Ari's story
When Ari was diagnosed with neuroblastoma at the age of 13, it came as a huge shock. She had never experienced any symptoms. Now, a year on since her diagnosis - and as part of Teenage And Young Adult Cancer Awareness Month - her mum, Mattea, shares her story…
“Ari had always been happy & healthy…”
Apart from the occasional stomach ache, Ari had always been happy and healthy. She had never experienced any symptoms to suggest anything serious was going on.
However, she had always been quite small for her age, so last January, we decided to take her to the doctor to discuss it. He examined her thoroughly and feeling something not quite right around her liver, he sent us for an ultrasound the same day. He explained that he felt her liver was enlarged - it could be something serious, but it could be nothing.
Ari’s road to diagnosis
The ultrasound picked up a 20cm tumour in her abdomen. It was initially thought that this was on her kidney, but Ari was subsequently diagnosed with a phaeochromocytoma. We were told this was a rare tumour on her adrenal gland, but it could be removed with surgery. We were assured that Ari did not need chemotherapy and would not lose her hair, and as she felt perfectly fine, there was no reason for us to doubt this.
In April, she was admitted to hospital in preparation for her surgery. We were told that she would need to be in hospital for three to four weeks prior to the operation, as she would need medication to bring her blood pressure down low enough for the surgery to be performed safely. As this was a phaeochromocytoma, it could not be safely biopsied, so the idea was to simply remove the tumour once the medication had taken effect.
But after three weeks, it became apparent that the medication was not having the expected effect on Ari’s blood pressure, as it should have done. At this point, the medical team began to have doubts about whether her tumour was a phaeochromocytoma after all. Now, there was no other option but to biopsy it and to have a MIBG scan.
The results came back and we were told that Ari had MYCN non-amplified neuroblastoma. The main tumour had spread into some of her lymph nodes, but it was otherwise contained. Because of her age, she would be treated as high risk.
“As a parent, I felt incredibly scared…For Ari, it was terrifying.”
I cannot put into words what it is like to hear that your child has cancer. I had heard of neuroblastoma before - when Ari had first been scanned four months earlier, the nurse at the time had told us that we should be glad she was not facing a neuroblastoma diagnosis. As a parent, I felt incredibly scared, but you have to soldier on. For Ari, it was terrifying. She did not take the diagnosis at all well at first - she did not want to be anywhere near the hospital.
We were sent home for a week to process everything and to get our heads round the journey that lay ahead. And a week later, we were readmitted to hospital so that Ari could start her chemo. She could not accept what was happening at all. She was fearful of the treatment and what it entailed and she was scared of losing her hair. Initially, she would not allow anyone near her, so treatment could not begin until she had taken time to process everything. Eventually, she realised she had no option but to go ahead with chemo - and she was started on Rapid COJEC in a bid to shrink her tumour.
On 15th November, she underwent surgery and it was a success. The entire tumour and her affected lymph nodes were removed.
By this time, we had been in touch with neuroblastoma experts in New York and in Barcelona, and both teams had advised us that Ari should not undergo any further treatment as this was likely to do her more harm than good. They categorised her as low to medium risk. So, since her surgery, she has been on no medication at all. She is regularly monitored and has scans every three months which have thankfully remained clear. There is no evidence of disease.
Looking to the future…
Ari is about to turn 14. She is happy and back at school. Her hair is starting to grow back - although she still prefers to wear a wig. Above all, she is feeling positive and is moving forward with her life.
As a parent, the whole experience has been horrific, mentally and emotionally. It is hard to just go back to normal life after everything you have been through as a family. I have not experienced the joy that I had hoped to feel once all of it was over. Maybe I will always have that fear in the back of my mind that her cancer could come back…
But for now, I know that we should feel positive and we should move forward with our lives. I am aware that for other families, the outcome is not always a good one. It has been a rough journey, but Ari is one of the lucky ones…
Our sincere thanks to Mattea and Ari for sharing their story. Search #TYACAM to follow Teenage and Young Adult Cancer Awareness Month to find out how the charities are raising awareness and how you can get involved this April.
If you'd like to help fund vital research into this rare and often aggressive cancer, please donate today. Thank you.
