When Ivan was born prematurely at 31 weeks, he was taken straight to the neonatal intensive care unit to help strengthen his lungs. At the time, his parents thought they had been through the worst. But, when they were finally able to take him home nearly two months later, they realised something wasn’t quite right.
“Three weeks after we brought him home, bruises started to appear on his face. Soon these bruises turned into lumps which covered his body. We saw our paediatrician, and straight away, they made an appointment with a dermatologist,” Linda, Ivan’s mum shared.
A week later and at the height of the COVID-19 pandemic, Linda and her family found out that Ivan had myeloid leukaemia.
At just three months old, he was referred to the RCH and given a four round treatment plan. Sadly, just as he was approaching the fourth round of treatment, Ivan relapsed. This meant that he had to undergo another two rounds of chemotherapy and a bone marrow transplant to help infuse healthy blood-forming stem cells.
Unfortunately, Ivan was impacted by a shortage of organ donors caused by the pandemic, which caused intense anxiety and sorrow for the family. Thankfully, Linda was able to donate her own bone marrow and help save her son.
“Ivan was eventually able to undergo the transplant, using my bone marrow. And everything went quite smoothly. But then in the third week of chemotherapy he got veno- occlusive disease, where one of the very small veins in his liver was blocked, and his tummy was full of liquid,” Linda explained.
After intensive medical treatment, Ivan recovered in time to celebrate his first birthday. That morning, he woke up singing and in high spirits – warming the hearts of his family.
“That was a miracle for us. We didn’t expect him to recover so well,” Linda said.
Linda and her family were so happy to see Ivan recover, and even more elated to take him home.
“Day by day, Ivan became healthier. He started to play more. All we had to do was come back every few months for his regular checkups,” she said.
And then, the unthinkable happened – Ivan relapsed again.
Three years after his initial leukemia diagnosis, Ivan and his family were forced to do it all over again, from chemotherapy to a bone marrow transplant.
Despite it all, Ivan was full of joy.
“He’s a very happy boy. Even as a baby at the RCH, he didn’t cry much. He is always smiling from the moment he wakes up. He makes my day,” Linda said.
Ivan’s heart-breaking diagnosis and relapse emphasises the importance of the Children’s Cancer Centre (CCC) Biobank, a world-class centre helping support groundbreaking cancer research around the world.
This specialised research facility is dedicated to collecting biological samples from patients at the RCH to build an understanding of how a patient’s genes can affect their response to cancer treatments. It is one of only five paediatric tissue banks in Australia that collects tumour tissue that’s been preserved for future research purposes.
“Investigation into rare childhood cancers in the past has been limited due to paucity of biological material, and
data from trials. The existence of our Biobank is central to the capacity to remain research active and nationally and internationally embedded in cancer research including cutting edge clinical trials,” explained Dr Louise Ludlow, the CCC Biobank Coordinator.
This vital work enables research to make groundbreaking discoveries, find better cancer treatment options, and reduces the harmful side effects of cancer therapies for patients just like Ivan.
“Our Biobank directly benefits every child, adolescent and young adult diagnosed with cancer at the RCH,” Louise shared.
Louise is incredibly grateful to donors for helping make the CCC Biobank one of the largest and most respected of its kind. This achievement has been made possible thanks to the philanthropic support of RCH Foundation donors.
“We don’t receive any government funding at all – we rely completely on philanthropy. The Australian and international research community is grateful to the RCH Foundation and the generosity of donors for providing funding to allow operation of our CCC Biobank,” Louise shared.
Linda is also incredibly thankful to donors for all their support. Throughout his stays, Ivan has benefited from philanthropic- funded programs such as music therapy, the CCC Biobank, and more.
“It warms our heart and our family. I know I can’t do it without all the support and all the love,” Linda said.
As Ivan’s journey with the RCH continues, so does the Biobank’s essential work, ensuring children and young people just like him can benefit from better cancer therapies, clinical research and, ultimately, thrive.