Two bruises suddenly appeared on Lucy's eyes one morning. A similar set of bruises had appeared about a month earlier, but without any other concerning signs we dismissed them and decided to just monitor for other symptoms.
As the bruises had returned we made the decision to seek medical advice from our local GP. While he was not overly concerned about the bruises, and the occasional stomach-ache, he decided to request a blood test to ensure that all was ok. Just hours after the blood test we received a late-night call from pathology enquiring about Lucy’s health due to a low haemoglobin count and were told to expect a call from the doctor in the morning. On their advice we headed into RCH in Melbourne the next morning for review and were admitted while we awaited further tests from the haematology team.
"Following a chest x-ray and ultrasound we quickly moved under oncology care and were delivered the unexpected and gut-wrenching diagnosis of neuroblastoma. A cancer we had never even heard of until that day." Kirsty, Lucy's mum
Further tests confirmed the diagnosis of stage 4, high risk neuroblastoma with a large tumour in her chest and abdominal cavity, wrapped around her heart, vena cava, kidney and liver, and metastasised disease in her bone marrow and throughout her body. Treatment was to start immediately. In the space of eight days we went from living a normal life, to watching Lucy go through a bone marrow aspirate, ovary preservation surgery, and Hickman insertion before starting her first round of chemotherapy.
"At a time when we should be celebrating Lucy starting school with her friends we were instead learning a new world of cancer protocols and trying to juggle a life of hospital stays, work and supporting our son, Hunter." Kirsty, Lucy's mum
A treatment plan of five chemo rounds, a major surgery to remove the tumour, a tandem stem cell transplant, radiation, and immunotherapy was outlined to us. Treatment was expected to last around 18 months, but we were also warned to expect delays and prepare for up to two years of treatment. The next few months, while coping well with chemotherapy, Lucy experienced intense procedure anxiety that meant anything even slightly invasive, including weekly dressing changes, were required to be done under general anaesthetic, which only added to the stress on all of us through that time.
Scans following the first four rounds of chemotherapy showed that Lucy had responded 'perfectly' to initial treatment with just a small tumour remaining off her adrenal gland. A 9-hour surgery and an ICU stay followed to remove the remaining tumour and the non-active calcified tumours on her organs, following which we were given the even better news that she was now effectively cancer free.
After recovering from surgery, Lucy underwent a 5th round of chemo and began preparation for a tandem stem cell transplant.
"The first stem cell transplant resulted in a 6-week stay in hospital with Lucy extremely unwell. A diagnosis of severe VOD (veno-occlusive disease) resulted in a stay in ICU due to a swollen abdomen and fluid on her lungs causing breathing difficulties. Lucy spent her 6th birthday in the ICU ward." Nick, Lucy's dad
While she recovered well from these complications, a decision was made by her team to break protocol and skip the second transplant as they did not know if she would survive, should it go ahead. Luckily there were no ongoing issues and Lucy was able to finish the rest of treatment as planned; 12 rounds of radiation, followed by 6 rounds of immunotherapy.
14 months after we first stepped foot into RCH, Lucy’s final in-treatment scans showed she was still cancer free and officially in remission.
It's now 16 months since those final scans and Lucy is going well and living life like a normal 8-year-old girl. She’s playing netball, attending gymnastic classes, going to school and loving life. We consider ourselves lucky to be where we are today.
"But, like every child who goes through neuroblastoma treatment, there is a long list of possible long term side effects from the brutal treatments required to fight this disease that may show in later years. These are on top of the already diagnosed high frequency hearing loss. The chance of relapse never really goes away." Kirsty, Lucy's mum
Lucy’s father Nick is an avid runner and it was great to bring the whole family to Sydney to support him in the Run2Cure event, and help raise money and awareness of this devastating childhood cancer.
We're all very excited about participating in Melbourne's very first Run2Cure and can't wait to see 'Team Lucy' at Caribbean Gardens on November 12!