The Start Of Something New

Howdy! It's time for some more action!

Upon hearing the news of my Leukaemia relapse, I was instantly met with support and encouragement from all angles. This enabled me to keep a strong attitude, and still remain determined to beat this disease. I promised my friends and family (and now to you too) that "I will beat this bugger, even if I have to do it 100 times over".

The treatment plan was for me to start intensive chemo, with a bone-marrow transplant to take place in 4 months time. I was told that I am likely to be spending a lot of time in hospital, with little immune system, I am probably going to catch a lot of infections.

In my first stay during the new "R3" plan (the R means relapse) I had a drug which was bright blue. This made my pee go blue... It was like turning into an Avatar whenever I went to the toilet!

Whilst I was staying at GOSH, the doctors suggested that I had a look at a local hospital called UCLH (University College London Hospital). They said it had a specialist Teenage Cancer Unit, which means it is designed for people of my age, in my situation. I went to have a visit with my family to see what was on offer.

After viewing UCLH, I was very impressed by the facilities available for me, however, I did not want to instantly transfer across, as I needed time to come to terms with the fact that I had relapsed. It was too much news, too soon.

Today (23rd April 2010), I went to Great Ormond Street for another lumbar puncture, and whilst I was there I made a very important decision. I had taken my time to think about the choices available, and what was best suited for me. A doctor from UCLH came to the hospital to introduce herself and to reassure me about my transition. It felt right for me to change hospitals, and "Start Something New".

So, that was it. My last ever visit to Great Ormond Street Hospital as a patient. The mixture of emotions I felt was unreal. I was excited at the prospect of a hospital perfect for my needs, but sorry to say goodbye to the brilliant people at GOSH.

This is a personal message to the staff at Great Ormond Street Hospital, who saved my life, and cared for me over the last 3 years. Thank you from the bottom of my heart for everything. You have all been like family to me, and I will miss you greatly. GOSH will always have a place in my heart, and I have many memories I'll never forget. I will try to stay in contact as much as possible and I will come back and see you when I get the chance (couldn't get rid of me that easily, could ya?)

Thank you so much.

Next friday I will be staying at UCLH for the first time as a patient and having some more chemo. I will keep you posted on my progress.

Who knows what the next chapter holds?...

Andrew

:)

Thanks for the memories. (Me and Ray)

Life With Leukaemia Isn't Always Bad

Before I explain the title to this post, it's time for an update.

I am no longer taking the Morphine for my joint pains, and I am no longer using a wheelchair to get me from A to B. The joint pains seem to have gone (for now, hopefully forever... we can dream). I'm still the sexiest skinhead around, and I'm starting to get used to having a breeze against my scalp! I'm starting steroids today, so if I turn green and start smashing things to pieces... you know why, okay?

Sorry dad, my skinhead's better :)

Anyway, I shall explain the title to this post.
Since being diagnosed back in 2007, I have had some really nice things happen to me, some have been from the kindness of people's hearts. This blog post will be to tell you some of the great times I have had because of Leukaemia.
First of all, in September 2007, Manchester United kindly donated tickets for me, my brother and dad to go to watch the MASSIVE match at Old Trafford, where they gave host to Chelsea in a title deciding 90 minutes. We had brilliant seats, and to top the lot... Man U thrashed Chelsea in an impressive 2-0 win. We saw quality players like Ronaldo, Rooney, Vidic, Ferdinand, as well as the talented Chelsea team.
My family have been keen to raise money for charity since my diagnosis, but the first major event we did was the Hastings to Ashford bike ride, with my family members cycling alongside many Kent police officers. My dad organised this and I believe the total money raised was in excess of £4,000, every penny going to Children With Leukaemia. I wasn't fit to take part in the event, although I willingly spoke to local newspapers about my story, and acted as a photographer during the course of the event.
Family Fund, an amazing charity, kindly donated me a laptop, which was vital for my schoolwork, socialising with friends, and it is this very laptop that I am using now to write my blog for you. So I'm guessing we should be thanking Family Fund for my blog.
Clic Sargeant are another charity which has given my family plenty of reasons to be grateful. They provided my family with a much needed week-long holiday in Chichester. It was during a stressful time in my treatment, so the whole family was grateful to get away. During the course of the week, my family and I participated in tennis, archery, target shooting, football. So not only was this a welcomed week to relax, but a chance for us to interact with each other, which is often difficult when half of us are at home, and the rest are at hospital.
My family has had holidays abroad since my diagnosis too... and they have been spectacular! The first of my overseas travels was a holiday to a brilliant Greek Island called Kos. I went with my dad's side of the family, and we had a blast! It was a small island, but it had so much to offer. The history, food, views, temperature, it was all brilliant. Even the wasps over there were cool! THEY DIDN'T STING! (I have a bad record with wasps, I'm normally a walking target for them).
The next overseas visit was a trip to Mallorca with my mum's side of the family, funded by a group of Ashford-based firefighters called "Blue Watch". They did a long-distance run, whilst carrying a large wooden fire engine. Again, this proved to be a huge boost for my family, again, with plenty of stuff for us to do, and plenty of sunshine to go along with it.
A group of the most generous, kind hearted people you'll ever know: Alternative Hair. They are a group of talented hairdressers, who perform shows across the world to raise money for Leukaemia Research. The money they raised funded a trip to Disneyland Paris for my family, alongside many other families in a similar situation to mine. We had so much fun, in an environment where all the stress and worries just seem to disappear. When they say things like this gives you a magical feeling, they really aren't joking. During the trip to Paris, my brother and I took part in an interview for the next Alternative Hair fundraising appeal. It was the least we could do. They had put so much time and effort for our benefit, so a short interview seemed like little bother to us.
After talking about the travel side to Leukaemia, I think it's time I spoke about the next charity event. There was a Leukaemia Research Bikeathon being held at Lydden Race Circuit in Kent. Leukaemia Research asked if I was fit and willing to cycle a lap of the track, and to use the story in their newsletter. They said it would be brilliant if a Leukaemia sufferer was to take part, but that there was no pressure for me to do so. Then they mentioned that there would be a special guest at the event, Olympic Gold Medal winning cyclist Jamie Staff (winner of the team sprint, the team that set a new world record!) I jumped at the idea! He was such a great guy, he cycled round the track with me and my brother, telling us about the Olympics and just having a chat with us. I was so excited about the whole thing, I didn't complete 1 lap, but 4! It felt surreal, I was having a joke and a chat with an elite athlete, the sort of people I idolize. In the newsletter article HE DESCRIBED ME!! as an inspiration... I was in shock, for me it was the other way round!
Since hearing the news of my relapse, Manchester United decided to be absolutely brilliant once again. Honestly, I know that United are forever my team, and I'm not a glory hunter, they are just a brilliant club. They gave my dad, brother and I tickets to go to watch the Champions League clash between United and German titans Bayern Munich. You couldn't have picked a better match this season. We had stunning seats yet again, being sat in a similar place to where we was back in 2007. Manchester United won the match 3-2 (so I have never been to Old Trafford and watched us lose. I must be a lucky charm!). Unfortunately it wasn't enough for us to stay in the competition, but it didn't matter too much to me. The quality of the play was jaw-dropping, as you would expect in a match like that. Manchester United had given me a much needed lift after the deflating news of relapse. On the journey home I could barely talk, I had been singing and chanting so much during the match that I had strained my throat, but I felt so happy that I felt like I could tackle anything, never mind Leukaemia.

So, there you go, life's not all bad. Yes it is hard work, and very stressful at times, but the kindness and support of friends, family, and people across the world that have probably never met me, but still care... it makes things worth it.

I'll probably be continuing my story in my next post, so stay tuned.
Andrew
:)

My Leukaemia Story - Part 5

Hi guys! I'm back!
Sorry that I havent been able to continue my story sooner, but I have been rather poorly over the last few days. I have lost my hair (something to be expected with the chemo I am taking), and I have been having to use a wheelchair to go anywhere, as I have been sufferering with severe joint pain. I have been taking Morphine for it, so I'm away with the fairies most of the time. The joint pain is nothing to worry about though, its a common side-affect to a drug I am taking. Also, today I have noticed a massive improvement, so hopefully it will have completely gone within the next few days... but I'll keep you posted.
Before I say anything else I want to thank everybody who has been reading this blog. It means SO MUCH to me that people take an interest in what has happened over these last few years. I am extremely thankful to everybody who has been suggesting this site to their friends and families. Hopefully the rest of my story will be just as interesting as what you have read so far and will give you even more reason to spread the word.
Anyway, the moment you've probably been waiting for, its time to go back to this story of mine.
When Maintenance Therapy started, I had extremely high expectations. I had been told that it was much lower doses, so I would be feeling much better. I expected to feel well enough to do normal things, like school, playing football, seeing friends... normal stuff.
However, throughout the first few months I didn't really notice any difference. I think I was expecting too much too soon. I had been on high dose treatment for at least a year, so it was bound to take some time for my body to recover from the effects of it. But I became increasingly frustrated, because I wanted to feel normal, but I didnt. I still felt tired, sometimes sick, and my constant low blood counts served as a reminder that my body was still in a pretty weak state.
Things did get better, I started to get back to school, to see my friends. I was starting to be able to enjoy myself. I had started to achieve better in school again, I couldn't believe it. I remember handing in my first piece of english coursework, thinking that a C would be a great achievement for me. When the teacher handed me my work, and I opened the page not to a C, but to an A*... lets just say it was a miracle I didn't fly off the back of my chair! All the effort I had put in whilst I was feeling really ill, it was all worth it.
I started to go to football training, which was brilliant. I didn't go to play football with any intentions of getting in a team, I just love football, so I wanted to play. Some of my best friends went to training too, so it also gave me a chance to see my pals. I eventually managed to persuade my brother to go along too, so that was cool. When he did go, he enjoyed it... he was just affraid of getting shown up by my mega skills ;) .
I was having routine lumbar punctures every 3 months at GOSH (which was much better than once a week, like on the intensive treatment). Things were going well, I had been set a date for my treatment to finish. The end of it all. The moment I had been looking forward to for so long.
On the 5th March, it was time for another routine lumbar puncture, with my sights set on the finish line, it was one less hospital visit to worry about. When I had my procedure, I even told a joke as I was being knocked out. I woke up afterwards feeling well, I was relieved that it was out of the way. Later that day, my parents were called away to a room, by a doctor. I didnt know about it at the time, as I was having a drug which meant I had to be isolated for half an hour.
After my isolation, I was called into the room to join my parents with the doctor. I wasn't prepared for what I was about to be told. The look on my doctors face said it all. My leukaemia had relapsed (returned). They had found cells in my spinal fluid.
I had let my guard down completely, I was thinking I was near to the finish. I felt so well. I was playing football and doing well at school. I walked through the hospital feeling numb, even the nurses looked emotional. One of them came over and gave me the biggest hug ever. It was as though the 3 years I had spent fighting the disease had all been for nothing.
The next section to my story will be about how I came to terms with this news, and what it meant to my treatment plans.
Andrew
:)

My Leukaemia Story - Part 4

It is 5th of November 2007, firework night. I had gone into Great Ormond Street Hospital to start a trial therapy called "Protocol M". From my room in Lion Ward I could easily see the fireworks across London; what a sight.
A German doctor came into my room that evening to explain the course of my treatment. It was called "Protocol M" because it contained an extremely high dose of a drug called Methotrexate, hence the M. She said it was proving to be a huge success in Germany and in America, so they were beginning trials across the UK.
The next morning they began setting up the machine that would be infusing the drugs until they finally brought into the room a tube filled with yellow liquid. They put a black cover over the tube, explaining that the drug itself was light-sensitive. I was hooked up to the machine and the process began.
Within a minute of the treatment starting, I said "I have a bad feeling about this, it just doesn't feel right." I continued to feel slightly queezy, so I decided to shut my eyes and have a sleep.
I personally dont know what happened whilst I was asleep. But the exact detail is that my kidneys were shutting themselves down. I had suffered a massive alergic reaction to the Methotrexate (a very rare reaction), and things were looking bad.
I don't remember much of the next night and day, only waking up to vomit. I vaguely remember being rushed to have a kidney and liver scan to check the extent of the damage. I can clearly picture "Finding Nemo" being played on a DVD player above my bed. I was singing to myself "Just keep swimming"... quite appropriate, don't you think?
The heroic doctors on Lion Ward had a choice to make: either surgically fit a machine to do my kidneys' work for me, or ship in an antidote from overseas. They chose the antidote.
This antidote would save my life, undoing the effects of the lethal substance pulsing round my body. It sounds perfect, but there is a sting to the tale. This miracle antidote would have to be shipped from across Europe, and would cost no less than £60,000.
When the life saving syringe showed up to the hospital, it wasn't a moment too soon. Gemma, a nurse came into my room at about 2:00am... no pressure, just a £60,000 drug, and a patient in a pretty bad way to give it to.
She gave the drug, and within a matter of hours my body started to show signs of recovery. Gemma, and the doctors at Lion Ward, had saved my life. No other way of putting it.
After 2 weeks of letting my kidneys recover, I was sent home to start a very weak cycle of treatment. This was to allow my battered body to recover.
It was then back to the intensive stuff again, but no more Methotrexate, no chance mate... not after that!

After about 9 months of the intensive treatment I started "Maintenance Therapy". This was described as being a lot less intense, to let me get my life back.

That is the next section. Maintenance. I will describe what it was like, and how I managed to come to terms with getting more of my life back.

Still standing after "Protocol M"... and don't you forget it!
Andrew
:)
JUST KEEP SWIMMING!

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Glossary

Infusing - The process of pumping a drug/ product straight into a vein.
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EDIT

Here is a photo of me with Gemma, the nurse that gave me my antidote. (Taken in March 2010, I'm sure neither of us will forget what happened back in 2007)

My Leukaemia Story - Part 3

Still in Great Ormond Street Hospital, I started treatment. High dose steroids, taken alongside some even higher dose chemotherapy. Some of this high dose chemo was so powerful it even made my pee go bright red!! The steroids gave me a HUGE appetite, honestly, I was hungry all the time, nothing could fill me up. As fat fighters on 'Little Britain' would say, "I luuuuurve de cake!!"

After a few weeks of being in hospital, having doctors explain my treatment plan, and nurses make sure my chest was healing up ok (after the operation going so well, it didn't take long to heal), they said I could go home.

I was sent home with a large bag of tablets and a book describing the treatment plan, and for my blood results to be recorded in. They call it my "shared-care book" as it is used by Great Ormond Street Hospital as well as the community nurses and doctors in Ashford.

I was told to go back to GOSH once-a-week for Lumbar Punctures and Bone Marrow Tests, and so that the doctors could review my progress. Dr Webb said I was to be treated on Regimen B (which is like the medium strength chemo) for a few weeks, and that the doses could be lowered or raised, depending on how I responded to chemo.

I had gone home. What a feeling. Yes, I had been delivered some pretty hefty news, but I couldn't be more sure that I was in safe hands. I met my community nurse back in Ashford, Suzie Jamieson, a really lovely lady, and I'm sure the people that know her will agree. She would be coming to my house weekly to take some blood for testing, check that my Hickman line was working ok, and to sometimes give chemo.

After a few weeks of this cycle the doctors told me my dosages would be raised, as I had not yet hit remission. I was now on Regimen C... the hard stuff.

By October I had been for more visits to GOSH, and the news was starting to come back good. I was starting to realise all of the sickness was worth it when I heard the news that I had hit remission. That means that the cancer cells were no longer present in my bone marrow. The Orange-sized mass found in my chest had completely gone!

The doctors told me that the race was not finished yet though, as they wanted me to start another treatment cycle. One that they had been testing, as it was successful in America and Germany. This was called "Protocol M". It consisted of an extremely high dose of a particular drug, and was said to be very effective. I was told that I was to stay at GOSH whilst the treatment was running so the doctors could keep an eye on me. I signed up to the trial.
The doctors told me that "Protocol M" was to be starting on firework night on Lion Ward.

Protocol M is the next part to my story, but i'll give you a hint as to say there are plenty of fireworks.

Andrew

:)

P.S. I had the good ol' support of friends, family... and my lovely Morris cat

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Glossary

GOSH - Great Ormond Street Hospital

Lumbar Puncture - Where doctors surgically remove some of the fluid around your spine and brain, and inject chemo into the same area.

Regimen - A treatment plan. e.g. Regimen C is the highest dose treatment plan.

Community nurse - A local-based nurse that performs home visits for various purposes.

Remission - A state of which all cancer cells have been destroyed.

My Leukaemia Story - Part 2

We pick up my story at Great Ormond Street Hospital. I had just arrived in the back of an ambulance and was wheeled to Lion Ward. I remember being amazed by the the fact it was on the 6th floor.

When I arrived at the ward I was instantly greeted by my nurse, Helena, who showed me to my very own room (complete with en-suite bathroom and everything). She instantly reassured me that I was in safe hands, and couldnt do enough to help. After feeling tense and nervous, the conversation with her left me feeling very calm, I could tell that I was in the best place possible.

The next day, a group of doctors came into my room and began to explain the situation. They said that it was either a Lymphoma in my chest, or Acute Lymphoblastic Leukaemia. Apparently the mass found in my chest was around the size of an orange. A Hickman Line was to be surgically fitted.

A Hickman line is a tube that goes near my heart, with two pipes hanging out of my chest. It is designed so that I can have chemo and blood transfusions without needing constant injections.

While the doctors would be fitting my Line, they would also do a Bone Marrow test to determine whether it was Lymphoma or Leukaemia.

The next day I was having surgery. I have been told that the operation took about 4 hours, maybe longer.

When I woke up, my head was in agony... never had a headache like it. The nurse came into the recovery bay and dosed me up big style, using 2 different pain killers at least. Once the Morphine and Codeine had kicked in I felt well again, so they took me back to my room.

I remember sitting in my room that night, in darkness because of my headache, eating a McDonald's cheeseburger with my family. I think it is strange that I had just had surgery near MY HEART, yet I felt no discomfort AT ALL around my chest...good ol' pain-killers.

The next day the doctors came round with my diagnosis. Dr David Webb said to me that the Bone Marrow had shown up 98% Leukaemic cells...wow. He said that it was Acute Lymphoblastic Leukaemia (ALL), and that it is relatively common and pretty straight-forward to treat. He said that he would be my consultant, and the treatment typically lasts 3 years (a year longer than if I was a girl).

The chemotherapy would be intensive, and was planned to start straight away.

Tune in next time to find out what happens next.

Andrew

:)

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Glossary

Lymphoma - A type of cancerous tumour that forms on certain glands around your body. e.g. chest and neck.

Acute Lymphoblastic Leukaemia - A cancer of the blood-making cells in your bone marrow.

Chemo (Chemotherapy) - The use chemicals to destroy cancer cells.

Blood Transfusion - The process of putting donated blood into somebody else to make them feel better when their blood counts are low.

Bone Marrow Test (Aspirate) - When a small amount of Bone Marrow (found in most bones) is removed and tested.

CT Scan - A three-dimensional x-ray.