Day +15 - Part 2

Hello Again Everyone... I stayed awake for the rest of the day. The teacher came and we did some more of our handbag, we will finish it on Monday as we have to wait for bits of it to dry, then I played with my DS for a bit, I wanted to chill out so I watched Grease. Because I didn't have any nap at all I am really tired now and it was a very exciting day. I did try to eat some Sheperds Pie for dinner but I got awful pains in the back of my knees and a pain in my tummy so I couldn't eat anything. I will have dinner in my tube when I'm asleep. The nurse have given me some pain relief and something to help me sleep so I hope to be much better tomorrow. Love Naoise xxx

Day +15 - Part 1

Hi Everyone!! Well the the famous visitors and they had the X Factor!!! Alexandra, Eoin, Diana, Daniel, Rachel, Ruth... they were all here. And guess what, they sang Heros to me!!!! They weren't allowed in my room but they sang through the intercom and I could see them in the window...!! It was really fab... Nana was crying!! But she managed to go outside and got pictures of them all and all of their autographs... they were so lovely. Daniel even gave me his bracelet!!! Check out the pictures on the website below. I got up early to get ready, had a pancake and a shower and a manicure (thanks Paula!).... it was very exciting and I was very nervous.... Paula also gave me a demo of the dance she used to do to Dr.Beat in her Disco days.... :-). Haven't got my blood results yet.. will update you later and let you know how the rest of the day goes..... NOTHING could top that.. it was soo amazing....... Love Naoise xxxx

http://picasaweb.google.com/naoisemcg/Day15?authkey=Gv1sRgCKvTj_Txkob6fQ&feat=directlink

Day +14

Hi All, Today was sooo much better than yesterday. I had a pancake for breakfast so I didn't need to be fed down my tube. Then at lunch time I had pureed carrots with peaches and custard for desert... then at dinner I had lasagne and now I feel like a sponge cake... hmmmm... think I might be getting my appetite back! I woke up early and mummy read to me, then the doctor came and said I was doing great!. My neutrophil count has now gone up to 0.09. After that I had a shower (which is so much easier now cos of my lack of hair!) and then physiotherapist Clare came. She was pretty tough and I was wrecked afterwards (but she is really nice I know she is reading this :-). Check me out on my wobble board with no hands!! We tried to put on my socks but we’re not quite there yet. We’ll get there though!! Then the teacher came and we are making a really lovely handbag… No maths today – yay!!. Watched the DVD Hairspray and then Paula the play nurse came in and we made sequined postcards. Paula also brought me a brochure for wigs.. I can pick out two. They are really cool wigs, I am getting one with a scarf and one with a bandana. Am still thinking about colours. maybe one dark and one blonde… although I do like being blonde.. have to think about that one. After all that I fell asleep and woke up just in time for Friends. Mummy said I was talking in my sleep and I kept saying ‘lift your arms’! Clare’s instructions are really stuck in my head :-). Thanks everyone for all your comments, its part of our evening ritual to read them!! Gail thanks so much for the song, its really fantastic. You should write songs instead of being a nurse :-) Mummy sang it to me very very badly… she should not give up the day job!! Anyway, I’ve now got to work on making a bowl of sponge cake with custard disappear….. tough life talk to you tomorrow xxx Oh and tomorrow I will send pictures of who the famous vistors are.. no one has guessed yet...and Oh I've been here exactly a month today!! xxxx

Day +13

Hello Everyone, today started off great, I had a pancake for breakfast but then I was sick. I didn't sleep all morning and was so exhausted I got upset... Then one of my lines got blocked and I got upset again...... I think I was really really over tired. Mummy read me a story and I fell asleep, after that I felt a bit better and the good news is the nurses managed to unblock my line! I had another pancake when I woke up and watched friends. I am really really tired again so its a short one today as I'm going to sleep now... keep guessing on the the famous people front... no one has guessed yet...! Love Naoise xxx

Day +12

Hello Everyone, Today I feel a bit better and guess what - I haven't been sick yet. I felt like I was going to a zillion times today but I didn't!! BUT I've just eaten two pancakes so I think I might but it was sooo worth it! Also the big news of today is my white cells which have been zero since my transplant are now 0.1 so they are going in the right direction!! The doctors have taken me off some of my pain medicine that was making me very sleepy so I'm a bit perkier today. I wasn't well enough for the teacher or the physio. Amanda the play nurse came in and shaved the bit of hair I had left. I really think its much better this way. Mummy says I look like Sinead O' Connor only prettier..! My head was really cold at first so I wore a hat, then it got too hot so I took it off. I played my hangman game today but I've lost all the 'f' letters so I couldn't do Westlife! I missed the clown doctors, I was fast asleep when they came!! Will hopefully see them next week! Everyone is guessing Ant & Dec for the famous visitors... and they are wrong... Guess again.. !! I'm really tired tonight and might have an early night. I was really really looking forward to a rare steak when I get home but nurse told me when I'm allowed meat it has to be really well cooked :-( Check out my before and after pictures... talk soon love Naoise xxx Oh and thanks to everyone for their emails.. as soon as I'm well enough I will answer them...!! Mummy reads them out to me everyday xxx

Day +11

Hello Everyone, today was pretty much the same as yesterday. I was tired and sick for most of the day. The teacher came this morning and asked was I ok for a lesson, I said OK I'd try, and she said 'good lets do some maths'...... yuck. Anyway I just about managed to stay awake for problems with decimals which would put me to sleep even if I wasn't sick!! Then I had a nap, after that the physio Claire came, she is really pleased with my movements but gave me harder excercises to do this week. She said the aim is by the end of the week is for me to be able to put my socks on!! I haven't been able to put my socks on for about 3 years!! We got the TV fixed so I watched Friends and the Dog Whisperer. The play nurse Paula has a cold and couldn't come into my room today. I hope she feels better soon and comes to see me, I really want her to do my hair, since its nearly all gone its best to get it all shaved off so it will all grow back at the same time. Everyone says she is great at doing hair! My craving today is tuna and sweetcorn with tomato ketchup, its really yum! Tomorrow is pancake Tuesday and the nurse Anna has to find out if I am allowed some pancakes so watch this space....... I had a surprise call from Gail and Tilly today who are the nurses that look after me in Temple Street.... I'll see them again as I will have to in for tranfusions for a while after I get back to Dublin. I'll give you a hint about who is coming on Friday...... its more than one person! Tomorrow the clown doctors come so hopefully I'll stay awake for that. I had another platelet transfusion today and the doctor said I was on track and we should see my white cells coming in very soon so say lots of prayers!!! xx P.S Thanks to Bob for looking after Gizmo and Harvey for the week, remember Gizmo is on a diet, hope your not feeding him lots :-) xx

Day +10

Greetings from Newcastle General Hospital... today was very hard, I was very sick this morning and am feeling very very tired. I sleep lots but when I wake up I still feel tired and sick... :-( I did have two really cool nurses looking after me today and they cheered me up. Also Amanda the play nurse came in and we painted some pictures for the window. Nana went to Marks & Spencers for cheesey coleslaw, it was really nice. The doc came around and told mummy my platelet count was still low and that I would have another tranfusion. Its bright yellow and he calls it mango juice :-). He said that my magnesium levels are very low too so I got a tranfusion of that too. I still have a bit of an infection in my tummy that they are keeping a close eye on. Between that and five anti-sickness drugs, steriods, antibiotics, anti-rejection drugs and so much other stuff that I have no clue of my day is pretty much taken up with the nurses giving me all my medication!! Somewhere between day +12 and + 16 my white blood cells which are called Neutrophils should start to go up and that will be a sign that my body is accepting the bone marrow so fingers crossed!! The days and nights are very busy here and believe it or not they go really quickly. The TV broke today so we watched Meet The Parents and Mama Mia. I think I will sleep really well tonight cos I am so tired. Tomorrow is Monday, not sure if I'll be well enough to see the teacher.... will let you know. Can anyone guess who the famous visitor is on Friday..... love Naoise xxx

Day +9

Hi All

I managed to stay awake all day ! I was a bit sick in the afternoon but I had a really good night of sleep. Amanda the play nurse came in and did my nails, guess what colour? Pink! :-). Then I had a shower and put on some new PJs (guess what colour?) and watched High School Musicial 3 (thanks Nuala!). I really fancied a bit of custard and my Nana (who arrived to see me for a week!), walked all around the place looking for some. She found in a shop ages away. It was a really creamy one and I managed to eat a bit of it. I'm still getting fed by my tube so it doesn't matter if I eat anything or not!. I tried on a bandana today as most of my hair has fallen out. Mummy was brushing my hair it came out in big clumps, I now have a hairy bed :-). The doc came in and is pleased with me although I still have a really weird rash, its a bit like a suntan, its really brown. I had a platelet transfusion too as my platlet count is really low at the moment. I am also am having some food cravings... I really feel the need for some cheesey coleslaw, pureed carrots and some apples or pears..... strange... I didn't manage to see Ant & Dec cos I fell fast asleep for the night at 7 o' clock!! Talk soon, love Naoise xx

Day +7

Hi All, it’s been one week since my transplant and it has been a tough week and I don’t yet see or feel any difference. The doctors say that is what they would have expected. Let’s hope that week 2 brings some better days. Today was ok. As usual I slept for a lot of the day; tummy was upset and rash remains. Paula came in to me today; we played with my Hanna Montana toys and made a cool bracelet. My physiotherapist also visited at the same time as Paula and the all of us looked at a video of three children who had JIA, like me, before and after their treatments. The results were amazing, each of them were very flexible and had full movement. For the first time I did all my exercise – bike and wobble board (have a look at the photo). I also found out that we are having some famous visitors next Friday, I won’t say too much at this stage. That’s all, bye for now. Love Naoise xox.

Day +6

Hi All, another mostly quite day with lots of sleeping, but I have a couple of good things to mention. I got two great presents, the first one was from Daddy's work and the second was from Bridget's work and had two great posters for my room. Also, I had a two things to eat today which made the doctors very excited. I had some chicken nuggets in the morning and some weatabix in the evening. I didn't eat much but it tasted good. I have developed another rash which I have to keep an eye on, it's not itchy but we will have to wait and see. Aine called to sing another song, which was brilliant after that I watched the Brit awards last night which was cool. That's all for now. Thanks to everybody for their messages and good wishes I love reading them each evening. Bye for now. Naoise x0x.

Day +5

Hi Everyone,

Today was another sleepy day, didn't wake up much at all. Even the play nurse didn't get a chance to come in because I was asleep for hours and hours. The Physio came in when I eventually woke up and guess what? I can move my arms much better than I ever could. Check this out (espeically Kelly :-))! A big big box arrived for me this morning, I was so very excited cos it said Hamleys on it (one of my favourite shops!!). Its from Daddys work!! I ripped it open and got a fab Hannah Montana bag, a poodle, a secret diary and a fab pink pillow!! It was such a big box even all the nurses came in to see what was in it. I managed to sit in my chair so I could open the box properly, it really cheered me up!. After all that excitment I now need to have a nap on my new pillow............ A big thank you to Accenture EA and the F&S team for all the great presents for Naoise. It has really made her day. The presents are perfect and exactly what she loves!!

Love Naoise xxx

My Transplant Video

Hi All
Here is a short video of me pressing the button to start off my transplant. Mummy took this on her phone so its not very clear I was also so so so tired when this was happening!
Love Naoise xxx

Day +4

Hello All,

Today was probably my worst day so far. I got sick an awful lot, there is a lot of flem building up in my tummy which is making me really really sick. All I did really was sleep and be sick all day, although I did manage to get up and have a shower, was soooo tired afterwards though it was like climbing a moutain!! Aine rang me and sang me a song and that cheered me up no end! Will hopefully feel better tomorrow. Talk to you soon. Love Naoise xxx

Day +3

Hi All, today was a day of 2 halves, I spent most of the first half of the day asleep but I came a little more awake once I had my shower. Dad was happy because he got to see his rugby match while I slept which was good for both of us. After that I had a shower and began to feel a little bit better. My tummy is still upset and I have a rash all over my body from the medicine that I’ve been receiving, sometimes it is very itchy. Professor Cant came in to visit me and he told me that I was doing OK and was where I should be at this stage. Later in the evening Paula, who is the play specialist came to visit me, she is brilliant and is always full off great ideas. Paula and I made chocolate rice crispy buns which we are going to sell to the nurses. I’m attaching a photo of Paula and me working on our buns. Paula said that I can be her bride’s maid if I help her find a good Irish man, you never know!! I just watched Dancing on Ice and now it is time to go sleep. Night night, love Naoise.

Day +2

Hi All, day 2 was a little better than day 1 – I wasn’t as ill today as I was yesterday. I spent most of the day asleep, only waking up for a short while. I had to have my feeding tube inserted today. It became too difficult for me to eat and drink the amount I was supposed to, especially when my tummy was upset. My dad tried to watch the rugby, but I would wake up and make him change over to Friends, which is much better than rugby. Ant and Deck started a new program this evening. They are from Newcastle and all the nurses love them, I managed to stay awake to watch them. That’s all for now, I think it’s time I went back to sleep. Bye for now. xxx

Day +1

Hi all, this will be a short one as it has been a tough day. My tummy was very upset for most of the day. I'm trying to get on without having a feeding tube in, but it means that I have to try and eat and drink. The nurses said that if I drank 5 1/2 cups of milk during the day then I wouldn't need a feeding tube. It sounded ok, but when your tummy isn't great then it is quite hard. Got a couple of calls from Nana(s) and from my friends which was great - miss you all. Bye for now.

Day 0 - Transplant Day

Hi everybody, today I had my Bone Marrow Transfusion, but it took longer than I was expecting. First of all I was totally exhausted after my shower and spent most of the rest of the day asleep. I was supposed to have my transplant between 4 and 6 but due to the weather Newcastle airport was closed and my bone marrow was diverted to Edinburg. My donor was from outside the UK, I don’t know who they are or where they are from, I’m just grateful to them. In the end it arrived at 9 o’clock this evening. The transfusion is due to run for about 6 hours. I was very excited about the transfusion and I see this as a new beginning. Amazingly the colour of the transfusion was the ‘great and wonderful’ pink. The nurses let me press the button to start the transfusion. I am very excited by this! I hope you enjoy my ‘interview’ - which will be up on the blog soon. Night night, love Naoise. Xox.

What we can expect just after the transplant

Hi All - Naoise Dad here. A couple of people have asked what we can expect after the transplant so here is what we are focused on at this stage. As Naoise mentioned her transplant will occur tomorrow, for the next 14+ days Naoise will continue to be very sick and will not notice too much of a difference. Slowly, the new bone marrow will begin to take and Naoise should begin to notice some small changes. 22 days post transplant Naoise will be tested to see if the transplant has been successful. We will remain in the hospital for approximately another 5 to 6 weeks and if all goes well we will then move to the half way house for further recuperation.

My Treatment - Day 11

Hi all, its me again. Just a short one today as I was very sick. Today is day -11 I'm looking forward to my transplant tomorrow. Today I started some anti rejection drugs which I will be on for about 2 or 3 weeks. Today I missed the teacher so I got away with no school work today!!! Mummy put my medicine in my tube today for the first time but then I threw up again. My throat and ear feel sore too but am getting some medicine to fix them. I haven't been eating at all except for ice lollies. I miss everyone so much, I miss my school, my friends, my family and my little sister. I also miss cuddles and hugs. Laurna called me tonight, it was great to have a catch up.

TTFN!! Love Naoise xxx

My Treatment – Day 9

Hello, today was a tough day. I’m still on my chemo and this is really upsetting my tummy... also my feeding tube came out... twice over the weekend... and I had to have another one put in today.. not a great thing to do.. I’m not sleeping as much during the day as I was but I still like to have a little nap after my shower – thinking of my friends in school !! My teacher came in today... I had some sums to do from last week... but this time we worked on my teacher’s computer.. it was good fun... Tomorrow is my last day on chemo, then it is a rest day before my transplant. I’ll be glad to be over the chemo. That’s all for tonight.. time to go to sleep.. at least until the nurses come in during the night and wake me up..

My Treatment – Days 7 and 8

Hi Everyone, sorry about the delay, but we had some technical problems and I wasn’t able to upload my update. It is brill to receive all your mails and comments and I love to read them each day. I’ll try and reply as soon as I can !! My weekend was ok, my chemo continues, this part of the chemo is making my tummy very upset, but what can you do... I haven’t been keen to eat that much for the past couple of days so the nurses put a feeding tube into my tummy. I get fed a chocolate looking drink through my tube during the day. On Sunday I got three cool posters for my room – it needs a lot of decoration.. !! we watched a couple of DVDs and I beat my mum and dad at scrabble... twice !!! that was my weekend !!! bye for now.. Love Naoise xx..

My Treatment - Day 6

Hi Everyone, I was so happy to get loads of emails from the entire class!!!! I can't believe I'm missing reading buddies but you gotta look on the bright side, I missed a test today!! Of course I would have got 100% :-)!! Sounds like its pretty snowy over there!! Well today all I did was sleep reallly, woke up for about an hour in the morning and an hour in the evening. I didn't feel like eating at all or even watching a DVD. My tummy is very upset so its good that I am sleeping at lot :-) I'm really tired all the time too. Today was a rest day from chemo tomorrow it starts all over again, day -5, better get some sleep now. Love Noaise xxxx

My Treatment - Day 5

Hello, today was a sleep day for me. I woke up at 8.00 had a shower and slept until 2.00!! Then the play nurse came at 2.00 for an hour and we drew a crab, then I went back asleep until 5.00!! I still feel a bit wobbly and sick but I didn't actually get sick today so the medicine the nurses gave me for my sickness must be working :-). I didn't eat anything today except some frozen fruit juice. I watched a movie called Penelope. Today is called -7 day, on this day next week I will be having my transplant which will be day 0. After that the day will be called +1 day and so on.... tomorrow is day -6 which is a rest day for me so I get no chemo. Because I didn't drink anything today the docs had to give me a drink in my central line. Thanks you everyone for your messages, they are great to read every morning! Love Naoise xx p.s Emma sorry I was too tired to talk to you today, will talk to you tomorrow xx

My Treatment - Day 4

Hi All, today was a bit tougher than yesterday for me. I had lots of visitors this morning which really tired me out. The nurses, the doctor, the physio, the teacher and the play nurse came all one after the other in the morning. By lunch time I was really tired and hungry and got a bit upset when I couldn't work out my maths problems. I got some maths homework which I haven't done!! The teacher came in the morning and we made a candle, then in the afternoon it was getting down to work time - maths! After I eventually got my lunch I got a really upset tummy and was sick. I think the chemo has started to work and is making me feel sick. The nurse gave some tablets which will hopefully help me feel better. We played a bit hangman and scrabble, I won :-). Then we watched Mr. Morgoriam Wonder Emporium. I'm very tired today, more chemo tomorrow :-(. Photos will follow tomorrow, nite xxx oh p.s I had chicken soup for breakie :-)

My Treatment - Day 3

Hello Again, well today is day 3 and I'm fine so far. I painted the windows today!! It was great fun!! Check out the photo below. Mammy and Paula the play nurse helped me. This morning I fancied a lie in so I texted Mum & Dad and told them not to come until 8.30. When they arrived I had Spaghetti hoops for breakie, I actually ate loads today. I started chemo this morning and had lots of drugs through my central line and now I have to have yucky mouthwash four times a day!! I have finished the medicine to kill off my bad cells. I was a bit wobbly again but I still managed to eat fish pie for my dinner, then noodles, then malteasers, a bag of crisps and an entire bag of microwave popcorn. :-) The teacher came today, she loved my books and is going to do actual experiments with me for Science. Today some clown doctors came too, they were very funny. They weren't able to come into my room but I could look at them through the window and talk to the them on the telephone intercom thingie.. they were great fun and they are coming back next Tuesday. We watched another movie tonight called Game Plan it was really good. I'm going to get some sleep now the nurses have to wake me during the night for all my tablets.. last night I spilled milk all over my bed in the middle of the night and had to change my PJs...talk to you again tomorrow xxx

My Treatment - Day 2

Hi Everyone, thanks for all your comments, its really great to read them! Today I was lazing in bed yet again :-). I woke up early and fancied fish fingers for breakfast so I had them with ketchup!! We put on Westlife really loud instead of watching TV. Then the play nurse came and we coloured in pictures for my windows... the play nurse said I could actually colour on the windows with paint!! I felt a bit too wobbly to do it today but I'm sure I'll do it tomorrow. I'm continuing on with my tranfusions that are killing all my bad cells. Tomorrow I start my first round of chemotherapy. My voice sounds funny at the moment because my throat is a bit sore and I'm drinking loads and loads of milk and coke. Professor Cant came to see me today and all doctors and nurses are having trouble pronoucing my name because its Irish!! I am the oldest on the ward, the next oldest besides me is only four years only, the rest are babies! Its snowing here in Newcastle I can see a bit of it from my window. I bet Belgrove will be closed if its snowing in Dublin!! Catch up with you tomorrow, love Naoise xx

My Treatment - 1st February

Today I started my pre-transplant treatment. I started off by getting a transfusion to kill off all my bad cells. This made me very dizzy and sick but the nurse gave me tablets to fix it!! I got a list of food that I not allowed to eat, I can't eat any fresh vegetables, meat or fish! I can only eat things out of a tin or things that are frozen!! I can eat choccie and crisps though!!! The nurses are really nice and my room is big!! The play nurse came to see me today and I painted my own mug, she is coming again tomorrow and every day that I am here!! Tonight we watched a movie called College Road Trip, I ate toffee popcorn and crisps! Mummy and Daddy have to wear pink aprons and scrub themselves before coming into my room! Tomorrow I get more tranfusions... and every day for ten days!! Catch up with you tomorrow, Naoise xxx