Ellie's Story | Julia's House

"I thought this was going to be the last picture of them together." Jenna, Ellie's mum.

This photo of Ellie and her big brother, Tom, was taken the day before her operation and for a long time we could not look at it because it was too raw and full of emotion.

We were all there – me, Luke, Tom, the grandparents and as we were about to say our goodbyes I asked Tom to go and stand by Ellie’s hospital bed for a moment. Nothing was said but everyone in that room knew why I wanted to take a photograph.

Ellie was normally such a sunny-natured, happy girl, always smiling and laughing but her whole mood changed. She was just 6 months old when we discovered she had a massive brain tumour. Left for even a few more days, it would have been too late to operate.

Things moved so quickly, it was really frightening. Ellie was in surgery for 14 hours and we were told there was a very real chance she would die. Although she survived, she suffered a stroke which left her partially-sighted and with no movement down her right side.

She was this tiny bundle with a bandaged head lying in my arms and we were told we should just enjoy the time we had left with her.

She started chemotherapy but there was only a slim chance it would work.

We wanted her home for Christmas but a week before she needed another operation to relieve pressure on her brain and we risked losing our little girl all over again.

In the end we had just five hours together as a family on Christmas Day. We could not deal with cooking or anything other than just keeping Ellie safe. She had a feeding tube up her nose and into her tummy and needed injections. It was absolutely terrifying being at home, alone, looking after a seriously ill little girl.

Ellie came home again on New Year’s Eve. She was due to have an injection just before midnight but we couldn’t wake her up, she was like a rag doll. While everyone in the village was looking at the fireworks, we were looking out for the flashing lights of an ambulance.

The whole world celebrating while our whole world was on hold.

We were like zombies, just so exhausted trying to cope. The word hospice was mentioned and we were horrified – but that was before we truly understood what Julia’s House means for families.

We started having home care sessions for Ellie – we called it ‘Tom Time’. We would take him to the park to feed the ducks or go swimming, a chance to totally focus on him. Ellie comes first, she has to, yet Tom – poor little sausage – has suffered too.

Then just before the Coronavirus lockdown Ellie got pneumonia because of her weakened immune system and ended up in hospital, so we had to shield for 12 weeks to keep her safe.

Ellie’s nurses would phone and check everything was OK and help out with picking up prescriptions or food. They were there for whatever was important for us and being able to feed the family was our biggest need at that point!

Trying to do a job, home school Tom and keep up with all of Ellie’s speech and language targets and physio was a real struggle, so when we were able to have care again it was an absolute godsend. We had extra sessions – two a week – giving us peace of mind while we worked.

Ellie still has brain scans every three months. Every time we’re scared that something will show up; we call it ‘scanxiety’.

Her latest results, just before Christmas, showed her condition remains stable, but she is still vulnerable.

We love Christmas, the build up, all the traditions and excitement, but for us it will always be associated with heartache and being frightened for Ellie’s life.

We are trying to find a new normal but really nothing will ever be normal again.

One thing that's stayed the same though is Ellie's giggle. Through everything, she's been so tough and she's so happy - you can't help but be taken by her giggle and smile.

It has been an emotionally exhausting journey, a bittersweet cycle of hope and despair. We're just so thankful Julia’s House has been by our side.

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