Written by her mother, Vicki, in January 2006
I am so often amazed at how true the cliché ‘it’s a small world’ really is – have you noticed that these coincidences seem to happen more and more the older we get? When my good friend in Harrismith told me that her sister worked for The Sunflower Fund in Cape Town and wanted to get hold of me to include Caitlin in their Wall of Remembrance it literally felt like a punch in the belly. ‘I can’t do it’ was my initial reaction. I might have to unpack the boxes of memories that I have so deeply and efficiently hidden away from myself. That was nearly two months ago. Today I opened the Wall of Remembrance on their website and realised that other mothers had managed and so should I. Through a mist of tears at their courage I hope my contribution may in a small way be of some help to others.
Rick, Caitlin’s father and the ‘rock’ in our family has always had a good grip on how to cope. He said at her memorial service ‘I have too often wished and prayed that the responsibility and anxiety of Caitlin’s illness and of her future would be taken from me and that God would, somehow, just sort things out. Well, maybe he has. I don’t know but there is a certain mysticism about Caitlin’s life and death that fills me with wonder and awe.’ It was all lost on me – I just felt deeply angry. For over four years we had struggled to save her and we had lost the battle.
Caitlin was nine when initially diagnosed with Acute Lymphoblastic Leukaemia. We had enjoyed a happy family holiday at the beach and although she was a little pale she showed no other symptoms. After the beach she went to stay with my mother for a few days and started feeling ill. The local GP sent her for blood tests and phoned me to tell me that she suspected leukaemia. When I heard the word I knew it was something really bad but I had no idea of what was in store for us.
We are an Eastern Free State farming family and live in the shadow of a mountain – we call it ‘our mountain’ – a typical sandstone outcrop smaller but similar in shape to Table Mountain in Cape Town. Caitlin was nine and James, our son, was five. Although farming is not always easy and the climate is harsh we were well settled and happy. Then this doctor phoned me and used that long word. Our lives literally fell apart.
We were told to go immediately to the Universitas Hospital in Bloemfontein or the the Jhb General. As Rick was already involved with some consultancy work in Bloemfontein we decided to go there. Less than 48 hours later we were sitting in the paediatric oncology unit talking to someone who was to have a major impact on our lives for the next four years – our doctor Charmaine. She explained that Caitlin’s leukaemia was the ‘better’ sort and that she had a good chance of a full recovery. We were so relieved. With hope we could do anything.
We left the farm, our animals and our home and moved into a small suburban townhouse. As all your stories will testify the people were amazing. As the second school term was about to begin I had to find somewhere for James to go to school. I had heard that the waiting list at St Andrews was 20 long but I took my chances and told them that they simply had to have him in Grade O as I had nowhere else to leave him. From that moment they took care of him, organising after care for him and food for us. We were total strangers to all those parents but we couldn’t have managed without their help. Rick and I lived in the hospital taking turns to be with Caitlin. She was having aggressive chemo to get her into remission.
I remember her headmaster coming to visit in the hospital and she wickedly asked him if he’d like to see her party trick. He obviously said that he would and she gripped a huge handful of her thick long blonde hair and pulled it out. He didn’t know whether to laugh or to cry and neither did we. Soon she was completely bald but always resorted to beanies rather than a wig.
After the initial course of chemo and during the consolidation when her immunity was severely compromised we came home to the farm for a weekend. She immediately felt really ill and we took her back early on the Sunday to hear that she had a burst appendix and had to have an emergency operation. In her state of immune deficiency it was critical to remove the part of her bowel that was infected however the operation itself was very risky in her present circumstances. They ended up removing a third of her large intestine and she spent days in the intensive care. However, they were keen to get on with the chemo regime so once she was out of ICU it was straight back to large doses of chemo and all the resultant side effects. Rick was chatting to her in ICU one evening and trying to encourage her to use the power of her mind to heal her operation wound. He told her to visualise that every stitch was slowly joining and that the skin was slowly but surely connecting together. She closed her eyes for a moment to show that she was really trying to do what he was suggesting then she opened them brightly and said ‘its all done Dad, I just put a zip in it and did it up’.
Although she missed the second term of 1995 – she was a boarder at Clifton in Nottingham Road in Natal – she managed to go back to school half way through the third term and still passed with her usual good results in December. Somehow during this traumatic time I had managed to fall pregnant and was due in February 96. Patrick was born on Valentine’s Day and with Caitlin in remission and a new baby expected we felt as if our lives were back on track and that the worst was over. However in the early part of 1997 one of the routine blood tests showed abnormal white cells and the bone marrow aspiration showed that she was having a relapse. Charmaine decided on a very aggressive chemo regime this time and it slowly became apparent over the following months that a bone marrow transplant would be necessary.
We made the move away from the farm again and back to Bloemfontein. This time she was in hospital for long periods of time in isolation and one of us stayed with her every night. How did she remain so optimistic and cheerful? Her best friend Bronwyn wrote of her after her death ‘I will always remember you as a very brave and courageous person, never showing disbelief in yourself or in any of your friends. You are a loving ever hopeful friend who never let me down and was always there when I needed you, always willing to talk. If you were suffering you never showed it and that is what I call courage! I will never forget you Caitlin; you have a special place in my heart. I will miss you but I know you are now in a better place.’
In April the chemo began in earnest. This time they wanted to get her into a proper remission so that a bone marrow transplant would be possible. Like in all the other cases the search began, first with the family and siblings and then on the SA registry. Without a good enough match it was eventually decided that she would have an autologous transplant – harvesting her own stem cells and reintroducing them into the bone marrow once her original marrow had been destroyed. Although one doesn’t have the same problem with rejection the chance of completely eradicating the leukaemia from the stem cells is not very good so there is the risk of reinfection.
From Bloemfontein we then moved to Cape Town, first to the Wynberg Hospital and then to Constantiaberg. This time we shared a house with my niece who happened to move to Claremont. What a small world, what a coincidence – they had bought a house so close to where we needed to be and with only the two of them could accommodate us in comfort for the time we’d need to be in Cape Town. James went to live with my folks at the start of 1998 so that he could attend school at Clifton in Nottingham Road. He was 9 and they were both in their 80’s – my mother hadn’t had to supervise homework for 40 years! This was a team effort and the whole family was involved.
Doctor Jacobs and his team completed the harvesting and the transplant in January and we came home in April ready for Caitlin to begin school again in mid May. What a great year for her in the final terms of Junior School – she excelled at everything seeming to compensate for the time that she had missed. Not only was she strong academically but she achieved in all sorts of other spheres from riding to singing. Her teacher wrote of her at the time ‘we feel privileged to have known and to have been taught by this very special young lady. She certainly taught us more than we could ever have taught her.’ We were sure that this time we were back on track for a full recovery.
However, just when she had completed one term in high school at St Anne’s, a boarding school in the Natal Midlands, we noticed that a spider bite on her leg was not healing properly. She went back for a blood test with Charmaine who had by now moved to Unitas in Pretoria. I will never forget her primal scream of fury and frustration echoing down the passage of that hospital on being told of her relapse. It was so unlike her to lose control, she had been so determined to get better that she couldn’t believe what Charmaine had told her. By now she was thirteen and able to make up her own mind about whether to try another transplant. This time it would have to come from a donor and the chances of success were definitely less. How does one burden a child with the decision about her own life or death? How can one not? It’s a parent’s worst nightmare to face the imminent possible death of a child but to have to discuss it with the child herself is unnatural but unavoidable.
It was at this stage that she told my mother ‘you mustn’t worry about me Pook, I have had 13 wonderful years’. She decided to try again and a search for a suitable donor began. Charmaine spoke to Rick and me frankly about the path ahead and suggested that if we were ever thinking about having another baby this was the time to do it as the chances of a sibling match were so much better than any other. We both felt that we really were too old to start again as Patrick was now 3 and had suffered from little or haphazard parenting with both of us so involved with Caitlin.
We now contemplated the move to Pretoria for the next chemo sessions. She started chemo on the 17th April 1999. We went to movies in Johannesburg – I still remember the movie – it was ‘Shakespeare in Love.’ However, as she was given the first doses she started to get a temperature. Rick took her to Unitas the following morning and phoned to say that they were moving her to ICU as she had an infection caused by the klebsiella virus which is prevalent in hospitals. By lunchtime she was dead. Our beautiful, precious and only daughter had gone so quickly.
We came back to our beautiful farm to bury her in the family graveyard. The Dillons have been here for over 100 years and she has joined many family members resting there peacefully under the oak trees. A friend wrote ‘we believe that she was there at her service wafting gently in the breezes, holding your hands through the anguish and heartbreak, smiling thoughtfully and helping you do the great and monumental task you all did so bravely. I can only imagine a tiny percentage of the width and breadth of that day but you sure did her proud in every way.’
We really did do her proud. Less than 8 months later Daniel was born – I was actually pregnant before her relapse and although we’ll never know whether he was the right bone marrow match what a joy he has been for all of us. She so loved her brothers that I am just sorry that she isn’t here to spoil them. Although we are geriatric parents (Rick will be 67 while Dan is still a school boy) we know that they will keep us young at heart.
The years pass and I feel less angry. I don’t know whether that’s nature’s way of healing or whether the business of life just plays tricks on one’s memory. It’s all rather like a bad dream that happened long ago. Although she is no longer here physically she looks at us from her portrait in the hall and every time we walk past she reminds us how special she really was. As someone commented at her memorial ‘God so often chooses to take the most perfect children – its inexplicable.’
And when I ask ‘why us?’ Rick just says ‘why not us?’