Cancer treatment has given my straight-haired daughter curly hair. When she started on it, her hair was straight but growing curly so it was curly at the top and straight at the bottom. Now that she’s off it, it’s the opposite, it’s growing back straight but still curly at the bottom.
But we are grateful for this treatment and the fact that Aoife was accepted onto a trial for an inhibitor drug that prevents the brain from sending signals to the tumour to grow. She was one of the first children in Ireland to go on this drug – it had only been done in the UK until then – and she stayed on it for 3.5 years. She came off that in March 2021 and it kept the tumour stable. There’s been no reduction in size but no growth either and we’re happy with that.
Aoife is now 11 and thriving. She is so outgoing and social, she would talk to anyone and I think that’s because she’s always been around adults in the hospital, because unfortunately, she’s never really had a break. She plays Gaelic, goes swimming and she’s the type to just get on with things. She’s vision impaired but once the tumours are stable, her eyesight is too. She works with the National Council for the Blind and has her schoolbooks enlarged and uses other equipment in school.
Aoife’s cancer was discovered by accident. She was born with a facial hemangioma, or a birthmark on her face. Because of that we had to bring her to the hospital for her six-week check up and they sent us to Crumlin to have it checked because, while it was on the outside of her cheek, they needed to be sure that it wasn’t internal too. That was how we discovered that Aoife had a brain tumour – Pilocytic Astrocytoma or Optic Nerve Glioma to be exact.
We were lucky, they monitored her so closely from then on. If it hadn’t been discovered then, she could have lost her sight. When she was two, her eyesight was affected and she needed chemotherapy. She started on an 18-month long protocol. It was so tough, she was so young to go through sickness and hair loss. But we got through it.
Unfortunately, after a year off, she needed another year of chemo. The tumours reduced while she was on chemo, but after six months off, she was displaying new symptoms and we discovered she had hydrocephalus (a build-up of fluid on the brain) and needed surgery for a shunt to drain the fluid. It worked on one side but not the other, so she had to have another surgery and then go back on chemo again for the third time.
Her diagnosis and treatment has affected all of us. Aoife’s older brother Rìan was four and her baby sister Caoilainn was only six weeks old when we found out that Aoife would need chemo for the first time. After 18 months of treatment, many ups and downs, we finally got back to some sort of normality when treatment finished but Rían was after turning into a real big boy and Caoilainn was no longer a baby, it seemed like we missed so much.
On Caoilainn’s first birthday, Aoife spiked a temperature and we had to go to the hospital. We learned not to tell Rían that we were planning to go somewhere, because plans had to be cancelled so often. When Aoife needed chemo for the second time, the kids were older and understood what it meant. It really took its toll on Rían, in particular.
After each chemo, I went back to work. I was shocked to find that you can only take carer’s leave once per child. So when Aoife needed chemo the second time, I wasn’t able to avail of carer’s leave again, although I could have for one of my other children. I actually ended up with mental health issues myself. I got very down and while I could get the kids up and out in the morning, I couldn’t do anything but go back to bed afterwards.
But we got through that in time and when we were all doing well, we had Cara, our youngest daughter, who is now two and has done so much for our family.
Thankfully, Aoife has been doing well, although we didn’t get the news we wanted this week, which was that Aoife’s tumours have grown slightly. It doesn’t seem to be affecting her and is not significant enough to start treatment at the moment so it’ll be a matter of keeping a close eye on things and another scan in early December. Aoife took the news so well, she is really the bravest person and we are staying positive things will go our way.