“I would give anything to be back in the room with Orla”: Orla’s Mum shares her story this Mother’s Day

Ahead of Mother’s Day, mum Naomi speaks about her daughter Orla who was diagnosed with a brain tumour at just one-year-old. She went on to have multiple surgeries and high dose chemotherapy treatment at Great Ormond Street Hospital in London but sadly, in August 2023, Orla died at just two years old.

In her own words, Naomi shares more about her daughter Orla and a message for other mums of children with cancer this Mother’s Day…

I’ll never forget 29th September 2022, hearing the words our beautiful girl had a mass and fluid on her brain. We’d been at our local hospital for 10 days with suspected gastric issues when on 29th September, Orla’s heart rate plummeted and a CT scan was performed. We were then given the devastating news a large mass had been found on her brain and we had to be blue lighted by ambulance to GOSH.

What followed was the most unimaginable time any parent should go through. Orla was officially diagnosed with medulloblastoma. The most common malignant paediatric brain tumour.  

Orla had two major brain surgeries within the first 5 days of arriving at GOSH. What followed was 7 months of intense chemotherapy, MRIs, physiotherapy, blood transfusions and so much more. It’s quite hard to put into words just what your child and you as a parent go through whilst they are in hospital with cancer. 

Orla’s treatment kept her more or less permanently in hospital for 7 months which meant during that time, myself and Adam had to be single parents splitting our time with Orla in hospital and at home with our two daughters Ava and Poppy who were 8 and 6 at the time. Trying to keep some form of normality for them was extremely hard. They missed their sister, and they missed us being a family at home. When Orla was home though they were so attentive to her needs and were the most amazing big sisters. They absolutely adored her. Losing Orla has had a massive impact on them and like us, a part of them will always be missing.

Whilst in hospital we decided to document Orla’s journey and set up an Instagram account which helped us keep loved ones up to date all in one go but also connected with other cancer parents. These other families become your extended family. You share experiences and share the knowledge you gain from being in hospital. There is so much cancer and hospital terminology that you just become an expert and sharing that with other parents definitely felt therapeutic in a way. 

During Orla’s high dose treatment, she contracted very severe sepsis. It came out of nowhere and none of us were expecting it as she was so near to coming out of hospital. Orla was rushed to PICU where her heart stopped for around a minute and we nearly lost her then. We thought Monday would ever be as bad as that day. As a parent you never think you’ll have to push that emergency triangle in the room. She overcome it so quickly though and 2 weeks after that we left hospital. That was the end of her treatment and we were going back to our new normal. 

Her end of treatment scan was clear which was such a relief. Over the next 3 months, we started to get back to normal at home, adjusting to Orla’s feeding regime on the go (she was fed via a PEG in her stomach), trying to get her appetite back eating food, physio appts, speech therapy appts and even went on a post treatment break to Center Parcs. 

Around the 10th July I started to notice Orla looked a little off balance when walking. I thought I was being paranoid as her 3 month scan was the following week. Oncology patents call it ‘scanxiety’. Anxiety over an impending MRI scan. I spoke to our oncology nurse at our local hospital with my concerns and she said we could take her in to be assessed but I didn’t want to waste their time. By Friday 14th she really wasn’t right walking so I took her in. She did ok with the assessment and they liaised with GOSH about the scan. As we are due in on the Tuesday they said to hold tight as they wouldn’t be able to bring it forward. Sunday morning we woke up and Orla has been sick in her bed. We knew what this meant – pressure sickness. Another symptom of hydrocephalus (fluid in the brain). We knew what this meant. We went in for a CT scan and then GOSH asked for us to go in so via ambulance again we went to GOSH. The following day they performed the MRI and had to put in a permanent shunt and we were given the devastating news her cancer had come back and there was now no cure for her, it was just a matter of time and they didn’t think we had long. 

Three weeks later, Orla passed away at our local hospice. It all happened so quickly and the last part is still hard to come to terms with. She wasn’t given any time. 

Mother’s Day is always something I find quite difficult now. The last one I spent with Orla was in hospital during treatment. However we made it what we could and just played in her room and spent time together. For anyone spending it in hospital with their children, just cherish what it is. None of us what to be there but we have to make the best of a bad situation and as bad as it sounds. I would give anything to be back in the room with Orla if it meant she was still here.