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Luke loves to swim and ride his bike now he’s beaten leukaemia

Thursday 12 March 2020 in Patient stories

Mabel couldn’t wait to meet Luke, her energetic 4-year-old son, at his classroom on Friday afternoon two years ago to hear about his second day of kindergarten. He was the youngest of four sons, and very excited to be starting school, but what seemed like an ordinary day turned out to be one she would never forget. When she tried to hold his right hand, so they could walk together, he said, “No mummy, my hand is really sore”.

“He said it had happened with another child,” said Mabel. “I thought, how can another child break his arm?” It didn’t seem likely.

On the drive home Luke sat with his arm across his chest and complained that his wrist was too sore to move. Mabel called a GP and the next day he had an X-Ray, as the doctor thought his wrist was broken. On Monday he saw a different GP, but by now Luke had a sore tummy so also had an ultrasound and blood and urine tests.

By Tuesday Luke still had a sore tummy but his wrist felt a little better. Except for his arm being in a Velcro brace, so it wouldn’t move, everything seemed reassuringly normal but on Thursday his family had to wake him up, which was unusual.

When he walked, he dragged his right leg a little and held both arms across his tummy. His family asked, “What’s wrong?” and he replied, “I fell out of bed.” But it didn’t make sense because no one had heard anything unusual.

Luke began to cry because he wanted to go to school and, apart from his wrist, it seemed he might be able to participate quietly in most activities. Luke’s teacher said she would keep him at school and see how it went while Mabel attended a school swimming carnival nearby with her other children.

Soon Mabel was rushing to collect her other sons from school early before picking Luke up from the school office where he was crying because his limbs were painful and hard to move. Mabel rang her husband, Bata, who said to go straight to the Children’s hospital.

The Children’s Hospital at Westmead took Luke in straight away where he was tested for juvenile arthritis. By now his foot was swollen, and his hand, wrist and elbow were sore as well. With anti-inflammatories his joints went down and he spent a few days in a wheelchair.

“The doctors weren’t sure what was wrong,” said Mabel. “They treated him for arthritis, gave him more tests, and kept him in a few days. They gave him test after test but didn’t find anything, although they knew it wasn’t arthritis. It took three weeks to diagnose him.

On the 18 February Mabel and Bata were told their son would need a bone biopsy.

“That’s when I knew he had cancer,” said Mabel. “My mother-in-law had cancer, and bone biopsies, so as soon as they said that I thought cancer straight away.”

Bata wasn’t so sure, it seemed like such a big thing for a small child to have, but three days later their fears were confirmed. Luke was in the very early stages of leukaemia, and although he was at first diagnosed as mild, a few weeks later he was reassessed to be high-risk.

From that first diagnosis, Luke had two years of treatment that included lots of chemotherapy, blood transfusions, morphine, painful sores in his mouth, and radiation to his brain.

“When he was sick, we tried to do everything he wanted to do because we just didn’t know,” said Mabel. “He really just wanted to be a regular kid and go out and play.”

Luke loved school, and although he had some long stretches in hospital, there were times when Mabel took him to school for half a day, a couple of days a week. “Even without hair – he had a hat on – he loved it. He didn’t do much work. He just wanted to be with friends."

“We were lucky to have a lot of people with us so he was always connected with kids at school. Mothers, and the school, would Facetime us in hospital and do activities. We did the Teddy Bears’ Picnic and had a little picnic. We did that while he was in his bed in hospital with a teacher from the Hospital School. She organised the same activity but in the room with Facetime.”

After two difficult years Luke is full of energy again and his family, who experienced worry and uncertainty, are celebrating with him. Ringing the bell in the Oncology clinic, at the end of his treatment, symbolised his newfound freedom.

“He just wants to be in the pool, and on his bike and scooter,” said Mabel. He can do everything now.”

 

 

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