Isabelle's Story - Noahs Ark Children's Hospital Charity

Isabelle's story

Back in August 2021, 11-year-old Isabelle was admitted to the Noah’s Ark Children’s Hospital for Wales with what doctors suspected was hydrocephalus, a build-up of fluid in the brain.


Isabelle had been unwell for several months with headaches and sickness but when her eye position started to change, her concerned parents, Jayne and Neil, took Isabelle to their local optician. An eye examination showed a build-up of fluid behind the eye.


Isabelle was admitted to Owl ward where she had a shunt inserted to drain the excess fluid.  The shunt did improve Isabelle’s symptoms for a short while, but within a few short months, they returned. In February 2022, the family’s worst fears were confirmed when Isabelle was diagnosed with a diffuse leptomeningeal glioneuronal tumour. Isabelle had three months of chemotherapy but in June 2023, scans revealed that the tumour, which Isabelle calls ‘Gary’, had grown.


The growth of the tumour was putting an immense amount of pressure on Isabelle’s brain and in 2022, she had a grand mal seizure.  Isabelle was rushed to the paediatric critical care unit where she was sedated and ventilated to allow her body and brain to recover.


After a week stay on PCCU, Isabelle was moved to Rainbow ward where she started a different type of chemotherapy to stabilise the tumour. But the tumour continues to create problems for Isabelle, causing her to become increasingly more confused and forgetful. A recent set of scans show that the tumour has grown again.


Isabelle has received a total of seven brain surgeries including shunts, shunt revisions, and biopsies and will undoubtedly require more. It’s  a very worrying time for the family, but  from Isabelle’s first admission onto Owl ward to her latest stay on Rainbow, play specialist, Kylie has been a constant.  Kylie has been with Isabelle for every admission, every scan and every piece of news.


Kylie said: “When Isabelle was first diagnosed she needed to have a central line. I did a lot of work with her to prepare her as she was having an incredibly difficult time coming to terms with her diagnosis. I arranged for mum and Isabelle to come in for a 121 where I could demonstrate the central line through Chester our central line mannequin that was funded by the Noah’s Ark Charity back in 2022/23. We have done a lot of preparation work together and have worked on breathing techniques, which as well as simply chatting to Isabelle, helps to relax her a lot. 


“Isabelle has done amazingly to overcome so much. I am so proud of her. It is amazing to see how far Isabelle has come over the years. It is one of the reasons I love my job.”


The play specialist service works across inpatient and outpatient services to provide support to thousands of children treated at the Noah’s Ark Children’s Hospital for Wales each year. And it’s a service that charity supporters like you help us to fund.   The play team enrich the experiences of children and families during their stays by reducing anxiety and supporting children to understand their treatment in an age-appropriate way. They ensure that children are still able to reach their developmental milestones despite what are sometimes long stays in hospital and support young patients’ well-being by helping them to express their feelings and emotions through play.


Isabelle’s mum, Jayne said: “Kylie has been our constant, a familiar face on some dark days. She is always there to support not only Isabelle, but me too. She reassures her when she’s anxious with just a chat about things Isabelle is interested in, like jewellery. It’s so nice to have someone who isn’t medical.


“In Isabelle’s latest MRI, Isabelle was very anxious. Kylie dropped everything to be there for her and even helped to keep her still by climbing into the MRI machine with her. The play team on Rainbow ward and throughout the hospital are a vital part of the hospital environment. Kylie is a great support to us as parents too. We have build such a close relationship over the years. We are so grateful to have her in our lives.”


It’s thanks to people like you that the Noah’s Ark Children’s Hospital Charity  can help funds the vital work of the play team on an ongoing basis, which means more children and their families like Isabelle’s can be supported by Kylie and the play team. Thank you.