Day +46 and Day +47

Check out my trip to Holland

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Well where do I start.. since I last wrote I can't believe I have been to Holland and back! I didn't feel too well yesterday and was really tired so I didn't update my blog. I didn't sleep at all last night, was up all the time and the nurses had to give me most of my meds during the night that were due today cos of my travels. The day started off at 6.30 this morning, I had shredded wheat for breakie and got dressed. First I tried on my skinny pink jeans which I couldn't get on and then my skinny blue jeans which I couldn't get on either! I'm swollen at the moment because there is lots of fluid in my body which isn't coming out. I tried on two pairs of shoes which wouldn't go one me either!! In the end I managed to get my black jeans on and my crocs. The ambulance came and off we went with the sirens on it was very exciting. The ambulance took us right onto the tarmac and onto the plane we got. The plane was tiny. It just about fitted me, mummy, daddy, Leanne and Jane the Paramedic. Jane has to sit on the case that was carrying my meds. It was a really smooth flight, just 1 hour and a half. We got to Leyden and the ambulance was waiting for us on the tarmac and took us straight to the hospital. The ambulance was really small, too small for mummy and daddy to fit in so they went in a medi taxi, they got there before me! The hospital is so huge and amazing. All the nurses wear white and wear masks which was a bit scary! My room was really sunny and bright. I had some really nice soup for lunch while I was waiting on my stem cells to come. Mummy had to sign a consent form in Dutch, she said it was double Dutch :-). Anyway after about an hour the stem cells came, in a little bag, they are clear white, just like water and took fifteen minutes to transfuse. The Doc said that he hadn't seen any side effects from the actual cells but from the chemicals they use to defrost the cells as they are frozen. After I had my transfusion everyone was staring at me waiting for something to happen, I got a bit nervous and thought I couldn't breathe..!! But I was grand it was only cos everyone was staring at me!! We left the hospital within about 2 hours, it was so quick. We were back in the ambulance and on the plane in no time. The landing back in Newcastle was a bit bumpy, Mummy was sweating.. she took all her rescue drops on the way over and had none left!! We saw Hilary Clinton and The Prime Minister of Afghanistan at the airport! I started to feel really sick on the way home and couldn't wait to land. My tummy was really sore and was so glad to get back to my room. Dad carried all the bags, it was like we were going away for weeks! The doc came in to see me and said that I did really well and we would wait and see if the cells start to grow and fix my gut. He also said that if I was still swollen tomorrow he would give me some medicine. Also the big news is he said that they are reducing my steroids tomorrow! So we are progressing with things. After I got back to my room I started to feel better. I had rice for my tea and I feel so much better and comfy. When I got back to my room Jackie had cleaned and made it lovely, she also made my bed with a lovely pink duvet and pillow. Thanks Jackie!!! Jane hope you managed to get on my blog and thanks so much for today! Leanne, we might be doing it again :-) Thanks lots too. Am tired now gonna sleep, hopefully for the night!! Love Naoise xxx

Day +45

Hi All, today the clocks ‘sprung’ forward and it seemed to put the whole day out of sorts. Dad and me were up a lot last night but finally got to sleep at 5 this morning and woke up at 9, or could be 10? For breakfast I had pasta and chicken, for lunch I had soup and for tea I had some coca pops, so you see my day was kinda back to front. The day nurses were worried that they would sleep it out, but they didn’t – but one of the doctors did, I don’t want to say which one to save his embarrassment. Other than that we had a kinda quite day. Amanda the play specialist has a cold so couldn’t come into me. Both dad and I had a nap this afternoon – nothing like a little sleep in the middle of the day, after that we watched “Sydney White”, which is a modern Snow White story which was great. I had my shower late in the day, I had a quick one which was ok. Later we watched ‘come dine with me’ I’m becoming a big fan of this program and even better is that Friends is on later on E 4 so you don’t have to miss anything. As you can see a TV and sleepy day. Just one more day to my trip to Holland and the start of my rock star life style. Thanks to everybody for your kind messages. Nite nite, love Naoise.

Day +44

Hi all, do you know it is over a week since I had a decent nights sleep, you can guess then that I had anther restless night and was up quite a lot. Saturday is very quite here in the hospital; only the nurses, a few doctors and Amada (play nurses). I had some soda bread and turkey for breakfast, the bread was lovely. We watched Rachel Allen ‘bake’ which made Dad & me very hungry. I had a lunch in two halves, firstly I had some pasta and chicken, and then about an hour later I had some home made chips and garlic. All of which was really, really lovely – I’m thinking of food a lot. My steroids are making me very hungry. We then watched a video – the holiday – which was brilliant. After all that excitement it was time for a good nap and Friends. Don’t forget everybody it is Earth Hour tonight at 8:30 and we are going to turn out our lights – like people all over the world. That’s all for today. Lots of love Naoise.

Day +43

Hi everyone, day +43. Dad came this morning and mum got to go home for a rest, she is pretty wrecked. I sent dad a shopping list to get on the way here and I was looking forward to my breakfast. I asked for Sherdies, but dad bought Shreded Wheat (which tastes like straw), he also bought frozen cocktail sausages – but Dad kinda of over cooked them (twice), I hope tomorrow he gets it right. The day was slightly better. Paula came in for a play date, which was fun. I made a cool bag which I’m going to bring with me on Tuesday; it is full of glitter (you’ve got to look the part). Paula is going to Sweden to present at a very important conference – good luck Paula. I’m still on lots of meds and the nurses were in & out all day. I had some pasta for lunch, which was nice. Then watched the Cinderella Story DVD and had a sleep. I had to have a shower later this afternoon which is very hard when you’ve just woken up from a nice sleep. I’ve two big pieces of news. Dad brought over the autographs of all of Westlife, Trina from 98FM met them and asked them for their autograph – thanks Trina, I love this. Then later today I got a parcel from London – It was a signed poster of the next Michael Morpurgo book. I was delighted to get this as I’m a big fan of his – his next book is called Running Wild – thanks to my teachers here in Newcastle for arranging this. I hope I have a better nights sleep tonight. Thanks to all for your good wishes, they really make a big difference. Love Naoise PS Gail, great to talk to you today.

Day +42

Hello Everyone, Today and last night were not good at all. Really awful. I had another sleepless night. This morning I decided I was hungry, I had cheese on toast and then a cereal which was way too much cos I haven't eaten in so long. I spend all morning and all afternoon going to the loo and haven't been able to catch up on my sleep at all. The big news is that the steriods and infliximab are not working as well as they should, I'm not really getting any better. So instead of having a drug called ATG which was sort of the plan, Doctor Slater came up with a better plan. I'm off to Holland on Tuesday for some stem cell treatment, its call Mesenchmal Stem Cell. In Holland they have a bank of donors and I will get a transfusion of some more marrow, this should sort out my gut problems which is caused by GVHD, this should hopefully balance out my cells so that I will have all good cells and no bad ones anymore. Its kind of a new treatment but has the doc says it has great success results. I get to go on a private jet plane and an ambulance will meet me on the tarmac in Holland a place called Leyden and bring me straight to the hospital. I don't even have to go into the airport building. Mummy and Daddy, a nurse from here and a paramedic are coming with me. On the plane I will be in a bed, how strange will that be, not sitting in the plane but lying down! In the meantime I have to try and get better but it doesn't seem to be happening at all. I'm still feeling sick and miserable, and the pains in my tummy are just not going away. Talk tomorrow, love Naoise xx

Day +41

Hello Everyone, Well last night was much the same as every night this week, up most of the night again.... Mummy counted and we were up 9 times during the night, no wonder I am so tired! I'm on a lot of new drugs which are making me feel a little bit light headed and I needed a blood tranfusion today. I'm staying on my steroids for the next few days in the hope that they will make a difference. This morning I was almost crying with tiredness so we turned off all the lights and Bethany the nurse said she hold off coming in with my meds so I slept for about 3 hours and woke up like a new girl! I actually woke up and said to mummy I'm starving and fancied pasta, so she ran out to the shop and got some pasta in a packet, I ate a small bowl of that and a teacake afterwards! I haven't had a stomach cramp or have had to run to the loo all afternoon! Fingers and everything crossed that the corner is coming up! The teacher Elizabeth came today and we are almost finished our handbag. Amanda the play nurse came and we made a butterfly which is now hanging on my wall. We watched another bit of the DVD. Talk soon Love Naoise xxx

Day +40

Hi Everyone, well last night was pretty much the same as every other night this week, no sleep and up all the time :-(. Its really hard cos I am so so tired all of the time now. Today the doctor came and told us we are going to stay on the high dosages of steriods for now and also new one to try and sort out my tummy. I'm getting really bad cramps but I have some hot packs to put on my belly which really helps. I woke up this morning feeling a little bit more perky today than yesterday. Mum read my book 'Alone On A Wide Wide Sea' to me for a while then I had a nap. Yesterday I was so miserable I wasn't interested in doing anything. The teacher Elizabeth came this morning and read me some of my Tracey Beaker book. Then Amanda came and gave me a hand massage while telling me about her trip to Africa. She is going to bring in the pictures as she saw lots of Monkeys. Then Andy from Physio came with a proper heat pack for my belly but we don't know how to use it yet, its huge, he is bringing the instructions back tomorrow so hopefully that will sort me out too! Then I watched Charlie and Chocolate Factory. Also managed to have a shower which was a nightmare!! Then I ate 3 meatballs from a tin which weren't very tasty at all. We got the results of the me versus donor result, its a bit confusing now as it can be now split into two..the percentage of donor is 97% and 92%, which is a bit too much too soon which is why have I have a sick tummy and a rash. My temperature hasn't been up in a while and also my blood pressure is OK today, Mummy says we are turning a corner so lets all hope she is right!! I wasn't that sad today as I kept myself busy, I think thats the secret to stop feeling miserable, just keep busy and have lots of things to do, also the play nurses, physio, the teacher coming all really help taking my mind of my tummy and making the day seem that bit shorter. I'm on lots of transfusions so my alarms are going off all the time, I must drive Anna the nurse mad! Anna has been stuck looking after me for the last few days, she is great though! I spoke to my Nana Bob who told me she has kittens being born in her garden and she doesn't like cats. She has to feed them until the animal place come to pick them up. I bet her dog Beckham doesn't like that. Gaga Byrne in Thailand sorry I was so quick on the phone, I had to go to the toilet and when I have to go I REALLY REALLY have to go! I watched Friends and Mam is going to change the dressing on my line. Am in so much need of a good nites sleep so hopefully I will have one tonight as when I'm tired I get a bit grumpy. Thanks to everyone for all your comments on my blog, they really keep me going. Ms Walshe, I will take you up on your offer of that Naoise cheeky challenge and of course it would have to be something to do with the great and glorious colour (Welcome back from your Hols Gail!) Lots of love Noaise xxx P.S I can't believe I'm here 40 days, well more than forty days...cos I was here for almost two weeks before I even had my transplant, its funny it has gone so quickly xxx

Day +39

Hi Everyone, well today has been pretty much like the last few days – awful. I still feel sick and crampy and can’t do much at all. The good thing was it was Monday and I had some visitors. Clare the physio came to say hello, the dietician came and a really nice lady from the psychology came too, she is checking to see if I’m ok cos I have been a bit down in the dumps and because I have now been in this room for over 39 days…:-(. She sees all the kids in the hospital who have been in for a long time. Its getting a bit hard. Other than that I tried to sleep a bit and then mummy and I watched a DVD called ’13 going on 30’. I watched half of it but got too tired and needed a nap. I nibbled a bit of chocolate biscuit but couldn’t manage to eat it but it’s a start. My blood pressure went down again this afternoon so I’m getting more drinks in a drip which will sort that out. We’re still waiting on my Donor versus My Cells results so will keep you posted on that. I’m really tired now, talk soon love Naoise xxx

Day +38

Day +38
Hello Everyone, sorry I didn’t update my blog yesterday, we had a bit of a poo and a sore tummy situation going on. Its still going on and I still don’t feel so good. Today I’m going to sleep and watch DVDs. Mum is trying to persuade me to eat something but I’m not that keen. I said I might try a Ritz biscuit later on. I need to have shower today for sure as I wasn’t well enough yesterday. I didn’t have a great night either, I was up a lot and also my blood pressure went down a bit. My temperature is fine today and doctors have started giving me codine again which really helps the pains in my tummy. Yesterday was Sunday which was a quiet day in the hospital. I slept for most of the day and then I watched dancing on ice. I had a bit of feed through my tube. I’m on transfusions of steroids to try and get rid of my Graft Versus Host Disease, I am so hoping they will help to make me feel better very soon. Its sunny here and I would love to feel well enough to take a walk. My bloods are doing OK on their own my neutrophil count is 0.92 which has gone up in the last few days on its own so I haven’t needed any GCSF. Today my blood went for the test which will tell us the percentage of donor cells versus mine. This is really important for me and so keep everything crossed that there will be more donor cells than mine!. Talk to you later Love Noaise xxx

Day +36 and +37

Hi everyone, just a short update today as I’m feeling really bad again. Yesterday I had a biopsy of my gut. We went to the RVI hospital in an ambulance at around 12.00, I was on the emergency list but we had to wait until 8.30pm to have the test done . I was so nervous and scared when the dreaded moment came . It only took about 45 mins and afterward mum and dad saw a picture of my tummy which looks very red and inflamed, this is causing me to feel so so sick and is causing my high temperature. I eventually got back here at 3.00am this morning so I was really tired this morning. This afternoon we got the results, the biopsy confirmed I have Graft Versus Host Disease (GVHD). The docs have been very fast and have put me on transfusions of steroids and infliximab and some medicine beginning with R to fix my tummy. Right now I’m sleeping a lot and only wake up to get sick or go to the toilet which is a lot. Dad went home today and mummy is here now, she brought lots of DVDs which I have been too sick to watch.. I had to get another feeding tube put in my tummy as I haven’t eaten at all L. I am hoping so much I will feel better soon. Thanks for all your lovely comments. I will answer emails and update a longer blog when I feel better.. Lots of Love Naoise xxx

Day +35

Hi, another truly horrible night and day. Last night my temperature spiked and my blood pressure went quite low as a result the nurses were into me all night and I had very little sleep. I continued to be very sick today. The doctors have decided that I need a biopsy of my gut to see what the problem is. They think it is either a bug called Novartus (not sure of spelling) or Graft Versus Host disease (GVHD) but they need to do the biopsy to be sure. If it happens tomorrow (I’m on the emergency list) then we will have the results back some time on Monday. Otherwise my biopsy will take place on Saturday. I spent all of the day in bed, no teacher, no play nurse & no physco, just the nurses and doctors. I’m pretty wrecked now so I’m going asleep. Nite nite, love Naoise.

Day +34

Hi everybody, today was a horrible day. I have a bug which has made me very sick , tired and horrible. I’ve managed to eat my breakfast, dinner and tea and drink my 1.7 litre of drinks, but I got sick after each meal. Nobody came today as I wasn’t up to it and I didn’t go out for a walk, even though the weather looked good. I have some new medicines to help my sickness, but it makes me very sleepy. One of the girls on the ward got out today, Good luck Sara. Thats all for now. I hope tomorrow is better. Love Naoise. PS thanks to everybody who sent me a Happy St Patrick message yesterday, I was really touched by the volume of messages – it helped me have a great day.

Day +33

Hi everyone, today I had a very busy day getting ready for my party, having the party and getting over the party. But it was a mixed day. I really enjoyed my party, but I have a upset tummy that has made me feel sick for the past couple days and today I felt terrible for a lot of the day. I woke up not too early and had a banana milkshake for breakfast, then we watched the DVD of my Oscar Party, this was the first time I had seen it and I really enjoyed seeing everybody, although it made me slightly sad as I’m missing my family and friends. Thanks Pat, the DVD is bill. Some of my morning meds make me sleepy, so I had a little nap after the video. When I woke up, Dad and I decorated the room – it looked brilliant and everybody on the ward commented on how well it was – so thanks to everybody who sent me cards, balloons, bobbins, pictures, posters, flashing necklaces, tea shits, stickers and ceiling decorations. The party started at 2, we had find the leprechaun and biscuit painting as well as dancing and singing – check out some of the photos (I will have many more, but my dial up internet connection is too slow. I have to say I thought the physiotherapists were the best.. but I shouldn’t say that because the voting is on tomorrow. Thanks Paula for helping me with the party and i-factor. I had my dinner after the party. I was too tired for my walk so I just had a rest. The doctor came in later in the evening and told me that they are taking me off the rest of my immune suppression drugs so as to encourage my graft to improve. I hope it does, I’m at 55% donor’s cells and 45% of my own. I watched friends, near the end Sanjay, one of the doctors, came in to say Happy St Patrick Day and he and I had a singing competition on the Wii. He won, but I was very tired – thats my excuse. Thanks to everybody both here on the ward as well as all the good wishes that I got from home. I miss everybody. That’s all for now, I’m very tired and I’m going asleep. Love Naoise.

Day +32

Hi all, wow today was a busy busy day, especially compared to yesterday. The day started well with load of letters. Thanks to Aisling & co, Nuala & co, Corrigians. The nurses were very impressed with all my post and with my room. I haven’t put up my St Patrick decorations yet, but the room is looking great already. Tomorrow morning dad, Paula and I are going to really decorate the room. The party is on at 2 o’clock tomorrow afternoon and I’m very excited. I want to see how many St Patrick Day messages I can get on my blog, so please everybody if you would like to join my party then send me a message. Back to my day, I had a fruit milkshake for breaky and then I was very tired, I think it is because I’m back on one of my anti sickness medicines and it makes me very sleepy. After a nice sleep my teacher came in and we did some English, well only a little bit because I was sick... sorry teacher, and this is my second accident with this teacher, I hope she doesn’t mind. My doctor came in and we had a long chat, then my physiotherapist came and we did some exercise. For dinner I had some homemade chips, carrots, garlic and gravy – I think the gravy is the discovery of the week. Then the dietarian came in & we had another long chat. Can anybody guess what was the result of our chat was? (Answer on tomorrow’s blog – hint in the photo.) By now it was time to get ready for my walk, it was nice out just a little cold. We came back had a shower & a rest. I had my tea late, but I was only starting and I got sick... again... I hope this sickness goes soon as it is horrible. We watched Friends. So a very busy day. Didn’t get my blood results, but I’m sure I’ll get them tomorrow. Nite note for now, love Naoise.

Day +31

Hi everyone, today was a very quiet day, it is always quite here at the weekend, but especially on a Sunday. I had a good night sleep, but I woke up tired. I had a banana milk shake for breakfast, it was lovely but i ate it too quickly and I got sick. I went for a sleep then and woke up much better. I had my dinner early and ate a big dinner. Aine called and we had a great chat. Then I got dressed and went for our usual walk. The sun was shining and it was a lovely day, so we sat on one of the benches outside the front of the hospital and watched the world go by, I also had a bar of chocolateJ. I was very tired when we got back so I had a little rest. I had my shower around five, it is great that I’m not on my drips for the afternoon as it means I can have my shower on my own. Then it was time for Friends – still brilliant, Rachel found out, for the first time, that Ross loves her, very exciting. The semi final of dancing on ice is on this evening, so I’m looking forward to that. I suppose we watched a lot of tv today, but as I said the weekends are very quite around here. Thats all for tonight, lots of love Naoise. PS Many thanks to all my friends for your great mails I will try and reply over the next couple of days.

Day +30

Hi everyone, sorry this posting is late, but we weren’t up to updating the blog yesterday evening. Mam went home and dad arrived. Dad brought loads of St Patrick decorations for the party – thanks to Jimmy & Una; Lillian; Audrey & Chrissy for all the decorations, we are planning on putting them up on Tuesday morning. I have an invitation to all the nurses and doctors posted on my door outside. The party is planned for 14:00 on Tuesday, should be great fun. Yesterday was ok, I did all the usual stuff, had breakfast, dinner and a small bit of tea. Dad and I went out for our walk around 4 o’clock. Neither of the shops were open so I couldn’t get a treat, it was also really really windy. After the walk I had my shower. I let dad watch the rugby but he was shouting so much that I had to send him to the parent’s room & then I could watch Friends. Later Aine & Laurna called for a chat, it was great to talk to both of them. We also watch Red Nose day Let’s Dance and Ant and Dec – which I love. That all form Newcastle, till tomorrow, TTFN, love Naoise.

Day +29

Hi Everyone, today was a another good one. I woke up had a toastie cheesey for breakie. Then the teacher came and we did Science in the kitchen and I learned how a microwaves and dishwashers work. The Andy came and I did my Wii, its Friday so I had to record my scores. I have beaten my scores by loads since last week and I did over 4 and a half minutes on the bike pedals. After that Paula came and we made a Paddy's Day cup and plate. Plans are going well for Tuesday, planning to decorate my room as Dad is bringing some stuff over with him. I can't wait to paint my nails Green White and Orange! I had toad in the hole for lunch which was sausages and yorkshire pudding, the sausages were really nice. After that we went for our walk, I got a Mars Bar on the way and we sat on a bench. The doctor is giving me more anti-sickness drugs which seem to be working. I was only sick once today! My neutraphils have gone down to .82 but that is without my booster medicine so its expected. If my blood levels drop tomorrow again I'll get my booster meds. Me versus the donor test will be done on Monday so we should have the results on Tuesday for that. After my walk, I had my usual shower, had my dressings changed and watched friends. The TV will be good tonight as its Red Nose Day here in the UK. Mummy is going home tomorrow and Daddy is coming, we gave him a list of things to get! Hope Sibheal and Afic had a great party and wish I was there!!! Thanks to Oisin and Sadbh and Bridget and Tia for the lovely cards. Talk soon, love Naoise... xxxx

Here is Naoise Interview on 98FM

Hi everybody,

just in case you missed me on 98FM, Trina has kindly sent me a copy - thanks Trina. It was really exciting to be on the Radio and I love listening to myself :-). Bye for now, Naoise.


http://www.4shared.com/file/92662623/858819cb/Naoise_McGrath_-_Newcastle_Interview.html

Day +28

Hi Everyone, today was so so so much better than yesterday cos I didn't get sick at all!! I felt a bit sick a few times but I was grand. Today I had a waffle for breakfast, then the teacher came and we did some English. We wanted to go for a walk so mum ran into town and got me some clothes, she got me a pair of pink skinny jeans and some t-shirts and a jumper. When mum got back we discovered the security tag was still on the jeans, Mum was wondering why all the alarms were going off in every shop she went into! Paula and Andy came while mum was in town. I did all my Wii and physical exercises. Then I had a bowl of rice crispies which weren't very nice so I had a packet of crisps instead, its great eating whatever you fancy! We went for a walk outside today we bought some chocolate buttons and I ate the whole pack. We couldn't sit on a bench to watch the world go by cos there were all soaking wet it had been raining. We met some of the docs and Andy on our travels so we stopped for few chats. I was so so tired when I got back but have to have my shower.. that woke me up a bit. Then mum changed my line and then I had some mini chicken fillets for dinner. The doc came and is happy with me. My neutraphil count today is 1.72 which is not bad as I didn't have my blood booster medicine. The best news of the day is that my anti-rejection drugs have been halved which means I am not hooked up to any machines from around 1 to 8! It means I can actually go to the bathroom!! I can also give myself my medicines through my tubes.. although I spilt a bit on my bed and started screaming and gave Mum the fright of her life... she said I was a bit of a drama queen.. I wonder where I get that from :-)...!! Thanks to Collete, Dara and Fred for the lovely card and the fake tatoos... we're giving the nurses the 'kiss me I'm Irish ones :-))! Thats all for now... TTF Naoise xxx

Day +27

Hi Everyone, well today the big news is that I went outside!! I woke up after not a bad nights sleep. I'm getting used to being off the drugs that make me sleepy. The mummy read to me for a while, then I had a ham wrap and finished watching our DVD. Then I was so excited waiting on my tranfusion to end so I could go out. I got dressed but then felt really ill and got sick but the good thing was I managed not to get any of it on my clothes as they are the only set we have here in Newcastle!! It was so weird wearing my skinny jeans again and the strangest of all was wearing socks and shoes..!! We set off and walked out to the hospital entrance.. not a sore ankle or hip pain in sight. We decided to bring a packet of crisps, so we sat on the bench and ate them. Then we walked around the side entrance back into the hospital. By that time my legs felt a bit wobbly because I was tired. Then when I got back I had a bit of chicken for lunch and then guess what I was sick again! Then Paula came and told us there was a helipcopter outside so off we went again and sat on the bench and watched the helicopter it was huge!! It got a bit cold then so we headed back to my room. Andy came and I did my Wii excercises, he let me off my physical excercises because I had been for a walk. Yay! Then Paula came and we finished our invite to the party. We just have to hang it up outside now and we're done. Then I had my shower, then guess what happened.. I was sick again!! After that I felt better and had a cheese wrap. I didn't do very well taking drinks today so I have to have a drip with some water in while I sleep along with my feed. Yesterday I had some medicine to boost my blood levels up so they are good today, my neutrophils are 2.17. Will hopefully have the donor versus me test results again this week so fingers crossed my percentages will be up again! I can go out everyday now between tranfusions and however many times I like. When I came back I took off my ugg boots and socks and I had a rash because my feet are not used to them, it was a heat rash! I watched my usual double bill of Friends and then Mummy learned how to change the dressing on my line. I'm very nervous getting my dressing changed and never seem to get used to it. Mummy did well though and I will let her do it again tomorrow if she behaves herself :-)). Mummy thought she was a surgeon when she put the gloves and the hair net on. TTFN Love Naoise xxx Loads of thanks to Nana for the Paddys Day Card..thanks to Marie from the clontarf Credit Union for her card and thanks to Daddy, Bridget and Aine for my mini card! I love getting post from home. TTFN love Noaise xxxx Oh and very funny Brian Byrne for your joke about me being a car park attendant now!! xxxx

Day +26

Hello Everyone, today I got the best news ever!!! I am allowed out into the hospital grounds tomorrow!!! I can't believe it, it was such a surprise as my cells versus the donor cells went up which is not good. I need to have mostly the donor cells in my body and not mine. They went down to 51% but am now at 61%. I am so happy it will be really strange to go out and it will be really strange to put clothes on!! Today started off as normal, had cornflakes for breakie, watched a DVD. Then Andy the physio came down and we did some of my excercises he is coming to the St. Paddy's Day party so at least there will be a boy there now :-)! Then Elizabeth the teacher came and we did Maths during which I was sick! Sorry Elizabeth. Mum went into town and bought me a cool green tracksuit for next Tuesday! Its gone off to be washed lets hope it doesn't shrink!! After that Paula came and we made a fab necklace that Mum wants to borrow. I had a cheese wrap for my tea. Today seemed to fly by and I'm now so tired but so excited! Will let you know how I got on!!! Love Naoise xxxxx

Day +25

Hi Everyone, today was a good day and I didn't feel sad at all. I got sick in the morning but felt much better afterwards. The teacher came and we did some maths. I finished my Nelson Mandela project and its now on the wall. Mum and I watched the second part of Legally Blonde. We played at bit on the Wii again, Mum did her jogging she is trying to burn off all her calories and I'm trying to put them on :-). We have a competition every Friday so we are all practising hard to beat each other. The teacher came again in the afternoon and we did some more maths, easy fractions this time it was grand. My bloods are down again Neutrophils are 0.82, I'm getting another boost to make them go up tomorrow. My platelets are going up on their own, they are now 107! A little boy called Dylan who has been on the ward for +49 gets to go to the half way house tomorrow, hopefully we will be there soon too!. It would be sooo great I'm itching to get out of here, even to walk down the corridor would be fab! I did my usual daily ritual had my shower and watched Friends. I ate some chicken for lunch and then I got sick but felt well enough to have a bowl of rice for dinner. All this getting sick is not putting me off food at all! I lost a bit of weight today so I have to start eating more and drinking lots of milk. I got a lovely surprise in the post today, Bridget's friend Caitrin sent me a package, it was make your own St. Paddy's Day card. Its great as I'm making one for all the nurses and they are gonna be so cool. Thanks Caitrin,the cards you send are lovely too!! Am so looking forward to my party, Westlife are going to be played all day long and we are going to have digestive biscuits with green icing..! And Lisa the nurse from Scotland got me some green and orange nail varnish.. can't wait to paint my nails. She is the best!! Gonna log off and watch All Stars Family Fortunes, its on every night and I've become a bit of an addit. Lots of Love Naoise xxx

Day +24

Hello Everyone, today was much better than yesterday. I wasn't half as sad and I also wasn't very sick. I slept OK but woke up at five again!! I had cornflakes for breakie, watched the DVD Legally Blonde 1, we are going to warch Part 2 tomorrow. Then we played Wii fit. I did some skiing and mum jogged, she was ready to collapse afterwards :-)! We played a bit of golf and croquet. Then Paula came and we made bracelets and I ate a bit of chicken for dinner and some noodles for tea. I'm going to have my feed while I'm sleeping. My weight went up a bit today which is great! Then had my shower which I hate! I watched my usual two episodes of Friends and am gonna watching Dancing on Ice. We decided today that I will make one huge invitation to my party on St. Patricks Day and stick it on my door. Everyone that comes to the party has to sing an Irish song or do an Irish dance, we're calling it the I-Factor (Irish Factor). We'll see if any the nurses here in Newcastle have got talent!! The nurse who has been looking after me all day is going to sing When Irish Eyes Are Smiling. I have to get something green to wear so I'm sending Mummy off into town to get me something, along with a long list of the foods I fancy! I got some medicine to boost my blood count and my Neutraphiles are 2.4 today! Talk to you tomorrow.... I still haven't done my homework......xxx

Day +23

Hello Everyone, Today was hard for me. I think its because I am now off two of my anti-sickness drugs so coming off them has made me sick. On top of that am also off some the meds that relax me so my body has to get used to that too. I'm not sleeping at all well at night and I'm getting very upset during the day. I miss everyone at home so much. One of my lines was blocked and I was really worried but Lisa worked her magic and got it working again, I was sooo releived. My neutrophil count is down again today they are 0.41 so the doc said she was going to give me a boost of medicine that will make them go up again. She said I was doing really well. Mummy came this morning and Dad went home. Mummy brought Wii Sing It with two sets of songs Hanah Montana and High School Musical 3. She als brought some DVDs so that cheered me up for a bit. We sang High School Musical and some Hanah Montana, we have two microphones so we did a duet. I won :-)! We watched 27 dresses and then Paula came in. We finished of the caterpillar and we are planning a huge huge St Patricks Day party in my room. I have to start working on the invites and we have some really exciting things planned for the party... so watch this space. I had my shower, did a bit of my jigsaw and had some chips for my dinner. I have to start eating a lot more as I'm losing a bit of weight. Then watched Friends and am going to watch Ant & Dec. Did everyone here me on the radio yesterday? They played it again today too!! I would love to hear it! Am really tired so hopefully will sleep tonight! Love Naoise oh just remembered I still haven't done my homework :-(!! xxx

Day +22

Hi all, another night which I didn’t sleep. Because of my medicine, feeding and tube problems, I was woken up at 22:00, 12:00, 2:00, 3:00,4:00, 6:00 & 7:00 so with all these distributions it is hard to get a good night sleep. Dad stayed last night and we have spoken with the doctors and they have changed my schedule for tonight so let’s hope this works. Breaky was a waffle and Camp Rock movie. I had no teacher or play nurse today as they were all off so my day was kinda of long that is until lunch time. Then Sue Lawlor from Temple Street Fundraising office called to ask would I do an interview for Dublin 98 FM CARE4KIDS Radiothon. I was really excited and we had to wait till 13:45 when Trinna from the Radio station called. I was very nervous but also very excited and I enjoyed answering all her questions. The interview was played this evening about 6:15 and will be on again tomorrow – don’t know when. It really cheered me up and brightened my day. My physiotherapist came in with a Wii Game competition. I have to practice for a week and then see if I can beat my Dad by then end of the week; it was good fun to practice. Some of my medicines are being reduced, which is a good sign, but I’m not feeling great at this stage. I really miss everybody. Nite nite, Naoise.

Special Notice

Hi Everyone

Catch me on 98fm at 1.45 today for a live interview from Newcastle!!

Love Naoise
xxxx

Day +21

Hi everybody, today I’m here five weeks and today was an up and down kinda day. I’m still not sleeping that well and I wake up very early, this morning I woke at 6 and I couldn’t get back to sleep. I had some melon (which I sent Dad out for yesterday) and some toast for breakfast. Then we had our musical wake up movie, this morning we watched High School Musical 3, which was great. My teacher came in and we did Nelson Mandela timeline which was interesting. Amanda, the play specialist, and me made a cool flower. I had some waffles and fish fingers for dinner followed by a game of Wii. I got my first St Patrick Card today from Aine, my little sister; it is a brilliant card with her own writing on it. I stuck it up on my wall, where it looks great. I hope I get a couple more cards!. That’s all for now, Friends is back from the start which is brilliant. Thanks to everybody for you mails, texts and comments it is lovely to receive them and it does cheer me up. P.S. Amanda enjoy your holiday. Nite nite, Naoise.

Day +20

Day +20
Hi everybody, today was a hard day. Again I didn’t sleep too well and woke early and tired. I had some custard for breakfast, because when you feel like it, you need it ! Dad and I watched Greece the movie and sang most of the songs, which kinda cheered me up. My teacher came in this morning and we did some history and geography which was ok. Tomorrow we are going to learn about Nelson Mandela. I had more potatoes and carrots for dinner, which were just as good as yesterdays. After dinner Amanda the play nurse, came in and we made a lovely paper flower, which we are going to hang on the wall tomorrow. Then we had a mad couple of moments. We closed the current to the corridor, put on my ipod really loud and the three of us danced around, it was great fun and cheered me up a little. My dad is such a good dancer (not), even the nurses who came in to see what the noise was about laughed at him. Clare and a colleague who is doing his dissertation on the use of the Wii for recovery came in and we did some exercises. After all that I needed a shower. The good news is that E4, which showed the last episode of Friends yesterday, has started right back at the beginning. I love Friends. My bloods continue to be good but I think I’m going a little mad being in ‘stuck’ in this room for so long. I think this is making today very hard, let’s hope tomorrow will be better. Thats all from Room 8, Ward 23 of NGH. Nite, nite, love Naoise.
PS – thanks for everybody for your kind mails and messages.

Day +19

Hey everyone, another hectic and good day. I woke up at 4 this morning and struggled to get back to sleep so when dad came in at 8 I was very tired. You’ll never guess what I had for breakfast.... yes I had weatabix!, it was only ok so tomorrow I might have a pancake . We then watched Hairspray the movie and I sang all the songs, that really woke me up and put me in good form. I felt hungry then and had a full bowl of chicken soup. Amanda came in around lunch time and stayed for ages and we made a really cool bag – to add to my collection. Clare came in then and we played Wii Fit and did a couple of exercise. Dad set himself up on the Wii but it told him that he was obese, which he wasn’t very happy with, also he wasn’t very good on the wii and both Clare and me had a good laugh watching him trying to do some of the challenges. Tomorrow we are going to have a Wii tournament with Clare, dad and me – should be great fun. My teacher came twice, but I was busy each time so I had no school today which was very sad. One of my doctors (you can see him in the photo) came early this morning to tell me that my bloods continue to improve and they are all very happy with my progress. The best part of the day was my tea, I’ve been living on frozen food for the past month and this evening Dad made some fresh mash potatoes and fresh carrots with butter it was absolutely lovely, I really missed my fresh food. Mam called and I was able to talk to Harvey and Gissmo, who had loads of news. Then Bridget and Aine called and Aine told me a very funny joke which made me laugh. Now for the Temple Street technical people I thought you might be interested in some of my blood results: Platelets 36; WCC 2.6; Neut 1.87; Lymph 0.12. Well that’s all for now, it seems that we have a good crowd for the jump I’m off to sleep now, nite nite. Love Naoise.

Day + 18

Hi everyone, Mondays are always very busy and today was no different, I think it is because the weekend was so quite around here that makes Monday seem so busy. You’ll never guess what I had for breakfast, yep a pancake. Dad and I played Wii for a little while, then the teacher came in and we did English, which was ok. I had a little break and then Paula came in and we did ‘marbling’ painting. I had been talking with my Dad earlier and he agreed to do a parachute jump with me when I’m 18. I got Paula to also agree, I even got her to sign a contract – so she has to do it now  we will do it for the bubble club (the charity that supports the Bone Marrow Unit here in Newcastle). I sent Dad to the shops (which are in Newcastle city centre) to get some food. I fancied some rice and soya sauce but I wasn’t sure that I was allowed it, but by the time he came back Paula had confirmed that I could so I sent him back to the shops. Dinner was yummy, tea was fish and chips, but the fish wasn’t great. My physiotherapists came in and we did my exercise on the Wii Fit which was brilliant fun, my legs were wobbly by the time I was finished. I also watched a little bit of Hairspray, had a shower and watch friends, so it was a very busy day. The doctors continue to be happy with my progress and my bloods (neutrophils are now 1.15) are improving. So a hectic day, I’ve just had my evening medicine and I’m going asleep now. Thanks for all the comments, I really love getting them. Nite, nite, Love Naoise

Day +17

Hi All, today was a good day, I woke up about 8ish and had a little rest before breakfast which was three pancakes, 1 with cheese and the other two with butter, they were yummy. Then after another little break I had a game of Wii Music, which I love and I’m getting better at. Then I had a bowl of custard, which dad overcooked, but it still tasted good. Amanda came in at 1 and we started to make a really cool bag, we have to finish it off tomorrow. Then I had my dinner which was some tuna pasta bake, it was delicious but very heavy. Dad and I then had a movie afternoon and watched Hitch which was a great film. All my wires and connections were taken off so I was free to move around and have my shower. Dad and I played a game of darts – which I won again. Tonight I’m having a blood transfusion to help with my energy. As well as the blood I have to have a load of other medicine in the evening and tonight a funny thing happened. I had my orrisapan which made me feel drunk and I got all giddy, then I did a funny thing... I told the two nurses who where setting up my medicine that my dad fancied one of the other nurses... opps.. I must of been drunk ! Now we are watching Dancing on Ice and then I’m going to go off to sleep because I’m getting very tired.

Day + 16

Hi Everybody - Today is Saturday and Saturday is hand over day. Mum and Nana have gone home - hope you had a rest Nana and thanks for staying with me ;-)!. Dad brought some great things over, he brought the Wii from home and a great picture from Aine plus Aine gave him a hat for me - to keep my head warm. Dad and me played the Wii most of the day - we played Wii music and Wii Fit, they are brilliant games (thanks Gaga). My apatite is getting better; I had pancakes for breakfast, lasagne for lunch and a plate of chips for tea. The nurses’ love when I eat as I don't have to have a feed through my tube. I stayed awake all day again but it's now 7 o’clock I'm very tired and I think I'll missed Ant & Dec!! Speaking of missing, I'm missing everybody at home. I love the comments and the mails they really help to cheer me up.