LIVING WITH ACUTE LYMPHOBLASTIC LEUKAEMIA
“If he wakes up, it’s a miracle“
– Kevin*, 20 years old
Kevin* is a 20 year old originally from Forster in NSW. He was diagnosed with A.L.L. at 3 and half years of age. His day care nurse noticed that he complained of leg pain and lethargy and alerted his parents. They took him to GP who referred him to the John Hunter Hospital where his diagnosis was confirmed through a bone marrow biopsy. He was treated at the John Hunter Hospital, Sydney Children’s Hospital and Forster Hospital until he was seven years old.
Forster is a coastal town approximately 2 hours’ drive from Newcastle and 4 hours from Sydney, so there was a lot of travel involved over that period and extra stress on the family. His parents took him to the visits and had to juggle care of his 5 year old sister too. The family had a year in Sydney whilst Kevin was receiving treatment and lived at the fee subsidised Ronald MacDonald house which gave them a lot of support. Kevin’s sister went to the Children’s Hospital school. Whilst it was a difficult time for all he remembers that the hospital was very good especially at Christmas, and ensured family time and socialisation.
As Kevin had a very low immune system he was primarily in one of the isolation rooms as opposed to the small 4 bed wards. He watched movies and had toys which had to be disinfected and he couldn’t leave the room. He had to spend a lot of time alone which was challenging for him psychologically from what his mother has told him.
“if he wakes up, it’s a miracle”
Kevin needed a bone marrow transplant but as none of his family members were a match, the doctors had to search the worldwide registry. They found a suitable match with a lady in Canada, but before they could extract her bone marrow, she got sick so it was cancelled. Kevin ended up having a Stem Cell Transplant^ which his body tried to reject, and ended up on life support in a coma with internal bleeding on his brain and elsewhere. “They said to my mum and my dad and my sister that if he wakes up, it’s a miracle, most likely he won’t….The miracle did happen and Kevin slowly recovered.
When Kevin went to the school system again he was aged six and repeated his missed year of kindergarten. He had some ongoing tutoring and time with occupational therapists to improve fine motor skills and other developmental things that he had missed.
Camp Quality had camps that siblings and patients could go on and they offered counselling and psychology services as well. Kevin went about a year after his treatment when he was old enough to attend. He loved going on Camp Quality camps (between age 8-13) and thinks having friends with a shared experience helped him. He still has a good family friend he sees regularly, of his age, who he met at his first treatment who also lives in Newcastle.
not long after Kevin went into remission, tragedy struck
Not long after Kevin went into remission and got better, tragedy struck the family again with his father becoming sick and passing away in 2009 when Kevin was 9. He feels that his mother has had to be very strong throughout his whole life. Kevin’s teenage years were a struggle with depression and anxiety, much of which came from being bullied at school. He feels he was picked on as “I was different to normal kids and things like that just because of what had happened… I was bullied about losing my dad, having leukaemia, the way I looked. Yeah. Things like that. I ended up going to a different school that supported kids with bad mental health, which was very good. But the normal mainstream school wasn’t really for me.”
Kevin is still in remission. He feels that he was well supported after his treatment. He was in touch with Canteen during his teenage years. He still has yearly check-ups with his oncologist at John Hunter Hospital. He has ongoing adverse effects such as cataracts, poor teeth and lingering mental health issues. He is also infertile from the radiation therapy. Kevin has a good relationship with his family. He has just finished a contract with the federal government working for child support but currently unemployed. His main goal is to be a police officer.
*Names changed. Stock photo shown.
^ Stem Cell Transplant, sometimes referred to as bone marrow transplant, is a procedure in which a patient receives healthy stem cells to replace damaged stem cells. Blood stem cells are produced in the bone marrow and can become any kind of blood cell the body needs.