Timeline of Bethan’s Ewing’s sarcoma story
October 2011: Bethan complained of pain but had no sign of bruising.
December 2011: She had a very high temperature that I couldn’t control and a strange rash all over her body. She recovered slowly but it was unusual for Bethan as she was never poorly.
24 January 2012: We found a lump on top of Bethan’s left arm – it appeared almost overnight. I’d never seen anything like it.
25 January 2012: Bethan’s fifth birthday. We went to see the doctor.
30 January 2012: We had a hospital appointment for an X-ray – it saved her life. When the doctors gave a clinical diagnosis of Ewing’s sarcoma, it was life shattering. I couldn’t believe it, I just wanted to take Bethan home. Bethan needed a month of intensive scans and tests.
14 February 2012: Biopsy performed. The surgeon spoke to us afterwards and he was convinced it was Ewing’s sarcoma.
22 February 2012: A central line was put in. I hadn’t wanted the doctors to do it before this. I don’t know why but I just didn’t want a foreign object put in to Bethan’s body.
26 February 2012: Chemotherapy commenced. Bethan was on four drips at once – she was very poorly, was fed through a tube and it was just awful.
She was supposed to be home for two weeks between each cycle but it never worked out like that – she’d come home, her blood levels would drop and she’d need to go back to hospital for a blood transfusion. She was at home for three or four days at most. She also had tests and X-rays done in this time too, to check on shrinkage and kidney function. Temperatures were very common– we pretty much lived in the hospital.
1 March 2012: Bethan lost her beautiful hair, teeth began falling out and she lost her toe and finger nails. She also needed a scan to check for relapse.
5 July 2012: Limb saving operation. The consultant gave us a list of treatment options to choose from. We were concerned about Bethan losing her arm, but it was the best option to give her the best chance of survival. They removed Bethan’s shoulder, humerus and elbow bones, irradiated it and put it back. She was on the operating table for eight hours. She’s been left with extremely brittle bones as they are now dead, so she has no feeling in her arm. But thankfully, 100% of the cancer was removed.
September 2012: Bethan started eight more rounds of chemotherapy and it was a little easier for Bethan to bear. She wasn’t in hospital as much but she still needed blood regularly. During this time we were able to enjoy Bethan while her bloods were good and go out a bit!
15 December 2012: Bethan spiked a temperature and was admitted to hospital. We were sent home at 7pm on Christmas Eve, with a very flat Bethan. We had to go back in on Christmas Day for more antibiotics. It was a very sad Christmas for us all.
11 January 2013: Last chemo given – what a day! Full of excitement but fear (mostly for me).
29 April 2014: Bethan’s lines came out on 29th April. What a day!
We are now over a year NED (no evidence of disease) but she needs an MRI scan every three months.