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My name is Elysha I am 17 and currently in 6th year. You can read my full story of living with a brain tumour here. I wrote this story when I was 14, in the hope it would give kids and parents a positive insight into life as a young person dealing with cancer.

My story starts in 2001. I was 4, I had a problem with my vision. My left eye was getting weaker and weaker. I had to wear an eye patch and glasses. Every morning I would pick out a cartoon figure sticker, usually a Disney princess one and mum would put it on my patch. I kinda just looked like a pirate not a princess! I hated wearing that patch it was very uncomfortable. The glasses didn’t work either. I used to chew on everything tables, chairs, books. I got into trouble with the library because I ate a book once, brings a new meaning to the phrase bookworm lol. I’d leave teeth marks on everything. I got into trouble at school as well because I used to eat all the pencils and crayons and bite the corners off the desks. I even bit a girls arm once, it's fine though she is my best friend now! The doctors later said I might have done this because of pressure in my brain. I don’t know, I never felt pressure in my brain. I felt normal. Mr. Young, my eye doctor or ortahalmatologist (you will hear lots of big words when you are sick, but you will get used to them and understand them after a while. I still can‘t pronounce half of them! ) Well I would give him a big hug. Mam said it was funny coz Mr. Young was not the hugging type. But I am. I always liked Mr. Young even though he wasn’t funny or anything. He was my first doctor. He was always very nice to me, and he looked after me very well. He is retired now, and I miss him.

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, coz 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, Lumper 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 I have so I am glad to do it now. I have had millions of them. When I was 5, I was diagnosed with a brain tumour. 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.

My first day in 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! My doctors are really smart. Mr. Alcott told me he likes to go fishing and I asked him if he caught the salmon of knowledge because he knew everything. Finn thought this was very funny. I really believed he ate that fish!! 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 to get Freddy in.

Ah Freddy my buddy, I ended up with a few Freddie’s as my treatment went on. Oh people may not know who Freddie is, Let me introduce you. Freddy is my Broviac Line. It is a white tube that goes in to my main vein just above where my heart is. All my meds, chemo, infusions, transfusions and anything else that ends with usions or otics goes into Freddy. He became a real person to me. He is a teenager, an American teenager 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 freddy 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 ass. Freddy prevented all of that. Freddy had a little sleeping bag it’s like a pouch that tied around my neck. I have lots of Freddy bags. All in lovely colours. Some group of kind, old ladies make them. Thank you Kind Ladies! I have two scars on both sides of my chest from where my two Freddies were. These scares 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 goes into Freddy you can feel it burn up through your body. It stings for a while but it's ok, as Mam says 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, it helps your blood to clot. Oh and neutrophenic that’s the big one! Low white cell count. Your white cells fight infection, so these are very important. If your neutrophenic, which you always are after chemo and I got chemo every Friday so I was always neutrophenic. 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 at you, some mean boys at school would call me a boy or baldy. I gave one of them a punch! The girls were very nice to me. I think girls are just a little bit smarter than boys, some boys are nice so it’s not fair of me to say that really. I think they were just scared they just didn’t understand, just like me the first time I went for my MRI. Sometimes I wore a pink wig to school. It made me look like a girl. Pink rocks!!! 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 play lots of games. When we were on our chemo it takes hours, all day on a drip. My friends and I would run and then jump on the wheelie thingy that the chemo bag hung from and have races down the corridor in John’s wards, it was like being on a scooter. The doctors and nurses would have to jump out of our way. That was great craic. I would have great fun with the cleaners as well, they are so nice. We would dance around our rooms with them they would make you laugh. Singing songs and goofing around. Everybody on Johns 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. I had two best friends in Crumlin, one girl who had leukaemia and another girl who had a brain tumour. We were great friends and always had great fun together and our parents were great friends as well. If we were in hospital together one of our rooms would turn into a party room and we would play music and dance all night. You can do that in Johns. You can party all night if you want too. Sur you have too you have to have fun in life.

I have to speak about my family. Mum was always with me, she never left my side. She slept in a fold away bed beside me, at times when I was very sick she would sleep with me in the bed and hold me so tight. I liked that. It was very hard on my family when I was sick. Mam had to give up her job. Dad had to mind my brother at home and this was hard on them. I missed my brother and Dad so much. They would come and visit me all the time. It was very hard on my dad seeing me sick. My dad is a big softy, and I’m Daddy’s girl. Mum can be a softy too but she is much calmer when things go wrong. Of course things always went wrong! She minded me all the time, she would clean Freddy. Inject it with stuff so it wouldn’t stop working, she would clean my wounds change my dressings. She did her fair amount of cleaning up sickness and blood and all sorts of things like that. Sorry Mum xxx She would read me stories when I was too sick to get out of bed. She would make me my favourite food in the kitchen on John’s ward so I would feel like I was at home. It’s hard to eat when you are on chemo, everything hurts your mouth is full of ulcers and you feel sick all the time. So if I felt hungry even if it was 4 in the morning, she would go and make me something to eat. Of course I wouldn’t eat it then..too sick! She would go down to surgery with me and hold me while I got my sleepy medicine. We painted lots of pictures and painted the cardboard sick bowls and we would wear them like funny hats. We were doing Lady GaGa before her!! We would blow up the surgical gloves so they looked like chickens. Then we would act out a play. We did lots of silly things like that. I would like to say I was always brave and most of the time I was but there were times when I was so ill I wanted to give up. I was just so tired but Mum would always say “You have the best doctors, the best medicine, but you have to do your part too, you have to fight it. “ She always pushed me on.

There were times when the doctors would come in and give some news that was not good to Mum. She 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. And she did, so well. My Mam is the best, and she always knew when things were not right, she always knew the right moment when I needed a hug, she always picked me up when I was down. She still does. Sometimes during the night I would get very ill, one night I started bleeding blood 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 keep saying was “stay with me, stay with me“, I think I passed out in the car. She drove like a lunatic that night she hit a hare on the road, poor hare, but she got me there, she always did. She is very strong and I am strong like her. You kinda have to be.

Finn and Anne are my oncologist (special doctors who know everything about cancer) they are the most amazing doctors in the world. They are so smart and kind. I love Anne she speaks to me like I am an adult. I know my own body and she knows this. She always asks me what I think, what I think may be the problem, or how we might fix it. We are a team. One time I was 7. 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. HATE ISOLATION!!!!!!!!!! PRISION!!!!!!!!!! One day a friend from school visited. She waved at me through the glass panel in the door. It was really nice to see her. I have very good caring friends. 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.

Back to my wish… 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 bust 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. Poor Mum, she just wanted me to be better so I could just go outside and play like the other kids.

I ended up being rushed to Crumlin in an ambulance shortly after that. 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 and got me chicken nuggets and chips. Yummy! I hadn’t eaten in a long time. 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 man put the sirens on for me. I felt really important. Like a movie star.

That night in Johns 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.

There is one funny story to all of this, like I said mum never left my side, you see the first day when they told me I had cancer mum said to me “don’t worry, we will get you better, I will be with you every step and I will never leave your side” Mum really meant this, when I was on life support she sat by my bed the whole time she would never leave, even though all the staff said she needed sleep. Anyway the time came for me to come off the life support a few weeks later, even though mum pleaded with the doctors to let her stay with me, she was made leave the room for this. She had to wait in a room down the hall, So this was basically the biggest moment in my life the will I live or die moment and what did mum do… she fell asleep!! FOR 6 HRS!!! haha we always joke with her over this. Fast asleep on a chair with drool pouring out her mouth. Poor Mum, she was wrecked from it all.

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 blew the bubbles so they would look like Marge Simpsons hair. The things you do to entertain yourself!! I was very weak for a long time. But it didn’t stop me going to the beach, I went to Kilkee. I kept getting sand in my wounds. Haha. I liked to sit on the beach, it helped me get better, and Nanny says the sea air is good for you. I think it is too. 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 always feel safe in Crumlin. It is my home from home and it is filled with my worst and best memories. It is part of my life, part of who I am. Part of what I will become. I am very proud of Crumlin and all the people who work there. I love you all. I will never be able to thank you enough for your kindness for pushing me on, for making me better and for saving my life. Because I love my life and I hope I will make you all proud of me too.

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 got to go to Give Kids the World, Disney World, Went to a Robbie Williams concert, when I was eight. Met Colin Farrell (still haven’t seen his movies, I am still too young! ) I go to Barretstown and hopefully I will work there when I am older. I have met the most amazing kids, met the kindest people and I am very lucky for that.

A special Thank you to my Mum, Dad and Gearóid, to Nanny and Larry (R.I.P), Granny and Granddad I couldn’t have done it without ye. To all the staff at Crumlin and Limerick Hospital especially Anne O Meara I love you Anne so much! To Freddy! To Alma and Rose. To Gonzo the best godfather a cailín could ask for. To Barbie the Doll - Don’t laugh she got me through many a tough long boring day in hospital. Ye all helped me get better.

Today I am a normal teenager. I don’t have nightmares anymore, I still chew the odd book lol 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, 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 am on the senior rugby and Gaelic football team in school, and we won both school final cups. My coach said next year he would like me to try out for the girls Munster team!! Boo yeah magnesium!! 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 have beautiful long red hair, I love my life. Who wants to be normal? That’s boring!

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