Most families never have to face the terror of having a life-threatening diagnosis for a child. The number of families that have to face that fear for two children is especially small. But that’s exactly the terrifying situation that Noreen Doyle found herself in. Noreen shares her story of positively living with childhood illness here:
Three years ago our lives took a new direction. My youngest child Kate, who was seven years old at the time, was unwell. Nothing unusual – she had a temperature, she was tired and pale. In any other family it would probably not be of major concern but in ours – well, I knew. I had known in my gut for a few days, but was terrified to face it…again.
One Family’s Story of Living with Childhood Illness
My second son James was 18 months when he became unwell. As with Kate, it was nothing major, just recurring chest infections and general stuff that children of that age would pick up.
He had turned two on December 22nd and in the middle of January he really was sickly and looking pale and lethargic. I brought him to my GP, who referred him to Crumlin that afternoon, and many hours later he was diagnosed with leukaemia.
James was very sick so was admitted straight away and put on blood and platelet transfusions for several days.
He had loads of setbacks. He stopped walking and was in a wheelchair for a while. He really struggled for the first three months of his treatment, and spent a lot of time in Crumlin. My first child, who was three at the time, was sent to my family in Cork for a while because we were in the hospital with James.
It was a challenge, and it took more than 4 years for him to become well again. But he did get well and is now an amazing child, and we settled back into life as a normal family again.
Until April 22nd, 2017.
Could It Be Happening Again?
For a few weeks in March and April 2017, my fourth child Kate started getting high temperatures. Then she started taking little naps during the day, she was looking pale and lethargic, and I just knew straight away..
For the first few days I was in denial about the whole thing. I just thought ‘No, this just cannot be the same thing. It just cannot be the case’.
I brought her to the same GP. She said “Not a hope, lightning never strikes twice” before referring us to Crumlin again.
We arrived into A&E and I literally said to them “Look, just do the bloods on her as quick as you can because I have a gut instinct with our history.”
In two hours they told us that she looked like she was presenting with leukaemia as well.
Professor Owen Smith had been James’s doctor so I texted him straight away from A&E and said “I think we’re in trouble. I need help.”
He rang me immediately and spoke with the doctors in A&E. He told me “I’ll be in with you in the morning. And we will deal with this together. We will make a plan.”
The diagnosis was more or less confirmed the following day. Then there were a number of tests to determine what type of leukaemia it is and what level she was at. We were sent home for two days to get everything together and digest it, then we packed our bags and came back in for a period of time. Luckily, Kate really did sail through her treatment.
How Research Helped
When James was in treatment, he entered a research trial. Ten years later, the results of that trial had an impact now on what Kate’s treatment would be. We’re benefitting from the research James took part in.
The research that happened from James’s trial and subsequently across those 10 years, meant that with Kate’s treatment the prognosis was better, the rate of curing the disease was better, and the length of the treatment was shorter.
The research James took part in shaved six months off the treatment length that Kate would have to go through. Now, we have entered her into a new research trial that, hopefully, in years to come some other children will benefit from.
These trials are critical to the ongoing treatment and the overall care of the child. It’s the overall quality of the life that the child has. You must remember that – while they are sick, they are still children.
The Impact Of Childhood Illness
Whilst they are diagnosed with cancer, you desperately want them to have some kind of quality of life. You don’t want the cancer to rob them of their childhood if you can possibly help it at all.
It’s so traumatic on them and on the whole family. It really does feed out to everybody and into the community, like all of the little ones in Kate’s class.
When Kate was diagnosed in April, she was due to have her First Holy Communion three weeks later. That had an awful impact on the little girls in her class. The mums were concerned and asked questions like ‘Will she look different? Will she have hair?’ People who’ve never known a child with cancer, or who have never been around a child with cancer, they just don’t know how to react. It causes a certain amount of anxiety.
Positively Living With Childhood Illness
Kate would tell you, despite everything, that she had the best summer ever, believe it or not. I’m a very positive person and I try to instil that in my children. I firmly believe that as a parent, you have to feed positivity to your children. They thrive on that.
If I’m going to be permanently worried and upset then Kate would pick up on that. Children are so intuitive. We have a very strong bond and we’re a very close family. From day one, we told her everything. We sat her down and we said “Do you know what, it’s crap. It’s not going to be easy, but we’re going to try and make it as tolerable as possible along the way, but you’ve got to work with us.”
She would be naturally bubbly and upbeat, always. So for every milestone and difficulty she’d have, like when she was getting her ‘Freddie’ in or getting some of the harder chemo, we’d organise for her to meet somebody she wanted to meet, to go to a concert or do something to distract her, or arrange events that she had to look forward to.
I would have no qualms about asking people to help in times like that. People are fantastic. It meant that when she had memories of that awful day or that tough procedure or that difficult injection, it’s diluted with positive memories.
We have met a lot of rugby players. She has a particular grá for one of the Connacht and Ireland players – Bundee Aki. When she got sick she made a list of the things she wanted to do and people she wanted to meet. She always said she’d love to meet Bundee Aki. I said “OK Kate, I’m going to make that happen!”
It was coming up to her birthday, she was back in hospital and I contacted him. I asked him “could you send her a card or could you send her a message?” He made this gorgeous video for her and sent it to her and I played it for her on her birthday. She cried with excitement.
A couple of weeks later she got to be the mascot for Connacht! She was in her element, let me tell you! Bundee Aki was just fabulous with her, and so was John Muldoon. When she got out onto the pitch with the boys, she was just like Queen of Sheba!
Since then, she really has thrived. She has sailed through her treatment and has a hugely positive mind-set.
Creating Positive Memories
If you acknowledge how awful the situation is, and do something to reduce the impact and bring something positive into these moments, then there can still be positive childhood memories. Having cancer is just a part of it, rather than something that ruins or overwhelms it.
Kate loves Bernard O’Shea and the presenters at 2FM. We got her into the studios one morning. She had a ball, got taken around the studios and met all the different DJs. People are just so good and to put a smile on a tiny child’s face – wouldn’t it just make your day?
Our Amazing Community & School
The community reaction has been unbelievable. We live in a small community in Naas and the school is a small country school. The principal was absolutely phenomenal. The teachers were brilliant. The class made banners and they all made cards and sent them into the hospital.
Kate would Skype her teacher during the day and some of the other school staff might come onto the phone to her, just being so supportive and sending in school work if she wanted it. Although she didn’t have to do it, it’s good to keep things as normal as possible. She was treated very normally, but at the same time they were so protective of her.
All our neighbours and friends were fantastic and we are so appreciative of the community we come from. When I came to Crumlin with Kate, all the Mums started a dinner routine so that my husband and my other three kids at home were fed properly. We were in hospital for a few weeks and when we came home our freezer was stacked full of the most beautiful dinners. I didn’t have to think about school pick-ups and drop-offs – they were just wonderful!
How CMRF Crumlin Helped
When James was getting his treatment, he was in the old St. John’s ward, before the CMRF Crumlin investment. The old ward and the new ward are poles apart.
When we came in here first with James, you would be in a room divided in two with a curtain pulled across, so there’d be one child on one side of the room with their family and another family squeezed into the other side of the room. There was no ensuite bathroom. You could be sharing the bathroom with up to eight other families. There was no privacy. You were sleeping on a fold out bed.
With the help of CMRF Crumlin, now you have your own room, your own ensuite bathroom and it’s luxury compared to what it used to be. This new refurbishment just makes it so much better and easier during a very difficult time. Now, when we come in, we make the room our own with fairy lights, her own teddy bears and cushions so that it feels a little bit like home for her. There is no comparison between the old and the new.
I’ve seen first-hand the benefit of the money CMRF Crumlin puts into both Our Lady’s and also into the National Children’s Research Centre. I wouldn’t wish a sick child on any parent, but if your child is ever sick, then the best thing you can do is hope there’s good research to help improve or cure their illness – and that there’s amazing staff and state-of-the-art facilities to help them get better.”
Noreen Doyle, Kate and James Doyle’s mother
#WhateverItTakes #CancerResearch #CMRFCrumlin
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