Ella’s story

Elisabeth (Ella) McArt was born on the 15 May 2019, Ella is the youngest of 4 children, it rounded off our, what it seemed our perfect family, (2 boys and 2 girls) all spaced 2 years apart.

About Ella

Ella was a contented baby, but from birth we noticed she would like to keep her head turned to one side, from 3 months she still struggled to hold her head unaided and she always kept it turned left and wouldn’t turn her head to the right, she started physio to try and correct this.

A month later, she started vomiting, we kept bringing her to the GP and referred to the hospital in our home town of Sligo, Ireland  on numerous occasions only to be told it was reflux, we tried arguing that our other 3 children had reflux and this seemed different but it fell on deaf ears.

Finally, one more visit to the GP in which he told us not to leave the hospital until a scan is taken. At last, after a lot of persuasion, they took a scan.

 

They spotted a mass on her kidney, we were told it was a tumour, more than likely a Wilms tumour, we were devastated but told chances of surviving were reasonably high. We were sent straight to the specialist hospital in Crumlin, Dublin on Sunday evening.

On the Tuesday, Ella was in surgery having her kidney removed, surgery was a success it seemed, our oncologist came back reasonably happy. Three days later, we were told by the oncologist that it wasn’t a Wilms tumour but wouldn’t know what type till early the following week, doing research online we feared the worst. Monday came, we were told she had a rhabdoid tumour, survival chances between 25-30 percent.

Our oncologist told us he wanted to do a scan of the brain and bones, we were told if the cancer was in either, there would be no hope. Our worst fears were realised, when the scan of the brain showed 2 tumours, one large and one small.

We brought Ella home the following day and had a lot of help from our palliative care team.

Trial Drug

We started looking into alternative medicines to see if it could help. The best option we felt was Tazmetostat, we contacted the company and after a couple of weeks of red tape, she was finally approved.

Christmas 2019:

Before she started Tazmetostat she had to go for an MRI so they could track her progress.

Her MRI was scheduled for 20 December; however, Ella got a bad chest infection and was very weak, we had to cancel the MRI and worries grew about her getting through Christmas but finally she improved. 

 

Her new MRI was scheduled for 9th January where it showed one of her two tumours had grown, another had started where her kidney was removed and there was a growth on her heart.

Tazmetostat

She started the Tazmetostat later that week, and inside a week we seen a massive improvement, she was smiling, interacting and moving her head more, we were getting cautiously optimistic, for the next 8 weeks everything improved, she was a smiley happy baby most of the time, she loved the attention of her big brothers and sister.

We went for her MRI again to see how the trial drug was working, all the tumours had stayed the same size or shrunk apart from one. The one at the back of her head had grown, again we were devastated, our oncologist give her roughly around 8 weeks.

Ella condition deteriorated around 10 April 2020, she started taking longer sleeps, she didn’t want to open her eyes as it was too painful but she was still alert, she would always grab Mummy or Daddy’s finger when we were at her side and seemed more energised when her older brothers or sister were in the room. Ella fought on until the 10th of May when she slipped peacefully away in our arms. She is deeply missed by both her parents and brothers and sister.

Ella is the bravest little girl we have ever known, even when in pain she always tried to smile, she never gave up, in November she was given 8 weeks to live, she lasted 6 months. We are so proud to call her our daughter.

Our aim:

No child should have to go through this pain, no family should have to go through this suffering, we want to raise much needed funds to help Grace Kelly Childhood Cancer trust do research into childhood cancer to help make the odds more favourable for this cancer. Please help support us by making a donation, small or large. Thank you.