I was on Komodo, a remote Indonesian island, when my husband Tom told me in a quiet, far-off voice: “They think Rose might have leukaemia.” I made the long journey home to be with her, the news confirmed when I landed. Rose, 5, had been diagnosed with acute lymphoblastic leukaemia (ALL).
We got used to living with a daily sense of dread and it was so hard to watch her lose her hair in clumps and the steroids puff up her face. But our nurse at Leeds General Infirmary helped us navigate the trauma of those long, strange, dream-like days, as did parents and close friends. We’d all camp out in Rose’s room, lightening the atmosphere and entertaining her as she had her various treatments.
She actually has really fond memories of the hospital. She loved the nurses and playworkers, and the affection and interest she received from everyone on the oncology units. They made the ordeal bearable, enveloping us with love, care and support.
We quickly said yes to having a portocath implanted as she hated having canulas. I remember signing the agreement in a complete daze, but it was an excellent decision. The administering of medicines became much more straightforward and relatively painless, and Rose even became quite proud of her port.
After much deliberation, we decided against the treatment trial. We looked at every possible combination of the treatment journey she could experience through the trial, tying ourselves in knots over the options. I was keen for Rose’s treatment to be as light as possible and in one possible outcome of the randomised trial, she would have had to spend the first part of her intensive treatment in hospital. However, Tom was keen she didn’t have too few drugs – one of the random arms of the trial was one with no steroids after the intensive phase.
I’ve still no idea if we made the right decision but Rose responded well to her standard treatment, so we’ve never looked back. As home filled up with medicines and papers detailing Rose’s treatment plan, it was all-encompassing. For me, steroids were the worst part of her treatment. I hated how they made her sad and moody, so at odds with her cheerful spirit. We changed them halfway through her treatment, affecting her mood less.
We still wanted to have fun as a family and didn’t want Rose to be treated – or perceive herself – as a sickly child. We encouraged her to cycle, run, climb trees, swim and take physical risks. I was quite strict about not giving her too many sweet treats and fatty foods during her steroids. I didn’t want her learning bad habits that would affect her food choices long after treatment ended.
We tried to keep Rose’s life as normal as possible, not making too much of a fuss or spoiling her. Ensuring she was active really paid off, and she was given a bike from Cyclists Fighting Cancer and one for her brother, so we went on lots of family rides. We felt being active would counter the effects of some of the chemotherapy and I think it really did help.
Eight months off treatment, Rose is a very lively, happy child, top in her PE class and on her school football team. As a family, we now try and squeeze all the joy we can from life, because we now know it’s a fragile gift.
