Children's Cancer Foundation
Ben went through gruelling cancer treatment at just three years old. He’s now a bright young man sharing his survival story and advocating for children’s cancer research.
When three-year-old Ben had trouble walking because of leg pain while on a trip to the zoo with his family, the doctor’s told his parents it was likely growing pains. But the pains continued. Finally, further investigation led the McGinn family to a place no parent wants to be with their child – an oncology unit.
‘’I can’t remember a lot, but I know normal life was immediately thrown into disarray in that moment in Peter Downie’s office at the Monash Children’s Hospital Cancer Centre’’, Ben said.
Ben’s love of Thomas the Tank Engine, kindergarten and swimming were put on hold, replaced with treatment for Acute Lymphoblastic Leukemia (ALL). Invasive and sometimes painful procedures instead of learning, laughing and playing became part of his new routine.
Just some of the things Ben’s little body went through were lumber punctures, inserting a port for chemotherapy administration, treatment for a pulmonary artery clot and numerous CT scans. Chemotherapy was administered through an IV after the port insertion was unsuccessful, he suffered fevers in his weakened state and had rounds of antibiotics to treat neutropenia (low level of neutrophils, a type of white blood cell).
His parents Tony and Amanda restructured their routines to ensure one of them was always bedside with their son. Ben’s grandmother left full time work to look after his brother Nick, just three months old at the time, so Amanda could be at the hospital during the day. Tony came every evening after work and slept on the floor beside him.
‘’I am eternally grateful. Without Peter and his incredible team, I would not be here to tell my story. You realise how much society relies on these incredible professionals. It’s why I am so passionate about raising awareness and funding for childhood cancer research and development to support oncologists across Australia’’.
The physical and emotional scars of treatment are sometimes long remembered by cancer survivors. One painful memory that Ben speaks to in this video is linked to having a port inserted to administer his chemotherapy.
‘’After the port was put in, I had complications with the first trial where they flush the port with saline fluid, before using the chemotherapy drugs. The pain was unbelievable. Mum and Dad told me they remember it being so distressing for them to watch. Dad tried to distract me with a puppet called Mr. Seal, which helped a little bit’.
The medical staff eventually had to stop and the IV method was implemented instead.
‘’l was strong through most of my treatment, but this broke me and my family. It was a real low point’’.
Ben underwent treatment for five years, three of which were chemotherapy. He was fortunate to not relapse and is in great health now, although some uncertainty remains about the potential side effects if any, from his treatment.
‘’It’s not tested or confirmed, but infertility may be an issue’’, Ben shared. ‘’It bothered me initially as I do have long term family aspirations. But for now, at 23, knowing the truth is not going to change anything so it remains a big unknown for now’.
‘’Childhood cancer is a challenge, a horrible unforgiving one. It will seem unfair, and it is. I wish someone told me this Bob Marley quote during my treatment – You never know how strong you are, until being strong is your only choice’’, Ben shared.
Right now, being strong is your only choice, for yourself, your family and your doctors. Easier said than done, but I’m here to tell you it is possible. You will look back on what you have overcome and breeze through most other challenges, because you already beat one of the worst’’.
Tony McGinn OAM is Ben’s father who has channelled his experience into bettering the lives of children with cancer as Deputy Chair of the Foundation Board (2002 – 2020), Founding Chair of The Million Dollar Lunch Committee (2004 – 2014) and Chair of KOALA Foundation board (2003 – 2012).
If you would like to see a future where children’s cancer is gone, donate today.
Photo credit: Ben McGinn, childhood cancer survivor.