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Nicole's story

Nicole’s story

In 2003, when Nicole Biddulph was just 4 years old, she was diagnosed with cancer in her spine. Nicole underwent lengthy treatment and her condition has left her paralysed. Here, her dad, Allan, describes what Nicole has been through, and how she coped with losing her mobility.

Nicole and her family

Something wrong

One night, while my wife, Sara, was getting Nicole ready for bed, she noticed a small lump on Nicole’s back. We went to the doctors the next day and were immediately referred to the local hospital. Nicole had a MRI scan, which showed a huge mass surrounding her spine. We were then referred on to the Children’s Hospital in Bristol, where Nicole had lots more tests. She then had an operation to remove a piece of the tumour (a biopsy). During the biopsy, part of the tumour came away from her spine and took some of the bone with it. She had a lot of bleeding and became very unwell. After her operation, we were shown into the Intensive Care Unit, where Nicole would need to spend the next few days. It is difficult to describe just how many tubes, monitors and machines there were. Her little body was completely dwarfed by these huge machines that were all working to keep her stable.

Treatment

Shortly after the biopsy, Nicole had to have another operation, this time to drain a blood clot that was pressing on her spine. At the same time, because of the damage the tumour had done to her spine, she had to have titanium rods put in to support her back. Those 4 hours while Nicole was in surgery were the longest of our lives. Sara and I sat in silence, knowing that the same thoughts and fears were running through each others heads, but unable to speak. Neither of us really imagined that Nicole could make it through the surgery, so every time the door banged, we expected to see the surgeon come round the corner with a grim look on his face. However, Nicole showed her fighting spirit (not for the first or last time!), and eventually we were taken down to recovery, where we could be with our heavily sedated daughter.

The next month Nicole started chemotherapy. The treatment had a lot of side effects, including mouth sores and hair loss. But Nicole also had another problem - she had lost her mobility, because the pressure on her spinal cord had caused paralysis from the waist down. So, in between chemotherapy treatments Nicole had physiotherapy. At first she was very afraid of moving anywhere, but her confidence slowly grew. She had to learn how to balance again before she could even begin to get used to using her new wheelchair.

At the beginning of 2004, Nicole had 6 weeks of radiotherapy treatment. This proved to be a very difficult time for the whole family. While I was able to stay in a house near to the hospital, Sara had to stay at home with our younger daughter Lauren. It was very unsettling for all of us - but I think Nicole’s personality and determination somehow kept us going.

Going to school

A busy life

Just 3 months after the radiotherapy, and despite still having chemotherapy, Nicole started school, where the teachers and pupils have been very supportive. As you would expect, Nicole can get frustrated sometimes about being in a wheelchair, but she has always found ways of adapting to change and has grown in confidence over the last 3 years. She’s now eight years old and she is doing well at school. She also enjoys lots of other activities like swimming, being involved in a performing arts club, learning the piano and has joined our local Brownie pack. Nicole won a Cancer Research UK Little Star award in 2005 and she’s been involved in fundraising for charity in a number of different ways.

Looking back

One of my most vivid memories of September 2003 is of looking up at Nicole’s bedroom from the garden on the day we were due to travel up to Bristol Children’s Hospital. I remember seeing her smiling, happy face as she waved to me, and the tears were welling up in my eyes as I waved back, and wondered what we were about to put her through. We knew so little about the journey ahead, and both Sara and I remember thinking that she may never come back to her bedroom and her toys ever again. When she finally did come home, she was paralysed, bald and on chemo. But all that matters is that she did come home, and she still is home. Even though it has been a long and complicated journey, we are just so grateful to have her here with us, to hug and hold every day, and tell her we love her.

Seeing Nicole go through treatment for cancer and watching her learn to cope with her disability has been difficult for the whole family. But it has also been inspiring - our daughter’s sheer determination and positive attitude has won through and we are all very proud of her.

Nicole as a Brownie

Factfile

  • Fibrosarcoma is a type of bone cancer
  • Nicole’s situation was unusual because fibrosarcoma is very rare, particularly in children. It is most commonly diagnosed in middle aged adults and most often starts in the leg
  • Around 1,500 new cases of childhood cancer are diagnosed each year in the UK
  • The term childhood cancer means cancer that is diagnosed before the age of 15. It includes a wide range of illnesses
  • About a quarter of all childhood cancers are brain and spinal tumours

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Updated: 28 September 2009