Llewyn’s mum explains that his blood is sick
Julieann Miller was 37 weeks pregnant when her 11-year old son, Llewyn, was diagnosed with leukaemia in May 2007.
After completing his first week of chemotherapy in Melbourne, the family had made the four-hour trip home to Sale when two days later Llewyn had a reaction to the drugs and had to return to Melbourne.
“I stayed and had my daughter, Summar,” said Julieann. “I only had one night in hospital in Sale, then drove to Melbourne with my newborn baby.”
Eight months prior, Llewyn, who has Down Syndrome, had started getting sick with a succession of ongoing chest and throat infections and viruses.
“He just couldn’t get on top of them,” said Julieann. “Then he got a fever that he just couldn’t shake and after a blood test we were told he had acute lymphoblastic leukaemia.”
That weekend, Julieann had plans to go to Melbourne to say good-bye to her aunty who had cancer, but instead she took Llewyn to emergency at the Royal Children’s in Melbourne. He was admitted that Saturday and began intense chemotherapy the following Monday. Now in remission, Llewyn has been on maintenance treatment since January. This program of oral chemotherapy daily and intravenous chemo once a month, finishes in September next year.
“Because Llewyn has Down Syndrome we have struggled,” said Julieann. “Finding someone to talk to who’s been through the same thing is really hard.”
Julieann said Llewyn was unable to communicate and used sign language and because of his disability she was not sure how much he took in.
“I still have to explain that he has to have medicine everyday because his blood is sick. He doesn’t feel pain, so we have to pick up on changes in his body language regarding the affects of the chemo,” she said.
“We’ve made many emergency trips by ambulance to Melbourne because the local hospital couldn’t treat him through his first 18 months of treatment.
“Apparently it’s very common for Down Syndrome children to get leukaemia which I didn’t know until Llewyn was diagnosed. But normally they are aged between three and five, rather than 11.”
Julieann said the treatment plan for children like Llewyn was different. “Their immune system is different and they are more sensitive to the drugs. We were initially on a study plan but Llewyn kept having reactions to the drugs so we had to go off the plan.”
Julieann said Llewyn’s speech had deteriorated since he began treatment, as had his sight and he has gone backwards with his toileting and mobility.
“We are working at building his confidence and getting him back to a normal life. We have had to go back and teach him life skills like how to cross the road.”
Earlier this year, Llewyn, 13, returned to the Sale Specialist School but Julieann said he was still struggling with the full days.
“He gets very tired and moody and is having trouble communicating with the other children. The school has noticed his level of academic skills has dropped. He was at a high reading level before his diagnosis, then dropped to a low reading level, and his overall comprehension has dropped.
“We’re all starting to get a grip on living normally again –doing what we like and family outings.”