In memory of Orla

Last August, Orla started to become unwell. She was sick, lost her appetite, was very tired and weak and became unsteady on her feet.

She was soon admitted to her local hospital where she stayed for 10 days. Following multiple tests, doctors told Naomi and Adam they’d detected a mass and fluid on Orla’s brain.

“Less than two hours after receiving the diagnosis, we were in the ambulance being blue-lighted to GOSH. We arrived within an hour, and they took us straight to her bed on Koala Ward,” Naomi recalls. “It moved so fast, within an hour and a half Orla was in surgery to have the pressure and the fluid drained from her brain.”

Naomi and Adam met with Orla’s neurosurgeon. “It was overwhelming, but we had confidence in everything that he was telling us. He just took control,” Adam says.

The following week, Orla had another surgery; this time to remove the tumour. A week later, Naomi and Adam were told that Orla’s tumour was cancerous. “It was a medulloblastoma, subtype SHH,” Adam says. “We were brought into a room with Orla’s neurosurgeon, and we met Orla’s oncologist consultant and her specialist nurses. At this point, I was just crying. I really struggled in that meeting.”

The family were trying to process Orla’s diagnosis, while at the same time making sure Orla was okay, Naomi remembers.

“That’s where the Play team and the occupational therapists were amazing,” she says. “We were really struggling to get her out of bed, and then one of the Play team had an idea to bring in a little toy kitchen. It just made the world of difference, Orla would always want to get down and play with it. In the space of a few days, she went from barely even standing up to walking down the hallway.”

Soon after, Naomi and Adam were told Orla’s tumour had an MYCN amplification, an incredibly rare mutation that meant she had to move to a high-risk chemotherapy protocol.

After her first cycle of chemotherapy, Orla was able to leave hospital. She returned to GOSH in November for the next cycle and ended up staying for almost two months.

“Normally, Orla would have been able to come out between cycle two and cycle three, but in the end, we stayed in GOSH for six or seven weeks because of how unwell she was with respiratory syncytial virus on top of having chemo,” Naomi says.

“Orla spent her second birthday in hospital, as well as Christmas and New Year. As much as that was probably one of the worst times, there were still some nice moments. The nurses and the Play team made it as special as they could.

“GOSH had decorated the ward to look like a winter wonderland, with fairy lights and Christmas trees. All the staff were dressed up and there was a real air of festive magic. Sadly, Orla wasn’t well enough to go to the GOSH Christmas party, but Poppy and Ava [Orla’s sisters] had the best time.

"On Christmas day, the staff came round with huge sacks of gifts for all the children, including Ava and Poppy. We are so grateful to GOSH for helping us make Christmas in hospital special despite the circumstance we faced.”

“We rang the end-of-treatment bell on 17 April and said goodbye to the nurses and the team who looked after us closely. Four of the nurses even came in on their days off just to share that special moment,” Naomi says.

“For the first month, Orla was still immunocompromised, so we were mostly at home. Orla was settling in and getting her strength back. It’s not like you’re out of hospital and everything goes back to normal, I think that’s something people don’t see. It was a big adjustment when we came home.

“Orla loved to dress up and play with her sisters. We’ve got a little wooden playhouse in the garden and when the weather was nice, Orla would be in there making food in her play kitchen and then jumping on the trampoline.

“At the end of May, after Orla had her PICC line out, Adam did the London bike ride for GOSH Charity and we went up to London to meet him at the finish line. We went up with my parents and the girls and Adam’s dad. Orla got to go on the train and cheer Adam on Tower Bridge. It was a really nice day.”

A couple of months later, things sadly changed again. Naomi and Adam took Orla to their local hospital after noticing that she looked off balance. Orla had an MRI scan due at GOSH a few days later, so they planned to keep an eye on her until then. However, they returned to their local hospital again soon after, as Orla had been sick. Orla was quickly transferred to GOSH.

“Orla was fine in the ambulance to GOSH; she was sitting up and we were holding hands. When we got to GOSH, we went back to Koala Ward to the High Dependency Unit, like we did the very first time,” Naomi says.

An emergency MRI scan at GOSH showed that sadly the cancer had come back, and her tumour had metastasized.

"We were just really, really shocked. We’d gone into research mode prior to this so we knew what the possible options would be, so we were asking about clinical trials and different opinions, but we were told there wasn’t anything they could do.

"We knew then it was very bad. If there was any treatment that Orla could have, it would just be about reducing some of the tumour cells to keep the disease stable and trying to get her more time.”

"One of the things that we were trying to do while managing her symptoms was trying to make memories because we knew we didn't have a lot of time,” Naomi says.

"We were able to arrange a big party with all our friends and family. We had a local hall and we had loads of people help us out with soft play and pizzas and there was an Elsa and a magician. Everyone got together for Orla. It was just a really lovely afternoon. Although Orla couldn't walk and she was still really sleepy, we could tell she still really enjoyed it.”

Initially the family were able to stay at home with Orla, with daily visits from different teams coming to support them. Eventually, when they knew the time was right, they moved to their local hospice.

“At the hospice, we were able to take Orla outside into the grounds, and we sat there with her in the sunshine. It was nice to all be together outside. It was calm and peaceful.”

Orla passed away peacefully in August, surrounded by her family. Naomi and Adam continue to fundraise in her memory.