Ffion was three years old when in June 2020 she was diagnosed with acute lymphoblastic leukaemia (ALL), a cancer of the blood.
Her mum Jenna shares her story.
Ffion’s diagnosis came completely out of the blue. She had been complaining of a tummy ache, but as she has a cow’s milk protein allergy, we thought she had some milk and reacted to it. However, as she started saying it quite regularly, I began taking her to the doctor’s, as something didn’t seem right. She then came out with a couple of spots on her, which the doctor said looked like chicken pox. They said to keep an eye on it, but they will blister in the morning. They didn’t blister, though, and it didn’t look like chicken pox to me. So, I took her back to the doctor who then said to go straight to the Royal Gwent Hospital in Newport for a blood test.
It was after this that our lovely little Ffion was diagnosed with acute lymphoblastic leukaemia (ALL) - just a week after her third birthday - in June 2020. I was so shocked that I couldn’t speak and, because I was on my own due to COVID, the doctor had to talk to my husband, Leighton, on the phone and let him know this devastating news.
We were immediately transferred to Cardiff, where she would need to receive a platelet transfusion and then begin her treatment. We didn’t know this at the time, but we’d end up spending a total of nine weeks there, including a long spell in intensive care. She’s been really unlucky all the way through with complications, beginning with a problem with her chemotherapy port that led to her developing sepsis, as well as her suffering from infections and even losing the ability to walk for a time, among other things.
Ffion has spent so much time in hospital, that the nurses are all like her best friends now. Seeing them so much, they’ve become like family to. She’s quite a celebrity there and, when she goes in, she dresses like a princess, and everyone knows her as Princess Ffion.
She’s very chatty and likes to be out and about, so when she spent such a long time in isolation, she hated it. That was so difficult for her, but she’s doing well at the moment and we couldn’t be prouder of her. She’s had it so tough throughout her treatment, which is due to finish in September 2022. But, despite all of the complications, difficulties and the treatment she’s endured, she’s still really bubbly and very boisterous.
Ffion’s on the go all the time and she loves dancing and playing. She still has weakness left in her legs, but she won’t care, she’s resilient. If she falls, she’ll just get back up. She’s enjoying getting back to ‘normal’, or what we call normal activities, like going back to dance class, or to nursery and seeing her best friend. They’re quite the pair, and her friend is fiercely protective over her and has really helped Ffion. She even cut her hair off for the Little Princess Trust in support. Ffion’s older brother, Gethin, has been great with her, too. He’s been looking after her, and is really patient and kind to her.
We’ve previously done some fundraising for the hospital and LATCH Welsh Children’s Cancer Charity, to say thank you for all that they’ve done. But we wanted to set up this fund with CCLG because things really shouldn’t have to get that far. We want to help fund research that will produce the results so that families in the future won’t have to go through what we’re going through.
The majority of what we raise will be going towards childhood leukaemia research, but we wanted 10% to go towards CCLG’s general activities, having been on a ward with children and parents with other types of childhood cancer. We became one big family there, providing mutual support and comfort to each other. We’ve seen what all the other families have gone through, and while our daughter has leukaemia and most of the money will be directed to this area, we think it’s important that we also help children with other cancer diagnoses like those we met and became close to on our ward.
I also think there’s not enough awareness around childhood cancers either, so we hope to be able to help change that through our fundraising, too. We’ve got a great group around us that have took part in our fundraising so far, who are looking forward to helping us get started with the fund. There’s always friends and family coming up with ideas of things to do, and we’ve always said that when Ffion is better, we’d like to do a big family fun day.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ffion's Fights so that your donation is allocated to the correct fund.