Ottie's Story

Our eldest daughter, Ottie, was diagnosed with Neuroblastoma at the height of the very first lockdown, in April 2020. She was three weeks away from turning four, and her little sister Audy had just turned two.

Ottie hadn’t been herself for a few weeks. She’d lost her appetite, was having night terrors and just seemed generally fed up with life. We spoke to GPs, health visitors, family and friends, and everyone thought she was anxious about Covid and being isolated at home. We knew something wasn’t right, but we could never have imagined the devastating diagnosis that followed.

Her time in hospital was far from normal. Nurses were hidden behind masks, we were confined to our room and Ottie couldn’t meet other children going through the same thing. We couldn’t meet other parents either. In fact, as her parents, we weren’t even allowed to be in hospital together. We had to swap over in the corridor, quickly sharing updates from the doctors, what she’d eaten and what the plan was for the next 24 hours, before rushing back to Ottie because she couldn’t be left alone for long. Her sister Audy never got to visit her in hospital.

Once treatment started and she began to feel a little better, her signature smile returned. She threw herself into all the crafts and activities the play team provided and, for a while, seemed to be sailing through an incredibly intense treatment plan: eight rounds of chemotherapy, six-hour abdominal surgery, high-dose chemotherapy, radiotherapy and immunotherapy.

Then, with just two rounds of immunotherapy left, she was admitted to hospital with what we thought was a tummy bug.

Devastatingly, it was a relapsed tumour.
Even more devastatingly, it was too aggressive to cure.
Ottie underwent another long and scary surgery, followed by several rounds of a different chemotherapy in the hope of prolonging her life. Eventually, we had to make the impossible decision to stop treatment and spend the time we had left together as a family.
With the help of some incredible charities and very special people, we were able to make some wonderful memories together. After a truly magical last Christmas, we checked into our local children’s hospice on New Year’s Eve 2021 for the final time.
On 31 January 2022, our beautiful Ottie passed away.
The past 4 ½ years have been really tough as a family, trying to manage our own grief, while supporting each-other – especially Audy who was only 3 when her sister died. How do you even begin to explain? Audy has been incredible though and astounds us every day. We talk about Ottie all the time and she’s very much with us wherever we go. We recently welcomed another daughter to our family – Wren – and while we are over the moon to have her, her arrival has brought with it a lot of complicated emotions. She’s very much like Ottie was as a baby, which is a wonderful blessing.

We are so grateful to have the opportunity to have a little holiday at Ben’s retreat – some family time away from home is very much needed and appreciated x