Niall Smyth (8) was diagnosed with acute lymphoblastic leukaemia (ALL) on 4th Jan 2019. On Christmas day his mum Siobhan recalls him being so unwell, he couldn’t enjoy Santa delivering his presents. Siobhan knew then that something was very wrong.
“Around September two years ago, when Niall was six years old, he started to have what we thought were nightmares. We were away for the weekend and my older children were at home minding Niall. He went to bed happy and about an hour later woke up very distressed and disorientated. My daughter didn’t want to worry, so she waited until we were coming home from the airport to tell us that this happened both nights we were away.
By the Christmas holidays Niall had become very pale and wasn’t himself. I will never forget on Christmas morning, Santa had been. Niall came downstairs and looked at all the toys and went straight back to sleep again. I knew something was really wrong.
One of my nieces was getting married on New Year’s Eve. We decided to go to the family wedding, but Niall was not himself. He was so tired and had no energy. All his cousins were there and normally Niall would have been running about and having the best of craic, but he just wasn’t fit for it.
I Just Knew
The day after the wedding I took him to the swimming pool, thinking he would love it. It was at the pool that I noticed these little bruises on his body. The first thing I thought was, it could be leukaemia.
When we got home, I immediately rang our doctor. She rang me straight back and when I told her what had happened, she told me to bring a hospital bag, just in case. I already had it packed. I knew where we were going.
From the GPs we were sent straight to children’s ward at Craigavon Hospital where Niall had his bloods taken. That night, on 4th January 2019 Niall was diagnosed with ALL.
We were transferred to the Royal Belfast Hospital for Sick Children (RBHSC) where we spent seven weeks in all. Niall had been doing quite well with his treatment at first and was due to come home after four weeks but he became seriously unwell with a nasty bacterial infection called cryptosporidium. He couldn’t keep anything down. He was so ill I really thought we were going to lose him. Niall spent his 7th birthday, on 6th February, in hospital that year. He couldn’t even lift his head. Miraculously, I don’t know how, Niall survived, and we brought him home three weeks later.
All in all, Niall has done remarkably well and aside from a few nights in hospital here and there, when he has spiked a temperature, he has been at home since. He is now in the final phase of his treatment, which is the longest phase. We go up to the hospital once a fortnight for treatment and Niall has a quarterly lumber puncture, along with daily medication in tablet form.
This was not just Niall’s cancer; it was everybody’s cancer. My older children Aine (20), Eimear (22), and Eoin (24) are absolutely fantastic with Niall. Everybody always said to me that he has three mummies and two daddies. Being the youngest Niall is such a special kid.
The effect his cancer diagnosis had on everybody was horrendous. Eimear was studying at university and contemplated dropping out. Thankfully, she didn’t, and has just qualified with a first degree honours in physiotherapy. Aine was sitting her A-levels. She did really well considering Niall was diagnosed right in the middle of her exams, but Aine didn’t get into the course she wanted so her life was put on hold. She took a year out which was a blessing for us, in a way, as she was a great help at home, looking after Niall but thankfully her career is back on track and she has just started her degree in social work.
Then Coronavirus Hit
We had started to get ourselves back in to some sort of routine when the coronavirus hit. I had just gone back to work part time in January. We were just starting to get a little bit of normality back in our lives when we were locked up again. That was really hard.
Niall was categorised as extremely vulnerable so Eoin, my eldest son had to move out of our house so he could continue work. Honestly, Covid-19 was as hard on us as cancer. It caused such upheaval in our lives.
Thankfully, Niall has now been re-categorised as vulnerable which is such a relief. In September he was allowed to go back to school, however it is still a very challenging time.
Right Support Right Time
Whenever Niall was being treated at home, Lynn was our Cancer Fund for Children, Cancer Support Specialist. She was just fantastic with him. She always seemed to come at the right time. Sometimes Niall wouldn’t have been well, and I would have considered cancelling Lynn’s visit, but she had such a good away with him. She was able to draw Niall out of himself and get him involved in therapeutic activities.
Lynn’s sessions with Niall were lovely for me too. I had gone from working, and being out of the house to being isolated at home. I couldn’t let anyone in to our house because I was terrified about the risk of infection for Niall. I come from a big family and was used to having lots of people round me all the time. My husband Kevin was out at work, trying to keep food on the table. Lynn coming out to the house was a breath of fresh air.
A Slice Of Heaven
That year Lynn arranged for us to go to Daisy Lodge. I will never forget it for as long as I live.
At first it was hard to except that we needed the support of a charity. We have worked all our lives and never thought we would need help. We didn’t want to need support, but the reality was we really did need it.
Our short break at Daisy Lodge was the first normal thing we did together as a family. Except for going to the hospital with Niall for treatment, it was the first time we had left our home.
Daisy Lodge was like a piece of heaven that we were able to escape to. We enjoyed the food, we took part in group work, and had treatments. The girls just loved getting pampered too. One of our favourite memories from our short break was sitting on the green sofas in front of the roaring fire and relaxing together.
We went to Daisy Lodge for a third time during the pandemic. It was so nice to get away from the same four walls and have a change of scenery. We would never have had that special family time at home where the five of us were able to sit down and take part in an art activity with Cat. These memories are priceless.
Connecting With Other Mums
I have also been on the health and wellbeing minibreaks and have been able to connect with some of the other mummies that I met in hospital. It was good to talk to them without our children being present. When I was in the hospital with Niall, he didn’t want me to talk about his cancer. He just wanted to get on with things. So, it was lovely to relax, catch up and share stories with other mums.”
We are so grateful to Siobhan for sharing her family’s experience of childhood cancer. Children and families who are struggling with the emotional impact of cancer need our support now more than ever. Please, donate what you can today to help us support more families like Niall’s.