Fifteen years ago, identical twin boys Connor and Jared were diagnosed with an incredibly rare leukaemia which affects one in a million infants.
The only life-saving option was a cord blood transplant
Their young bodies endured general anaesthetics, chemotherapy, stem cell transplants, invasive ongoing treatments, countless blood tests, more than 300 blood transfusions, repeated hospital admissions, separation from each other and they had their spleens removed at 17 months of age. Jared’s first word was ‘heparin’ (part of the treatment).
The family was forced to split their time for almost two years between The Royal Children’s Hospital and Fight Cancer Foundation’s accommodation centre.
Fight Cancer Foundation was able to provide comfortable accommodation minutes from The Royal Children’s Hospital.
“When I saw our apartment, I cried” – mum Chris
Back in 2007 Connor looked like he had been bitten by an insect – after numerous tests he had a bone marrow aspirate and the word leukaemia was mentioned – Mum Chris was advised to bring in Connor’s identical twin Jared as a precaution. After both underwent bone marrow aspirates they went home for Christmas.
And then it was diagnosis times two.
“Both boys were diagnosed at the same time with Juvenile Myelomonocytic Leukaemia (JMML). It was devastating news – two searches began immediately for life-saving donors,” says Chris.
“Both Connor and Jared started conditioning chemotherapy in March 2008 – which prepares their bodies for transplant of the new cells. They both endured four rounds – aged just 15 months”.
“Our lives became attached to The Royal Children’s Hospital and the accommodation centre”
“Connor’s transplant was in July 2008. Five long weeks later he was allowed out of hospital and into the accommodation centre.
“Jared received his transplant a couple of weeks later in July and six long weeks later, he was released from hospital into the accommodation centre.
“It was incredibly reassuring to be only minutes away from The Royal Children’s Hospital. The accommodation centre quickly became our ‘home-away-from-home’”
“We were tentatively excited to leave Melbourne and head for home, but a month later Jared was diagnosed with anaemia and admitted back into hospital. He did not leave until August the following year. Connor also required further treatment and our lives were again on a roller coaster.
“We were finally home in January of 2010 – not long after celebrating the boys’ 3rd birthday.”
“I started this journey with few expectations – just the hope that we would make it through an illness that none of us could rationalise”
“Without the vision to establish the BMDI Cord Blood Bank, our situation may not be as bright,” says Chris. “Thanks to this amazing resource, Connor and Jared received their stem cell transplants from umbilical cord blood donors and are now leukaemia-free. I am filled with gratitude that these life-saving stem cells were available for us. We are also grateful to the cord blood donors and those with the medical expertise who made the chances of survival for the boys a reality.”
“There is a lot to be said for human kindness – a lot from people we have never met”
Today Connor and Jared are best mates, thriving at school, with keen pursuits as naval cadets and musicians. They are leukaemia-free. They have clearly defined career paths – Connor dreams of becoming a naval officer and submariner – Jared has his heart set on a career in medicine.
“Incredibly, they have no bad memories of the start of their young lives,” says Chris. “They were unable to play with each other for months, missed each other terribly, but have made up for lost time. They are each very different people but complement each other.”
The naval cadets has instilled in Connor a desire for a career as a naval officer and submariner. “After two weeks I thought cadets is fun – I want to do this kind of thing for a job - I like the people I’m with – I like the team building - I want to go in as a leader – because that is the part I enjoy most about cadets – getting to know how to lead and instruct people and set a good example – that is important to me. I also like the challenge of submarines – it involves physics, maths, engineering and keeping everyone happy as well as keeping the ship itself running properly”.
After Covid and ‘two years of not doing much’ Connor joined the SES and took on sailing as well as looking for a part-time job.
Jared is ‘pretty fixated on medicine’ and is looking at either psychiatry or neurology. “I had some insight as to what psychiatry was like and I could see that there is a need for more doctors and I became interested in being part of the healing. Then looking into it more I realised I also really wanted to be involved in more of the medical facets of taking care of people’s health and I suppose that is where the interest in neurology came from - because I really like the experience of helping people work through their diseases.
“I am in Year 9 now but I accelerated into Year 10 advanced science – and that is going really well. I will probably try to get into Monash Undergrads or try for a BioMed degree”.
“I think we have had so much given to us in the way of empathy and kindness and support through our journey,” says Chris. “I have always hoped that the boys would grow up in the position that they feel they want to give back – a lot of the time it is nice to be doing things just to do them with no expectation of what you might be getting back”.