12/09/2010 The Big Horrible Bag

This week was the start of my new regime or block.

This means that this week I will have four days of chemotherapy at Norfolk and Norwich.
Dad took me in on Tuesday and we were in for around twelve hours, not so bad, but you don't have to put up with Dad's terrible jokes...at least I thrashed him on the PS2! ;)

School has been good this week as I have been able to concentrate as well as actually finish my work during class. Steroids are good for something then!

I went to watch my dad play his second game of Rugby this season against Dereham. I'm sure he tried hard, but Watton got totally spanked, I think that was more to do with Dereham being a huge pile of cheaters.....!

Joss's Mum Peny came over for dinner on Saturday and Mum made an awesome Italian puff pastry thing, really tasty.

On Sunday Mum and Dad took us swimming in Thetford, which was awesome because I had had a 1"  needle stuck in me all week and this is the first time in weeks that I have been able to shower and enjoy a swim.

Mum treated us all to lunch at The Hungry Horse and then we spent the rest of the day spazzed out at home.

See ya soon.

05/09/2010 Duxford

Hello all,

A fairly eventful week last week as my chest opened up where my Port Catheter had been stitched in!

Soon had it all stitched back together again though.
Looking forward to school starting next week as I am bored to tears.
I should be allowed to do half days as my regime has changed again which means that I will need chemo on the ward on a Tuesday, which takes all day and then I need more chemo on a Wed/Thurs/Friday.
Mum and Dad took me and Dylan to Duxford to the Imperial War Museum to see the Battle of Britain 70th Anniversary Airshow.
I saw some amazing aircraft and would love to be able to fly when I am older.
It was a bit of a long day but it was loads of fun.
I am off to school on Monday and I can't wait to see joss and all my other friends.

Sunday 29th August 2010. Cathy arrives

On Tuesday I had my Hickman line replaced with something called a PortaCatheter or Port for short.
My port is under my skin on my chest which means that eventually I will be allowed to go swimming, which is brilliant.

My steroids are being ramped down this week and I will soon be off them, which means I will start to return to a normal weight, which is cool because I am getting a bit round.

Not much else going on this week, except that Mum and Dad are really trying hard to get a new house for us all to move into. We just need a bit more space and a garden would be nice.

Oh I went round to my best mate Joss' house last night and his Mum, Penny, cooked us all a huge bowl of spaghetti with garlic bread which was fantastic. I like spending time round at Joss' as he always makes me laugh loads.

See you next weekend all.

Sunday 22nd August

Well it's been an eventful few days.
I have found out that Angels really exist, in the form of Mr Andy Blake and Mr John Aspinall.
These two generous men have bought me a brand new wheelchair from a compay in Holland. How kind is that. I have never even met either of them.

Mum and Dad are on a mission to get us all moved into a bigger house because our little terrace place isn't quite big enough. The main reason being that I can't walk as well as I could before chemo and I am finding it very difficult to walk up and down stairs. So some time in the future I am going to need a downstairs bedroom and a few aids around the house to help me do stuff for myself.

Dad has left his job to help with the extra work and Mum is busy getting stuff sorted for me with Doctors and Nurses and returning to School in September.

Went in for my check up on Friday and when the nurse flushed my Hickman line it leaked everywhere. A bit weird but I wasn't worried, until a nurse said that she had never seen that before!

After an x-ray confirmed that my line was coming out I had to wait and see if I was going to have to have another stay in hospita for surgery to replace the line.
Poor old Dad had said his goodbyes and was taking Dylan home when Mum rang him to say that I would be able to come home today and would be going into surgery next Tuesday. Luckily he was still in the car park so no dramas.

I am having somethng called a Port put into mychest next week.
This is an implant put under my skin which is a much better solution because it means that I can  at least o swimming.

We all went to Pedros in Norwich on Saturday and had an awesome Mexican meal. I had a huuuuuuuuuuuuuuuuuuuge pile of tortillas with sizzling beef. An adult portion with an extra tortilla and I managed pudding. Bearing in mind that this was less than three hours after destroying an epic bowl of pasta.

Dad drank hot sauce and we all wore Sombreros which was a giggle.
When we finished we all went for a walk into Chapelfield mall. My favourite shop was the Apple store, Dad said that it just served to remind him of exactly how much cool stuff that he DOES NOT have. I think he fell in love with the big iMacs.

We came home and watched Anchorman, it never gets old!
See y'all next week.
Peace

Saturday 14th August

I spiked a bit of a temperature today so Mum rang the Norfolk and Norwich hospital. They wanted me to go in just in case.
All was well and in future I will only need to call in when my temperature goes above 38 degrees.

I am going to do weekly blogs from now on because it is a bit of a drag having to sit down and write about nothing at all.

See you all in a week.

Friday 13th August

Even less to report today.
Getting used to having my freedom from hospital was a mistake as I am back in today with Dad for one of my two weekly check ups.
The Doc came back with my Bone Marrow biopsy results and was shocked to find out just how well I am doing.
My Leukaemic cell count is now below 6% which, considering 25% is great, is pretty astounding.
I can't wait for my MRD (Minimum Residual Disease) results.
Dad bought me a MacDonalds on the way home and we ate it in a layby...classy.
See ya.

Thursday 12th August

Not much to report guys.
Took a drive up to the Rugby pitch today to say hi to my team mates and coaches.
Everyone is surprised to see how well I am doing. They are all looking forward to seeing me back on the pitch.
Mum took me round to Joss' house and his Mum Penny made me a ruck of pasta and meatballs.
LUSH.
Dad came back with Joss fresh from training and we sat around chatting for a bit.

Wednesday 11th August

"I ain't goin' in no wheelchair fool!"

I had to go and collect a wheelchair from the Red Cross in Norwich today.
It wasn't exactly dripping in carbon fibre and aluminium, try and imagine something that look like it was chiselled out of a single piece of Iron!

I took my new chair for a test drive via the Vue Cinema in the Castle Mall to watch the A-Team.
Loads of guns, car chases and explosions....awesome. I love it when a plan comes together.

Tuesday 10th August: Home Time.

I'M FREEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE

Today was a bit of a drag because despite being told that I am going home I still had to wait for a huge bag of drugs to be delivered as well as a load of milkshakes.
The blog entries get a bit thin from here on in because I will be at home, so I won't be bored out of my tree for so much of the day!

It was great being home and even better to see my dog Ozzy, I think he missed me more than he lets on.

Day 11: 9th August. Still in the Big House!

I have been starving since midnight and it is now 2pm! I could eat a scabby horse!!!
My blood sugar levels have crashed (shocker) and now I have a place in theatre. Silly buggers put me on the emergency list, so I am up against really serious surgery for my little ole lumbar puncture.
Mum and Dad took me into theatre and watched as I was knocked out.
When I woke up in recovery I felt ok, especially when I saw the size of the bag of crisps that Dad walked in with. I monstered those crips in five minutes flat as guess what........I was starving!
Mum and Dad insisted on arsing around with all the medical equipment. Mum soon stopped when the monitor failed to register her heart rate. Lol.
I felt a bit funny when I got back to the ward so I had a nap and drifted off for a few hours.
When I woke up I got a lovely present....a big bag of Chemotherapy and some anti-sickness drugs!
Watched Green Zone with Mum and Dad and then Dad went home. I swear he only turns up for the food and films ;)
My drip finished at 6pm and I was still having to chase nurses around to get it taken out at midnight.
Yet again starving hungry so I got a nurse to make me a cheese toastie and a couple of baby belles.
My red cell count was low so I will have to have a blood transfusion tomorrow, joy!
Chemo is  making me feel funny, and not funny ha ha either. One minute I feel dizzy and sweaty and then I am cold and shivery.
Even worse is the fact that two days ago I loved pepperamis and now I can't stand the sight of them.
My back is hurting a bit from where I had my bone marrow biopsy.

Days 9&10 Sat/Sun 7th/8th August

Not a lot to shout about on the medical front, all my levels are ok which is a result considering.
All those chuffin milkshakes have paid off as my weight is now going the right way. (Hamster cheeks here I come!)
My Aunty Gemma, Nana Rosie and Grandad Steve came over from Telford this weekend.
Aunty Gemma has bought me a quartz pendant to wear  and a big lump of white quartz which is meant to be good for my health. I picked up the quartz and it was cold but then when I picked it up a few minutes later it was hot!
Aunty Gemma is into crystal healing as well as Raiki and all sorts of other stuff. She says that she has been distance healing for me. I think it is helping because despite everything I feel great.
The three of them couldn't stay long but they are coming back in the morning (Sunday.)
Sunday:
Uncle Ian came today as well as the West Midlands posse, which was great because i hadn't seen him for ages.
Aunty Gemma did some crystal dowsing which was awesome, she answered all sorts of questions.
When Nana Rosie, Grandad Steve and Aunty Gemma left, they took Dylan with them as we was having a bit of a holiday, I'm going to miss him.
Dad is going to stay over Monday and Tuesday night, maybe at Acorn House.
I cannot stop eating today. I could sink a battleship with what I have put away so far and I am still hungry. Good job this ward comes with its own chef!

Day 8 - White cell too high and now they're too low....can't win!

Doctors came round today to tell me that my WBC is now 0.8, all the way down from 287! I thought that was great but apparently they need to be 4-10 or my immune system won't work...rubbish!

I'm neutopic, I think thats what its called, means that my neurofils or something are below 1 and i'm very prone to infection so no one ill can go near me and if I get a temperature then I'll be straight on IV anti biotics.

A good thing was though that they told me I might be going home tuesday, as long as I keep up the good work.
They also told me that my hair will probably fall out in a few weeks....thats just great, its taken me long enough to grow the three pubes I have and now they're gonna fall out! Well at least dad will have nothing to pull out of the back of my neck when we fight!

I'm getting a bit fed up of mum and the nurses going on at me about not drinking...just wish they'd leave me alone!

Mum and me watched Zombieland and Team America but had to turn it down when they were swearing and shouting durkha durkha! It made me laugh loads though.
The nurse came in while we were watching it and I fell asleep while she talked to mum cos it was just so boring and I've heard it all before.

I feel quite tired today and I'm feeling very angry at my mum. It's probably the steroids and mum understands but that on top of my tourettes is just a nightmare!

I got well hungry at about 8pm so mum took me to the restaurant area and I really wanted some hash browns but it obviously wasn't breakfast. The bloke asked me what I wanted and I said that I really wanted some hash browns so he went and made me some especially! They were really nice!
Being ill isn't so bad...people give you what you want!

While I was waiting for mum to run me a bath I took my time eating my hash browns, I wish I'd asked for more!

Had a nice bath but don't like mum having to wash me cos I can't get George wet...can't shower for a year!

Had blood sugars tested and it was quite high at 15.4, I blame mum cos she made me drink over a litre of crusha milkshake - bad mother! lol

It's now 10pm and i'm hungry again so I asked the nurse to get me some food and I got a tuna mayo roll, it's really nice! Want some more hash browns though!

I could get used to this.....

Day 7 - Boobies, Dominoes and an angel

I've had my drip taken away today so no more R2D2, well for a little while anyway.
It's so nice to be without them cos they're really annoying and I kept stubbing my toe.
The only thing is I now have to drink 2litres of water a day....mum's having to measure and write down everything I'm eating and drinking.

I have to have a blood prick test thing in my finger every 6 hours to check my blood sugar level as some of the medicines can make me diabetic.

Mummy, Nana and Dylan came over today, brought me Call of duty! YAAAAY!
Mum also brought me some films, team america and zombieland.

Mums friends Polly came over and brought me a cake, not just any cake but a massive boobie cake! We got some funny looks in the ward! lol

Unfortunately the nipples fell off!

Before the nipples fell off lol

I think I must have toxic wee cos Polly put her iphone next to a pot of my wee and it just died! It only came back on when she was away from the hospital.....strange.

A lady came from Clic Sargeant, very helpful to mummy but I was very bored talking to her so I just killed some Zombies until she left.

Someone had brought a load of pizza from Dominoes on the ward as it was a little boys 1st birthday, I had two slices of ham and pineapple pizza, it was yummy!

I keep worrying about little Morgan, he's been moved to an isolation room and I've moved beds AGAIN. I hope he's ok cos he's so cool.

Mum's good friend Wendy came all the way from Windsor in the evening to give me an angel which meant a lot to her. It was nice to see mum talking about normal stuff and she was happy to see her friend as she hadn't seen her for about 8 years!

Day 6: Get skinny with it.

I have dropped a bit of weight so dad is taking every chance he gets to get chocolate and crisps into me as well as milkshakes.

I feel ok and everyone keeps saying how good I look!

Had a walk to BK today and dad bought me an icecream..

Dad went to Sainsburys and bought me some cool DVDs and a game for my PS3.
I got Solomon Kane, Green Zone and Clash Of The Titans and I got Flashpoint for the PS3.

Played dad at pool today, we are 1-1 at the moment and he is sooooooo bloomin' competitive.

I am really looking forward to seeing Mum, Dylan and Nana tomorrow, it will make a nice change from having to look at Dad all the time.

Managed to steal a bag of crisps off of dad and I ate the lot. I also managed two milkshakes today and some of my chocolates.

I have had my fluids reduced and a few of my medicines switched from IV to either liquid or tablets.

I can't wait to get off this drip, it really slows me down.

Dad is looking forward to circuit training tomorrow night but he says that he will miss me loads whilst he is away.

I spoke to my cousin Chris in America today and he wants to play Rugby but he says his American friends are afraid to play without pads!!! Great big pansies.

Day 5: The Gr8 Escape (or not)

I woke up at 8am and Dad was out getting breakfast so I helped myself to telly and got ready for my day of drugs, jabs and ....drugs!

Dad came back and I got set up with platelets and blood in preparation for my Lumbar Puncture and general anaesthetic.

Nothing much to report before lunch except being knocked out and a massive needle shoved into my spine.
Doctors put in some chemo while they were in there to help tackle any Leukaemic cells lurking in there.

When I came round I was wheeled into my room and I saw Dad, he had had a shower, which was nice because he was starting to smell bad.
I told him I was starving so he whipped me off to Burger King!

We were part way through our lunch when a doctor came over and informed us that we were not meant to be dragging a big bag of blood around the hospital.
She was followed by Jenny my Nurse and boy was she ticked off with my Dad for taking me off the ward!!!

I had been tring to watch a film with dad all morning and with all the interuptions it took about 5hrs!

Just as the film finished my Physio turned up, she was quite pretty so concentrating on what she was saying was a little hard.

My play therapist turned up and traded my xbox for a ps3 and gave me a couple of games which was cool, so I thrashed Dad for an hour or so.

Dad was a bit tired so he went to the vending machine down the hall for a caffeine hit, except he hit it a bit too hard and would not shut up!

Doctors came this morning and checked my spleen, it had moved a lot and even the doctors were shocked, thank you Joey and Jeremy.

(I forgot to mention that I have to pee lots because of all the fluids I am on, and the first time I had to use a collection pot I was so conscious of keeping myself covered up that I crammed my undercarriage down the neck of the pot and got myself a bit stuck.)

(A note to any other boys who go through this, try and think unplessant thoughts when female doctors are examining your back wheels or you may suffer an unfortunate mishap like I did the other day.)

Right at the end of the day Ann, Rod and Matthew from TLC came to visit me, they brought loads of chocolate which is cool as Dad seems to like force feeding me loads of it.

Dad and I are watching Land of The Lost and then it is off to bed.

Day 4: Elvis is in the building.

In the morning i was woken up at 5am being sick. I was sick three times and managed to redecorate my bed and surrounding area, which was nice especially for Mum who had to clean it up.

I was looking forward to seeing my best friend Joss.
Joss and I are best buds and go to the same Junior School in Watton.
Joss is everything that I am not.
He is a magic obsessed Elvis impersonator and recently won two school talent competitions.
Joss and I play Rugby together and regularly take part in tough training sessions alongside Watton RUFC which are coached by my Dad.

Joss was brought in by his Mum Penny.
It was Penny who prompted my Mum to go to A&E as she picked up on the early warning signs and actually had a premonition that I would be diagnosed with Leukaemia. Clever lady.

Joss very kindly brought me some gifts.
A Grand Prix board game and a book called the "Thin Executioner".
He then kept me entertained with some magic tricks that he had been practicing, they were awesome and I could not figure out how he could do them, especially the trick with the bottle and the mobile phone.

My Nana came in with my Dad and Dylan, she brought me a huge balloon and a nice get well soon card as well as some fruit and sweets from her friend Linda.
I also got a comic with a toy helicopter on the front, which Dylan nicked.

I also had visits from Joey and Amy from TLC who prayed for me in the hospital chapel which made me feel happy because people care for me.

My good friend Steve Taylor came and visited me and left me with a stuffed Chihuahua toy, he's mental and kept telling me to play football (which will never happen Steve.)

Mum, Nana and Dylan left after dinner and my Dad is staying with me until I kick him out on Thursday for wearing horrendous Bat Fink pyjama bottoms and an awful Scooby Doo t-shirt, he looks like he has escaped from a mental home.

Dad is helping me write this blog, because if I had to type it, I would just about finish the first page as I was being discharged from hospital two weeks later!!

Day 3: Let there be pressies!

I am starting to get used to having George around now, he is slightly less annoying and does cut out the need for canulars being stuck into my hands all the time.

I had a dose of Chemotherapy, my first one, and it made me sick. The nurses have to weigh and test EVERYTHING that leaves my body and I mean EVERYTHING!!!!

My Grandad came down today and amongst other things he left me a mini laptop which is the only reason I am able to talk to all my friends and family, so a massive thank you to Grandad and Sue.

My Dad and Dylan went to our church this morning and the whole congregation prayed for me, it made me feel like I had some support and wasn't on my own.

When Dad and Dylan turned up they came clutching loads of gifts  including my new bible, a portable DVD player, a stack of DVDs and some sweets.

I now have a cupboard stuffed with boxes of chocolates, sweets and cakes, it's a shame I haven't got a chuffing appetite!

Day 2: George Hickman arrives.

I woke around 07:30 and didn't fancy breakfast. I needed to go to the toilet a lot because the drip I had had put in had had two litres added to it as I had not been eating or drinking enough.

I am having a permanent line put in today, it is called a Hickman line. I have called mine George!

I am having surgery to put George in and it will take about two hours.

Mum came with me and was alarmed at the big metal slab/bed in the theatre.
She was more shocked when she saw the two surgeons using Google to research medical procedures.
"What next" she said "YouTube during the procedure!"
I lay talking to my Mum as I was being knocked out which was weird as it took about 20 seconds and made me look drunk.

I woke up in Recovery with two nurses looking after me. I was very tired and whenever I blinked I fell asleep but instantly wanted to be awake again, very wierd and annoying.

I coughed up something nasty and jelly-like, which I swallowed. Which was a bad choice as it made me cough loads.

Dad and Dylan came and visited just after my Hickman line went in and I was showing Dylan how it all worked.
Dad said that I looked like I had been run over because of all the pink surgical paint used during my op.

Then we all sat around my bed and had a Burger King because on a Saturday night we get a takeaway paid for by the hospital.
I had a Whopper with cheese meal but only ate two fries and a bite of my Whopper.

I got my appetite back after my Dad and brother had left, so Stuart made me another monster midnight snack.

Day 1: A trip to KFC turned into a lengthy stay in Addenbrookes!

My name is Deryn and I am 10 years old. I live in Watton with my Mum, Dad, Little Brother Dylan and my crazy dog Ozzy.

I will be using this blog to help me while I go through treatment and hopefully to help future child Leukaemia patients.

I had started to feel rough about two weeks ago and had begun to lose my appetite.
Mum and Dad became worried especially because I didn't want to play Rugby and had been complaining of pains in my left side

My GP checked me over and said that my spleen was a bit enlarged and that I should get checked over in hospital.

Mum and Dad took me to Norfolk and Norwich Hospital where they took some blood and then checked me over in A&E.

The Doctor in A&E diagnosed me as having Glandular fever and said that I should see my GP in a couple of weeks if the symptoms persisted.

Dad decided that we all deserved a KFC so we set off for Longwater.

I didn't get to eat much as I still didn't have an appetite.
As we were finishing, Mum got a phone call from my GP.
It seemed that the lab at Norfolk and Norwich had found something wrong with my blood samples and needed me to go back to the Jenny Lind Children's Centre for assessment.

When we got to the Jenny Lind Centre I was put in a treatment room and the Nurse put numbing cream on my wrists and inside my elbows as the Nurses wanted to steal more of my claret!

After a bit of a wait a consultant, registrar and two nurses came in and my family and I were told that I had Leukaemia.

I was shocked and upset and didn't know quite how to react.
Mum was in tears straight away and Dad went quiet.

I had to have blood taken and a chest x-ray before getting my Blue Light Taxi to Addenbrookes.

Mum and I rode in the ambulance and Dad went home to start sorting out kit for my stay in hospital.
Dad didn't get to Addenbrookes until gone nine at night and it was a bit of an emotional day all in all.

I didn't get to bed until about half twelve Saturday morning and I was absolutely shattered.

My nurse Stuart made me a midnight feast of  Peperami, Mini Baby Belle, toast and two cheese strings.
Stuart is awesome and kept my spirtits up by taking the mickey out of me.