I’m Fine Thank You, Nanna. How Are You?

My grandson Ben was diagnosed with acute lymphoblastic leukaemia (ALL) just days after his sixth birthday. The diagnosis was swift, devastating and life-changing for the entire family.

This month, as we celebrate his 14th birthday, I look on with admiration, pride and overwhelming thankfulness that we can enjoy this milestone with a healthy, fit and active young man leading a full life.

Eight years on, the memories still come flooding back, but…

No more do waves of dread and disbelief wash over me during long, sleepless nights.

No more do I experience the spiralling fear that my grandson wouldn’t have a future.

No more do I feel overwhelming sadness that a child should have to cope with such a devastating illness; knowing that his doctor would have to make him very sick in an attempt to make him better. 

And as I reflect, I see that it was Ben, with a wisdom and composure beyond his years, who allowed that negativity to dissipate.

I had long felt that Ben and his younger sister, Megan had inherited their resilient and positive approach to life from their parents.

The deep distress that was etched on his parents’ faces at diagnosis and initial treatment gradually took a back seat. In a pragmatic and clear-thinking manner and heeding the advice of their trusted oncologist, Dr Peter Downie, they found an equilibrium that saw them through the reality of the endless blood tests, the chemotherapy sessions, minor operations and long days at the hospital.

We all tried our very best to follow Dr Downie’s instructions: ‘Let me do the doctoring and the worrying….you just love him!’

Ben showed us throughout his treatment that life could still be lived with positivity and happiness despite the serious diagnosis.

“I’m fine thank you, Nanna. How are you?”

This was the answer Ben always gave whenever I asked how he was feeling.

Hospital visits became part of his routine and were more than not something to look forward to... the meerkats, an ice-cream treat and most importantly to Ben, his Beaded Journey.

While we didn’t know at the time, we now know that the Children’s Cancer Foundation has funded the Beaded Journey program at The Royal Children’s Hospital and Monash Children’s Hospital for many years. Each treatment or special occasion is marked by the gift of a bead, which is placed on a length of string. This wonderful initiative greatly appealed to Ben, as his Beaded Journey told his own personal story in an unusual and colourful way.

Ben was lucky. While there were periods in hospital and harsh procedures to endure, he was able to continue to go to school and rarely missed family functions.

Life was kept as normal as possible for all the family.

Vanessa, my daughter and Ben’s mum, said that life took on a new kind of normal but with the bar set just a little bit lower than usual. It was the only way to get through, she said and even Ben knew that.

On 1 November, Ben’s birthday, I asked my grandson how he was and he responded in his usual inimitable and loving way: “I’m fine, thank you Nanna. How are you?”

So nothing has changed, but really everything has changed in the life of Ben – he has had an experience that no young child should have to endure. But with his family by his side, he has.

We are firmly of the belief that research into childhood cancer is vital and that’s why our family will continue to support the Children’s Cancer Foundation in any way we can – be it through volunteering or taking part in fundraising events, such as the Murray to Moyne

Thank you to Lesley for generously sharing her story with the Children's Cancer Foundation.