The Aplastic Anaemia Discovery

My family and I were just coming to terms with the fact that I’d recently been diagnosed with cancer when, on the 5th April 2010, eight days after my diagnosis, a consultant took myself and my dad into a consulting room.

“We’ve made a mistake” he said, “we’ve studied your test results and they show that your leukaemia diagnosis was incorrect”. I didn’t know whether to smile or cry and I think that after living with the knowledge that his son had cancer for over a week that my dad was on the brink of punching the doctor after the way that he announced that they’d merely made a mistake.

He continued, “although your condition isn’t cancerous, it’s still serious, if not worse”. My face dropped and I looked to my dad for reassurance. “We believe that you’re suffering with a condition called aplastic anaemia which affects one in 500,000 children”. Because the condition is so rare they couldn’t answer my simple questions like “Why?” simply because there hadn’t been enough research.

Aplastic anaemia is a blood disorder that is widely unknown by many although it is as common as some forms as leukaemia, hence my original diagnosis, and can often be just as devastating. It prevents the bone marrow from reproducing blood cells and although in some cases the bone marrow can quickly recover itself, the severity of my diagnosis meant that I was to be kept alive by weekly blood transfusions.

Shortly after my new diagnosis I was discharged from Addenbrooke’s Hospital in Cambridge and looked after at my local hospital where sometimes I could stay for days or even weeks and at other times could go for a few weeks without having to stay overnight. I still had to go for regular appointments with my consultant in Cambridge, though, who informed me that the only ‘cure’ for aplastic anaemia would be to have a bone marrow transplant however there was an alternative treatment that they would try first and that I’d be coming back for a long stay in complete isolation shortly.

Thank you so much for such a great response to my last blog post. I’m writing a different part of my story every Sunday – last week was part one where I was diagnosed with leukaemia. Check back next week for another part of my story!

Being Diagnosed With Leukaemia

27th March 2009 – It was a normal Friday, I was about to go to school but for the last few weeks there had been many occurrences of me feeling unwell and after countless trips to the doctors, who couldn’t find “anything wrong”, I felt like I wasn’t being taken seriously. The day before, my nose bled continuously for an hour and on this day I woke up with blurred vision – I simply had lost all clarity in my sight and couldn’t focus at all. Regardless, I went to school where the nose bleeds started again almost immediately. By the time I had to go to my second lesson of the day, I’d lost so much blood and my teacher (who now tells me that I looked like I was about to drop down dead on her classroom floor) told me that I should go straight home.

My dad got the afternoon off of work and took me home and booked me an emergency appointment at the doctors. With my visual symptoms we thought that maybe I just needed to get glasses – we would never have imagined what was to come.

The GP took one look at me and called the children’s ward at my local hospital to tell them to expect me and sent us on our way. I was petrified, I’d never been in hospital myself and when they told me I had to have a blood test, I screamed with fear. A doctor took my dad to one side and told him that he thought something was very wrong with me but he wouldn’t know what until the results of my test came back a few hours later. Dad phoned all of our immediate family and within an hour I was surrounded by my relatives.

At around 10pm the doctor returned with the results doubled with a nervous, concerned face and told me that my three main blood cell types (red, white and platelets) were virtually non-existent, that I’d have to stay in overnight to have a blood transfusion and that I’d be transferred by ambulance to a hospital an hour away which, unbeknownst to me, is well renowned for it’s cancer research. Being a naive 11 year old I just thought that maybe the local hospital were understaffed or didn’t have enough beds.

Still smiling – just about!

Dad returned to the hospital the next morning armed with clothes, toiletries, everything we would need for our hospital stay and we set off in an ambulance to Addenbrookes Hospital in Cambridge. As soon as we got there we were surrounded by consultants from every department, some of whom rushed in on their days off, very concerned, after hearing my prognosis. That day is a bit of a blur, I can’t remember it too well because I think the likeliness is that I pretended that it wasn’t happening. The next day, all of my family returned to the hospital. With me were my parents, grandparents, aunts, uncles and siblings who were all taken into a room to speak to a consultant who then came to speak to me. He told me I had leukaemia – cancer of the blood. That moment shattered me as a person – everyone went outside and left me and my sister to have a moment. I tried to stay calm but the moment I made eye contact with her I burst into tears and said five words I never thought I’d have to say – “am I going to die?”.

My sister went with me to have a CT scan of my brain where we discovered that my vision was blurred because I had bleeding behind my eyes due to the lack of platelets in my blood. That afternoon I had an operation to have a hickman line, a plastic tube which goes straight to the central artery, fitted so I could receive treatment directly into my blood stream without the need for needles.

These two days, the start of my long journey, definitely won’t be forgotten quickly!

Every Sunday I’m going to update this blog with another part of my story. Watch this space for the next part – where I discover the doctors had made a mistake.

My British 10k Experience

On Sunday, just five months after getting the ‘all clear’ from the blood disorder aplastic anaemia I defied the odds and finished my first event – the British 10k London Run. As I said in a previous post, me and one of my best friends Anna decided to run in this event just 12 weeks ago to raise money for the charity Teens Unite Fighting Cancer who have been a huge support to me through my treatment and beyond.

I stayed with Anna the night before the 10k and we filled up on carbs and attempted to have a good nights sleep although admittedly we were very nervous for the next day. It was 5:30am and I turned around to turn off my alarm – I couldn’t remember ever being awake that early for anything, with the exception of my short lived “I’m going to train every morning at 5:30″ phase! It was so early that the hot water hadn’t even turned on so after a quick cold shower which definitely woke me up, some porridge and a delirious pep talk we set off to the capital.

After a few short tube journeys we were there! If you look on the events Facebook page it’s flooded with complaints about the organisation of the event and I do agree with the majority of them but we had a really good time so I’m not going to complain too much but my first complaint has to be the lack of stewards pre-race. Our race packs explicitly said the only way to get to the start on Piccadilly would be with stewards, leaving from the baggage drops (despite us not having any bags to drop). It turns out that this was a false claim and people were just heading straight for the start! Never mind – only a minor issue, we did have to go slightly out of our way though!

When we eventually got to the start line we were left to wait for 45 minutes cooking in the heat while we waited for the washed up ‘pop star’ Katrina (no waves) to perform. We weren’t too worried about this but I can see why people were – delaying the start of the race by nearly an hour when we knew we wouldn’t cross the start line for up to half an hour after the race started was a bit of a pain, especially considering it was very hot and dehydration was already starting to kick in. The first water station wasn’t until 3k so by the time I got a bottle of water I drank it like a fish!

These were only minor gripes though and we enjoyed soaking up the atmosphere (and sun rays!) around the course.

I’d spoken to my dad before we started who said he was waiting for us outside Big Ben which was around the 7k mark. It was so lovely to see him and I immediately ran over to him, gave him a quick hug and burst into tears which I quickly snapped out of when I saw professional photographers! I’m always one for a photo opportunity! After we ran back past Big Ben we could see the finish line – ‘Great!’ I thought. Wrong! There was still another kilometer to run and I was having some serious chafing issues (lovely) – but that’s another post! I hobbled to the 400m point and one last boost from Anna’s family gave me enough energy for a sprint finish!

I finished my first 10k in 1 hour 20 minutes and 2 seconds – with no previous running experience, in 30 degree heat and just five months after getting the ‘all clear’.

Not too bad for a Sunday morning!

British 10K London Run

After a glass of Lambrini five weeks ago, I decided to challenge myself and signed up to run the British 10K in London in July to raise money for the fabulous charity Teens Unite. Anyone that knows me will know that I think of myself as the next Usain Bolt but back on planet Earth, the furthest I’ve ever ran is the Sport Relief Mile in 2010 and even then I had to sit down but I’ve really surprised myself and managed to stick to my training plan religiously including training before school at 5am – believe it or not!

Obligatory training Instagram selfie

Me and my best friend Anna decided to run for Teens Unite in celebration of me receiving the all clear from the rare blood disorder aplastic anaemia to thank the charity for their hard work and invaluable support they’ve given me through my illness.

We’re hoping to raise lots of money for this great charity and would appreciate any donations no matter how small! You can read about the charity, my story and donate on our JustGiving page.

Keep your eyes on my blog as I’ll be posting regular training updates in the run up to the event!

JustGiving - Sponsor me now!

Where do I start?

I have no idea what to write today. Like I said in my short post yesterday, I came out of hospital. I was in for 8 days – not too bad. This time around I made some great friends and we had a good laugh. They say laughter is the best medicine 😀

I was back in because my CMV virus came back. They didn’t use the same treatment as before because it made me more ill.

I don’t know if I’ve mentioned this before, but my ward is a Teenage Cancer Trust ward. My friend, Pip, who I lost contact with for a few years, is raising money for them by giving up chocolate and sweets until Christmas Eve. She has a target of £200 but she is hoping to raise as much as she can! Why don’t you sponsor her? Every penny counts, plus it’s a good cause!

You’re ignorant

I have just got back from my usual Monday appointment in London. The car came to pick us up just after 8am and we got there at 10, which is quite good.

I had to go for a blood test before I went to see the doctor and the results of that were good. My platelets are just over 180 and last week they were 170, so I am going up about 10 a week, which is brilliant considering I only had 1 when I was diagnosed 18 months ago! hehe

On our way to the other building where the appointment was, we went to hand in my prescription. The lady said the waiting time was 45 minutes so we said we would come and collect the medicines after we’d been to the other building. We came back after about that time and we knew my prescription was ready because we were number 777 in the queue and the screen said 785 or something. When we went to the desk there was a lady standing before us and she was very rude to the staff. Basically, it had just gone over 45 minutes and she was saying, “Oh – you said it would be ready in 45 minutes and I’ve been waiting here for ages! How much longer will it be?!” and just generally being rude to the woman serving her. The whole waiting area could hear her! I don’t suppose she thought for one minute about everyone else that was waiting. I mean, there must of been at least 20 people there!

To cut a long story short, they gave me the wrong tablets (the massive ones that no one could ever swallow) so we had to wait another 45 minutes! :no:

I had to go for my Pentamidine Nebulizer while we wated. What it basically is, is a drug that you have to inhale that makes sure you dont get and bugs or viruses in your lungs. You have to be in a room by yourself (or sometimes another person is having the drug in there) as the nurses aren’t allowed to be near the drug as it can harm women or something like that. I don’t know, ask a doctor. It’s in 2 parts, you have this other drug to open your lungs which takes about 5 minutes and then the Pentamidine which takes half an hour. It tastes a bit funny but it’s not so bad, plus I only have to have it once a month.

I booked my transport for next week while I was waiting to go home and it is actually the most annoying thing getting the man on the end of the phone to sort it out. I said, “Hello, can I book some transport for Monday please?” so he asked me for my hospital number and then he asked me what day I wanted to go to the hospital. Didn’t you hear me the first time?! Near the end of the conversation he asked who he was speaking to so I obviously said, “Elliot Deady” and he was like, “Yes I know that but who I am speaking to?!” so I said again. After about 3 attempts he realised it was me on the end of the phone and not my dad or someone phoning for me.

Oh, and I bought some new Vans on eBay. They were £20 and for the Teenage Cancer Trust. (Y)

Hello, again.

So shortly after I opened my blog it decided it wanted to disappear off the internet with no warning. I got a new name and set up my blog on here, but I didn’t really like the old name anyway.

I got home fine on Wednesday but it turned out I had to go back into hospital on Friday. They said we would only be there 2 days but we ended up there for over a week! :( Never mind.

While I was in hospital I had to have my hickman line (tube which you can take blood and give drugs through) taken out as it had an infection. It’s really weird because I’m so used to having it! I’m going back up for my clinic appointment tomorrow where I will have a new line called a PICC fitted. I’ll be awake but it shouldn’t be too bad.

The car is coming to pick us up at around 8 tomorrow morning x_x That means an early night and early start!

I also decided that I wanted to keep all my old blog posts from when I was first ill, so I have imported them. Go have a look! :aa:

It’s been 53 days!

I’ve been in hospital for 53 days now and I am finally going home! I have to wait until 6 to leave, apparently, as they booked later transport so there is plenty of time to get my medication ready!

I’ve still got quite a bit to do. I’ve got to pack my suitcase, get all my DVDs and things ready, do a bit of tidying up and get changed! I’m really hungry too! Maybe I can convince my dad to take me out for lunch 😛

Everyone has been asking me what the first thing I do when I get home will be and the honest answer is I don’t know. I’ll probably just sit on the sofa and watch telly.

At last, I can go home and start to lead a normal life again!