Esther, 16, and her mum, Catherine, talk to us about their experience of Ewing’s Sarcoma.
‘When Esther was 2 ½ years old, we noticed she had a little lump on the base of her spine. She was referred to Great Ormond Street Hospital but in the meantime, her health really deteriorated. She couldn’t really walk and was limping badly. By this stage, she’d been unwell for about 3 months and we decided to see if we could get a quicker appointment at the hospital. Luckily, Great Ormond Street found us a bed that day. Esther was there for 2 weeks and they did lots of tests on her. It was then that we were told she actually had a tumour.
It was terrifying. You just don’t ever think your child is going to have cancer; it’s always something that happens to someone else.
Everything moved very quickly from that moment of diagnosis. She started chemotherapy that evening which was just a few days before her 3rd birthday. Initially she had 8 rounds of chemo, lasting around 6 days. She also had surgery to take the tumour out which meant she couldn’t walk for 6 months. It felt like we were living in the hospital. That autumn, she had 6 weeks of radiotherapy.
Her 4th birthday was a double celebration because she was given the all clear. She was able to start school and her hair grew back. She was a happy, normal little girl again. She was still having regular MRIs though, to make sure everything was ok.
I had to called the hospital to find out the results of Esther’s most recent one. The doctor said something had shown up on the scan and at that moment, I just knew it had come back. There was a recurrence in her left buttock.
Esther had more chemo, more surgery to remove it, followed by high dose chemo and a stem cell transplant. That was another month in hospital and she couldn’t leave because she was in isolation. Again, we got the all clear.’
10 years later
‘I have scoliosis and asked mum to give me a back massage because it was hurting. She could see a big lump at the bottom of my spine. We went to the local hospital but were reassured that it definitely wasn’t cancer.
Luckily, I was being seen by a spinal specialist anyway and he said I should have an MRI scan as he needed one anyway. I think in hindsight he knew that this wasn’t good news. When the results came back, we were told that it was a tumour. They biopsied it and they said it was Ewing Sarcoma again.
I was nearly 16 with this third diagnosis. I was surprised it had come back after all this time but it wasn’t a new situation to me. I just really didn’t want to have chemo as it made me feel so sick and I didn’t want to lose all my hair.
They decided against chemo as, having had so much previously, they didn’t think it would be good. Instead, I’d have surgery to remove it. It was a pretty massive operation and took me a while to recover.
I then went to Florida for 10 weeks to have proton therapy because the side effects are less severe then with radiotherapy. Now, I’ve finished treatment but still have regular check-ups and MRI scans. I don’t feel worried about it coming back because I didn’t worry before and it’s been ok. I’ve learnt there’s not much point worrying about the future.
The family have been so supportive, we really missed them when we were away so having dad and my sisters coming out really cheered us up.’
‘It has been onerous for the family,’ explains Catherine, ‘ possibly because Esther is the eldest and so I was often having to leave the younger ones with friends and family. My husband had to stop working at one stage to help look after the other children because it was too much with me being in hospital with Esther. But people have been great and the children loved having time in Florida when we were out there.’
Need for research
Catherine finishes, ‘the past 14 years have shown us just how much we need medical research. Whilst the diagnostic techniques and the understanding of Ewing’s Sarcoma has moved on since Esther’s original diagnosis in 2002, and proton therapy has been developed, the drugs protocol for this cancer hasn’t changed in 16 years. There are no new drugs at all and chemotherapy is toxic so it can only be used a number of times which is why it wasn’t an option again. Having the treatment 10 years on has really brought this home to me. I’m so grateful people do fund research so that this can change.’
