There were no warning signs
Born in August of 2018, Benjamin was a healthy happy baby so there really wasn’t a reason for a kidney ultrasound, however the family pediatrician ordered one from habit.
‘A phone call from the pediatrician's office to request an appointment in the next hour was the moment when neuroblastoma became a part of our family’s life.’ Kate - Benji’s mum.
Searching for answers
The ultrasound revealed a mass on Benji’s left adrenal gland. The family were told that it was most likely neuroblastoma. Despite there being no warning signs that anything was amiss, over the next few weeks Benji’s mass grew rapidly.
He underwent surgery at the tender age of six weeks. Given his young age, the location of the tumour (it was near several main blood vessels and organs) and type of cancer (the tumours are described as ‘fryable” and can wrap themselves around blood vessels and organs) the surgery was delicate with significant risks.
‘I don’t think Walt or myself will ever forget the surreal moments leading up to the surgery. Trying to act normally for our other two small children and also for Benji. Handing Benji over to the kind doctors and walking away from our six week old baby was literally gut wrenching. Wandering aimlessly around the nearby shopping centre, at a loss as to what to do while we waited, and expressing milk religiously, as it felt like the only thing we could do to help him.’ Kate - Benji’s mum
The surgery itself was a complete success however the procedure revealed multiple liver metastases; the cancer had spread. Benji was diagnosed with Neuroblastoma Stage 4S, the S standing for special in that only children under 18 months are categorised with it.
‘Sharing the news that our baby had cancer was a really difficult experience. I think we couldn’t comprehend it. One of the beautiful outcomes of this experience was how our families, friends and our community rallied around us and supported our little family.’ Kate - Benji’s mum
One day at a time
Over the next couple of days Kate and Walt couldn’t even hold Benji as he recovered from his abdominal surgery. Grueling daily appointments at the hospital followed his return home. One of which was for a MIBG, which was incredibly long and arduous process, particularly as he could only tolerate 10mls of breast milk. On another occasion he was readmitted with sepsis. With no IV access he was back to theatre for a midline to be inserted.
As tests showed Benji did not have MYCN amplification, his doctor offered a ‘watch and wait’ approach or chemotherapy, informing the family that both were valid options.
They decided to watch and wait.
‘Five years ago, we would not have had the option of “watch and wait” and Benji would have required an intensive regime of chemo with possibly very significant side effects. We will never be able to thank everyone enough who has contributed in all the various ways to this research,’ Kate - Benji’s mum
An uncertain future
The liver metastases continued to grow at each appointment and the family of five began to prepare themselves to support Benji through chemotherapy. Thinking the young family would need whatever holiday and sick leave that could get (particularly as Walt was running his own business), Kate prepared to return to work.
Then, they received amazing news: Benji’s tumours appeared to have regressed slightly in size.
The family continue the ‘wait and see approach’ with Benji attending appointments every three months at Sydney Children’s Hospital to monitor his liver and general well-being.
So far, so good.
‘We are very aware that we are one of the lucky families. It was a very surreal and dark time for us, but in no way have we had a hard time compared to many families who have gone through so much worse with this disease. We think and talk about the many children and families affected by neuroblastoma with our children. Neuroblastoma Australia was a wonderful support and resource throughout this time. They are invaluable.’ Kate - Benji’s mum