Eashan’s NF1 story

Why Run: January 2022, the beginning of 18 months chemotherapy 

My son Eashan is the biggest chatterbox you are likely to ever meet. He has a lot to say, a lot of questions to ask and I am regularly told how polite and engaging he is, as he happily strikes up conversation with whoever he meets. Despite his happy disposition, his exuberant questioning and love of learning, he is going through a life-changing battle.

Eashan was diagnosed with Neurofibromatosis (NF1) after drastically losing his eyesight when he was 5 years old.

An emergency MRI showed he has a tumour (Optic Pathway Glioma-OPG) on his optic nerve. This news was delivered to us on New Year’s Eve (2021/2022) and he started his 18-month chemotherapy journey soon after in January 2022.

When Eashan started school in 2021, he was more than ready; he could not wait to start school! He started school brightly but very soon after, his confidence took a sharp tumble and this is what scared me the most when it became apparent.  He started becoming upset, anxious and wouldn’t sleep well through the night.

This was echoed by the teaching staff and triggered us to see the optician. He was thoroughly puzzled by him because while it was clear that his eyesight was bad, he could see nothing wrong inside. The issue had to be behind them. He thus referred us to the eye hospital. This tumultuous and frustrating experience took weeks, often due to clerical errors, phone calls to no avail, referrals, and hopeless dead ends. During this time his vision was declining and on Christmas Day it had reached the point where he couldn’t see his presents or our faces properly. Shortly after I took him to A & E and I had to persist that his decline was absolutely to be taken seriously and with immediacy.

Remarkably, the consultant took one look at him and had an immediate suspicion which led him to sanction an emergency MRI - there were coffee-coloured patches and freckles that cover his body. The scan showed that he has a brain tumour on his optic nerve and he was immediately transferred to Queens Medical Hospital in Nottingham for further tests and diagnosis. We were then given the official diagnosis of Neurofibromatosis Type 1, as per the first consultant’s suspicion. We were then told he needed 18 months of chemotherapy and surgery to have a port fitted under his skin to facilitate treatment. Chemotherapy started straight away.

The next few months are a complete blur. Hospital stays and appointments were very frequent and very difficult, exacerbated by COVID restrictions which meant that we were rarely together as a family. Chemo devastated Eashan’s spirits but he fought so bravely. He was also confirmed as being severely visually impaired (blind) and we were told his vision would not regain and the little he had left would also be likely to reduce. Looking back to this, it was all such a shock I’m not sure how we processed it all. Eashan was confused and scared suddenly being in hospital meeting different nurses and consultants. Each round of treatment was hard to bear, particularly for Eashan, but we were struck by how brave all the little boys and girls are in the Paediatric oncology ward at QMC. Eashan had further complications such as infections and needed blood and platelet transfusions.

Even through the lowest of times, Eashan has the sort of spirit that made others smile. He is very cheeky with the nurses (both in hospital and the KITE team) and they have developed a lovely relationship. It took him a lot of time to get used to all the treatments, scans and at-home-visits. We are so proud of how he has evolved. He is so confident now that they often bring student nurses with them.  A million miles away from where we were at the beginning. He also talks very confidently about his brain tumour to his peers.

We were told the aim was to keep the tumour stable and retain whatever eyesight he had left but fortunately, treatment has exceeded expectations and he has, to the surprise of medical professionals, restored eyesight in his right-eye, while he is completely blind in his left.

I fell apart at the beginning, but honestly Eashan has made me the proudest Mum on the planet, he is a special boy, loved by many and his personality is out of this world! He is the cheekiest, chattiest boy! He loves to learn, and nothing gets in his way.

You wouldn’t notice all the difficulties he has if you met him, he has adapted so well. He and his sister have a lovely relationship and although like all siblings they squabble, she looks up to him so much! He is our superhero.

As Eashan’s Mum, the advice I would give others in this situation, is you are your child’s biggest advocate and at times you have to fight their battles, take on their emotions and shield them. You also need to refill your cup to be able to pour. Take a break so you can be stronger. For me, this has been through running. Running makes the world stop for a little bit, gives me fresh air and time to manage my emotions one step at a time.

Why Run: July 2023 Eashan's end of chemo and the start of the 2024 London TSL Marathon journey

280 runs later and 1,961km covered since Eashan first started his treatment, we are now in preparations for Eashan's end of chemo celebration and fundraiser for Nerve Tumours UK.

August 2023

Its been a really busy few weeks with Eashan finishing treatment and his 'Brave Party'.

Eashan and his little sister Eila are going to do a sponsored 1km on Eashan's birthday weekend at Alton Towers. We did it last year, but Eashan didn't have enough energy then as he was on chemo, so he really wants to give it a go this year.

September 2023

Just wanted to post a short update. We are building up our running! 

Eshan had an MRI some weeks ago and we are awaiting the results.

Having been through all this and understanding the lifelong nature of the condition, we anticipate that there are more challenges ahead.

I also completed my first half-marathon (Great North Run) and raised over £5,000 for Eashan’s hospital ward (through Nottingham Hospital Charity). 

Our next challenge is already in planning as my husband and I run the London Marathon 2024 for Nerve Tumours UK. Our places have just been confirmed. I feel that these challenges are necessary for us to continue to cope with this journey and allow us to focus on something positive while spreading awareness.

This is also why I have set up an Instagram page where I have pledged to run 100km per month for the duration of Eashan’s treatment. I have also recorded a podcast ‘running…while my son is on chemo’

Of course, he is my son, so I am slightly biased, but he is the most loveable, chatty, sincere little boy. He is ridiculously confident and has been since a tot, striking up conversations with all he meets, he is always greeted by everyone in our village and loved by many.  He has been unbelievably brave, and I am in awe of how he has handled the last year and a half. There is something very special about Eashan and I truly believe he is going to do brilliant things in his life.