Mum reveals devastating moment life changed for baby Jack

Jack was a happy, healthy, robust baby. He was an early walker and talker and was very chatty. He never got sick. But at age 16 months that all changed.

Jack was diagnosed with B-Cell Acute Lymphoblastic Leukaemia at the age of 16 months — a cancer that starts in the bone marrow.

Jack was a really outgoing little baby and a very active baby. He was an early walker, he spoke early and was very chatty. He was just brilliant, he’d never get sick. He was just a happy, healthy, robust baby.

When he started sleeping a lot, sometimes for four hours at a time during the day, people would tell me ‘you’re so lucky’.

Then there was the bruising. It was all down his leg, and because I was at home with him every day, I knew there was no explanation for it.

The final thing that worried me, being a pathologist, was red spots on his back which I knew was a sign of low platelets.

I was telling myself that cancer is very rare in children and there could be lots of reasons for his symptoms, but I felt there was an issue. Leukaemia was the worst-case scenario, but I had that weird mum intuition.

We went to our GP; who did a blood test, and found he had no platelets. They rushed us from where we were living in the Blue Mountains down to Sydney to the Children’s Hospital at Westmead.

Jack with mum Penelope Frith.

Jack has been in and out of hospital since 2016.

Jack was diagnosed with B-Cell Acute Lymphoblastic Leukaemia in November 2016, at the age of 16 months and treatment started straight away.

Two weeks in, doctors realised that the standard treatment hadn’t really put a dent in the cancer.

They did genetic testing and found a mutation called the Ikaros deletion in his genes, which meant that Jack would not respond to traditional treatment. The doctors said his cancer would be resistant to a normal chemotherapy regime.

Most kids have a 90 per cent survival rate, but in his case, it was more like 50 per cent.

Suddenly, a bone marrow transplant was discussed. First, he had to have more treatment to get him into remission, and they weren’t sure how it would work — they really had to go off the track of what they would normally do.

He didn’t have a great prognosis. I didn’t share that with my family. That was a huge burden.

By January 2017, they had decided he needed a transplant and it took place in June 2017.

He then developed a condition after the transplant which started to affect his liver, kidneys, and lungs.

He had no whites in his eyes; he looked like a corpse. It was absolutely horrendous.

In all, he spent nine months in hospital.

When you have a child with cancer, it becomes a huge battle. There is the battle against the cancer. There is the battle against the side effects of treatment. There is the battle of uprooting your life. Our entire life was ripped away, like we were going to war.

My youngest son, Harry, is now at the age Jack was when he was diagnosed. I’m constantly watching him for bruises.

We believe research is important because despite Jack’s difficult journey, it is only because of research that he is alive today and cured.

But we have such a long way to go.

Jack is the face of Children’s Medical Research Institute’s Christmas Appeal.

Jack has many health problems from his treatments — and could face kidney problems, vision and hearing issues, and a long list of other ailments that could follow him into his adult life.

He has had 35 general anaesthetics. Doctors think his night terrors are a reaction to that.

And some effects are still unknown.

Research will help find cures for children’s cancers where there currently are none, and to develop treatments and cures that are gentler and give kids a chance of a quality life.

We also need research to give every child the opportunity to receive the most effective treatments as soon as their cancer is diagnosed.

Doctors say Jack is a strong, healthy kid, which has made him quite resilient.

They have really made improvements in the survival rate for kids with leukaemia. I look forward to a future where the journey toward cancer cure and life after cancer, is smoother and healthier for our children.

Jack is the face of Children’s Medical Research Institute’s Christmas Appeal which aims to raise money for a world-first cancer research program, known as ProCan. Scientists are creating a new database of cancer samples from patients all over the world, so doctors can create more personalised cancer treatment plans for every individual child.

To donate to ProCan visit cmri.org.au/christmasgift