Treatment – surgery, radiotherapy and chemotherapy
Charlie needed a seven-hour operation to remove the tumour, followed by intensive radiotherapy. He was a bit like a guinea pig; usually the programme would be eight weeks but he had five weeks of treatment, twice a day. We were given other options but the final decision was ours. He needed six weeks for recovery.
The radiotherapy caused burning on his head and spine. He stopped eating because his oesophagus was burnt too, so he was on a nose feed at night.
When he was going through radiotherapy, I kept on questioning our decision – were we doing the right thing for Charlie? But I knew we were.
Nine years ago, there wasn’t any alternative treatment. When the tumour was removed, we waited five days for the biopsy results. The tumour was entwined on his spine so I always say that we had lots of luck – it was just all bad!
Charlie also needed one year of chemotherapy, with treatment every six weeks. During this time, our whole family life was on hold, but we had great support from friends and family. My sister was a nurse on a children’s cancer ward and was a huge help. She told me what to expect and was my guardian angel. We all got through it together – I looked after Charlie and my husband continued to work so we could pay the mortgage!