Run2Cure Neuroblastoma supports research into the cancer that takes the lives of more children under five than any other. Here, local mum Korina Richmond shares the story of her son Benji’s diagnosis at birth and shares how you can support sick kids.
Neuroblastoma: ‘You son has a tumour’
My son Benji was born seven years ago on a gorgeous Sydney day. The sun was shining, and the sky was blue, and our little family of four was complete. Little did I know that seven weeks later I would be sitting in a room at Royal North Shore Hospital cradling my second born in my arms with tears silently flowing down my cheeks listening to a room full of health professionals telling me they had found a solid tumour called a ‘neuroblastoma’ in my baby’s chest. On that dark and stormy day, our lives were turned upside down and we became one of those families you see on TV who has a bald kid with cancer.
What came next: Life on the ward
We were transferred to Sydney Children’s Hospital in Randwick, a place that became our second home for the next year or so. I still remember sitting in the Oncology Ward, completely shellshocked with our seemingly ‘healthy’ baby in the capsule asleep at our feet. It was a lot to take in.
I looked around and saw children of all ages, a lot of them with wispy hair or no hair at all. There was a wall of photos of kids with celebrities directly beside where we were sitting and some looked very sick, which was heartbreaking. The ward was bustling with activity – nurses went about the day dressed in protective gear wearing purple gloves administering all sorts of drugs to these little children that would ironically make them sick in the hope to make them better. It was all very overwhelming.
Over the next few days Benji underwent blood tests, injections and scans to determine the extent of the cancer, and at nine weeks of age had major surgery to remove the tumour from his chest. He was in ICU for four days (the longest four days of my life) and on the ward for another week. The surgery was deemed a success, but difficult to tell if all the cancer cells were gone at a microscopic level. We were on ‘watch and wait’ treatment. Three months later, we were back for more scans (including one that required him to be injected with radioactive isotopes) and unfortunately the cancer had come back. It was action stations again. More surgery, more scans and this time the big guns were bought out – chemotherapy drugs.
He was only five months old when he began chemo and he was sick for most of active treatment due to low immunity from the chemo drugs. We spent around 100 nights in hospital – mostly in isolation, which for me was incredibly lonely as we didn’t have any family in Sydney, Chris and our two year old daughter couldn’t visit much because like most toddlers, she frequently had a snotty nose so wasn’t permitted on the ward.
Over the treatment period Benji endured hundreds of injections (40 of them administered by myself as he needed a course of granulocyte-colony stimulating factor (G-CSF) injections after each round of chemo), blood tests, blood transfusion, dozens of scans, 12 anaesthetics, countless rounds of antibiotics (the strong ones that can potentially cause hearing damage) not to mention the chemotherapy drugs.
Support Run2Cure Neuroblastoma: ‘My son was one of the ‘lucky ones’
We were one of the lucky families, Benji is now officially in the ‘long term effects clinic’, where he can be treated like a ‘normal kid’, however we need to monitor the side effects from the chemo drugs which can include heart damage, infertility, and ironically – secondary cancers (leukaemia and melanoma). As a parent you worry about all the treatments your child has gone through, question every subsequent illness, every difficulty your child has whether it be learning or social – is it because of the treatment we put them through or not?
Benji is now seven years old and loves to build amazing creations, music (especially the Foo Fighters), anything to do with reptiles and practical jokes. Without treatment and the amazing health professionals, we wouldn’t be so lucky. However, we will always be on this journey, other families will not be so lucky and will lose their children that is why we desperately need to fund more research into effective treatment that targets neuroblastoma and has less harmful side effects. My hope for the future is that no child and their family go through what we went through and live with the consequences of treatment.
Run2Cure Neuroblastoma: How you can help
You can help fund vital research into a cure for the children’s cancer neuroblastoma in these ways:
Support the charity by buying an activity toy to entertain the kids at home during these difficult times. There are great products for ages 3 to 8 years and card games (such as Savannah and Piratek!) that are great for the whole family. Free postage for orders over $100.
Show your love to vulnerable families by donating an activity pack to children affected by cancer who are in isolation.
Due to COVID-19, this year’s Run2Cure Neuroblastoma is now planned for Sunday 6 September. It will become a virtual event in the event the community can’t physically meet. Registrations are still open, and you can save 15% off if you register before 17 April. Enjoy a great day out in The Domain, Sydney AND support research to help kids like Benji. For full event updates, run start times, superhero stories, tips on how to prepare, transport details and activity guide, visit Run2Cure.
Remember: Kids (and those who are kids at heart) love the chance to dress up, so please come as your favourite superhero! Help make our 1km Little Heroes walk a bright parade of colours and capes. Parents can push their babies in prams in this event.
Run2Cure Neuroblastoma is the major fundraising event of the year for the children’s cancer charity Neuroblastoma Australia. which was founded by families with children suffering from this disease. Your participation and fundraising efforts support much-needed research into this greatly underfunded form of cancer. North Shore Mums is a proud Media Partner of this wonderful day out for an incredibly important cause. Help us get closer to a world where every child diagnosed with this disease gets the chance to grow up, free from the side effects of their treatment.