She spent 2 very happy years at Burton Latimer Day Nursery before moving to Kingsley Community Nursery when she was 4. By September 1999 she was desperate to join her brother at Millbrook Infants School. Claire loved school and took all it had to offer with enthusiasm. After 3 years she said goodbye to her friends at Millbrook and moved to Wellingborough Pre-Prep for Year 3. In September 2002 she again caught up with Peter at Wellingborough Prep School. The overwhelming theme running through her school reports is of a cheerful, helpful and enthusiastic child.
She enjoyed her time at Brownies; she loved her ballet lessons and she was a keen member of the Junior Masquerade Choir, based at Latimer Arts College. We were deeply moved to receive letters and cards from all the schools that she had attended right back to Burton Latimer Nursery. The members of the Youth Masquerade Choir offered to sing at her funeral. Their beautiful rendition of ‘Can You Hear Me?’ was a very emotional moment.
At Wellingborough Prep she enjoyed the academic side, but her real loves were hockey and art. We have some treasured photos of her in full goalkeeper’s outfit ready for a match. From an early age Claire had always loved drawing, painting and creating. In the early days some of the less appreciated designs were those found on the sitting room walls!
At Wellingborough her skills began to develop and she was the proud winner of the Art Prize in Years 4 and 5. Her caring nature was also noticed by fellow pupils and teachers alike. A friend from Wellingborough once commented that if there was a school prize for the most helpful friend Claire would win it.
Then in August 2005 our lives changed forever.
Claire began to complain of headaches and then started being sick frequently early in the mornings. She started back at school, but only managed a few days due to the increasing headaches. I took her to our surgery 3 times and was told it was most likely a viral infection and that she would get over it in time.
The last visit was at 4.00 on Wednesday 14th September and I was told it might be a good idea to have her eyes tested because of the headaches.
By 6.30 that evening she was unresponsive and disorientated. I called KeyDoc and within about 30 minutes she was seen by a Doctor who said she needed to go straight to Dolphin Ward at KGH. When we arrived Claire was seen immediately and I describe her symptoms - the first of many times. At around 9.00pm Claire was given a CT scan and at 11.00pm on 14th September Tony and I were told that she had a brain tumour. I am afraid I cannot remember the doctor’s name, but I do remember that he was very gentle with us. We were told that without immediate treatment her outlook was bleak. It is difficult to explain our feelings at this point. My overwhelming memory of that evening is one of disbelief and unreality; this sort of thing only happened in Casualty – not to in real life and not to us. The medical staff were trying to reassure us that it was, hopefully, a benign tumour. Claire and Tony were transferred to The Radcliffe Infirmary, Oxford in the early hours of the morning.
At Oxford Claire was stabilised and given treatment for the pressure in her brain. The neurosurgeon, Peter Richards, operated on Monday 19th, removing as much of the tumour as possible. Claire recovered amazingly fast following the operation, especially once she was reassured that her hair was all (mostly) still intact. In fact she looked so well that 2 days after the operation a new nurse appeared on the ward and brightly asked Claire if her tonsil operation had gone well! She continued to improve and we were able to come home after 8 days.
However, Tony and I went back to Oxford on 29th September to be given the devastating news that the tumour was malignant. She had been diagnosed as having a glioblastoma multiforme tumour – a grade IV brain tumour. Our natural response was to ask what the long term prognosis was. Mr Richards said that of all the patients that he had treated with this diagnosis none had lived more than 12 months. He was honest to the point of brutality. Being told that it is extremely rare in children didn’t really help. Being told that we should go home and make the most of what time we had left with her didn’t help much either.
The following week Tony and I had an appointment with the Paediatric Oncology Consultant, Chris Mitchell at the John Radcliffe Hospital, Oxford to discuss the possible treatments. This is also when we first met Liz Leigh, ClicSargent Oncology Nurse. She was to become an indispensable part of our lives. Chris Mitchell was very good at explaining the options available to us. He did, however, leave us with little doubt that any treatments would only give us a little longer with Claire – there was no cure. He advised us to think carefully about the implications of any side effects of the treatments balanced against the possible benefits.
As parents we were now in a position of balancing the quality against the quantity of our 10 year old daughter’s life. We both felt that doing nothing was not an option. The chemotherapy offered, Temozolimide, had comparatively few side effects and could be taken in tablet form. This had the huge benefit of being able to be administered at home with no need for a visit to the hospital. We also decided to proceed with a course of radiotherapy to try to destroy what was left of the tumour. This was a harder decision as the potential effects on Claire’s developing brain were higher, and, of most concern to a 10 year old, would almost certainly result in hair loss. It would also have the most impact on family life as it meant travelling to the Churchill Hospital, Oxford, in the afternoon for every working day for 6 weeks. When it came to the crunch though, even a glimmer of hope was better than no hope at all.
So Claire started on a treatment of chemotherapy and radiotherapy for the six weeks leading up to Christmas. She was amazing during this time. She would be the first person up in the morning to have her breakfast and her chemotherapy pills. She would then go to school with Peter as usual until lunchtime when either Tony or I would collect her and drive down to the Churchill Hospital for her radiotherapy treatment – a round trip taking about 5 hours on average. She kept this up for six weeks without a complaint. There were tears when the first lot of hair fell out, but thankfully it was only in certain areas and careful use of hair bands improved her confidence immensely. It helped that the staff at the Churchill were wonderful and made a fuss of her at every opportunity. Her pink suede boots were the talk of the department.
During this time Peter, now 12, was also rising to the occasion. We didn’t hear a word of complaint when Claire acquired a portable DVD player to make the long journeys more enjoyable. He coped with never quite knowing who was collecting him from school; having two exhausted parents in the evenings and at the weekends and still managed to excel in his school work.
As you can imagine we had a quiet family Christmas, but were delighted that family from North Carolina and Ottawa were able to visit. After Christmas, Claire had chemotherapy every 4 weeks. The effects of the high dosage radiotherapy started to kick in and Claire became very tired, but she managed to go to school most mornings during the spring term. We took both children to Centerparcs in February for a much needed break. We have some lovely photos of Peter and Claire on the climbing wall and on the high ropes. I can still remember thinking that the doctors must be wrong – how could such an energetic, lively child be so ill that it was unlikely she would still be with us in a few months time?
We also received a much needed boost in March when Claire was given the chance to have a wish from the Make-A-Wish charity. Following lots of discussion she declared that her wish was to have her own art studio. The Make-A-Wish day was full of wonderful surprises. It started with Claire and Peter being collected from School in a white limo and being waved off by all of her year group (and a handful of teachers!) The Head teacher, Richard Mitchell, who was in on the surprise, commented later that he guessed that the limo had arrived by the cheer that arose from the classroom overlooking the drive! We were all whisked off to Hobbycraft in Northampton where Claire was able to combine her two favourite pastimes – shopping and art. Following a leisurely lunch at TGI we were returned home in the limo to discover what had been happening in the Studio. It had been transformed into a pink and mint paradise full of every art and craft supply that a budding artist could desire. The Make A Wish co-ordinator, Amanda, had discovered that Claire’s favourite animal was a pig, so there were also pigs of every shape and size, including a very elaborate pink pig made from balloons.
Just before Easter we managed a wonderful week in Scotland with friends - lots of bracing windswept walks on the beach, then retreating back to the farmhouse for supper. The four children were delegated to prepare supper one evening and the boys might have thought that they were in charge, but Claire knew better.
Unfortunately in early May the headaches started again. On the 9th May we took Claire to the John Radcliffe for a follow up scan. As a result of this scan Claire was admitted to the Radcliffe Infirmary again for another operation. She made a good recovery initially but there were signs that some damage had been done as her eyesight was starting to be affected. She was in hospital over Peter’s 13th birthday so for the first time ever we were not together for his birthday party. Peter was allowed a day off school on his birthday and celebrated becoming a teenager by his sister’s bedside on Leopold Ward. We came home on 17th May and managed one day at home.
Early on the Friday morning the tumour started to bleed and Claire was taken back to the Radcliffe Infirmary. It was obvious that more damage had occurred as she was now having significant speech and short term memory problems. She resolved the problem of not remembering anyone’s name by just smiling sweetly at all the medical staff as if she had known them all her life.
We managed to escape from hospital on Saturday 27th May, but in the early hours on Sunday Claire suffered a number of severe seizures. The ambulance staff, who arrived minutes after we dialled 999, were excellent and Claire was swiftly transferred to KGH. Following consultations with the Oxford doctors we were again transferred back to the John Radcliffe. Following 3 days on Ward 4c Claire was transferred to Leopold Ward at the Radcliffe Infirmary, which by now was beginning to feel like home. Her infection was treated, but it was clear that the seizures had caused further brain damage. It was also clear that the treatments were no longer slowing down the growth of the tumour. After 10 days the medication seemed to be controlling the seizures and we were able to take her home.
At this point we were introduced to the Community Children’s Nursing Team based at Kettering General. Our main contact, Jayne, became our lifeline. As Claire’s condition became more severe she was always there to provide a helping hand. She was always around to organise repeat prescriptions – by now Claire was on at least six different medications being given frequently during the day. Jayne sorted out a more suitable wheelchair and organised day care so that Tony and I could go to the School Open Day, Sports Day and Prize-giving with Peter.
It was from this point that her condition began to deteriorate. Her treatment moved from proactive to palliative; the emphasis being on caring for her at home. A special bed was put in downstairs so that we could care for her at home. Even though she was only 11 years old and weighed less than 25kg Tony and I were unable to carry her up and down stairs.
We were put in contact with Rainbows Children’s Hospice, Loughborough and all four of us went to stay for a few days at the beginning of July. Again, the staff were wonderful. The hospice is a haven of tranquillity. Claire was due to go back at the beginning of August for a respite visit so that we could take Peter away for a few days, but it wasn’t to be.
On 19th July Claire’s condition worsened. Jayne and Laura, the community nurses, arrived. Laura explained to us that there was now very little time left. We needed to decide whether to take Claire to hospital, to Rainbows or to keep her at home. We decided that Claire would be happiest at home; she no longer needed medical intervention and although Rainbows was a very suitable place, it was an hour’s drive away.
Looking back, all the signs were there to indicate that time was running out, but it still came as an enormous shock to hear it so plainly. From that point we had a community nurse with us constantly. Everything possible was done to ensure that Claire’s quality of life was undiminished. She died peacefully at home with us at 5.00pm on Thursday 20th July.
To lose Claire to such at such a young age is a constant pain that even the passing years will not heal completely. It does ease the pain a little however to know that she is remembered by so many with such love and affection. Our desire now is that the memory of Claire will continue to endure in a very positive way for years to come. It was a devastating moment when we were told that the type of tumour that Claire had was incurable and that any treatments were only able to give us a little more precious time together. This is why we are supporting the Samantha Dickson Brain Tumour Trust charity by setting up an ‘umbrella fund’ within SDBTT in memory of Claire.
Julie and Tony Rowland
Claire’s Fund has a web page on the SDBTT web site : http://www.braintumourtrust.co.uk/claire-rowland.htm