Claire-Anne's Story: A Star for my Daughter
Claire-Anne and her family have named a star for their daughter Isabelle.
Isabelle’s Diagnosis
In December 2016, following two years of increasing neck pain, Isabelle, age 16, was diagnosed with EHE - an extremely rare cancer - and was thrust into a world of hospitals and IV drips.
In November 2017, Isabelle was eventually transferred to The Royal Marsden and taken under the wing of Horder Ward where the phenomenal nurses managed her complex care needs and the palliative care team worked relentlessly to try and get her pain under control.
“Under the circumstances, it was the most dignified six weeks that she could possibly have had thanks to the dedication, support and guidance of everyone there. They addressed her as an individual and us as a family; I can’t even begin to describe what it meant to us.
On days when she was in her own room in the hospital, the palliative care team got special authorisation for us to bring in Isabelle’s cat Peanut as they could see how much it would mean to her. To have a bit of ‘home’ in a clinical surrounding meant so much to her and the effect was calming for us all."
Taking part in Celebrate a Life
Isabelle’s family named a star in her memory and attended the Celebrate a Life event in Chelsea last year for the first time, as a way of honouring their daughter and to say thank you to The Royal Marsden for the care and treatment she received.
Claire-Anne went to the event last year with her husband OJ and Isabelle’s brother, Sebastian.
“For us, coming back to the hospital for the Celebrate a Life event isn’t easy, but we’re with so many other people who are there for the same reason, which is comforting.
“We found out about Celebrate a Life through another parent who had lost a child. When she told me about it and what it involved, I thought it was such a beautiful way to commemorate our daughter, in a lovely setting and in a place which means so much to us as the hospital is only three minutes away from where she and her brother went to school, so the area has so much significance.
“The celebration was very special. Out in the open air in front of the hospital, it was just perfect and we enjoyed hunting for Isabelle’s star on the tree. It was nice to know you’re surrounded by people who are also there because they have lost a loved one.
“We’re still rebuilding our lives, but Isabelle is still very much a part of that and therefore the link to The Royal Marsden is strong, and the Celebrate a Life event is something we’d like to forever do in her name, to honour her.”
Isabelle’s journey was a long one. She spent the last six weeks of her life at The Royal Marsden having been treated at many different hospitals. We can’t sing the praises highly enough of The Royal Marsden, they treated her with dignity at a time when, in Isabelle’s words, she had been robbed of her life. No other hospital treated her like that.