Isla’s Story
Isla was diagnosed with neuroblastoma at just 7 years old and is currently undergoing treatment. Isla’s parents Hollie and Ben share her story on World Cancer Day to help raise awareness…
Isla started experiencing severe headaches, a stiff neck, raised lymph nodes and upper leg pain. We took her to the GP who diagnosed her with a throat infection and prescribed antibiotics. A week later the surgery phoned and said the swabs showed Strep A and more antibiotics would be needed.
However a few days later Isla was still in so much pain with her legs preventing her from sleeping so we visited the St Mary’s Urgent treatment centre. After a four hour wait with Isla crying because of the pain, we were told to go to A&E where she had her observations done. Isla had an X-Ray and just before we were about to leave the hospital the Dr wanted to check her blood pressure. It was through the roof so Isla had blood taken. After more waiting around, her results came in and her infection markers were extremely elevated so we were admitted to a ward for an overnight stay with a prognosis of ‘irritable hip after a viral infection’.
Before being discharged that evening, Isla had an ultrasound which showed inflammation and fluid around her hips. We were told that Isla was suffering from inflammation post virus and that we could go home. A few days later she had a check up with the orthopaedic consultant in the morning and had a blood test. We were told that if Isla’s infection markers were still high that we would need to come back for an MRI and we would be told that day.
We phoned the GP surgery to see if Isla's bloods were back as she hadn’t heard anything (never assume that no news is good news) the GP stated her markers were still really high and to take her back to A&E. Straight to A&E and an MRI confirmed there was inflammation around her hips. We were told to go home with regular paracetamol and ibuprofen.
After multiple trips back and forth being taken through the Orthopaedic Department back to A&E throughout April it was believed that an autoimmune disease must be causing the symptoms. Isla was still being prescribed antibiotics and discussions of potentially taking steroids had begun.
Finally, Dr Roy (we owe him everything) examined Isla’s abdomen and said he felt it was a little ‘lumpy and bumpy’. He ordered an ultrasound. That afternoon Isla had her abdominal ultrasound and the radiologist turned to us to tell us that Isla’s left kidney looked abnormal compared to her right. This needed to be reviewed, so we were sent back to our cubicle on the ward.
At 6pm, Dr Roy came into our room to discuss the findings of the ultrasound. They were words we were not prepared to hear. He told us that Isla had what appeared to be a 7cm mass above her left kidney. It had calcification and blood flowing through it so pointed towards a tumour of some sort but a further MRI would confirm.
Isla’s MRI took 2 hours and Isla remained still for the entire time. We were so proud of her. That afternoon Dr Roy came back in with two nurses to tell us that Isla had cancer and that exactly what was going on in her little body would be confirmed after a biopsy and a bone marrow test.
I had never heard of Neuroblastoma before at all and when we were given the diagnosis followed by the protocol of treatment I was stunned. It’s so aggressive and such a gruelling protocol. The diagnosis has been very hard to deal with and whilst we are only 7months in, we can’t really remember what it was like before as it is all consuming and we still have so long to go.
Isla has been extremely brave with her treatment. She struggled through the initial rapid cojec and has had a couple of failed stem cell harvests but we are getting there.
Isla has had three rounds of chemotherapy and immunotherapy and is currently navigating the challenges of her fourth cycle. This time, she’s been experiencing increased pain in her legs, feet, and wrists, along with persistent nausea and vomiting caused by the side effects of chemotherapy.
Isla managed to get a few days off over Christmas and as a family we went to Lapland UK where she had a great time. In January we prepared for a stem cell harvest. She has also had a scan to determine the function of her kidneys and this will determine whether she has high dose chemotherapy or surgery to remove the tumour first. Her tumour is in a tricky place and ultimately we have been told it is likely she will lose it.
Raising awareness is more than important - it’s vital. Parents should be aware to spot the signs and symptoms of neuroblastoma and therefore push for more answers. It doesn’t start and stop there. A&E and GP surgeries need to leave no stone unturned because commonly, Neuroblastoma is found when it has spread making it harder to treat. It’s so, so important we continue to raise awareness.
While we know there are challenges ahead, we’re focused on what truly matters - ensuring Isla experiences moments of normalcy and happiness despite everything she’s facing
A big thank you to Hollie and Ben for sharing Isla’s story.
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