My name is Elysha Ni Chulain.
My story starts in 2001. I was 4 when I first had a problem with my vision - my left eye was getting weaker and weaker. Little did I know that a year later I would be diagnosed with cancer.
When I was 5, I was diagnosed with a brain tumour called Optic glioma. It was on my optic nerve, at the point where the nerves cross each other, right in the middle of my brain. It was inoperable. That means you can’t have an operation to take it away. So I had to start chemo.
I had to do a lot of tests some of them were very weird. I had to stick my head in a bowl and click a switch every time I saw a light. I’d just click away; I couldn’t see anything. That was called the visual fields test. The nurses would show me pictures and I had to say what they were. When they covered my right eye I couldn’t even see the nurse, never mind the picture. I also did the normal eye test, reading the letters. As I got older I got cute and figured out that while my mum was talking to the doctor I could learn off the letters by heart and then when they covered my good eye I would rant off the letters. I thought this was great fun, because the doctor couldn’t understand how I could see the letters, as I’m blind in my left eye! Mum copped on to me though. I have actually had every known test done! I had cat scans, MRI’s, ECG, kidneys test, hearing test, lumbar puncture, one where they stuck things on my head and flashed imagines in front of me. It is scary first when you have tests, but that is ok, we are all scared of things we don’t understand. I was very scared of the MRI, going into that tunnel. But they are actually fine they don’t hurt and it is the most important test you need. I have had loads of them.
My first day on St John's ward in Crumlin I met my oncologist Finn, and my neurosurgeon Mr. Alcott. They were very nice; they explained to me and my family about my tumour and showed me a picture of it from my MRI. It was a shiny circle in the middle of my brain. It actually looked very pretty, like a bright star in the middle of my brain. Funny isn’t it! Then I went to my room on Johns ward. I just remember everybody was lovely the nurses were so nice and the cool play room. All the kids had no hair and were very white. I had surgery the next day. My first surgery I ever had was to get “Freddy” in.
Ah “Freddy my buddy, I ended up with a few “Freddies”, as my treatment went on. Oh people may not know who “Freddie” is, let me introduce you. “Freddy” was my Broviac Line. It is a white tube that goes in to the main vein just above where my heart is. All my meds, chemo, infusions, transfusions and anything else that ends with “usions” or “otics” went into “Freddy”. He became a real person to me. He is a teenager, an American teenage boy to be exact. He was kinda my friend - he protected me and I protected him. I was very sad the day when they took “Freddy” out for good, I know it's silly, I even knew back then he was just a Broviac line but there were times during my chemo when “Freddy” didn’t work and it was very painful getting my meds and stuff with the little IV cannula on my hand and my veins would collapse. I have shocking veins. Sure of course I would! The nurses can never find them and I would get scared; so scared I would start to sweat and scream out at them, and then I would faint. Even now after all these years I have had millions of injections and I still have a panic attack when they come at me with a needle, it's so stupid you think I WOULD JUST GET OVER IT, BUT I JUST CAN’T HELP IT. It is just a pain in the butt. “Freddy” prevented all of that. I have two scars on both sides of my chest from where my two “Freddies” were. These scars give me courage and remind me of how brave I have been and how lucky I am to be alive.
Chemo, what is chemo like? The minute it went into “Freddy” I could feel it burn up through your body. It stings for a while but it's ok, it’s good / bad medicine - you kinda have to get sicker to get better. When you are on chemo all you do is count blood cells and take your temperature. Take bloods, if they are not right you get blood, or platelets (that looks like orange juice and helps your blood to clot). Oh and neutropenia - that’s the big one! Low white cell count. Your white cells fight infection, so these are very important. If your neutropenic, which you always are after chemo and I got chemo every Friday so I was always neutropenic. You get really sick and end up in hospital. But that isn’t so bad. I always had fun in hospital. We were all in the same boat. In the outside world people would stare. Sometimes I wore a pink wig to school. It made me look like a girl. But in Crumlin we were all the same - we were normal. We all had no hair, we all had white skin, and we all had wonky blood counts. We would dance around our rooms with the doctors and nurses. They would make you laugh with their sing songs and goofing around. Everybody on John’s ward is like a family, a big family. There is lots of “goofing around” in Crumlin. It’s important to know that even when you are sick you can also have great fun. You can do that in St Johns. You can party all night if you want too.
There were times when the doctors would come in and give some news that was not good. My Mum would go outside the door of my room for a while and cry, then come back in all smiles like nothing was wrong. She was always happy and smiling around me. I knew at times she cried, but she did not want me to see it. So I pretended I didn’t know. I understand now she was trying to protect me. Sometimes during the night I would get very ill. One night I started bleeding from everywhere, my mouth, eyes, nose and other places that are too embarrassing to say. It was very scary, I remember Mum driving very fast to the hospital all she kept saying was “stay with me, stay with me“. I think I passed out in the car. She drove like a lunatic that night but she got me there, she always did. She is very strong and I am strong like her. You kinda have to be during cancer.
Finn and Anne were my oncologists (special doctors who know everything about cancer) They are the most amazing doctors in the world. They are so smart and kind. I loved Anne - she spoke to me like I am an adult. I know my own body and she knows this. She always asked me what I thought may be the problem, or how we might fix it. We are a team. When I was 7 years old, I got really sick. I don’t remember any of it really, I was in Limerick hospital for a few weeks and I just got sicker and sicker. My bones stuck out through my skin and my skin burned with a rash. No medicines seemed to work. They tried everything. I was put in isolation “a.k.a prison”.
The “Make a Wish” foundation called. Mum always acted funny around the people from Make a Wish I never understood why as they were so nice, but when I started to write this Mum explained to me that Make-a Wish stepped in when things were not good, Mum just didn’t want me to be at the stage of having to make a final wish. This scared Mum, but we all know now that this is not true, they in fact played a huge part in helping me get better. They asked me “if you had one wish in the whole world what would it be?” I had been in isolation for so long. Mum and I used to look out the window at the other sick kids playing in the outside play area. Some days I would feel ok and I wanted to go out but I was never allowed. So when I thought of my wish I said “to walk in a park” I remember Mam burst out crying when I said that. I thought I had said something wrong, so I tried to think of another wish…but Mum told me later she thought it was the sweetest, most perfect wish and she was proud of me. And her tears were happy tears, she just wanted me to be better so I could just go outside and play, like the other kids. But right when things were looking up, my world seemed to crumble around me.
I ended up being rushed to Crumlin in an ambulance. In the ambulance I suddenly felt better and I sat up and wanted to eat. I had not eaten in a very long time. The ambulance man stopped in “Abrakebabra”. Mum was so happy that day, she thought I was all better. I was happy, the nurse was happy, we were all happy. And we sang songs all the way to Crumlin in the back of an ambulance and the ambulance driver put the sirens on for me. I felt really important. Like a movie star.
That night in John’s ward I got very ill again. In the morning I had a massive heart attack. I actually died and they brought me back to life, imagine they can do that, bring you back to life! Crumlin are amazing like that! Then I had another heart attack and that went on for a few hours. They kept working on me - they never gave up. My whole body stopped working it went into some kind of shock and I had multi-organ failure I ended up on a life support machine. My whole body stopped working my lungs, my heart, my kidneys everything but Anne and all the other doctors and nurses made me better. It took a long time, but hey never gave up on me.
I couldn’t walk at first when I came out of ICU. I had to use a wheelchair for a couple of months. My legs didn’t work, my muscles were very weak and there were holes in my feet. It was very sore. I had to do a lot of physiotherapy. My lungs weren’t great either so I had to practice breathing and blow bubbles to strengthen my lungs. I got better…it was very hard - I had to go back on chemo. It took a long time but I am here today. If I have a day that I feel is hard, like having loads of study to do; I think about this time in my life if I can get through that I can get through anything right.
I know what I have written sounds a bit miserable, but having cancer isn’t so bad. Having a brain tumour has actually been a good thing in my life, I got to do things I never would have done. I’ve been able to share my story online with the Crumlin’s heroes project and also by being one of their champion for the “Kellogg’s fund raise 4 kids” project alongside Ryan Sheridan. I got to go on Ireland AM, TG4 and many national radio and newspapers sharing my story and on how we can help others with cancer. I was able to share my story internationally by wining volunteer of the year award by travelling to America as a special guest to their ceremony. Last but not least I have been able to join some amazing camps, such as Barretstown and some amazing organisations such as the lovely canteen.
Today I am a normal teenager. I don’t have nightmares anymore, I still have my tumour but that is ok, it has stopped growing. I am blind in one eye, but that’s grand too, I can see everything with my right eye. My kidneys are a bit wonky, but nobody is perfect. I have a problem with magnesium but sure that is fine too. With my magnesium deficiency I was told I can’t play sports, something to do with weak muscles... Wrong! I was on the senior rugby and Gaelic football team in school, and we won both school final cups. I still have shocking veins!! My heart is strong and full of love. I play rugby, I love to sing. I love to act. I love my life. Who wants to be normal? That’s just boring.
If you are sick, it is ok to feel scared, it is ok to cry, but remember we are kids and no matter how sick our bodies are we are strong. It may take a long time and it is a hard journey but you will get there. You have the best doctors, the best medicine you will get better and you will have lots of smiley fun days in CanTeen!
Elysha Ni Chulain
