Our NF journey started with my husband, Steven. He was the first in his family to be diagnosed with the condition and as a child suffered from epilepsy. Whilst he grew out of this, it was replaced by the increased growth of neurofibromas on his body that are extremely itchy. As he gets older, more and more neurofibromas are now appearing on his back and neck and he has a bowing of his right leg causing his ankle to bend outwards. He walks with a slight limp.
In 2005, Steve and I met. We knew that any children we had would have a 50 per cent chance of inheriting the condition. In 2008 we were blessed with our gorgeous son Max. Within six months we had a confirmed diagnosis of NF1. At that stage, he had 16 café-au-lait spots, which grew to well over 250 by the time he was 13. We stopped counting when he was about 10.
Max also has learning difficulties and has been diagnosed with both ADHD and Dysgraphia. He is now undergoing testing for other issues discovered in a cognitive test done last year. He loves high school as he is in a smaller class and is able to get the help he needs. This change has been great for him as he has never really enjoyed school with being in bigger classes. In 2009 we had our amazing baby girl, Tiarney. She was also diagnosed with NF1 at the early age of 6 months with nine cafe au lait spots.
From 12 months of age, both kids have been an ophthalmologist to get their eyes checked yearly. This led to the discovery of Bilateral Optic Nerve Gliomas in Tiarney’s brain - meaning she had a lump behind each eye that would need to be checked every six months. When she was 3 and a half, she was diagnosed with an optic nerve glioma in the pathway of her brain.
She was rushed in to have a port-au-cath inserted into her chest and started chemotherapy that afternoon. The treatment went for 18 months with the tumour shrinking away to nothing, putting her into remission. It was at this point that her port was removed and was able to start school with her peers.
Due to the nature of the tumour, she needed to go into surgery for a biopsy which resulted in a large cut across her head from left ear to right at the age of 8. Tiarney was in ICU for three days but recovered amazingly well from this operation.
The biopsy revealed the need for a change in chemotherapy treatment due to the type of tumour it was. Unfortunately, the new drug caused a staph infection in her big toe which required a “wedge surgery” that took a long time to recover from. She was not able to wear closed in shoes for about 6 months, meaning she missed some school during this time. Then in late 2019, she started to experience severe headaches and vomiting. I begged for an emergency MRI which resulted in surgery the next day to have a shunt inserted into her brain which was filling with fluid. She started a new chemotherapy drug as the tumour was getting bigger.
We were told this tumour had become terminal. Our world shattered into a million pieces. We now have MRIs every 3 months to track it’s progress.
We continue with the treatment in the hope of buying time for more effective treatments to become available. We have had a few stays in hospital in the beginning, but overall she has been doing really well and never lost a single hair as a result of her chemotherapy treatment.
Our knowledge of Neurofibromatosis had been limited to what could be found on Google until we found the Children’s Tumour Foundation. This was an opportunity for us to take a break as a family and enjoy NF camps with other families and learn more about the condition.
It was great meeting other people in the same situation and seeing the kids interact with other children who have NF. We had such a great time building life-long memories. We have missed these camps since COVID 19. At our last camp, we were lucky enough to meet Cam and Jules from Married at First Sight. They played with the kids and they built more memories.
The camp organisers always have a guest speaker organised and specialists in different fields there so you can discuss different issues and questions you might have.
Earlier this year I contacted The Children’s Tumour Foundation to ask for help especially as Max and Tiarney had only ever seen a Neurologist and an Ophthalmologist. We wanted more knowledge to see what else we could do for the kids and for Steve too. The CTF were amazing and sent information not just for us, but for the teachers too.
We have since had our first zoom meeting with other families and this was great to be able to chat again to people who understand. Not only did I want to hear the sound, I wanted to be able to commit the sound to memory and remember how that sound made me feel."
May is NF Awareness Month and CTF are lighting up the cities with blue and green on May the 17th to bring awareness to NF.
Neurofibromatosis has changed our lives in many ways but we take on whatever new challenge comes our way and have now worked out to reach out to get the help we need from people, not Google.
Thank you for reading our Cleary journey so far.....
Steve, Gill, Max and Tiarney