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Remembering Jacob: ‘Leukaemia Sux!’

The McLeod-Steinmetz family
The McLeod-Steinmetz family photographed for a newspaper article in 2014, from left, Jon, Jonathon, Jacinta, Jacob, Deanne and Ryan

Since losing their son, Jacob, to leukaemia 15 years ago, Deanne and Jon McLeod-Steinmetz and family have honoured his memory with special rituals of remembrance, including the Leukaemia Foundation’s Light the Night.

Jacob was 12 years old when he was diagnosed with acute myeloid leukaemia (AML) in November 2003, and his mum, Deanne, recalls the feeling of shock. He had just played at a representative soccer tournament, and throughout his life, had rarely been sick.

Jacob McLeod-Steinmetz
Jacob with the family dog, Bejay, in 2014

“He was my healthiest of four children, always a veggie-eater, and had never had a cold or flu his entire life,” remembers Deanne, of the outer Brisbane suburb, Alexandra Hills.

After four cycles of chemotherapy, Jacob was transferred to the Royal Brisbane Hospital for more intensive treatment, but ongoing roadworks meant Deanne always had to call on the way, saying they were stuck in traffic.

“That’s when the Leukaemia Foundation contacted us and offered us our own unit at their Herston Patient Accommodation Village,” she said.

Jacob McLeod-Steinmetz on the soccer field before his diagnosis
Jacob McLeod-Steinmetz on the soccer field before his diagnosis

“It was just down the road and that was a godsend as the doctors said we needed to be close to the hospital, considering the terrible reactions Jacob kept having to the chemo.”

Due to Jacob’s poor response to treatment, it became apparent that he needed a bone marrow transplant.

“No one in our family was a match,” said Deanne, but a Melbourne woman was found who could be his donor.

Deanne sent her a thank you letter and a little angel necklace.

“Every year on the date of his transplant, I put a message on Facebook saying we are forever grateful to the mother of six that helped us.

“She gave us four more months with our boy.”  

In February 2005, 92 days after his transplant, Jacob relapsed, and his parents were told “to go home and make arrangements”.

“We gave Jacob one last weekend before telling him the news. We all went on a family trip to Sea World and had a great time,” said Deanne.

“On the Monday, we broke the news to him, and he asked us to bring all the other kids into the room.

“Jacob’s the youngest and he sat them all down, put his arms around Jacinta (then 19) and Ryan (15), looked at Jonathon (18) and said, ’my leukemia’s back and I’m going to die. But it’s okay, we’re not going to stop fighting’.”

In the following months, the family dedicated most of their time to making memories with Jacob.

“We went on our Make a Wish trip to New Zealand so Jacob could see snow and our daughter’s boss paid for a trip to Disneyland,” said Deanne.

“We had some amazing moments during that time and made memories that we will treasure forever.”  

By mid-2005, Jacob’s condition was critical. His leukaemia was becoming too much for his body to handle.

“We were able to get him home, far away from the hospital, and he left us peacefully at 5:08pm on 16 June 2005, just a day short of his 14th birthday,” said Deanne.

Since Jacob’s passing, Deanne and her family have established special ways to honour his memory.

“On the first anniversary we went to Jacob’s three favourite soccer fields in Brisbane to spread his ashes as he had wished,” said Deanne.

“It was such a Jacob-type of day with gorgeous weather and all these funny things happened that were very reminiscent of the way he was, like balloons going crazy on the field.

“Now every year on 16 June we go to what we call ‘Jacob’s Beach’ at Wellington Point where we have fish and chips and watch the sun set at 5:08pm.

“It’s really important for us to mark and acknowledge that moment when our world changed forever.” 

Jacob’s brother, Ryan, in his ‘Leukaemia Sux’ shirt at the inaugural Light the Night in 2008
Jacob’s brother, Ryan, in his ‘Leukaemia Sux’ shirt at the inaugural Light the Night in 2008

“I go again at 6am the next day to watch the sun rise on his birthday and we always make cake and pasta for his birthday tea,” said Deanne.

The whole family has attended the Light the Night event nearly every year since it started in 2008 and they made special ‘Jacob: Leukaemia Sux!’ shirts to wear.

“Jacob used to wear shirts with ‘Leukaemia Sux!’ on them and we thought we would continue the tradition,” said Deanne.

“It can be a bittersweet night, but I love going to meet up with all the mums of the survivors who were Jacob’s age.

“We all have a cuddle and chat about how their now-adult kids are going.

“I’ll often also approach someone who you can tell is a newbie to the event and is holding a gold lantern.

“I’ll ask them about who they’re there for, and tell them a bit about my story. I think they really appreciate the chance to talk openly about the person they’ve lost,” she said.

“It’s good when members of the public stop you on the walk and ask what all the lanterns mean.

“I’m always proud to explain we’re supporting the Leukaemia Foundation and research into the disease that took my son’s life too early.”

Deanne, who was unable to attend Light the Night last year, was excited to hear the event would be virtual in 2020.

“This will be a fantastic way to make sure everyone is included, no matter where you are or what situation you’re in,” said Deanne.

“Many families going through blood cancer know how risky it is, just in normal times, not only in the middle of the pandemic, for patients to be in a crowd or public place.

“You feel like the crazy, paranoid mum getting everyone to sanitise constantly, but it really is a matter of life or death for your child.”

Deanne and Jon have also attended the Leukaemia Foundation Bereaved Parents’ Weekend in the past where they formed strong bonds with others who have lost a child.

“Those weekends were amazing and I’m still in contact with a couple of the mums we met,” she said.

“What I enjoyed was not having to put on a front that you’re fine because everyone else knows exactly how you’re feeling.

“You can be angry, sad, crying, or laughing hysterically and there’s no judgment whatsoever.

“You can’t really talk about it too much with others in your life because their eyes glaze over, or they get embarrassed and change the subject. I find that especially when people find out it’s a child you’ve lost.

“Both my parents have passed away and people still easily say to me, ’I’m so sorry about your dad’.

“But after Jacob passed, when I would see some of his mates’ mums in the mall, they would literally turn around and run the other way or duck into a shop.

McLeod-Steinmetz siblings at Wellington Point
The McLeod-Steinmetz siblings at ‘Jacob’s Beach’ at Wellington Point, in 2011, from left, Jonathan, Jacinta and Ryan with a photo of Jacob

“That actually really hurt, and my advice would be that it is much better to say the wrong thing, then nothing at all.” 

Deanne still misses Jacob every day and is dedicated to making sure he is never forgotten, which she considers “the greatest fear for every parent who has lost a child”.

“Jacob will always be my ‘almost’ 14-year-old, and not a day goes by that I don’t think about my cheeky and mischievous boy up there watching over us,” said Deanne.