Tasmanian Mum Jodi is pushing herself out of her comfort zone, taking on an epic trek to the heart of Australia for a cause that’s close to her heart.
Three-year-old Trystan had been unwell for weeks; tired, pale, lethargic and cold all the time. Doctors were perplexed, trying antibiotics and investigating viruses to no avail. Mum Jodi was sure that something was deeply wrong, as Trystan began waking up with unexplained bruises and a huge rash developed across his legs.
On a routine trip to the GP for Jodi’s other son, the doctor noticed Trystan slumped in his chair.
“The doctor saved his life that day,” Jodi explained, praising the doctor who ran blood tests for Trystan on the spot. After a tense few hours Jodi got a call.
“Pack a bag, call an ambulance and get to the emergency department." Jodi, Trystan's mum.
Jodi tears up as she recalls the moment. “They believed Trystan had leukaemia…cancer.”
Having lost Trystan’s father to cancer when Trystan was only ten months old, Jodi was blindsided by the diagnosis.
“All I could think was that Trystan was going to die. There are no words to describe the crushing feeling of helpless devastation I felt that day.”
Trystan was rushed straight to local North West Regional Hospital, before being flown to Royal Hobart Hospital within 24 hours. A diagnosis of acute lymphoblastic leukaemia was confirmed.
“If he hadn't gone in when he did, he would have died. Once in hospital it was chemo, chemo, chemo." Jodi, Trystan's mum.
Royal Hobart Hospital was almost four hours away for the family. Jodi was initially told to expect two to six weeks of treatment, then he would hopefully reach remission and could continue treatment closer to home.
Read more: Combinational therapeutics in high-risk infant acute lymphoblastic leukaemia
But Trystan didn’t reach remission through that round of treatment, or the next.
“He ended up being elevated to a high-risk protocol and we had to remain in Hobart for 12 whole months. We were right on the cusp of being sent to Melbourne for treatment.”
In total, Trystan went through 3.5 years of intense treatment before finally reaching remission.
With four other children, one of whom has autism, Trystan’s ongoing treatment took a toll on Jodi’s whole family.
“They were just little kids and our whole world was being ripped apart all over again,” Jodi says. “They’d just lost their Dad and then lost their Mum and their brother.”
Trystan’s low immune system during treatment meant the family had to be split up, to avoid the risk of him picking up another illness.
“They were not allowed to come and live with us in Hobart as we had many, many inpatient stays, weeks at a time.”
Trystan is now 12 now and his mum describes him as happy and cheeky. The whole family celebrated on Tuesday 1 December 2020, five years since Trystan’s last treatment. And although Covid ruined their hopes for an international trip, they celebrated in Queensland, making memories all together.
Take on an amazing adventure and raise money for research. Find out more.
After seeing a post on Facebook about The Kids’ Cancer Project’s Larapinta trek, Jodi decided to sign up.
“I’m terribly scared,” Jodi says, laughing. “I’m not a hiker. But I’ve got my boots so I’m starting!”
The trek takes place in August 2021, taking on one of Australia’s most iconic treks across the ruggedly beautiful scenery of Central Australia. And the best part is, participants will be walking to raise money for kids’ cancer research.
When Jodi’s feeling apprehensive about the walk, she takes inspiration from her son.
“This challenger is nothing compared to what he's been through. If he can get through cancer, I can get through this." Jodi, Trystan's mum.
And, after so long looking after her family, Jodi is excited that Larapinta is breaking her out of her comfort zone.
“This has given me a purpose and something to strive for. It’s challenged me to take a break from the role of caregiver.”
Jodi hopes that by undertaking the challenge, she will spread awareness for childhood cancer and the role of scientific research to improve outcomes for kids after a diagnosis.
“The nurses tried to console me saying don’t worry there’s an 80 per cent survival rate. But I kept thinking, what about the other 20 per cent?”
“I have so much respect for scientists and researchers who dedicate their lives to childhood cancer. The research is critical to finding cures.”
Jodi muses on one particularly bad night when even the nurses were frightened after Trystan had an anaphylactic reaction to a chemotherapy drug.
“The alternative treatment was 36 deep muscular injections, two at a time one in each thigh. We had to gas him at that stage. It’s one of the cruellest medications and I often asked myself, why am I putting him through this?”
She hopes that her fundraising efforts will help lead to scientific breakthroughs that ensure no child has to go through such an ordeal in the future.
“To find something that would not affect him the way current treatments do, that’s where the science and research comes in."
“There are cures out there that are just waiting to be found." Jodi, Trystan's mum.
If you'd like to fundraise like Jodi, but a big trek isn't your thing, there are plenty of opportunities to support The Kids' Cancer Project.
