On Thursday, September 20, 2024, the lives of little Chloe and her family changed dramatically. It was the first day they ever heard the word “neuroblastoma”. Within 24 hours they went from being on a family holiday to being admitted to the oncology ward in Queensland Children’s Hospital. Fiona, Chloe’s mum, shares their story,
During the September school holidays, we were on a camping trip near Bundaberg. Myself, Adam, and our daughters, Anna and Chloe – plus two dogs Millie and Teddy. Chloe, who was then three, was her usual outgoing self. After a fall in the playground, she started to complain of a sore tummy and became increasingly unsettled during the night so at 3am we decided to take her to the Bundaberg hospital. We waited five hours in the emergency department.
After speaking to a doctor, I asked to see if a scan could be done of Chloe’s stomach but was told her tummy felt fine and it wasn’t needed. However, shortly after, Chloe became distressed with pain and the doctor agreed to go ahead with an ultrasound.
After the ultrasound we were told there was something unusual showing and they would need to send the scan to the main children’s hospital in Brisbane for further analysis. Later that day the doctor told us that there was a mass in the scan and Queensland Children’s Hospital (QCH) would like to see Chloe.
I asked her what this meant, and she said worst case scenario it could be “CANCER”. I was beside myself, surely not I thought – I couldn’t believe it. I was hopeful and praying this was not the case.
Within 12 hours we were flown by the Royal Flying Doctors to QCH Brisbane. Chloe had a CT scan done. Not long after, five doctors walked into our room. The doctor talked about the 6cm mass in Chloe’s abdomen. I asked nervously if it was cancer, she said it was likely, confirming my very worst fears. The doctor mentioned the word “neuroblastoma”. I was shocked and totally devastated. I was by myself with Chloe at this stage. Adam was still driving back from Bundaberg. I couldn’t console myself. I remember Chloe asking me why I was crying. My heart was shattered into a million pieces. The fear of the unknown that lay ahead. How could this be happening to my healthy fun-loving little girl?
That evening we were moved up to ward 11B. The nurse showed me where I could make coffee. It was only then I realised we were in the oncology ward. When Chloe and I got back to the room there was a teddy sitting on the bed from the Cancer Institute.
It was all extremely confronting. I tried my best to hold it together for our brave little girl. I didn’t want her to see the fear and heartbreak I was feeling. I wanted her to know everything would be ok and she was safe.
A few days later we had our appointment with our oncologist, she confirmed Chloe had Stage 4 neuroblastoma. In this meeting she went through the treatment plan for Chloe. This included five rounds of chemo, surgery, two rounds of high dose chemo (stem cell transplant), radiation, immunotherapy, and DFMO. An aggressive treatment plan for 18 months ahead. She told us Chloe was booked in for a biopsy two days later and surgery five days later to have her central line put in. Then ready to start chemo the following day.
We were able to spend a few precious days at home before Chloe’s surgery. We took Chloe to our favourite place on Bribie Island for a day of fun in the water. It was heartbreaking knowing it would be a long time before Chloe would be able to play in the water again.
The treatment so far has been aggressive, daunting, confronting and cruel. We understand that this is the only way this horrible disease can be treated.
However, it’s so difficult to watch the pain and torture our little girl must go through. She is too young to understand why she must be hooked up to a machine for five days pumping medicine into her body that will make her sick.
She doesn’t understand why she must go through the distress of her weekly dressing change for her central line. She doesn’t like the daily medicines being pushed through her nasogastric tube. She doesn’t like her daily bloods being taken. She doesn’t understand any of it. It’s cruel and heartbreaking to watch. We feel so helpless as her parents. We just want to protect her.
Since being diagnosed 200 days ago, we have spent 155 of those days in hospital. Our lives have been turned upside down. Our amazing other daughter, Anna, who is now six doesn’t understand why we are not home anymore. Why we are in hospital most of the time with Chloe.
We are lucky to have the amazing support of our wonderful family and friends. Especially our mums who have taken charge of running our household while we are in and out of hospital. Without their love and support we would be lost.
Cancer affects all of us so much. It’s totally devastating.
Chloe has completed five rounds of chemo, surgery and one round of high dose chemo where she has had her own stem cells transplanted back to her. We are incredibly grateful for the support and expertise of Chloe’s medical team at QCH. Chloe has shown remarkable bravery and resilience throughout this journey. We know her courage and strength will get her through this journey.
Last year we spent the year travelling this beautiful country. Now we cannot be more than one hour away from the hospital.
We just want our gorgeous girl to be back doing the things she loves which include camping, swimming, boating, bugs and anything outdoors.
The statistics around neuroblastoma are frightening. With only a 50% survival rate for children with aggressive neuroblastoma who have already gone through the harrowing treatment. The current treatment is harsh, cruel and outdated. More must be done for our children. There needs to be more funding for cancer research which will lead into the development of better, safer treatments for children diagnosed with this disease now and in the future.
