‘We thought it was a death sentence’ Mum shares the emotional story of her daughter’s battle with leukaemia

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  • Childhood cancer affects thousands of families here in the UK.

    Phoebe Dowling was first diagnosed with leukaemia in 2016, with when she was just 14 months old. Her mum, Aimee, feared the worst, but found support in those around her and the work of charity The Rainbow Trust.

    Here, Aimee shares her family’s inspiring story, and chronicles Phoebe’s fight to beat her illness…

    Just a week before she was finally diagnosed with leukaemia, a doctor at the hospital had told me Phoebe had a cold.

    She was a very sick baby. I was constantly at the doctors, either being told she’s either got some sort of cold, or given inhalers – but she never seemed like she was recovering from anything. I never had to take my older son, Ollie, to the doctors at all, so going from having a child that was fine to having a child that was never well didn’t sit right with me.

    The turning point was when we took her into A&E for a rash that had developed on the backs of her legs. It was like a blister rash underneath the skin; it looked like bruises. I just automatically thought it looked like meningitis, and we did the glass tests and it didn’t disappear, so we rang 111 – I’d been fobbed off so much I thought: ‘Oh god, I don’t want to make a big thing out of it in case it’s nothing again.’

    But 111 told me to go straight in, and for the first time the staff actually took some blood from her. They’d had a handover that day, and that’s when we started making progress. The doctor took one look at her and began asking questions none of the other doctors had ever touched on – ‘Is she always this pale?’ and, ‘Is her belly always that bloated?’. All of a sudden she came in and said we would have the blood back within hours, not days like it normally takes. I knew then that she thought it was something else.

    We arrived at the hospital at 2pm and by 6pm we had been told that it was leukaemia.

    That evening, we didn’t end up going home; we stayed there in the hospital then for about two months. We had to take every day as it came, because we had another child at home.

    My husband, Nathan, took time off work because I just couldn’t be in two places at once. He was at home with Ollie, whilst I was in hospital with Phoebe because I thought that’s where I would be best. Every day we thought we were getting a little bit closer to going home, and then she would catch another virus – but there were facilities on the ward so that one of us could stay overnight; and there was a games room, so Ollie could come up and play.

    We were all together as much as possible, trying to keep some sort of normality for both of them. Ollie at the time was only three, so he didn’t really know anything other than that his sister was a bit poorly. My mum and dad, and my brother and sister in law, were there for us 100%.

    The biggest help was from the Rainbow Trust, who support families with a life threatened of terminally ill child. We were referred to them by CLIC Sargant. I was really struggling, and I felt really guilty about not being able to spend my time with Ollie – one night is long enough to stay in hospital, but two months? Phoebe was diagnosed on the 18th of June, so it was right at the start of the six-week summer holiday from school. My main priority with Rainbow Trust was Ollie, rather than Phoebe – Amelia, our Family Support Worker, would pick him up for me, or even just come up to the hospital to have chat with me, to make sure that I was alright.

    I was a little bit apprehensive about Amelia being around at first – you’re letting a stranger into your house, giving them a house key. But when I met her, I knew she was going to fit in. Ollie took to her like he had known her all his life.

    When Phoebe was first diagnosed with leukaemia, my biggest fear, of course, was that she wouldn’t make it. Nathan’s granddad had actually died from the disease in the December before and as soon as they said ‘leukaemia’, we thought it was a death sentence.

    Once the doctor explained the chance of survival, we realised it was very different to leukaemia in adults, but when we first heard the word, my world just crumbled – I couldn’t even look at her, thinking ‘are we going to have her next week?’. Over 97% of her bone marrow was leukaemia, and unfortunately she had it in her spine and brain fluid as well. It was pretty much everywhere. She was on the highest treatment plan possible, and everything was highly intense straight away.

    I’m such a positive person. I’ve had a lot of stuff go on in my life, and I strongly believe it’s important to have perspective. Especially for the children – kids pick up on everything, it would make things so much more difficult if I had allowed myself to become overwhelmed by everything. There was a time when I was really down, but The Rainbow Trust were there for me, making sure Amelia was never far away. Just having someone for me to talk to, it made me feel a little more confident in believing that we could do this, as a family.

    Seeing Phoebe smiling was everything to us. She’s such a happy, strong character. She would have bad days, too – she regressed so much when she was in hospital. She was once walking, and then she ended up having to have physio just to learn how to crawl again. It was tough. But every milestone for her just made us so proud, and if we hadn’t had the support around us there’d be no way that I would feel the same as I do today.

    Now, she’s only got three more lots of chemo left and should be in remission by November. It’s a long road; it is something you have to adapt around, but it’s just life at the minute and it will get better. Her hair has grown back, all thick and shiny and lovely; she’s walking, she’s talking, she’s started nursery. All things we would probably take for granted. She’s showing the strength of character we always knew she had.