Ciara's Story

12th February 2007

Hello my name is Ciara Hoolahan and I going to share my story about me having Ewing’s sarcoma when I was just 7 and even my story after that.

I am

now 18 years of age but it all started back in 1995 when I was just a young girl of 7. It started with just really bad pains in my left leg. My mum brought me to the doctors but he just said I was doing too much sport to relax for 6 six weeks cause it was “growing pains”. I was soon to find out he was very wrong, a couple on months later and many doctors visits later my mum said enough is enough and took me to the hospital.

When we got to the hospital I was being my usual self and swing out of the monkey bars. My mum was like “are you sure you have a sore leg you don’t look like you do?” but I just said it comes and goes and when goes the pain I am fine but when I do have it its really bad. So after the doctor took an x-ray me and my mum knew it wasn’t good I don’t think it ever is when you see the doctor running in and out of his office with your x-ray in his hand looking very confused.

It wasn’t long until we were called in and the doctor said there is some on the x-ray that he cant explain and I will have to be taken in to hospital straight away with out delay for some more tests. A week and a half went by when I was sent for a biopsy once we heard that we knew it wasn’t good.

I was sent from Harcourt street hospital over to Cappagh hospital for the biopsy. Two days later we get a phone call to come back to the hospital, as the results are in. ahh what a feeling know you where going to the hospital not for good news but bad and even though I was only 7 my mum done her best to share things with me and that’s the way I wanted things after all it was happing to me even though it effects the whole family.

At the hospital they confirmed it, it was a Ewing’s sarcoma and it had spread to my chest. I’ll never forget it from that moment my life changed and it would never be the same again. The next day I started a very intense 11-month round of chemotherapy. Half way through it I had an operation to remove the bone which the Ewing’s had engulfed but the operation didn’t go according to plan during the op they straighten my leg to wrap it up and they lost my pulse, so to get it back my leg was bent to a 90 degree angle and put in to a cast for six months. And as for the tumours in my chest the chemo was doing a great job and shrinking it away soon it was totally gone and I didn’t need an op on my chest. At least one thing was going right.

But things with my leg just kept on getting worse after the six months in a cast when it was time for the last cast to come off. when they opened it and had a look at my wound the unthinkable had happened the wound had opened because I was still so weak from the chemo and infection had started to set in. the doctors tried everything they could over the next six months but with each pasting day the pain got more and more intense and it came down to the doctors taking me and my mum aside and telling us that we know had a big decision to make they told us that because they had already try everything they could to save my leg the infection just keep getting worse and worse no matter how much they tried and I tried to fight it. The last choice and to me the only choice was to have my leg amputated but even though we where given the choice it was still one of the hardest to make and we kind of took to long and they hospital knew the right thing was to amputate.

A nurse which had looked after me though out my whole illness came out to my house and sat down and told us it was either my leg or my life and the nurse said she liked me too much to let the leg win. and so 5 days later it was the day that really did change everything. From the second I got out of the operation I felt so much better the pain had gone (may be because I had tons of morphine in my arm I think that helped) within 3 days I felt soo much better it was such a weight gone off me and everyone could see I was going to be all right I was out of the hospital within ten days hoping about and making up all the legless jokes you could think of all in good sprit.

Within six weeks I was starting to get back on top, my hair was growing back my leg was gone I was soon to be getting my new leg and best of all no cancer it was gone I was in the clear and was able to put cancer in my past and get on with learning how to live with and artificial leg I adjusted really fast well you do when your young.

But just as I thought life was normal again I started to feel tired all the time and all ways fallen ill with tonsillitis. And so I was sent in to get my tonsils out but life took a very big dive after that I never recovered after having them out I just kept getting weaker and weaker so my mum rushed me to the hospital after I fainted at the top of the stairs.

When I got to Crumlin Hospital there was a waiting list of over four hours but once the girl behind the desk saw how I looked she said get that girl in to see the doctor now. After a blood test the doctor pulled me mum aside and said we don’t know how your daughter is concious, my blood was so low they knew the only answer was the cancer was back.

Only two days later my old doctor in and said we need to talk. That cant be good I told myself and it wasn’t but it wasn’t Ewing’s. It was leukaemia A.M.L that is one of the hardest to treat I was told there and then that it was not going to an easy ride it would be even harder then the first time.
They told my not to expect to get out of the hospital for the next year because the chemo was so strong but because I lived near to the hospital they would allow me out but they where right the most o would spend at home was 2 days and I would be back in with a temperature and need treatment.

They also told me that the best way to beat this leukaemia was to have a bone marrow transplant but we would have to find a match.
So after 6 months of chemo they tested my 3 sisters for a match my oldest sister came back negative then my little sisters came back negative again things didn’t look good but when my older sister Deborah’s came back she was a match they said we were almost a 100% match so after the chemo I got full body radiation and on the first of September 1998 I had my bone marrow transplant which went great at least something was going right,

After that I have just gotten better and better the transplant was a success. That was 7 years ago now and I haven’t looked back yeah you still will always have this little thing in the back of your head saying what if it came back. But you cant go on every day thinking like that it would drive you mad. And so while I do live my every day life with the effects of both cancers while they where hard and I mean HARD they have turned me in to the person I am today. I have over come the odds I’m sitting here writing this. I have sat my leaving cert and passed I reached my 18th birthday some thing lots of time we never thought we would see,
I have just completed one year of pre-nursing in a college in Dublin and a couple of months ago I was accept in to a leading university in London to study child nursing.

I hope that some day I will return to the ward in which I was treated but not as a patient but as a nurse to help the children who are going through cancer and the reason I want to do that is I believe that if It wasn’t for the help support of my nurses in both Crumlin hospital and Cappagh hospital I wouldn’t have got through half of what I did, So if them nurses did that for me having not gone through cancer them self’s what can I do for someone because I do know what their going through and I wont just be saying it I will really mean it because I was there my self and I can say to them look at me I have had the odds stacked against me more time then I care to remember but here I am today nursing in the very same place I was treated. That’s my hopes that I can do for other people.

And that’s my story if it where not for the amazing support I received form one of the greatest family I feel in the world I wouldn’t have made it so I want to thank them with all my heart and soul and to the doctors and nurses who never gave up on me all there great work has paid of and I thank them for that.
I hope you enjoyed my story

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