Give Seriously ill Children their Childhood Back

Sitting on the hospital bed, all Aoibhe was worried about was her tablet running out of charge. Not the GP visit, the hospital dash or the scans and blood tests. No, she just wanted her charger. All I wanted was for the nightmare to be over for my little girl and me. But it was just the beginning.

When Aoibhe’s eye became bloodshot and swollen I wasn’t too concerned. Her older sister Clodagh had an eye infection not long before and a course of antibiotics soon cleared it up. But I’d barely sat down in the doctor’s surgery with Aoibhe before being told, “We need to get her to Crumlin Children’s Hospital.” I couldn’t understand why we weren’t just going to our local hospital. When the doctor held my hand and said “you need to go to Crumlin as soon as possible” I knew it was serious.

Three hours later, we found ourselves in the children’s cancer ward! I had to hear the word cancer twice before the penny dropped. Surely they’d got it wrong? Maybe I didn’t hear right? My little girl…cancer? My world crumbled – I was heartbroken. Of course, I couldn’t let Aoibhe see her mammy falling apart. So I stepped out to get Aoibhe her charger from the car. To this day I don’t know how I managed to find my way out of the hospital. All I knew was I had to get out of that room, had to take five minutes, had to stay strong for my little girl. Aoibhe’s childhood was about to be snatched away and put on hold. She was just nine years old.

Aoibhe was catapulted into an adult world with the cancer diagnosis. But with your help, she got her childhood back. Right now, there’s another young child just like Aoibhe putting on a brave face through painful tests and gruelling treatment, trying to make sense of their new world. There are parents trying to help them hold on to their childhood against all odds. 

On 13th April 2021, Aoibhe was diagnosed with Rhabdomyosarcoma - an extremely rare soft tissue cancer affecting the head and neck. The days that followed were some of the worst. Aoibhe had a central line put in straightaway ready for chemotherapy to start the next week. More blood tests, scans and a bone marrow biopsy followed to check whether the cancer had spread. It felt relentless. Looking back, it was nothing compared to what was to come. My whole world became consumed by cancer and everything that comes with watching your child go from worry free to facing 14 months of intense chemotherapy: the disbelief, the uncertainty, the helplessness. Fear like I’d never felt before. Aoibhe’s world went from playing with her pals, painting, drawing and dancing to dealing with her hair falling out. Yet she dealt with it in true Aoibhe style.

On the day of her Communion, she wore the most glorious pink wig. It lasted a couple of hours before she decided she couldn’t be doing with it anymore and was much happier being bald! I was just bursting with pride. Every day Aoibhe amazed me with how she coped. She was such a trooper. She’s since donated all her wigs for other children who’ve lost their hair. She used to say to me, “Mammy I’m lucky. I still have my eyebrows, some kids lose all their hair.” Her kindness and empathy throughout her journey really shone through. But the call to go to England for proton therapy broke us both. Straightaway, Aoibhe told me she didn’t want to go. The thought of leaving the safety of our little family bubble overwhelmed us. Especially since we had just two days before another country was to become home for two months. Those eight weeks away from my older daughter Clodagh, my parents, and everything familiar took its toll on us all. Especially Clodagh, she had to say goodbye to her mammy and little sister for the next few months, all while getting ready to start secondary school a few weeks later. It was incredibly hard for her. She had so much change that year.

The treatment really knocked Aoibhe for six. Her pals would come to the door for her to play - she desperately wanted to join in. But her body wouldn’t let her. By now she was too weak. Instead she’d watch them playing in the street from the window. I remember her sad eyes looking out like it was yesterday. My little girl was hurting and I couldn’t take away her pain. Sometimes Aoibhe would invite her friends in to play with her toys while she lay on her bed. My heart shattered over and over. A very brave Aoibhe on her Communion day Life very quickly became all about things Aoibhe couldn’t do. No swimming. No running. No playing outside. No dance class. No school. No parties. And over the weeks and months, Aoibhe’s world got smaller and smaller. Eventually home and the hospital treatment room became the only places she could go. That’s when I got her a wheelchair.

The chair started as blue –the only colour I could find – but Aoibhe is a very pink girl so that was never going to work! Instead, I turned it pink from top to bottom with pink covers and little pink bags embroidered with her name. She loved it! All you want as a parent is for your children to be happy and after months of feeling helpless, I finally brought a smile to my little girl’s face, with a pink wheelchair! Not long after, Barretstown was suggested to us by our Nurse Specialist. But I told the nurse I didn’t think it would be possible for Aoibhe to go because by now she was reliant on the wheelchair for most things. There was still so much she couldn’t do. And she was having chemotherapy at Crumlin every week too. But the nurse said let’s just put her down to go and see how she gets on. Two months later and one year after her diagnosis, Aoibhe was having a ball with her new pals at Barretstown! And I realised what our nurse was trying to tell me – Barretstown would change our lives. But dropping her off on her first day was tough. I walked in with a bag of Aoibhe’s clothes, another jampacked with medication and a heart full of worry. I’d been the one making sure Aoibhe took the right tablets at the right time several times a day for a year. Taking care of our babies is what us parents do, and now I had to let someone else look after my little girl. But the beauty of Barretstown is because they have a medical facility on site called the Med Shed, they make it possible for children like Aoibhe to join in even mid-treatment. I knew she would be in the safest of hands, but it’s our job to fret isn’t it?!

When I picked Aoibhe up during camp to take her for chemotherapy in Crumlin, she was full of talk about her new pals, the girls she was sharing a cottage with and camp activities. She was having the time of her life – so much so that she told me to hurry back to Barretstown after her treatment. It was the drama activity that afternoon and she didn’t want to miss it! I saw the sparkle in her eyes that had been missing for too long. Before Barretstown, Aoibhe spent so long standing on the sidelines. The list of things she couldn’t do grew longer every week while her confidence shrank fast. Before she came to camp, I remember overhearing her telling one of the volunteers at the Summer open day about the things she wouldn’t be able to do at camp. And they told her, “Here, we don’t say we can’t. We say we try.” It makes me teary to think about it because Aoibhe took that to heart and it was a turning point for her. Of course, all the activities were lots of fun to Aoibhe, but her favourites were the arts and crafts and filmmaking. They were the making of her. She started believing in herself again, and I got the old Aoibhe back - plus a few new dance moves, crazy songs, funny sayings and so much more that she brought home from camp! That’s what Barretstown does for children like Aoibhe. It was when we went back to Barretstown as a family that I realised just how special the place is.

Myself, Aoibhe and Clodagh shared a cottage and this time, camp sprinkled its magic on us all. Aoibhe’s illness was so hard on Clodagh too – she went into her shell and became very quiet. She’d spend long periods away from home and from me, staying with grandparents while I was with Aoibhe in the hospital. I even missed her first day at secondary school when Aoibhe was getting treatment in England. We can’t get those times back. We had no choice but to put making memories on hold. But at Barretstown, we could finally take the brakes off and make precious memories together that will stay with us forever – especially dancing for our dinner every night! In fact, it was the dancing and silly games that gave Clodagh her sparkle back too. We did some silly things that kept us laughing long after we left camp. It showed us all there is happiness and hope in the face of cancer. Aoibhe rang the ‘end of treatment’ bell a week early on 1st October 2022, and it marked the start of us all getting back to normal life.

Today, my little girl is an independent 11-year-old keeping me on my toes and making up for lost time! She’s flying around with a long list of things she wants to do, Tayto Park, Dublin Zoo and many more! Seeing that energy and sparkle back makes my heart sing. We’ve got Barretstown to thank for that. And you, who support Barretstown. You see, when you give to Barretstown, you’re giving families like mine the gifts of happiness and hope. And for mammies like me, you’re making sure we can make family memories to keep no matter what the future holds.

Thank you from the bottom of my heart,

Orla (proud mammy to a very confident Aoibhe and Clodagh)