be force-fed medications by his father − an experience Matt found traumatic.
After several weeks, Jacob was finally allowed to go home, but ended up back there just 48 hours later with a fever. Matt describes watching his son "go floppy" and having to check he was still breathing on the way to the hospital.
We gradually got used to these episodes but the first few were absolutely terrifying, and that initial car journey still haunts me to this day.
- Matt, Jacob’s dad
Westmead became like a second home for the family throughout treatment. Jacob went through several cycles of chemotherapy, lasting nearly 8 months in total, experiencing a range of debilitating side-effects. During the final block of chemo, he was neutropenic and his side effects were so bad that he had to stay in hospital for over 2 weeks. “He barely ate, spoke, or engaged for days because he was just so beaten down,” says Matt.
Finally, induction therapy was over and Jacob got to go home, though treatment was far from over.
There’s still 15 or 16 months of maintenance therapy, then another three years beyond that to get the all-clear. It’s a long road ahead.
- Matt, Jacob’s dad
Today
Matt says he feels compelled to do as much as he possibly can to help improve the situation for other families with children in hospital. “We’ve got to save these kids. The toll this has taken on us as a family is unbelievable, but we were the lucky ones. Compared to some other families, we had a “good” diagnosis, and we will come out the other side of this. Other families aren’t so lucky, and that haunts us. I think about it all the time. Whatever we can do to help, we will do.”
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