On 9th September 2021 Willow aged 2 years and 9 months was diagnosed with neuroblastoma. Her Mum Kirsty explains her daughter's journey so far:

In 2021, Willow was attending childcare and was a normal, happy, bubbly toddler. I noticed that she suddenly started to have a little limp when she walked, so I took her to the local GP who recommended an X-ray. After reviewing the X-ray, the doctor diagnosed Willow with transient verdom (Irritable Hip) and told me that she would grow out of it and not to worry.

Another week or so passed, and Willow was still limping and she seemed to be in pain when I lifted her out of her car seat. She was also a little grumpy and was just not her usual happy self, so I went back to the doctor and another X-ray was organised. The doctor could not see any change and recommended that I take her to the Royal Children’s Hospital in Melbourne.

Late that same afternoon, Willow got examined by the the doctor in the Emergency Department and I told her about Willow’s limp. They decided to do some blood tests, which was hard as no 2-year-old likes needles and it had already been a long wait for her. The blood tests came back and the doctor said that we would be admitted for further testing, as they mentioned to me that her haemoglobin was very low.

I started panicking, thinking it might be leukaemia. We were admitted to hospital and were taken to a ward so more investigations could be done. The next morning Willow had an ultra sound and another X-ray. Later that day, the nurse in charge and a paediatrician called me and asked me to come into a private room."I was shaking with anticipation as to what was wrong with my little girl. The paediatrician said to me that Willow has a tumour and mentioned that it was cancer. My heart sank and my whole body froze." Kirsty - Willow’s mum I was able to call my mum and we were given an exemption for her to come in and support me. The following day I met with the oncology team. They explained that Willow would need to fast as she was going to have a General Aesthetic to do a bone marrow aspiration and get a Hickman line inserted. (This is a soft long hollow tube that is placed into a vein in the chest and ends in a larger vein just above your heart). Anxiously we tried to fill in the day, while Willow was not able to eat, then we were told that it would not be happening that day and that we would need to try again tomorrow, so we repeated the same thing the following day. Finally Willow went in to get her tests done."I still remember Willow’s face as she was given the cocktail of drugs to be put to sleep, I was beside myself as I tried to be strong for my little girl." Kirsty - Willow’s mum 

A few days later, Willow started chemotherapy and the oncologist told me the devastating news that Willow had neuroblastoma. She told me that her plan is to completely cure Willow, and explained to me that it will be a long journey with a long treatment plan ahead. 

My two other children had been staying with their dad, so I went to visit them and we sat them down and told them about Willow’s diagnosis, explained the Hickman Line to them and that Willow would need treatments which would mean she would lose her hair. This was the hardest conversation that I have ever had to do. As I gently broke the news to the boys, I saw their eyes well-up with tears, they were so afraid for their sister.

This was the first hospital admission of many more to come. We were only home for one day when we had to go back to the Emergency Department as Willow had developed a temperature. Whenever Willow gets a fever, she has to go into hospital and start antibiotics because her immune system is compromised by the chemotherapy, and any virus can pose a high risk of infection."After two more rounds of chemo, Willow underwent an operation to remove half of her ovary, as the chemo treatment plan for Willow will most likely make her infertile. This was another really hard thing to comprehend, my little girl who was 2 years old getting an ovary removed." Kirsty, Willow's Mum This is now frozen and Willow can access this when she is ready to start a family.

After five rounds of chemotherapy, Willow had another scan and another bone marrow aspirate, and we waited to hear the results hoping for good news. We were then told her primary tumour in her adrenal gland was getting smaller, but her bony disease was progressively getting worse, which was not good news. Willow then underwent a nine-hour surgery to remove one of her adrenal glands where the neuroblastoma tumour was located, and as a result of the massive operation, she ended up in Intensive Care for four nights. She managed to recover and then two weeks had to have more chemo, staying in hospital for three weeks and then for another four weeks. We missed Willow's brothers terribly as they were not allowed to visit due to Covid and the risk of infection. 

Recently, Willow underwent a test to find out the genetic make-up of the tumour and any mutations which is part of a clinical trial called PRISM. After this analysis, her oncologist discussed a trial drug with me called DFMO,
Difluoromethylornithine, combined with immunotherapy.  

Willow has started this trial and is still currently under this treatment regimen. Her last scans showed a significant improvement and stabilisation of her disease which was such great news. I am so hopeful that this treatment will assist Willow to get into remission and cure her. Her journey is going to be a long one as she will undergo high dose chemo, radiation and potentially more immunotherapy. Willow is such a strong brave little girl whose fight and determination amazes me each day.  

We need the community to help fund research to ensure that effective treatments are found for children like Willow and to also help make the treatments themselves less intensive and toxic. So much time is spent in hospital often as a result of the side-effects of treatment when a young child should be playing outside.

Banner image photo credit: Alex Coppel