Katy Jones' daughter Eden was three years old when she was diagnosed with leukaemia in July 2017. She explains some of the things her family considered before deciding on entering into a clinical trial.
Before Eden’s diagnosis, life was busy for us! She was a very active and independent toddler, involved with cheerleading, forest school, play school and adventures. This all started to change when she began experiencing various joint pains for a few months, which were incredibly painful and stopped her doing the activities she loved. She also became lethargic, particularly during the day, but the doctors kept telling me she had ‘pulled elbow’ or other explanations. However, when on holiday in France, I noticed her skin had a yellow tone and began to suspect it was more serious. She then developed a lump on her neck and got a severe case of chicken pox. On the return home, she was being sick.
I took her back to the doctor, who asked me many questions that I knew were related to cancer. We were referred to hospital, where the tests showed severe anaemia, coming as somewhat of a relief as it was the lesser evil. We started on iron supplements, but after two or three weeks, Eden’s iron level was actually going down. They told me this wasn’t really possible and brought us back for more tests.
"Before we decided to opt in, we considered the long-term factors, such as how the treatment may impact her life, hospital visits and general anaesthetics, and felt it was the best option for her.
Later, they took us into a room and confirmed our worst fears - Eden had cancer, acute lymphoblastic leukaemia (ALL). Everything that followed was a whirlwind. We spent a couple of days with Eden, who was trying so hard to be brave, having various blood tests and cannulas, before moving onto the paediatric oncology ward at the Leicester Royal Infirmary, where the team was amazing!
The consultant strongly recommended a trial that was available, which we opted into, saying that Eden would cope well with it. It gave her more intense chemotherapy, but allowed us to have fewer lumbar punctures in the long run, reducing the amount of hospital visits and procedures. The lack of IV meds required also meant she could have her Hickman line removed earlier and have regular blood tests/finger prick blood tests. We also hoped the trial would remove the need for any more steroids, which had previously made Eden angry, hungry and uncomfortable.
Before we decided to opt in, we considered the long-term factors, such as how the treatment may impact her life, hospital visits and general anaesthetics, and felt it was the best option for her. It had also been going for a while and we felt the research had so far shown good results. We decided that we were in a fortunate enough position that we could accommodate the trial with the required hospital stays (one week in, three weeks out). We also considered that it was a standard practice in countries like Germany.
The consultant explained the trial clearly so we had the best chance of understanding and we were given literature to read through as well. We were also spoken to regularly by the trial nurse and kept up to date with all the information. We didn't get very long to decide, but we didn't feel pressured in any way and felt informed enough to make a decision. We felt it was in Eden’s best interest to give her the most up-to-date treatment plan that was available to her to give her the best chance.
After two years and three months of treatment, hospital stays, drips, lumbar punctures and more, Eden’s now doing amazingly and is absolutely thriving. She’s very clever and does more activities than ever, including cheer, swimming, Brownies and after-school clubs!
From Contact magazine issue 96 - Autumn 2022
