Danielle is mum to Darcie, 6, and here, we’ll be hearing more about their family’s journey through Accute Lymphoblastic Leukaemia (ALL) and what they’ve got planned for Mother’s Day.
Darcie was diagnosed at the age of three, and despite ringing the bell after two and a half years of treatment, she unfortunately relapsed just seven months later and had to recommence treatment. Danielle shares more.
Tell us about Darcie.
Danielle: Darcie is mad! She’s a typical six-year-old girl- loves girlie things, arts and crafts and hates to miss out on anything fun because of a hospital visit. Although she’s only six, she seems much older than that because of what she’s been through. She’s the average height of a nine-year-old, every time she takes a steroid dose during maintenance, she seems to grow!
I’m so proud of Darcie. She’s so determined- she won’t drop until she stops and she won’t stop until she’s home. A middle-aged adult going through chemo and radiotherapy would be in bed, but Darcie just can’t wait to get up and get out. She always tries to face her fears. After all she’s been through and all the bumps along the way, she always sees the positive.
What led to Darcie’s diagnosis?
Danielle: Darcie was first diagnosed with ALL in 2021, when she was in pre-school. She rang the bell at the end of her treatment and had seven months of normality, then we got the news that she had relapsed last August, just before she was due to start P3.
Before her first diagnosis, Darcie had been very tired and seemed to have no energy. She was very pale and had random bruising, so we took her to see the GP. Our GP sent us straight to A&E and I discovered afterwards that she’d written ‘suspected Leukaemia’ in Darcie’s triage notes. The medical teams couldn’t believe that she wasn’t more unwell when they took her bloods.
What happened next?
Danielle: When she was first diagnosed, she told them that she wasn’t sleeping over in the hospital because she had to go to church to be flower girl! But unfortunately, she had to stay in for around five weeks in total, with the exception of a few days in between.
Darcie was only three, so we just told her that she had a bug in her blood. We told her that her hair was going to fall out and she would look like Granda! Being so young, thankfully she was pretty naïve. It was harder this time round though, because she’s older and she’s so clever and tuned in.
What’s been the hardest part of the journey?
Danielle: Darcie really hates being away from her dog, Max as she loves to hold and cuddle him. And it was really tough being away from family and friends. When Darcie was first diagnosed, it was during one of the lockdowns, so she didn’t see family and friends for nine months. She’d talk to her cousins at the garden gate while she stood at the door. Her Auntie Laura would throw her some Kinder chocolates!
Most other children can go and see Santa on a busy Saturday or can go and do something. We have to think so far in advance for germ control and have to think a lot more about everything we do and the timing of it. It impacts every part of your life. Things like birthdays are hard, as you’re always wondering when chemo will fall or will she be on steroids on her birthday.
Darcie hates having to have anaesthetic, which is a big part of the treatment for leukaemia. The older she gets, the further down the list she is, so she has to deal with waiting and fasting, and then the mask which she hates. She finds MRIs really tough and sometimes she’ll need to have anaesthetic for them so it’s doubly hard.
But she’s been amazing- so determined and always looks for the positive in any situation, whether it’s treatment, medicine or missing out on something due to hospital.
Has anything about the Unit made life easier for Darcie and your family?
Danielle: Although it’s not a nice place to be when your child should be out living life to the full, the Unit and the charity have made things a lot easier. With wifi, Pizza Tuesdays and Ellie, the amazing Play Specialist, who Darcie adores. She’ll always check the board to see if Ellie is working and loves the games they play and making tie dye. She just loves any excuse to escape out of my room when she’s on the ward!
Darcie loves the nurses. In 2021, when she was first diagnosed, I couldn’t get her into clinic, and she didn’t speak a word to anyone. Now I can’t get her out of there! To another child, going to soft-play is a great day out, but for Darcie, going to Clinic is a great day out. Because there are other kids with no hair, and other kids with NG tubes in and she just gets to run amok! If we’re out in a café or somewhere else, we have to be so careful if there are other children there, but we know on a theatre day, everyone else is being safe so they’re all in the same boat.
How is life for Darcie at the moment?
Danielle: At the moment, the team don’t know if she’s going into maintenance treatment or for a bone marrow transplant. They thought they had seen other cells that had leaked into her nervous system but now they aren’t 100% sure so we should know more over the next few weeks.
Darcie’s on a four-week break from chemotherapy right now, so that means we have a bit more normality as long as we’re careful. So, she’s able to go to school and to GB, etc. For now, we don’t know how long that will last, but her answer is always “I don’t care, even if it’s only for one day, I just want to go back to school.” We recently went to a charity football match that some close friends had organised. No one could believe how determined she was. I watched her trying to keep up with kids even younger than her and although I knew her legs were absolutely aching, she would not let it defeat her.
Is there anything that you do for yourself to help you cope with this journey?
Danielle: If I get any free time, I like to go to the shops. I like going out with the dog and going out for coffee. I’m a hairdresser, so I like to be able to get to work because I like routine and normality. Being out of work for those first nine months was really tough.
Do you have any advice for other mums facing a similar journey to what you have?
Danielle: Take each day as it comes. There’s a lot of information, all at once, especially from the consultants and it can be overwhelming. You’re given a lot of ‘ifs’. There’s no point worrying about the ‘if’ because it’s completely out of your control. So my advice is to worry about what you’ve to do on each day. And then the bigger picture for the week and the month. The first time round, all I wanted was to get to maintenance treatment, and it was such a huge relief when it came. But then you realise you’ve been wishing her life away until she gets to ring that bell, or planning your whole month around when she’s due to get steroids. You have have to live with what you’re living with each day, so try not to look too far ahead.
What are your plans for Mother’s Day?
Danielle: Because of Darcie’s immune system being low, we can’t go out to busy restaurants for a meal, but Darcie is planning to make me a nice breakfast and hopefully if it’s sunny, we’ll get out for a nice walk and some fresh air with our dog, Max. We’ll have a nice girlie day, do our nails and of course Max will join in too!
Huge thank-you to Danielle for sharing her story and we wish her and all the other mums, grandmums and carers who are on a similar journey a very Happy Mother’s Day.
