Posted on the 10th September 2018
Daisy’s story – Diagnosed with Acute lymphoblastic leukaemia aged one
Daisy Sayers was diagnosed with Acute lymphoblastic leukaemia (ALL) in November 2017 aged just 22 months. Mum Melissa explains.
When we got the news, it was the worst thing possible. Never in a million years do you think it’s going to happen to your own child. We live near Bradley Lowery’s parents so had seen what they’d been through. The thoughts that go through your head, it was just unimaginable. The initial thought was ‘Am I going to lose her?’.
They told us that for leukaemia it’s five cycles of treatment. The first phase, they call the induction phase, where they gave Daisy a high blast of intense chemo. That started straight away and lasted for about six weeks – she’d have chemo at the hospital once a week, and she then had to take oral steroids and different oral chemos at home every day for nearly a month.
That started Daisy with mood swings, her face swelled, her appetite increased – she just wanted food constantly. That first phase was to put her in remission, then the rest would be to make sure it stayed that way.
Travel costs going up
It’s all the things you don’t think you have to pay for. Travel and car parking is one of the biggest expenses. We have two cars, so if I take Daisy to hospital, Chris will come in his car after work – so it’s the cost of both of us getting there. I wouldn’t even want to guess at how much it’s cost us – definitely hundreds. There’s all the unexpected journeys as well.
Before, I’d always run the car until the petrol light came on, but now I’ve got to make sure I’ve got enough to get her to hospital if she needs to go. It’s always in the back of your mind. We just can’t take that chance now – you need to be ready just on the off chance.
Everything massively adds up – and when you don’t have two full wages coming in, it’s a cost you don’t need.
Daisy's mum Melissa
For the majority of families, they get their wages and live to that much money – you never expect to have to pay for all the extras that come with a cancer diagnosis.
As a family, it’s put a massive strain on us – not just our immediate family, but everyone. It puts a strain on your marriage – you’re just constantly on edge, watching her 24-hours a day. Everything else takes a back seat.
Daisy’s sister Poppy gets quite emotional too, if we’re going to hospital, she gets very anxious about whether we’re coming home or if we’ll have to stay there. It’s getting easier, but it’s been an adjustment for Poppy.
Daisy’s still on treatment now, she’s due to finish in April 2020 – so it’s a very long time. Daisy’s doing really well, she’s had a lot of blood transfusions recently and she’s just about to enter maintenance phase, which the hospital tells us is the ‘easiest’ one. But all in all, she’s coping fantastically.
Childhood Cancer Awareness Month
September is Childhood Cancer Awareness Month. This year, we’re shouting about how much young cancer patients and their families spend on travel costs to and from hospital for treatment.
When treatment is at its most intense £180 goes on their cancer commute. As treatment for young cancer patients can go on for years, families are often plunged into debt.
It’s not right, and the government isn’t doing enough to help. Young cancer patients and their families get very little support for travel costs, and most of them don’t qualify under the government’s current system.
This has to change now. Sign our petition challenging the government to create a travel fund for young cancer patients.
They shouldn’t have to worry about mounting travel costs when they’re going through treatment. Together we can change the price tag.
Childhood Cancer Awareness Month
We asked the government to provide better financial support for families of young cancer patients travelling to and from hospital.Read more about Childhood Cancer Awareness Month
Our cancer costs campaign
The financial cost of cancer in children and young people can be devastating. It's not right.Read more about Our cancer costs campaign