Ella's story
Ella's Story
In November 2018, Ella and her family had the news that no parent expects to hear - that her sickness and vision changes were in fact due to a brain tumour. Up until 2 weeks before this diagnosis she was a fit and healthy 4 year old who had just started school and was showing no noticeable signs of what was growing in her head. After being sick on and off for two weeks, she also started complaining about blurred and double vision. So her parents took her for a precautionary eye test, which resulted in the optician noticing pressure behind her optic nerve and referring them to their local hospital.
"NOTHING PREPARES YOU TO HEAR SOMETHING LIKE THAT."
In the next couple of whirlwind days involving a series of eye tests and scans, doctors announced that Ella had a grade 4 medulloblastoma which had already reached the size of a satsuma. The family were immediately sent to a specialist team at St George’s Hospital in South London. After an 8 hour surgery, Ella had 99% of the tumour removed and an EVD fitted, which drains from inside the brain cavities to release pressure. She then spent the next six weeks in hospital.
Ella’s mum, Claire, said: "Our beautiful little girl had generally been well in herself. The news that something was seriously wrong was unfathomable. Nothing prepares you to hear something like that. If Ella’s tumour had been left undetected for much longer then it could have entered the brainstem and the possibility of surgery and the outcome could have been very different".
"We will never forget the heartbreaking image of Ella as she rode in her wheelchair down to the MRI machine. She was as bright as a button and so oblivious to the serious nature of everything going on around her."
Ella had surgery to remove the tumour which sadly got infected a week after the operation. The drains also failed to stop the pressure in her brain from building. So, a shunt was fitted to remove any excess fluid, which she will have for the rest of her life.
Following the surgery, Ella had to learn to walk again, she lost movement on the left hand side of her face, has permanent double vision and she also has difficulty with balance and coordination. Whilst still at St George’s, Ella’s tumour was sent off for analysis to decide about the treatment path. The option of proton therapy had been discussed but it was dependent on the subtype of the tumour. As the facilities in Manchester and London were not yet open or accepting only trial patients – Ella would be sent to Germany via The Royal Marsden if she was applicable, but this would have to be signed off by a panel and would require her to be strong enough to travel. Once she had recovered surgically, although unable to walk – it was decided Ella could leave St George’s but should start a round of chemotherapy whilst they still awaited the subtype results. A week after leaving hospital, and just as Ella’s first round of chemotherapy was about to start the family heard that Ella had been accepted to receive proton therapy. She spent 6 weeks in Essen, Germany after which she came home and had a 6 week break before resuming the rest of her chemotherapy treatment, totalling 8 rounds, which finished in November 2019.
One year on from when the nightmare began, Ella was able to ‘ring the bell’ which signals the end of her treatment. She is also enjoying a phased return to school so she can get back to her favourite lessons including music, art and maths.
ELLA WAS ABLE TO ‘RING THE BELL’ WHICH SIGNALS THE END OF HER TREATMENT.
The journey will continue for Ella as she has 3 monthly scans and also continued rehabilitation for her ataxia and facial palsy. There have also been the longer-term side effects from the surgery, chemotherapy and proton therapy including slight hearing loss, residual fatigue and potential hormonal imbalances - all of which need monitoring and potential treatment.
As her body gets increasingly stronger with the help of regular physiotherapy, she is also back playing around like a young girl should be and she also enjoys swimming and rock climbing.
Claire said: "The journey has been long and our lives are now following a different path to any that we could have previously imagined. Ella takes our breath away with the joy and determination she manages to muster even through everything she faces."
"Whilst so many choices are taken away when someone gets ill, we believed we had a choice on how we wanted to face our journey and have tried to face it with as much positivity and joy as we could. This has been helped as we have been supported by the most amazing friends and family as well as the kindness of complete strangers."