Ariana’s Rainbow Friends is raising money for research into childhood leukaemia. Ariana was one year old when in January 2020 she was diagnosed with Acute lymphoblastic leukaemia (ALL), a cancer of the blood.
Her mum Donna shares her story…
Ariana has always been a very energetic little girl, a real fun lover. From a baby, she’s always been just so full of life. But, when all this began, it just took everything out of her.
It started in December, 2019. At first, she got a bug as children do in winter. I thought it was something brought home from school by one of her sisters and it would pass. But as soon as that went, she got another. On Christmas Day, she could barely move. She’d reached 41 degrees in her temperature, and was so poorly and unresponsive.
I took her to hospital and was told it was a viral infection, but I knew something wasn’t right. She’d been ill all through December, and not eating, not drinking. I was terrified, and booked an emergency appointment for my GP the next day. They gave us antibiotics, but she didn’t improve. Around this time, Ariana started dragging her leg and limping, too. Her mobility was starting to go. I thought she had injured it playing with her sisters, but it was only later I was told that it was a symptom.
We were adamant something was wrong, but her diagnosis took a very long time, and was really by chance. In January, she had an intolerance test, as when she’d previously had a reaction to dairy, so we thought it might be that. She was so pale and weak that by this point, a doctor agreed to do a test for anaemia, too. Later on, I got a call, and they said to pack a bag and come to Hull Royal immediately as her bloods had come back abnormal. Because she’d been so poorly for so long, I was really worried.
I can’t remember much about the night; I can only remember the doctor saying they suspected leukaemia. It was really, really hard to listen to anything, to take it in. I just knew it was a nightmare just beginning.
She had her chest x-ray at Hull before being transferred by ambulance to Leeds. We were met by her care team who went through things and told us they’d be doing an operation on bone marrow to confirm the diagnosis. That was on Saturday morning, by the Monday morning she was having the operation and a port put in to have chemotherapy. By that point she was already on her first of many blood transfusions because of how poorly she was.
She must have been in so much pain. When she was asleep, she used to kick out, and was restless. Being so young, she couldn’t talk, so it was difficult to know how much pain she was in. She’s had a lot of side effects from the intense treatment. She lost the ability to walk and do the normal things she would, like playing. She’d gone from being so energetic and happy, to just wanting to sleep.
I was holding her one morning, trying to wake her. We found out her adrenal glands had stopped working, and she’s now on medicine for this through the full course of her treatment. At times, even trying to stand her up to dress her was impossible, she just couldn’t hold any weight whatsoever. She’s taken a long while to get to maintenance because she’s had so many setbacks already and her chemotherapy had to be put on hold. One setback, her port became infected, and so they had to perform emergency surgery. She was nowhere near well enough, but if they didn’t, the outcome would have been completely different.
When they did that, she started to be a bit more herself.
The care she’s had in Leeds has been fantastic, they really do look after her. Although she’s been through a lot, the way they treat her, it keeps her happy. It’s really lovely what they do for her.
Ariana’s walking again now and it’s just fantastic. It’s like when she first started walking, always wanting to explore. It’s been incredibly tough, but she’s been so brave and we’re all really proud of her. She’s an inspiration.
Her brother, Harley, and sisters, Ellie-May and Ebonie, have been brilliant. They’ve always got time for Ariana. They’d do anything for her. I didn’t think their relationship could get any stronger, but it has. Her dad Anthony and I have, at times, had to really hold it in. I couldn’t even say the words “cancer” or “leukaemia”. But as a family, we’ve remained as positive as we can. We keep smiling for Ariana. We have to – she keeps us in check!
She adores music and is mad on Lady Gaga. She loves Ariana Grande and when she comes on, she says, “she’s like me, isn’t she, mummy!”. I don’t know how, but she knows so many song lyrics, it’s amazing. She’s loves Just Dance on the Nintendo Switch, makes us all dance. She’d say to the play team in hospital that she’d want it on, and they’d put it on for her. Even when she was in her hospital bed, we’d be dancing for her.
We chose the name Ariana’s Rainbow Friends because every time you see her, she has rainbow clothes on, and she’s bright and beautiful like a rainbow. For us, the fund is about putting something back. As parents of a child with cancer, it’s important to us to help others like ourselves. Hopefully, we can get more answers and better treatments and outcomes. We want to raise awareness too, and help spread word of CCLG. It’s amazing to think so much of the treatment out there is because of CCLG and we want to help them achieve even more.
Make a donation to Ariana's Rainbow Friends
Open an online fundraising page for Ariana's Rainbow Friends
Set up a regular Direct Debit donation to Ariana's Rainbow Friends
Text CCLG 5 ARIANA to 70300 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
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 Ariana's Rainbow Friends so that your donation is allocated to the correct fund.