Watch a film about the Goldby family story
Elise's story I noticed that Elise hadnt been quite herself for a few weeks, she had been tired and listless and on the day we took her to hospital, she’d refused to get out of bed. Then I noticed a bruise on her leg which had come from nowhere. I have a nursing background and on the way to the hospital that Sunday morning, Leukaemia had crossed my mind. Elise was so young, she was only 23 months old and she could barely speak, so couldn’t tell us what was wrong with her.
We arrived at the hospital and didnt have to wait long - the blood test results came back almost immediately. Elise had Leukaemia. We were stunned. I know that it sounds crass to say but you never think that its going to happen to you - you really don’t. Those words telling you that your child is seriously ill are quite frankly, life changing and nothing is ever quite the same again.
Those first few days at the hospital were very strange but by the fourth day, Elise was responding well to treatment and making good progress. She was even well enough to get out of bed. She quickly discovered where the playroom was and started to make friends with the other children in the ward. As far as she was concerned, this place was better than home! In fact, during the many months that we lived in those hospitals, Elise grew to love them. She spent her second, third, fourth and fifth birthdays and even some Christmases in hospitals. She felt safe and loved the attention she received from the medical staff. She was always very co-operative with them, so much so, they called her Elise ‘good as Goldby’!
Finding out about Rainbow Trust
We were first introduced to Rainbow Trust within a couple of weeks of Elise's diagnosis by the hospital staff. In fact, our consultant at our local hospital, St Helier and the Royal Marsden Hospital was Simon Mellor who is now the Chairman of the Trustees at the charity. We were told about Rainbow Trust’s services but we didn’t take them up on their offer immediately - we just needed time to gather our thoughts, our little girl was seriously ill.
Spending time together at Rainbow House
After a few months, we had our first visit to Rainbow House in the spring of 1994 and from the very beginning, Elise was hooked! She loved everything about the place; the pool, the toys, the garden and of course, the other children to play with. Soon after we arrived, she had sought out the other children and after a short while, they were all playing some game together. As far as she was concerned, Rainbow House was the best place she'd ever visited. It was also a great place for us to spend some time together as well, the last six months had been awful and Nick and I were very worried about our son Alex - everyone’s attention had been on Elise. Rainbow House gave us the opportunity to spend quality time with him. More importantly, it gave him the chance to interact with others and make his own friends.
It was the only place where I could relax - it gave us the chance to be ‘normal’ for a while and it took away the stress and strain. We could go there just the four of us as a family and do whatever (or not!) we pleased.
Elise adored it at Rainbow House and while we were still on our first visit, she begged us to book in another weekend. During 1996, we were frequent visitors to the House and we always went home with precious happy family memories of our time there.
Time to say goodbye
Following Elise's eventful Bone Marrow Transplant in 1998, (her donor was unable to give his bone marrow at the last minute) her Leukaemia went into remission and we could start to enjoy a ‘normal’ family life again. We no longer needed to visit Rainbow House as our daughter was well again. We were so thankful for everything that the charity had done for us but it was time to say goodbye - there were other families out there who needed Rainbow Trust’s help now.
Elise had started school and things were settling down once more. I think we were always conscious of what Elise had gone through - we were always determined to make the most of our family time together. Each year we went on some amazing family holidays including Lapland, Florida and Canada. Elise always wanted to be doing something, whether it was playing a marathon session of Monopoly or taking piano, dancing or swimming lessons - she always had a zest for life which was infectious. As she’d missed so much school because of the Leukaemia, she had been classified as having ‘special needs’ and found things more challenging than most other children but this never stopped her trying new things.
Her illness had always singled her out as being ‘special’ even when she was in remission. Elise was quite the hedonist, she thought that normal life was a series of parties, meeting celebrities and going on some fantastic holidays - she could have been an IT girl! I suppose we were indulging her to a certain extent but we wanted to make our family time as enjoyable as possible.
In December 2004, Elise developed giddiness; coincidentally we were at the hospital for a routine check up. After urgent test, we were told that after almost six years in remission, she’d developed a brain tumour as a result of her initial treatment for Leukaemia. We were completely and utterly devastated. We were told that she would have to undergo immediate brain surgery to remove the tumour. On 21 December, she endured a six hour operation at St George’s Hospital.
After eight weeks of harrowing radiotherapy treatment, the first tumour had been treated successfully but another had developed. We were told by the medical staff that there was very little else they could do for Elise now.
We never told Elise that she was going to die - she never really complained about being ill, nor was she very interested in her prognosis - I suppose she thought it was just another phase that she had to go through to be well again. The tumour affected her mobility and she had to use a wheelchair which she hated. I think it was the cruellest illness for her to have as she’d always been so busy but now she was confined in a chair. During this period, she did become difficult and frustrated, the tumour was starting to change her personality.
Rainbow Trust’s Family Support Worker
At this time, Rainbow Trust assigned us a Family Support Worker, Sue. We’d met Sue when Elise was at the Royal Marsden Hospital during her first illness. Sue quickly became our friend and confidante - she knew exactly what we were going through. She was never intrusive and always respectful. At this point, Elise had become wary of people but Sue quickly became a bit part of Elise’s life and she loved her. She’d play games with Elise for hours at a time, which gave us a break from the Monopoly championships that seemed to be taking place at our home on a daily basis!
Sue was always there by our side and I was especially grateful for this when we were at hospital. Just to have someone with me was a great comfort and she was always at the ready with a tissue and a shoulder when things became too much. The fact that she was there meant we could have ten minutes away from Elise’s bedside. We had a chance to do normal things like go and get something to eat.
Happy memories
As well as sharing some very dark times with us, Sue was there during some very funny moments too! There was one occasion when we were in the hospital waiting room. One nurse called out “Mr Bonk, the doctor is ready to see you now” - well, as you can imagine, Elise, Sue and I started to snigger at such a funny name. However, it didn’t stop there, the nurses kept calling out patients one weird surname after another - we were in hysterics by the time it was our turn to see the doctor!
Back to Rainbow House
Our last family visit to Rainbow House took place in August 2005 and Elise was able to stay in her favourite bedroom on the ground floor, she was thrilled by that. During that visit and even though Elise was very ill, we made the most and the very best of it. We went to Box Hill and then Bockett’s Farm where she played with some of the animals. Shortly after our visit there, Elise deteriorated quite rapidly and she died on 5 September 2005 at home.
I only wish that you could have met Elise. She was very spirited, very loving and a brave little girl. She could also be ‘a bit of a handful’ according to some of her teachers too! She said that she wanted to become a nurse when she was older. In fact many of her dolls were like herself; some had puncture wounds, while others had bandages tied onto them and one even had a hickman line! When Elise was ill for the second time, she’s very courageously learnt how to inject herself with growth hormones which she did everyday. I know that she perfected her technique on her dolls and to this day, I still have my suspicions that she may have even practised on the cat too! She achieved so much in her short life, she was one of the youngest ever children to be awarded her Junior PADI Scuba Divers License - she loved swimming and the water and it was one of her proudest moments. We miss her so very much.
