CLIC Sargent Abseil - 1st October 2011

Hi guys!
Thought I'd let you know about my recent adventures!
I'm back at school again - woop woop! and I'm doing full weeks of school now, which I'm really glad about :) I'm seeing mates more and going to the gym once a week to keep myself in shape :) My most recent visit to UCLH went really well, and I went to visit the ward (as it was around the 29th September I came out of hospital last year). It was really good to visit again. The nurses said that I look so well that I look like a different person every time I go to visit them.
On the 1st October I did an abseil for CLIC Sargent, as they did so much for me and my family during my time on treatment. A lot of the things in my "Life With Leukaemia Isn't Always Bad" post were due to CLIC Sargent, so when the abseil came about, I jumped at the chance to give something back.
The abseil was off of a 75ft building in Canterbury Christ Church University , and I said to my friends that if I raised enough money, I'd do it dressed as spiderman - and I did!
It was sooo much fun! I did it with some of my family and, I'd totally do it again, and I'm pretty sure most of them would agree.  My family as a team has raised over £700 from the abseil for CLIC Sargent, so we're really chuffed with the result :).
To finish off the post, here are some pics from the day:

1 year post-transplant - WITH A VIDEO!

Hi guys,

I thought I'd do something special for the 1 year celebration, so I decided to do a video!!

Hope you enjoy it!

Thanks,
Andy
:)

Watch This Space!

Hi guys,

Just thought I'd see what's going on :)

I'm now at 11 months post-transplant, so I thought I'd say hi, and tell you guys to pop back next month to celebrate the year!

Things are all going well... :)

I'm not going to say too much (that would kill the suspense), but I'll make it worth it for ya.

Cheers... and watch this space! 
Andrew
:)

"Make my way back home and learn to fly..."

WOAH! I haven't posted in AGES!

As far as hospital things go: s'all good :) I am only going every 3 weeks now (hopefully that will change next time I go) The doctors have said I'm perfectly fine to go into public spaces again! wooo. This means I am allowed back to school!! wooo!

I haven't been back just yet though, my school need to know about all the illnesses I'm not meant to be in contact with. So they have said they'd rather I didn't go back until they had a note from my docs about that (blah blah blah...).

It's been good though, going into public again. I have been to the cinema twice recently (which I haven't done for a while) I watched Gnomeo & Juliette and Paul ... Both were awesome!

I also have been doing sport again; doing weight training to re-build my obviously sexy body ;) haha! Also I recently played football with a few friends at a local field. We were a group of 5, and a group of about 8 people challenged us to a match. Obviously, we accepted... and coz we're so damn good we beat them by 3 goals. I also had a brief stint in goal, which I hadn't done for a while, because of the lines. I even made a really good reflex save! Although I felt the aches all over my body the day after, too much running around and diving about.

And lastly... saving the best till last, as always: I got my wish granted from Starlight!! (Brace yourselves)

My wish was to go see a Foo Fighters concert. Here's what happened:
We caught the high-speed train to London, from there we got a black cab to Park Plaza County Hall hotel. It was WELL nice! 

Me with Charlie at the hotel.

We then met with my Starlight wish organiser, Charlie (pictured), who was really nice. :) We then got a LIMO to Wembley Arena for the NME Big Gig.

On the way to Wembley, Charlie handed me an autograph book, and told me I would be meeting the Foo Fighters! She said we would get there early so that we could watch the sound check, and meet the band! So, I was mega excited by the time we got there.

It was amazing being the only people (apart from the bands and their management) inside this huge arena, listening to the bands play a couple of their songs. It was like a concert just for us!

The, Dave Grohl just casually walks down off of the stage, to the standing area, and looks at the stage. I was in shock... couldn't believe it was him! THEN he turns around and starts walking straight towards us and says "Hi, which one of you guys is Andrew?" ... I nearly fainted! He was really cool though, so down to earth, really nice. After talkin to me for a while he said he'd be back after their sound check with the rest of the band!

So after the check, the whole band came down, and Taylor Hawkins gave me the drumsticks he'd used during the sound check!! I got signatures,and photos too! They were really nice!

You'll never believe this bit. Dave casually says to us "How far have you guys come?" we said about 60 miles-ish. He follows it up with "I don't suppose you're busy tomorrow night?" no... "Ah cool. Why don't you guys come watch us at this small club in Camden. It only holds like 300 people?" OH MY GOD!!! we got invited to a private gig by the lead singer of the band!

After that surreal experience, the bands tour manager, Gus, handed us VIP passes and told us to go to the stage just before the Foos went on, and they'd make sure we were ON STAGE watching them perform!

The concert was totally awesome! And to top it all off, Gus invited me into their dressing room after to say goodbye!! I have a few pictures to show how awesome it was:



Taylor giving me his USED drumsticks



Such a cool, down to earth band



Our view, from onstage.

Dave Grohl rocking Wembley

In their dressing room after - funny guys

At the small venue in Camden

How cool was that?! 

My next post probably won't top that! but until next time, cya!

Andrew

:) 

Home at last

Howdy
I just thought I'd keep you all entertained with another update. My last post finished with me going home after my long and intense transplant. This post will continue from that point and hopefully get us back up to date with how things are now.
The car journey home was weird. I was excited about seeing friends and family I hadn't seen in a long time. It also felt weird seeing places I recognised and when I arrived back in Ashford some areas had changed a bit e.g. building sites were looking like buildings now. That was weird. It sounds really strange, but I also think it felt a little bit odd leaving the hospital; I had been in there under their care for a quarter of a year, so I suppose I felt in a bit of a comfort zone there after so long.
When I finally arrived back at my house I was greeted by my family, who had been waiting at my house for when I arrived. Being at home again took a little bit of getting used to, but it was AMAZING to finally be sitting at home with my family, with my loyal cat curled up next to me again.
I would be going to UCLH twice a week for blood tests and to see if any of my doses for the tablets I was (and still am) taking needed changing. I kept my PICC line in because the doctors said that I would probably need blood transfusions or platelets twice a week.
On my first clinic appointment my doctors were very pleased with my progress, I didn't need a transfusion as my blood counts were good. After a few appointments of my bloods staying good and not needing transfusions it was decided that my PICC line would be taken out, as it wasn't needed, and my appointments would only be once per week.
The PICC line removal was supposed to take 5 minutes, just give it a tug and it would come out (obviously, in a bit more of a controlled way). BUT, when do I ever just let things be simple? In total, it took about an hour and a half to get the line out of my arm!! Apparently my veins were contracting,which was basically holding onto the line, stopping it from sliding out of my arm. From then on, any blood tests would be done with needles.
Now I am only going once evey fortnight, as my blood counts have been so good that I havent needed any transfusions. I have got a bit of graft versus host disease, which means my new cells are recognising my body as foreign, but thats treatable. Also the doctors do like GVHD because it also fights Leukaemia. Good stuff. I also had a blood test to see what my blood DNA is like, and its results showed that my blood is identical to that of my American donor now. This means my blood type has probably changed too, WOOP!
There is a type of white blood cell called a Lymphocyte, and apparently my Lymphocyte count is amazing for somebody in my situation. My doctor told me that if I had had a standard bone-marrow transplant, it could take up to a year to get that sort of Lymphocyte count. This means that my immune recovery is going pretty well. Double WOOP!
Im not allowed to go to school or to busy places because my immune system isn't at full strength yet and won't be for a while yet. I did manage to go to school briefly to collect an award for perseverance, which was cool. I saw a few of my mates while I was there too, always a bonus.

That's all for now... I'll have more updates soon
Andrew
:)

Transplant - The Finale

Hi again, time to continue with this story.
Basically, all we had to do now was to wait. Wait for the new cells to take to my body, settle in my bone marrow and start working. I had started Immuno-suppressants, which were to stop my own immune system from rejecting the new cells and vice versa. There were a load of other medications too, to stop me from getting ill, as my immune system was flat, and it would be a while before the new cells would start making neutraphils (to fight infection).
I did get ill at times though, including extremely high temperatures, sometimes I even had whats called "Rigors" (A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored, as it is often a marker for significant and sometimes serious infections). The rigors were nasty, I couldn't stop myself from shaking violently from head to toe, which made me feel pretty out of control and uncomfortable.
I was having blood transfusions regularly, and was having all sorts of scans, CT scans, Ultrasound scans of different organs to check for infection because of the temperatures. They did eventually find the problem and things settled down. By now my apetite had completely gone, and I was relying on my feeding tube to provide my nutrition.
Usually, people get neutraphils by around Day +28, and my 16th birthday fell on Day +27. I was hoping that I might have a neutraphil for a special birthday present. That didn't happen. In fact, I didn't even have half a neutraphil by Day +50! This was a concern, not only for me and my family, but for the doctors too. It was starting to look like a second transplant was pretty imminent. Luckily Rachel Hough, my doctor, and a leading expert in cord cell transplants, decided to speak to the man that trained her. She spoke to John Wagner, the man who instigated the first ever cord cell transplant over in America. They decided that they should persist with my current cells, stopped one of my drugs, and doubled a drug called GCSF (which stimulates the body and the new cells into producing white blood cells).
Day +52 - guess how many neutraphils? ... 1.94! Dr Wagner and Dr Hough had managed to kick my lazy-arse cells into shape! From then on my cells gradually increased, and I started to get visitors and was starting to feel better. After about 55 days of being confined to my room, I was allowed out to explore the ward.
I did spike temperatures again, but this time the doctors couldn't find the cause. Eventually, after scanning and investigating every possibility, they decided to remove my hickman line. Its very common for the lines to get infected, so it had to go. After 3 years of loyal service, on Day +60, they took him away (after a struggle to separate him from my veins). But there is some good news. They let me keep some of it as a souvenir!


Dr John E. Wagner, me (with newly inserted PICC line in my arm)
and Dr Rachel Hough. I have so much to thank these two for.



Day +73 Dr John Wagner was visiting the UK to give lectures and said that he really wanted to meet me. So after having a new PICC line inserted into my arm to replace the old faithful hickman, John came to the ward and visited me. I got to meet the man who helped save my transplant, and he had done so all the way over in America. It was a real honour to meet him.
Day +74 I FINALLY CAME HOME! It felt so great to be home after 12 weeks of being in for transplant (if you include the conditioning and stuff)

My next post will be about life at home and what happens next (we're pretty much up to date now)

thanks guys

Andrew

:)

Transplant - Day 0

Hi Guys!!
Before I start this post I just want to talk about the new features on my blog. The first feature is a globe at the side of the page showing where the viewers of my blog are located, its quite interesting. The slight problem is that it will start counting from today, not from the start of my blog. I have actually had over 500 views now, ranging from the UK to America and Australia (hello to my overseas readers).
The next new feature is a share option at the bottom of each post. This will allow you to share links to posts you like through Twitter, Facebook, E-mail, Blogger and Google Buzz. So please dont forget to keep spreading the word.
Time for me to explain what "Day 0" is - Day 0 is transplant day, the day where I recieve my new cells. The day after will be called Day +1, the day after that will be +2 and so on. I just thought I'd explain that so you have a rough idea of the timescale in this post.
Day 0 came and the cells were in the hospital, after travelling from America and The Czech Republic. I would be having 2 bags of cells from the Czech umbilical cords, as they were stored differently from the Americans, who only had 1 bag. The procedure itself was fairly easy for me, but the nurses performing it had to be very careful. The cells were stored in liquid nitrogen ( I think, it was like -140 degrees) to prevent them from dying/ being damaged. The nurses had to grab the cells with thermal gloves and then place them into a bath type container which would defrost them.
Once defrosted the cells were ready to go. Each bag was put up individually and was allowed to drip into me through my line (as mentioned in earlier posts) just like a blood transfusion really! Each bag lasted about 20 minutes, and the nurses performed regular observations to make sure my sexy self wasnt having any dodgy reactions (as I have a record for that sorta thing now!). The whole transplant took about an hour, no reactions, and the most dramatic thing about the whole thing was that I managed to thrash my dad at FIFA whilst the transplant was happening (playing as none other than the Czech Republic).


Me, Laura and Katie - The nurses that performed my transplant.

 You can see a tube running along my face in the picture, this is a feeding tube so that I was still fed even when I was too ill to eat myself.
Also, just thought I might add this bit, for a few days after the transplant I smelled of sweetcorn, although I personally couldnt smell it. There is a good reason for this. The cells were stored with a preservative, which is excreted through the pores as sweat. So, basically, my b.o. was sweetcorn-ish for a few days.
The next few days were very rough: I felt tired, sick, my stomach hurt, I was peeing out blood at one point and thats all I can really remember as I was sleeping for most of it.

I'm gunna leave it there for now, as there is still quite a lot to say. I dont exactly wanna blab it all out now and ruin the suspense do I?

cheers guys
Andy
:)