Sarah’s Story
Robert’s daughter, Sarah, was diagnosed with Stage 4 neuroblastoma in December 1999 when she was seven years old - and sadly passed away a few years later at the age of 11. Nearly 20 years on since his loss, Robert remembers Sarah and shares her story here…
Sarah was seven years old when her symptoms started in mid 1999. She had a lump on her head and was complaining of pains in her body, mainly in her neck and shoulders. She had also grown very thin. We took her to a doctor who arranged for a scan to be done, and we were told to come back to the hospital for the results the following week. We had no reason to suspect that anything serious would be found, so it was a huge shock when we were told that a mass had been found in Sarah’s stomach. Given that her pains had been around her head, neck and shoulders, it was a huge surprise to learn that the tumour was attached to her adrenal gland. Further blood tests were required before her diagnosis could be confirmed.
The results came back fairly quickly and we were told that Sarah had Stage 4 neuroblastoma. We had no idea what to expect, but it was obviously not good news. When I tried to do some research on the internet, I realised that her prognosis was not good. But at least we had the hope that there was a treatment plan.
The oncologist explained that the bumps on Sarah’s head were caused by secondary tumours and she immediately started a very aggressive chemo treatment. For the next nine months or so, she was given very high doses of chemo in the hope that this would cure her. She had surgery to remove the primary tumour in her stomach. This was deemed successful and we all felt hopeful. She was supposed to have a stem cell transplant, but they were unable to harvest her stem cells, so this part of her treatment plan never happened.
Robert and Sarah on holiday.
By September 2000, her treatments finished and we were told Sarah was in remission. There were no signs of any tumour and we had high hopes of life returning to normal. Sarah seemed well, she went back to school, we went on holiday and as a family, we felt we were going to be lucky.
But in early 2003, Sarah suddenly started complaining of pains in her bones. My wife was always optimistic, but I have to admit that I feared the worst. I knew that it wasn’t going to be good news. And then Sarah’s scans revealed that she had relapsed and that the cancer had spread. My wife was hopeful, but in my heart, I knew that her treatment would just be palliative treatment. I had read enough to know that if her cancer came back and had spread, her illness was now incurable and would be terminal.
Sarah had about 18 months of treatment. At one point, she was given a new therapy that meant she had to be kept in isolation. This was due to the fact that the treatment caused her to be radioactive and she therefore posed a potential risk to any visitors. However, this did seem to work and for several months, she appeared well again and was able to go to school.
But in early 2004, she began to deteriorate. She went downhill and for many months, she was at home, in bed, gradually deteriorating. Eventually, she was moved back into hospital so that she could be given strong pain-killing drugs and she passed away there in September 2004.
Sarah was the third of three siblings. She was outgoing and had always been popular at school. The way in which she coped psychologically with her illness was incredible. She was so strong, even when she must have known she was dying.
“We felt that she was being strong for us. Occasionally, she felt frustration at her situation and she would invariably take it out on me, shouting at me, but I felt that if that was my job, I would accept it. ”
I always remember what we call ‘the last supper’... Sarah was allowed home from hospital from time to time and on the last occasion that she came home, she insisted on us all having a Chinese meal together. She told each of us what dishes to order and we all sat down and ate together. It was as if she knew this would be the last time.
After she passed away, we all felt a huge sense of relief. Sarah had suffered for so long and it had been tough to see her like that. All of our lives had been on hold during her illness and it was incredibly difficult for the whole family. I went back to work and tried to resume a normal life, but my wife was never the same. She suffered from depression after the loss of Sarah and three years after Sarah’s death, my wife was diagnosed with breast cancer. I am convinced that her cancer diagnosis was in some way down to the tremendous trauma and stress she had been through with Sarah’s illness, and when she too passed away, I felt that Sarah’s neuroblastoma had actually claimed two lives.
Sarah was a bright girl and I am sure she would have done well in life. I occasionally do wonder what she would be like, had she survived.
“Of course, I miss her in the family. The envy that I feel when I see a family with three children is something that has always stayed with me. I look at those families and think of my own, and can’t help but feel a gaping hole where Sarah should have been…”
Thank you to Robert for sharing Sarah’s story.
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