Caoimhe’s Story
I’m Clare. I’m married to Daryl and we have two little girls, Caoimhe and Aoibheann. Caoimhe is five and Aoibheann is two.
Caoimhe was never sick. She’d had the odd cough and cold from Creche and things like that, but always bounced back very quickly. She never complained; she’d be much more interested in being outside and playing than having a couch day. We were blessed.
In early July 2023, the Creche teachers mentioned that Caoimhe had complained about a pain in her tummy that day. It wasn’t like her to complain, even the teachers remarked on that. She was already booked in with the doctor the following day because she’d been quite hoarse on and off for a few weeks. I was putting it down to the good weather and hay fever but had decided to get it checked out just to be sure.
I brought her to the doctor the next day and mentioned the pain in her tummy along with the hoarseness, and the doctor said she was fine. But over that weekend, she mentioned every so often that she had a pain in her tummy. She was a bit tired and wanted to stay on the couch more than usual. It really wasn’t like her.
Over the next couple of weeks, Caoimhe complained on and off about her tummy pains. We had consulted “Dr Google”, the Nurseline and even been back to the doctor and out-of-hours care in the weeks that followed but it all seemed to point to constipation. She was put on medication and that helped for a short while, but once she came off it, the pains would return. Even though she wasn’t constantly in pain, it kept niggling at me because it was so out of character for her to complain at all. But we’d been to the doctor a few times at this stage, and they said she was okay, so I thought, if the doctor says she’s fine then she’s fine.
In late August I was going away with friends for an overnight trip. That morning, I put her back on the constipation medication and got the girls ready to stay at their grandparents’ house. I came home the following day and picked them up. Caoimhe seemed fine, a bit tired but that was to be expected with all the excitement of spending a day at Nanny and Granddad’s house! I brought her home and started to get her ready for bed. That’s when I noticed a large swelling on her side. It was very noticeable but hadn’t been there the morning before and wasn’t noticeable when her grandparents dressed her that day. It was a huge shock. I just thought, how could that be related to constipation? I was so concerned.
I took a photograph of the swelling and sent it to my sister-in-law who is a nurse, and she sent it to some friends and colleagues who are paediatric nurses and asked their opinion. They said to arrange a scan for Caoimhe, along with blood tests to rule out anything more serious.
The next morning I brought Caoimhe to Crumlin Hospital, thinking they might want to keep her in overnight to drain whatever that swelling was. We were due to go on holidays the same day; I had all the bags packed and ready to go so we set off for the hospital and I really expected to be meeting up with Daryl and Aoibheann later that day, or more likely, the following morning to head off on holiday. Naively, we thought we’d be grand.
Caoimhe and I got to Crumlin just after 9am on the Monday morning and were seen to straight away. The team were brilliant. Caoimhe was sent for an ultrasound, and that was when the ball dropped. This was something much more serious. When the radiographer was doing the ultrasound, she explained that there was a huge mass on Caoimhe’s kidney. She said it was so big that she couldn’t even see her kidney. She was using words like ‘mass’ and ‘growth’. My head was spinning. I know those words are associated with cancer, but I just kept trying to stop myself from panicking. She was only four years of age. There was no way she could have cancer surely. As a mam, you’re trying your best to stay calm, but your head and your heart are going a mile a minute.
We had the scan done and were sent back to A&E for the doctor to review the results and talk to us about next steps. We were told they would have to admit Caoimhe and do further tests and that both the Paediatric and Oncology team were also coming to speak with me. So, obviously, when I heard Oncology, I knew that wasn’t a good sign. But the team were fantastic, and the staff were all so kind and compassionate.
The consultant was brilliant. She just said, “I’ll be straight with you. I think it’s cancer. We think that it’s a Wilms’ tumour and will need to do further tests to confirm it, but that’s what we think is happening here.” In that moment, our world just fell apart.
Caoimhe was admitted there and then. I had to ring Daryl to tell him what was happening and what they had said, and that she would need further tests to confirm it but no doctor is ever going to mention the ‘C word’ if they’re not 100% sure. So, we pretty much knew. That was the 21st of August 2023.
Caoimhe was officially diagnosed the next day, which was Tuesday. She had surgery on Wednesday to get “Freddie” inserted, the Hickman line, so that she could get her chemo and medicine through that. She started her chemo on Thursday. That day was also my dad’s fourth anniversary, which is why we were going away that week. I hate that week.
That week was just such a whirlwind because everything happened so quickly. Within those couple of days we had gone from constipation to chemo. We had all of this medication in the cupboards that we had to give her at specific times. We had to manage the sickness she was experiencing from the chemo; it was just a completely different world. It felt like we had been hit by a train, it was so overwhelming.
We were just on autopilot, going from appointment to appointment. Your life just changes and you don’t even realise it. We were so naïve in the beginning; we just thought, ‘it will be all over by Christmas. 2024 will be grand, we’ll be fine’.
Caoimhe had five weeks of chemo, followed by surgery to remove the tumour as well as her kidney. It wasn’t until the tumour was removed that they could do the proper biopsy and really confirm that it was a Wilms’ tumour and confirm just how serious it was. When they did the surgery, they discovered that the tumour was much bigger than they initially thought and much more aggressive. She was diagnosed with a Stage 2 Wilms’ tumour. This meant that her maintenance chemo plan after surgery was much longer than we expected. We were hoping that it would be a fairly short, but it was eight and a half months, and unfortunately, she needed radiotherapy as well.
Getting that news was almost as hard as the first day, because we just thought, ‘we’re really not getting a break here’. But what kept us going was that we were told from the start that it was very treatable and that there was a plan.
Caoimhe had a week of recovery after the surgery, and then it was straight into her new chemotherapy routine, which was more aggressive than what she had had before. Initially, she was having a day of chemo a week, for five weeks. After the surgery, she would have three days of chemo every third week. She’d also get an injection after the chemo to help build her body back up and manage the effects of the chemo on her body. For her that injection was the worst part of the whole experience. She was terrified and it was awful having to do that to her every three weeks.
At the beginning of October, she had three weeks of daily radiotherapy in St. Luke’s in Rathgar as well. She had to go in each morning, get the radiotherapy and then go home. Naively, we thought we could just drive up and down from our home, but taking traffic and everything into consideration, we realised that wasn’t possible. Thankfully, my aunt had an apartment close to St. Luke’s that she let us stay in for those three weeks. So, the four of us moved into that apartment for three weeks and stayed in our little cocoon.
We brought Caoimhe for her radiotherapy in the mornings, and on days when she was feeling up to it, we would try to do something positive together. We didn’t want her memories to be just about her being sick and in hospital, we wanted to make it seem like a family adventure. We were on our holidays up in Dublin! We did things like going to the Zoo, going to the shopping centre, even hopping on the Luas! We were lucky that she had the energy to do these things; it really made a difference, because for her, those three weeks weren’t as scary as they could have been. It was also nice for us to have some good memories of those three weeks too, and not just those of Caoimhe being so sick. We were lucky that we had that apartment to stay in, because I don’t know what we would have done otherwise. Whilst we did get to do things together as a family, those weeks and the weeks just after were the sickest Caoimhe had been throughout her whole treatment journey.
The team in St Luke’s were incredible with Caoimhe, and despite how sick she was after “Freddie’s Milk” (what we called the anaesthetic she had to get every morning to knock her out for the radiotherapy), she never minded going in to get it done. She looked forward every morning to seeing the team and helping them feed the fish in the 5 fishtanks around the hospital.
I was also incredibly lucky to get such great support from my job. They gave me as much compassionate leave as I needed, so I didn’t have to feel like I was choosing between Caoimhe and my job and I could focus on getting Caoimhe well and our family back whole again.
It was after our three weeks in Dublin that we really sat down and discussed how hard this all was on Caoimhe.
She was only four years of age, how was she coping? What does she think is happening? Does she understand? What does she understand? That’s when we decided to look at what support was out there for her.
In the first week of Caoimhe’s diagnosis, we spoke with a Cancer Support Specialist, Kim from Cancer Fund for Children, about the charity and the different services and support they provide. She also gave us a pack to take home with all the information inside it. In that first week, mentally, I couldn’t take anything in, because I just couldn’t accept the situation that we were in. I couldn’t bring myself to process that my daughter, Caoimhe has cancer. I was in denial. I was getting on with it, but to actually admit it to myself? I couldn’t do that.
After those weeks of radiotherapy I went through the package that Kim had given us and read about the charity’s individual support, and I thought that would be something really beneficial for Caoimhe. I reached out to Cancer Fund for Children, explained our situation and enquired if it was something we could avail of. I was then put in touch with Cancer Support Specialist, Claire, and arranged for her to come to the house to meet Caoimhe. I sat with Caoimhe beforehand and told her that someone was coming to play with her, I didn’t really get into more than that with her.
Caoimhe is really into arts and crafts, and within ten minutes of arriving, Claire discovered this about her. So, she got this big trunk of arts and crafts supplies out of her car and used that to get Caoimhe to introduce herself and what she liked and didn’t like. From that day, Caoimhe looked forward to Claire coming to the house so much. It was brilliant because kids of that age can be so nervous and shy around new people. So, I didn’t know how Caoimhe would react to Claire visiting. We had noticed throughout her treatment that Caoimhe’s way of dealing with things was to just ignore what was happening. If a new doctor or new medical students came in, and wanted to talk about updates with us, Caoimhe would completely shut down and wouldn’t even acknowledge them. She is usually a very sociable, chatty child, but she just shut down when faced with discussing what was going on and how sick she was. I was worried that this would become her coping mechanism for life, that she would just shut down and not talk to us. I didn’t want this to be a lingering effect of the cancer. For me, that was a big part of Cancer Fund for Children’s support, just someone whose sole purpose was to check in with her, without her even realising. If you asked her straight out how she was feeling, she would just tell you she’s fine. But with Claire and the support she provided, it helped her to share more about her thoughts and her feelings. It was such a relief for us.
One thing that Claire introduced Caoimhe to was ‘Hot Chocolate Breathing’. Together they drew and decorated a picture of a cup of hot chocolate. The sparkliest, glitteriest hot chocolate you’ve ever seen! Claire got Caoimhe to imagine smelling the hot chocolate, which was the slow inhale, and then imagine cooling down the hot chocolate, which was the slow exhale. It was basically mindfulness but done in such a child-friendly way. Even now, if Caoimhe is ever upset or anything, she’ll do her hot chocolate breathing. We all do our hot chocolate breathing in the house! It’s such a simple thing, but it was great for Caoimhe because she didn’t know how to do that to make herself feel better. Days where she’d have to get a canula in or get an injection, we would do the hot chocolate breathing together to help calm her as she was really terrified of that. It was amazing that Claire came out with these simple tools that Caoimhe could use. To have somebody there that could do that with her made such a difference, and we could see the benefit of it.
The day Caoimhe rang the bell, we got a call to say there was a space for us to stay at Daisy Lodge the following week.
It was just so special having that time together. Caoimhe thought that the Arts & Crafts room at Daisy Lodge was the best place in the world! And we were in a place with other families who just got it. It was comforting having those families there who understood, because when you’re going through it, not everybody understands. There were a lot of well-meaning people who were so good to us, and we were truly blessed with all the support we received over the year, but you do get a lot of pity, and you don’t want pity. To be surrounded by families that completely understood and you didn’t feel like you needed to explain yourselves or your situation, it was a weight lifted.
Even for Caoimhe to be around other children like her was lovely. Obviously, we had met other sick children on the ward when she was getting chemo, but everyone was so unwell, so they weren’t engaging with one another or really playing too much.
It was so nice for her to have that experience there, to be normal there, and not be the child who stands out because of her tube or her hair.
Daisy Lodge had so much stuff for us to do: I could get a massage, we got our meals handed to us every day, there were games in the evening. It was such a lovely opportunity as a family after the year we’d had. It was another side of the support that Cancer Fund for Children provides that is so invaluable to families because we had been through hell for the year, and it gave us this lovely time together as a family. It was so symbolic of “we’ve made it through”. Life will never be the same as beforehand, but in certain ways it’s better, because we have the appreciation of time together to do the normal things. You don’t care about the insignificant things as much.
Today, Caoimhe is loving life! She got her Freddie tube removed in August and was able to go to a few summer camps; we just wanted her to have as normal a summer as she could possibly have. Once she was finished treatment, she just got stronger and stronger. She’s not on any medication now and her appetite has come back, so her weight has come up. Her hair is starting to grow back, and she’s back in school. She has such an amazing joy for life, and it’s so infectious. The big thing for her was swimming. She used to do swimming lessons every week, but obviously after she got her Freddie tube in, she couldn’t go swimming. So as soon as Freddie came out, we went to the pool, and I’ve never seen a smile as big in my life. I think mentally for her, that was when she knew she was back to normal. As if she was thinking to herself, ‘When I can swim, I’m not sick anymore’. Because there were times throughout the year when she’d ask me if she would be sick forever, or if she’ll ever be better. That’s so hard to hear and to explain to her. But she was able to understand that, now that I’m in the pool, I’m grand. For her, that was the moment where it was all over, and life has been transformed.
We are so grateful for the support we received from Cancer Fund for Children. Before August 2023 I had never even heard of the charity. But from the moment we were introduced to Kim in that first week, to meeting Claire and all the team at Daisy Lodge, we just felt Caoimhe was supported and prioritised and we are so incredibly grateful for everything they have done for us as a family.
