In her story below Jazmyn’s mum, Chantelle, recounts her daughter’s neuroblastoma journey; starting with the moment her family was told how very serious her illness was.
‘It was Anzac Day 2017 when we first heard the diagnosis. What we thought were mild growing pains was in fact High Risk Stage 4 Neuroblastoma.’
They began an aggressive treatment regime almost immediately, starting with two intensive cycles of chemotherapy over five days; each one was around a month apart. Then, the medical team started the invasive and painful process of harvesting Jaz’s own stem cells.
‘Jaz had to have a line put into her leg and for two days she wasn't able to move. It was really hard on her. The entire process hurt. She was in so much pain. We did the best we could over the two days, but she did it.’
Jazmyn’s bravery paid off - the stem cell harvest was a success.
However, the process wasn’t finished. Jazmyn then had to endure another two cycles of chemotherapy. When the medical team reviewed her scans, they discovered that the level of chemotherapy wasn’t strong enough. They had to increase the dose.
Thankfully, after two more rounds of high dose chemotherapy, the medical team started to see some positive signs that the therapy was working. With this news came the next step: surgery.
‘They had to operate to remove the tumour. The surgery was so scary, but she got through it.’
The family received good news from the surgeons: they had managed to remove most of the tumour. The next step in the treatment was for Jazmyn to have a stem cell transplant; where Jazmyn’s stem cells, collected earlier, would be transferred back into Jazmyn’s young body.
‘We were lucky to be able to stay in Adelaide as it turned out that Jaz needed two stem cell transplants. Each transplant was very hard on both her and her body. She wasn't able to eat or drink or even talk so she was on all sorts of pain relief to help her get through it. We were in hospital for 21 days straight. Being in total isolation was incredibly hard. We had to do the first one over Christmas 2017 and the second was over Valentine's day 2018.’
Once Jazmyn had recovered from the gruelling stem cell transplants, her treatment continued with radiation. This meant hospital visits every day except for the weekend.
‘For about an hour, Jazmyn would go in the room lay on a bed in her special pillow (made to fit her body which would keep her still), she would have music playing while it happened. I would have to leave her alone in the room and wait 10 mins before being able to go back in. This had to happen 21 times but finally on the 17th of April, it was done. We’d finally got through it.’
For just one month, Jazmyn and her family were allowed a break from her treatment. Then the next stage began: immunotherapy. She required one session every month for five months.
‘Immunotherapy is a one on one drug, so it meant she had to have a nurse with her the whole time. It hurt more than anything she had experienced before. She had to have a morphine drip and other pain meds and all sorts of other things to manage the pain. She would get temperatures and her oxygen would sometimes be low as well. It was very hard to watch … the pain in her eyes and the hate for the world and her own life. The hardest part for me was hearing her say, ‘I HATE MY LIFE’. It just broke my heart.’
Despite her many treatments, Jazmyn’s neuroblastoma journey was not over. Fourteen blood transfusions and 21 platelet transfusions followed. Unfortunately, Jazmyn proved to be allergic to platelets and had to have additional medication before each transfusion.
‘Finally, after everything we’d gone through, we got to hear those amazing words REMISSION. It was the 10th of December 2018 and we watched our daughter ring that bell. I cried. It was the best day of my life.’
Heartbreakingly on 18 September 2019, only eight months after she was considered cancer free,
Jazmyn’s neuroblastoma returned.
Jazmyn’s treatment began all over again with another nine cycles of high dose chemotherapy.
‘She's 1 on 1 again. Connected to morphine and on all sorts of drugs again. It's scary and she's in hospital so much more. We’re in for five days and then in isolation for about a week. She receives an injection every day for the week, then she's good for a week and then we start all over again.’
Jazmyn’s treatment regime continues as her medical team look for more options to help her body fight against the neuroblastoma.
‘Jazmyn is now 10 years old. She can't be a normal girl because of this disease. We all need to help find a cure for our children and our children's kids.’