Five-year-old Finnbar Cork
was diagnosed with an inoperable brain tumour in March 2016 and despite a course of intensive treatment sadly died five months later.
Finnbar lived with his family, mum Claire, dad Tristan, brother Alfie, 13, and sister Nell, four, in Hethersett. They all received care and support from Quidenham, both during his illness and after his death.
Tristan and Claire tell their story...
“In March 2016 Finnbar was diagnosed with an inoperable brain tumour after having dizzy spells and unsteadiness, which had been getting progressively worse since the previous November. At first we were told it was a low grade tumour and he was given chemotherapy for ten weeks. His condition continued to deteriorate and in May we were told it was in fact a high grade tumour and that any further treatment would be palliative.
“By this point Finnbar needed constant care - he was unable to walk or use his hands properly and had difficultly swallowing. Within a few weeks he needed regular suction and medications to keep his airway clear. We managed to get him through a short course of radiotherapy in June but he needed constant care and symptom control drugs through syringe drivers.”
It was at this point Tristan and Claire were put in touch with EACH and introduced to our Symptom Management Team.
“After Finnbar was discharged at the start of July we spent a full week at Quidenham, where we were all looked after in every way possible as a family. Finnbar’s friends were able to visit him in an environment that was much nicer than a hospital ward. We then returned to his grandparents’ home where we received daily support from EACH nurses and one night a week a nurse would stay to help look after him so we could get some rest. We had regular input from the Symptom Management Team who monitored and adjusted his medication to make sure he was as comfortable as possible. We also benefited from regular counselling sessions and Finnbar had some lovely play and music therapy sessions - despite his severely disabled state, he really enjoyed them.”
Finnbar died peacefully on 5 August 2016. Since then Tristan and Claire have continued to receive support from EACH with regular one-to-one counselling sessions and by attending a monthly bereavement group. Alfie and Nell will also begin attending sibling groups this year.
“Using EACH allowed us to spend as much quality time together as a family in Finnbar’s last couple of months. All the support we were given was so important to us. The journey was so difficult and fast-paced, having the Symptom Management Team was so important - they were able to fight our corner at a time when we were becoming exhausted. Our stay at the hospice was so beneficial as it allowed us to rest. Nell especially benefited from the environment and her interaction with the play team – she called it a hotel!
“Without EACH we would have been totally exhausted and couldn’t have spent the time together at home that we did in the last few weeks. They took the weight of a lot of things off our shoulders so that we could concentrate on making Finn as comfortable as he could be.
“The counselling service that we are receiving has been so beneficial - helping us try to make sense of the life we have found ourselves to be living now and preparing us for the long and painful road ahead. We continue to feel supported through these sessions and events at the hospice that we can involve Nell and Alfie in.”
When asked what difference the nook will make, Claire and Tristan said: “Having a larger, purpose-built facility will allow more families to receive the great support and care that our family had in our time of need. We only had the benefit of EACH for a short period of time, but we witnessed first-hand the great support they give to families on a regular basis and how happy children are to be there. Having a facility that has been designed to accommodate children and their families in their most desperate, and in some cases, final hour is priceless.
“This time one year ago we were a happy family with three healthy children. We’ve now lost a huge, irreplaceable part of our lives and will never be as happy as we once were. We had heard about EACH and knew they were a fantastic cause which had supported families we know, but we never thought we’d be the ones that needed them! Sadly, as fantastic as it is, their service will always be required, and every child that needs their help deserves to have it. As sad as our world is without Finnbar, we can’t even begin to imagine how we would have managed, or where we’d be now, without their wonderful support.”