Ella’s Story
Our home in Armagh was a normal, busy, loud and happy house with my husband Ken, our daughter Ella and son Jake. However, our world was turned upside down when Ella, at just 7 years old, was diagnosed with cancer.
The first notable symptom was that the right side of her face dropped suddenly. She had an appointment with the doctor that day for another minor issue, so he carried out some tests and diagnosed Bell’s palsy. We were relieved when he told us that we would see signs of improvement within two weeks.
But it didn’t improve. Ella’s symptoms got worse.
Ella was now starting to lose her balance. So, it was back to the GP again where Ella got quite ill in the waiting room and so we were sent immediately to Craigavon Area Hospital. However, at the hospital, they couldn’t do a CT scan until the next day and sent us home. I was totally oblivious to the severity of the situation, thinking they wouldn’t possibly send us home if there was anything serious wrong with Ella. The next morning, we got a call to take Ella straight in for a CT scan. We were told we would have to wait a few hours for results. After seeing a huddle of doctors, we thought someone was probably about to get bad news.
We never imagined in a million years that it would be ourselves.
A team of doctors arrived with a play therapist who asked Ella if she wanted to go and get some toys with her. At this stage I realised there was something wrong. When they told us they had found a mass on her brain, it felt like I was being crushed.
They had organised a bed at the Royal Victoria Hospital for Sick Children, and we were to go straight down, so we knew that this was very serious. We were overwhelmed, devastated and in shock. We didn’t know what to expect. Was Ella going to be okay? How will her brother Jake take the news?
Then treatment started…
Ella started treatment right away and it was so tough on her. She went through 10 surgical procedures in the first few months of her treatment, had 30 sessions of proton radiotherapy and went through eight courses of chemotherapy over 36 weeks. After her first surgery, Ella suffered posterior fossa syndrome which meant that she essentially returned to a newborn state.
She had to learn to do everything again. Sit, stand, walk. Even to swallow.
I am in awe of Ella’s strength at such a young age. She dealt with everything so well, taking the oral chemo that made her feel so sick, but she knew it would help get her cancer to go away. She pushed through the tough physiotherapy sessions, squealing with pain and frustration. Watching Ella go through so much has been one of the most difficult things our family has or will ever go through.
After treatment, Ella had individual therapeutic support sessions with Kathyrn, her Cancer Fund for Children Cancer Support Specialist. Ella talked to her about what she went through and how it affected her. She loved to see Kathryn. Her whole face would light up.
Ella also took part in group sessions for 8-11-year-olds. They participated in various activities together and it gave Ella a space where she could share her feelings and build connections with other children who had gone through something similar. In that safe space, she didn’t feel different, she could be herself.
Jake really struggled watching his sister go through cancer treatment. Jake took part in a residential group support for siblings. Here he met other children who had a brother, sister or a parent impacted by cancer. It gave him a chance to connect with others who were going through the same experience as him. And it helped him to learn how to process the strong feelings he was struggling with.
Also, Ken and I were given the opportunity to enjoy a free therapeutic short break for parents at Daisy Lodge, at the foot of the beautiful Mourne Mountains in Newcastle, Co. Down. Daisy Lodge gave us a safe space to let go.
At Daisy Lodge, with the support of their incredible Cancer Support Specialists we could unpack the fear, worry and anxiety that we faced every day. The team at Daisy Lodge were fantastic. We also gained so much from meeting other parents who were going through a similar journey with their child.
Ella is still affected with physical issues and has difficulty with her balance and walking. The tumour was pressing on one of her optic nerves and has caused damage to her right eye, so she has limited vision, and the chemotherapy damaged her hearing in her right ear, so she now wears a hearing aid for that. Life isn’t the same as it was before. But Ella is trying her hardest to find her way in everything she does now. She won’t let anything hold her back.
