Derian House Childrens Hospice
Matthew’s Story
When you look back in life, those moments of huge emotional impact, be they happy or sad, seem to be seared on the mind to be recorded in perfect detail forever......
So it was with our first visit to Derian House in November 1998. The walk from the car to the front doors of the hospice were the hardest steps imaginable to take, for they meant we were finally confronting the reality of our little boy being diagnosed as terminally ill.
Yet those same doors opened up to us an entirely unexpected world, along with some of the most wonderful memories we have, and gave us the opportunity to live a relatively normal life under, what were for us, totally abnormal circumstances. In sharing our experiences with you we must attempt to describe the indescribable, and ask you to imagine the unimaginable if you are to travel with us on the journey that is Matthew’s Story....
Matthew was in every sense of the word a bright and lively child, interested in everything, and able to read and count to beyond a hundred by the time he started school. But shortly after his 5th birthday we noticed a subtle change in his co-ordination, a change so slight it was difficult to be sure it was there. But consultation with his school indicated that they too had noticed a slight problem with his balance when playing ball games, which led us to seek further advice.
Matthew was referred to the Royal Manchester Children’s Hospital for a number of tests including a CAT scan to see if the problem could be identified. His symptoms had appeared so slight, so transient that we were totally unprepared for the shock of being told that Matthew had a brain stem tumour – a growth seated so deep inside his brain that any treatment should be viewed with hope rather than expectation. Nothing can describe the ice cold fear that numbed us at being told we were facing the very real prospect that our bright, beautiful little boy was going to die. A strange sense of unreality set in, and in a blur we accepted the hospital’s advice that Matthew’s best, probably his only chance, was a course of radiotherapy treatment. But the six weeks of radiotherapy, followed by a further six weeks of waiting and hoping did nothing to slow down the inevitable growth of the tumour, and we knew with absolute certainty that our worst fears were being realised. The shock and fear we felt at being told that Matthew’s tumour was showing no signs of regression, was so intense it hurt, and it went on hurting day after day.
At a time when rational thought seemed impossible we were faced with having to make two very difficult decisions within 24 hours. Firstly, any further, virtually experimental, treatment would guarantee considerable side effects, without any guarantee of positive benefits, and we decided against accepting any such offer. Secondly we were given the opportunity to visit Derian House Children’s Hospice to see how it could help us through the few weeks we had left together as a family, and after much thought we decided to accept. Our greatest fear was that any opportunity to look after Matthew ourselves would be taken away from us, and that it would be a sombre, sad place with children and parents desperately seeking a hope which wasn’t there.
Within minutes it became clear our fears had been groundless, for Matthew immediately saw it as a place to have a great time. Having been introduced to Pat, a member of the Care Team assigned to look after him he decided his name for Derian was to be "Pat’s Fun House", and so it became. From that first visit and throughout the following 6 months, the name stuck as it so perfectly described the hospice for all of us. It was never a sad place for Matthew, so how could it be so for us?
When Matthew’s illness was first diagnosed, we realised we would be nursing a sick child, but it soon also became obvious we were also caring for a child who exhibited some very strange behaviour! He began to pinch people’s bottoms, even people he didn’t know! Visitors would have their shoe laces taken from their shoes, with little chance of having them returned once Matthew had hidden them, and his stickers would be attached to anyone or anything that stayed still long enough. All this rather odd and at times embarrassing behaviour could be extremely difficult to cope with, and yet was accepted unquestioningly by everyone with whom he came into contact (often literally) at Derian House. Sleep patterns ceased to exist, and a good night’s sleep soon became a forgotten memory. For us during these difficult and traumatic months, the hospice became a lifeline, and we were encouraged to use it in whatever way benefited us the most. The team always seemed to recognise when we were really desperate for sleep, and would take Mathew off our hands, sometimes just for a few hours, to give us chance to recharge our batteries.
As Matthew’s illness progressed it became increasingly difficult to do even the most normal everyday things that everyone takes for granted. Caring for a dying child you love so much, who is changing in so many ways is heartbreaking, and leaves you emotionally ragged and physically exhausted. We were fortunate in living reasonably close to the hospice, and towards the latter stages of his illness one of the Hospice at Home staff from Derian would come to our home to look after and play with Matthew while we got on with some of the basic things in life, such as housework, shopping, and spending just a little more time with Matthew’s younger sister Harriet, herself a rampant toddler at the time.
It soon became clear that we had very little time left with Matthew. Throughout his illness, he was only in hospital overnight twice, once during some initial tests, and again after his first radiotherapy session, when it had been essential for his condition to be monitored constantly. Now, our greatest wish for him was that he would be free of pain, and able to die at home with us in the house next to the railway line, where so often in the past he would excitedly watch the steam trains on their arduous journey between Lancashire and Yorkshire. But time was running out for Matthew, we could see he was very tired and he became bedbound just five days before he died. Over the next few days he gradually slipped into a coma, and on a beautiful late spring morning in May, with us and his little sister lying next to him on his bed, Matthew died.
It seemed somehow appropriate, that very shortly afterwards, one of the old steam locomotives he had so loved to watch, roared past the house on its journey North.
Long before Matthew’s death we had decided we wanted to use the Sunflower Room at Derian House as a place of rest, and the hospice Chapel for his service. When the time came it meant we could say our final goodbyes to him in a place where he had been so happy, in familiar surroundings and among people who had come to know us and him so well.
Matthew’s remains are buried in the Forget Me Not garden at Derian House, and it is there that so many of our precious memories of Matthew remain.
