September is Childhood Cancer Awareness Month and to mark the occasion, we are sharing Erin’s story. Erin’s mum, Marie talks about her family’s journey from diagnosis through treatment, and how things are for Erin and their family today.
Tell us about Erin.
Erin is four and she’s just a lovely wee girl! She’s smart and inquisitive and loves learning about new things. She loves outdoors and meeting new people and will always have a good chat to anyone. Despite missing more than 50% of her nursery school year, it really hasn’t held her back. She’s such an empathetic child and is really in tune with other peoples’ feelings. She’ll always give you a positive comment or notice something nice about another person, whether it’s what they’re wearing or their hair or nails- she’s just so good for the soul when you meet her.
Tell us about Erin’s diagnosis and what were the events that led to her being diagnosed?
She was diagnosed in August 2024, aged three, with a Wilms tumour which is a type of kidney cancer.
Conor and I were due to get married on 28th August and the Friday before Erin came home from daycare with a pain in her side. Later that evening she was sick while sitting on the toilet. I gave her Calpol and Nurofen and she seemed a little bit better on the Saturday morning when she woke up, but still not 100%, and she wasn’t really eating much. I wondered if she was a bit constipated but when she was up during the night on the Friday and Saturday- totally out of character for her- I decided to ring the out of hours doctor.
We brought her to Lagan Valley- she had a temperature, and her urine was very cloudy, so they thought it was a kidney infection and gave her a three-day antibiotic. By the end of the three days, while her form was ok, she still wasn’t eating very much and wasn’t her usual self. We sent her in to daycare on the Tuesday as we had so much to get ready for the wedding the following day, but that afternoon the daycare rang us to say her temperature wasn’t coming down, even after Calpol. On the way to collect her, I rang our own gp and she advised us to bring her to A&E. They did some tests and took bloods then sent them off. Because they knew we were getting married the following day, they acted quickly. When the results came back, they called us into a side room and explained that her blood markers were over 200 when they should have been around ten, so we knew she wasn’t getting home that night. They started IV antibiotics later that evening and we had to make a call about the wedding. We decided to quickly go and get married while my best friend came down to sit with Erin and as soon as our service was finished, we came straight back to the hospital again. I was still in my dress and Conor in his suit as we wanted Erin to see us. She got changed into a little unicorn dress and we all had a celebration on the ward with Domino’s Pizza for our wedding dinner!
My friend had mentioned before she left that the staff had been around while we were away to do an ultrasound and that they’d seen something, but would come back later to see us. I didn’t think a lot of it and really didn’t think it would be anything serious. When the doctor came back in to see us later that evening, he told us they’d found something which wasn’t presenting as an abscess, so they’d need to do an MRI to see exactly what it is. We were all due to fly to Portugal on the Friday but our priority was Erin so whatever happened, she came first. Erin had the MRI on the Friday morning under general anaesthetic, and I got a call from Conor at 12 o’clock telling me to come back into her room as the doctors were there. As soon as I opened the door, I knew they’d found something as there were too many people in the room. Erin’s Oncologist Dr McCarthy told us they’d found a tumour. It didn’t feel real and it was only when Conor asked him if it was cancer and he confirmed that it was Nephroblastoma, or a Wilms tumour as it’s also known, that we realised this was serious. The doctor confirmed that she’d need to have five rounds of chemotherapy, followed by surgery to remove her left kidney and only at that stage they’d know if she’d need any further treatment- they wouldn’t know until they saw the kidney. That weekend was a compete whirlwind as we prepared ourselves and Erin for what was to come.
What happened next?
On the Monday, after struggling to get a central line in, the team agreed to put her to sleep to get it inserted, as she was really traumatised during the process. Once it was in, she began her chemo and luckily we were able to go home that night, which felt so good after being in hospital for eleven days. We just wanted to get home and see Cara, Erin’s little sister, too. From there, she had four more rounds of chemo and then she had her kidney removed on 9th October.
The treatment was rough; she was very sick and had started to lose her hair and all the nasty side effects started to kick in. She wasn’t eating and it was really hard watching her fade away to skin and bone in front of our eyes. There’s only a year between Erin and her younger sister Cara and I remember swapping their clothes over and giving Erin Cara’s clothes and vice versa. But she was so resilient. Just a few days after her surgery, she was up walking around the ward. And even during treatment when she was being sick, she’d be back running around at home with Cara just minutes later. Seeing how strong she was and how well she handled it gave us strength and made us so proud.
The Pathologist confirmed that the tumour was stage one and that she’d only need another four rounds of chemo, which brought her up to the end of November. We thought she’d be able to have her line out at that stage and that ‘normal’ life would resume. However, unfortunately due to a number of delays, it was April before she had it removed, and this was actually one of the hardest parts of the whole journey for us and her. Not only could we not get the closure we had hoped for, but Erin hated her Mr Wiggly- she was very self-conscious of it and never wanted it to be on show. Even when she was in the bath or playing in the house with Cara, it always had to be covered with a vest or her swimsuit. It was a long wait, but we had to take comfort from the fact that this journey was almost over for us and that many other families go through treatment for years. She finally got her line out and rang the bell, all in the same week that she turned four, so it was a big and very happy week!
What was the impact on family life during this time?
I had such mum guilt for Cara- she was only two. While Erin was in hospital, Conor and I would be at the hospital all day and then one of us would pick Cara up from day care, spend a few hours with her before putting her to bed and then one of our family would watch her while both of us were down in the hospital. We’d take it in turns to stay in the hospital overnight, so usually whoever had put Cara to bed wouldn’t be there in the morning when she woke up, so it was all very confusing for her.
During Erin’s treatment and when the nurses were coming in every week to change her line, she would get so upset and this was really traumatic for Cara as she didn’t understand what was happening to her big sister. She had been at daycare part time while I was working but we had to make the difficult decision to increase this to full time to shield her from all of that. It was a hard transition for her to begin with and although she was only two, she knew that something was different. Even at weekends different family members would bring Cara out, maybe when the nurses were coming in or if Erin wasn’t feeling well, so that was all change for her. People were so generous and brought so many toys and gifts for Erin and Cara, but we always had to make sure that if Erin got something that Cara got something too.
We’re hoping that because she was so young, she’ll not remember any of this in the future.
Tell us about your time spent in the Children’s Cancer Unit.
It sounds like a strange thing to say, but I really don’t think of it as a bad place. Of course, nobody ever wants to be in the situation where they find themselves in the Children’s Cancer Unit, but the staff- the nurses, play specialists, Seana in clinic and everyone who works there- they’re incredible. They really help to make a traumatic time a bit easier, through distractions and providing toys or different things that help them to understand their treatment a bit better. Erin got a barbie who had no hair and a Build a Bear with a Mr Wriggly, so the staff were great at normalising everything for her and helping her to understand what she was going through.
What has it meant to attend some of the CCUC family events?
During Erin’s treatment we got to go to the Grand Opera House for a backstage tour and the Christmas lights switch on, which were brilliant, because we hadn’t been able to go anywhere like that for so long. All we’d been able to do was go out for a walk, away from people, but by that stage it was November, so it was getting too cold to take her out. So these visits came at a really good time and obviously we knew we were mixing with other families in the same boat so it was a lot safer than public events.
You’ve done some great fundraising for the charity- tell us a little bit about that.
My work, Arrow Travel, organised a big coffee morning which got incredible support. People were so generous and as well as the donations, friends and local people gave amazing prizes, it was a really great event. We were able to bring Erin along to it for a while so people were able to see who they were supporting and learn a bit more about how their donations would help. Conor’s brother’s work, Amber River NI did some fundraising too and we combined the totals to make £10,000, so we were able to give half of this to The Children’s Cancer Unit Charity and the other half to Angel Wishes who supported us too.
We’re also part of Road Runners AC running club and their committee held a big fundraiser in August for the charity which raised more than £4,000, so it’s great to see all the support for the charity.
How’s life for Erin and your family now and what’s next for Erin?
Erin is doing so well. She still needs to have scans every six weeks as well as an ultrasound and chest x-ray, and then every six months she’ll need to have a CT scan under general anaesthetic. This will be for at least a year and then the appointments should start to space out a bit more.
But we’re just delighted to see Erin getting back to full health and we’re determined to grab every opportunity we can. We went on a family holiday to Portugal in June and although we weren’t planning to go away again this summer, we spotted a great deal and jumped at it- family time in Mallorca was much more important than the new sofa we were planning! It’s all about creating happy memories for the girls after a very tough year.
And Erin has just started P1. She was more than ready for this big adventure, so we’re looking forward to seeing how that all goes for her.
Do you have a message you’d like to share during Childhood Cancer Awareness Month?
When Erin was first diagnosed, I didn’t really want to talk to any other families or parents who’d been through it- I didn’t want to know. But as time went on and we started to go to some of the charity events and met other families, we did get talking to people and realised it does help as they’re in our shoes. But just take your time and you can go there when you’re ready.
Although it’s very hard to see it when you’re in the middle of everything, there is hope. You mightn’t feel like it at the time, but I’d say try to hold on to the positives and stay strong for your child and your family as this really will help you get through the journey.
