Marlie Meehan

Marlie’s Story  

By her mum Jenny
 

Previous to her diagnosis, Marlie was super healthy, really energetic, so bubbly and she was very advanced for her age.  

In July 2021, she was three and a half and it was during the heatwave when she became lethargic and her appetite decreased. When she began complaining of headaches, I brought her to the GP. 

The GP had advised that he was seeing a lot of children presenting with these symptoms due to the heatwave and had no concerns. I did voice that my gut told me that something wasn’t right but he reassured me that all seemed explainable with the heat and the accompanying symptoms. The day after the GP appointment, Marlie vomited for the first time. Marlie’s Dad Craig and I brought her to our local A&E and they did bloods and other testing but everything came back clear and we were told it was a vomiting bug. A day later we were advised by staff in A&E to attend our on-call doctor for a consultation and we were again advised that it was a regular gastro bug. Just one day later, Marlie became unresponsive at home and almost died in my arms.
 

Saturday August 14th 2021 was the most horrific day of our lives, when, after an emergency CT scan, we were told that Marlie had a significant brain tumour. I lost the power in my legs when they told us and out of pure shock I asked them to give it to me and not Marlie. Craig and I were completely devastated and heartbroken by the news and would have given our lives to trade places with her.  

Marlie’s first of six brain surgeries was such a lengthy one and it felt like a nightmare, like it couldn’t be real. In Temple Street, her incredible neurosurgeon was able to fully remove the tumour but we had to wait for the biopsy results for about a week. We really thought it couldn’t be cancer as she had already recovered so well, so when we got the results that it was malignant and a Grade 4 tumour, we were completely floored again. We were told that Marlie’s tumour was called ETMR, a very rare and highly aggressive brain tumour. We’d never heard of it and we didn’t know if anyone had survived it.
 

When we met Marlie’s amazing oncologist for the first time, she advised us that it was a tricky tumour to treat but that people had survived it. We held onto that hope – we had to. She told us it would be hard but that we had to “throw the kitchen sink at it” And so we did.
 

We were so thankfully always on the same page as Marlie’s neurosurgeon and oncologist and they really listened to us and gave everything they could to treating Marlie.  

When we said goodbye to the brilliant staff on St Gabriel’s Ward in Temple Street, we moved to St John’s Ward in Crumlin, where Marlie started her chemotherapy. She underwent several rounds of induction and then high dose chemotherapy, along with two stem stell transplants. She was in Crumlin for most of this time as the treatment was so gruelling and she fought through many illnesses and infections while undergoing her chemotherapy. It was incredibly difficult and it’s horrible signing these forms for such horrific treatment, but we knew we had to do it in order to save her life. The staff on St John’s Ward became like a second family to us – and they saved her life, as well as her surgeon and the staff in Temple Street.
 

We had incredible nurses looking after Marlie. At one point during her second round of intense chemotherapy, Marlie was lying in bed and she was so unwell and lifeless. She had dropped 2kg in two weeks and I was afraid to lift her because she looked so frail. One of her very favourite nurses came in and said let’s give her a bath. She helped us in doing this and gave Marlie syringes to use as water guns, which made Marlie smile. She was always there for Marlie and for us as Marlie’s parents, and her gentle encouragement and care throughout Marlie’s treatment helped us so much.  

The treatment and the side effects were horrific but unfortunately necessary. Once Marlie finished her chemotherapy in Crumlin, we went to Germany for proton therapy and she had another 30 general anaesthetics over there. It was really hard to leave our family and friends for over six weeks but we were so thankfully really well supported. Our family and friends had rallied together in the previous months and conducted fundraisers in order to help while Marlie continued on her treatment journey and we were so very grateful for that. Along with the incredible help of The Gavin Glynn Foundation, Marlie completed her proton therapy and had a ball in Germany, so much so that she still asks to go back!

Because Marlie’s cancer is rare, we didn’t Google it for a long time as we didn’t want to know more than what we could handle about it. But after a few months I wanted to understand it and learn what I could about it. What I read was devastating, but once we knew what was said, it made us even more determined not to let Marlie be a part of that devastating statistic.
 

Following recovery from her proton therapy, Marlie began 12 cycles of maintenance therapy last September. She also started her final year of pre-school at the same time and has now so thankfully and finally rung the end of treatment bell in St John’s Ward in June! 
 

Marlie is five and a half now and just starting Junior Infants. She is incredible and our little miracle. When she initially asked why she was in hospital and receiving treatment, we would explain that she needed medicine to make sure that the tumour didn’t return. We have always tried to explain everything as best as we can and in the hopes that it would allow her to process and understand a little of what was happening. Now that Marlie is finished treatment, there is a bit of confusion there. She’s no longer taking regular trips to the hospital and seeing the doctors and nurses who she loved, so it’s a huge change in her routine and her life. We’re taking each day as it comes and she is getting there with the help of play therapy and a great routine at home.   

Marlie didn’t just survive, she’s thriving and we are so incredibly grateful for that. She has a lot to look forward to. We want to make more people aware of the signs and symptoms of childhood cancer and to give anyone else receiving this diagnosis hope. I really wanted to read stories like this when Marlie was diagnosed and to realise that there is hope and that we are not alone. I would also stress to parents to go with their gut and not to be afraid to voice their concerns as much as they need to. It shouldn’t take repeated trips to get a diagnosis but if you go with your gut you are rarely wrong, and I’ve continued to see this many times since Marlie’s diagnosis.
 

One thing that Marlie’s diagnosis did for me was to teach me to live in the present. When she was diagnosed and we found out how aggressive it was, we realised we could only live for today and I know that is such a positive thing, being grateful for the present moment.