Day +76

Hi all, today has been a very quite day. Last night I was up 12 times between 10:00 and 7:00, which for me is not too bad, but I still felt very tired this morning. For breakfast I had a very small banana, raspberry, ice cream and milk milkshake. Then I had a few naps, in between the nurses and doctors coming and going. I haven’t fancied much else to eat as my tummy has been feeling quite sick though out the day. We are still waiting on the full virus report from my biopsy. It was due this evening, so lets hope it arrives tomorrow. Anyway Prof Cant (the boss) has already decided to reduce down some of my immune suppression medicines so as to encourage my own immune to go out and fight those virus. I spent the afternoon having naps and watching HSM 3. Then it was Friends. We are struggling to find something good to watch now for the evenings. Dad said something about Man United, what ever that is, but I just ignored him and watched Sweet 16. We are going to watch the Apprentice this evening. Before I go I got great news this morning, my Aunty Audrey had a little girl last night who she is calling Zoe, I love that name. There is a lovely nurse here called Zoe, in fact she is looking after me tonight. High little Zoe, I can’t wait to see you. That’s all for tonight.

Day +74 and +75

Hi All, Sorry I didn't update my blog yesterday but I was very tired and a bit sick. Emma came again to visit, we chatted on the phone for a little while but then I got tired and had to go back to bed. Thanks so much to Barbara and Emma for coming over. It really lifted my spirits and it was great to have a chat and catch up on all the gossip. Still haven't managed a nights sleep :-(. Am still up all the time and am on some new drugs which are giving me spasms in my legs and back, only at night! Yesterday I didn't eat much and watched a bit of TV and had my visit with Susan who is from the psychology department, we made finger puppets and a frame. I slept on and off for most of the afternoon and watched the final of Hells Kitchen. This morning I ate a little bit of a smoothie for breakie, a few chips for lunch and a tiny bit of pasta for tea. I have two pieces of big news, yesterday I got a card from my donor!! It is a lovely blue card with yellow flowers that has a verse about things growing, I was thinking it was a sign that my stem cells are growing! I am going to make a card with Paula to say thanks and send back to my donor. Its anonymous it just said ‘from your donor’. The second bit of news is that I got the first bit of my biopsy results this evening, its good news my GVHD is now gone along with my rash. So this confirms the problem with my gut is an infection. It’s a bad infection and we have to change my drugs around now as I don’t have an immune system to fight it and my blood levels are very low. The results also showed that it had healed a bit from the last night time which is really good news. Its great to get a bit of happy news for a change! This is the best news since March! Because my neutraphil count is so low I still feel rubbish so hopefully in the coming days and weeks I will begin to feel better again right now I am tired and sick all the time. I was so sick the other night that I threw up the tube in my nose. So now I am trying to swallow tablets in the hope I won’t have to get it back in again. So the Stem Cell treatment in Holland actually worked cos it got rid of my GVHD so Jimmy & Una you were right, the tulips were growing at the same time as my cells. Thanks to Triona in Temple Street for my fab westlife photos.. am planning to put them on my wall just have to find some space, am dying to put them up they are really good and for my High School Musical book!! Thanks to Robert who works with Mummy for my arts and craft stuff, and for the holy water from Lourdes.. it has hopefully worked!! And thanks for taking Mummy out to dinner J Also Thanks to Paula, Sadhbh and Phil for the books!! We are wondering what to watch tonight as Hells Kitchen is not on, I might have an early night as I am so so tired and will be up all night yet again..!! Lots of Love Naoise xxx

Day +73

Hi all, today had good and bad parts, some really good and some really crap. Again I didn’t have much sleep and was up over 20 times, so as you can guess I’m wrecked. Today I had to have another biopsy, which is my 4th biopsy since I came to Newcastle. They don’t get any easier; in fact I hate each and every one of them! The only positive thing today was that it was Sunday and I was supposed to be first on the list, which makes a change from being last on the list. The ambulance came at 9:00 and we were at the RVI by 9:15. I went down to theatre at 11:25 and was back in my room at 12:30, feeling sad and sore. We got back to my own room by 14:00, which was mush better than my previous trips to the RVI. When I came back my room had been cleaned from top to bottom and looked great. My bed was made with my new duvet cover (thanks Audrey and Chrissy). Then Emma arrived. I was delighted to see her as I hadn’t seen any of my friends since the end of January. Emma had to stay outside the room but we have a phone where she could sit on one side and me on the other. It was just brilliant to be able to talk, something so simple but so brilliant. We managed to talk for about 40 mins or so and then I was wrecked. Emma and her mum are staying in Newcastle tonight and Emma is coming in again tomorrow morning. I’ve put a photo of the two of us, it might seem strange talking through a door, but it is my normal. Then I had a rest and Amanda came in for a little while. I had another small rest before catching the 20:00 version of Friends after that I’m going to watch Hells Kitchen. That’s all for tonight. I know I’m going to be up for most of the night as I was all the other times I had a biopsy. Nite, nite, love Naoise. PS to all my class friends, thanks to everybody for the cool cards and presents. I miss you all loads. Also, sorry I haven’t been able to respond to all your mails, I will at some stage, but please keep sending them.

Day +72

Hello Everyone, well no news really today, had a horrible night again was up about 17 times!! The doc has decided that I need to have another biopsy on my gut. Everything else is fine, my skin is getting better, my temperature and blood pressure is fine. I haven’t need oxegen for the last two nights either. My bloods are very low and my gut seems to be getting a bit worse. Tomorrow morning at 8.00am we are going to be picked up by ambulance and will go to the Royal Victoria Hospital for a biopsy. Its really early so I should be home sometime before lunch with a bit of luck. I cat napped all morning cos I didn’t get any sleep. I had some oxtail soup for my lunch. I got a new mobile phone that actually works here! My old one didn’t work at all and no one could call or text me but now they can!! Amanda came at two and we are making window boxes, we painted straws to make the stems for the flowers. I tried to nap in the afternoon too, I had some pasta for tea. I’m trying to stay awake for Hells Kitchen, I haven’t missed it yet!! I’m excited for tomorrow cos Emma is coming. Thanks very much to Ailbhe, Tara, Lucy, Isabel, Sophie, Euan and Ella for the lovely cards and pictures!! Its great to get them!! I was a bit sad again today as I’m still missing everyone so much. Hopefully when we get the results of the biopsy they cos can give me the right medicine to fix my gut. Will let you know how I get on tomorrow. Lots of Love Naoise P.S my new number is 00447707515420 xxx

Day +70 & +71

Hi all, sorry for not updating my blog yesterday but we just ran out of time and energy. Wow past 70 days, can’t believe it, wasn’t aware that I was signing up for such an ordeal, but there you are. The doctors tell me that I’ll get better and that I’m getting better, it is just hard to believe them, sometimes! Yesterday was an ok day, not much happened. The night before we were up about 9 times which meant I was kind of tired yesterday. Neither Paula or Amanda were in yesterday or today which is terrible because I like my play time with them. The big news yesterday was that I had my stitches from leg removed which was good. I didn’t have a dinner as such, but I had two banana and raspberry smoothies and a funny thing happened. Each day they take a sample of my blood for testing and yesterday afternoon it showed that my potassium levels were high and they didn’t know why – that is until I mentioned the bananas Ha Ha. Then there was today, let me give you an example of my night, last night I was up at 10:30; 11:15; 12:30; 1:15; 3:15; 3:40; 3:55; 4:40; 5:40; 6:20; 6:50 and 8:20 and then my day began. You can see from this why I’m often tired. Some nights I’m chatty and some I just want to get back to sleep as fast as I can. Funny but today I wasn’t as tired as I expected. I had another smoothie for breakfast then we watched Annie, which is great. My swelling has gone right down and my ankles almost look normal. After the movie the teacher came in and we did some work, which was very good. Then it was time for our afternoon nap. I had my now normal dinner of salmon, potatoes and parsley sauce. Dad over cooked the salmon. He also got a new radio – which he says only plays sports, lucky dad!. After dinner we caught Friends. Aine called later full of news, it was great to talk to her. Then we are watched Hells Kitchen. I wonder would they think of running Hells Bone Marrow! That’s all from Newcastle, nite nite Love Naoise. PS thanks Audrey & Chrisy for my HSM duvet. Hi little Peter – welcome to my blog & I can’t wait to see you and hi to little Ronan.

Day +69

Hello, well the big news of today is that I slept from 4.30 this morning until 7.15!! This is the longest I've slept in ages.... still feel really really tired though and was sad all day. I'm missing everyone so much and nothing seems to cheer me up. Some good news though, rash still fading, I only needed oxegen half the night, not going to the loo as much, some of the swelling in my feet is going and I lost a bit of weight today which is good as I'm carrying so much water I had put on loads. I woke up early and then cat napped for a bit, didn't feel like eating at all. Elizabeth the teacher came we did some computer games which was good although I am very shaky at the moment it was hard. Then Amanda came and we are making window flower boxes for my door. Then Daddy and me made some bread, I ate a slice of it which was very nice, thanks Dad! My tummy is giving me a bit of trouble today. After that I had another nap and when I woke up Mum and I did some acrillyic painting. Cos my hands are really shaking badly today and it was hard to paint, Brenda the nurse noticed me shaking and did a test and it turns out I am absorbing too much of my medicine called Tackralimus and so I had double the amount in my body than I should have - yikes :-)! I'm off that medicine for a while now so hopefully the shaking will stop and I'll be able to paint and do things properly. I'm going to try and stay awake for Hells Kitchen but I feel a bit sick and a bit tired so I don't know if I will last. Una and Jimmy, I remember the white flowers Mum got you for Christmas! I really hope you are right and they grow along with my stem cells, I think it is a sign, let me know how they do!! Nite Nite Love Naoise xxx Oh good luck Mary I think the bump is coming out right now.. and good luck tomorrow Eileen on getting rid of your bump!! Love Naoise xxx

Day +68

Hi Everyone, well last night didn’t have any drama but still no sleep :-(. I’m still up on the time going to the loo constantly so no sleep again. Today am so tired again, I don’t really know what it feels like not to be tired anymore. I didn’t eat anything this morning, had two blood transfusions and one bag of platelets for breakie :-). The good news is my rash is definitely getting better. I still have tummy aches though but am taking my codeine every four hours to help with them. I felt a bit hungry this afternoon and fancied a chicken wrap, we had no chicken so Mum went to the supermarket and I had chicken kiev in a wrap, it was nice and I managed to eat half of it. Then I had my shower, it was nice standing under the hot water so I stayed there for a bit. Then I got back into bed and fell asleep. I woke up and I need oxegen again, when I sleep I’m not breathing properly. I have to keep my mask on all night and sleep with it tonight which is a pain. The clown docs came today but I wasn’t in the mood. The physio came down and we did some easy exercises. Paula or Amanda wasn’t in today but Amanda is in tomorrow so looking forward to that. I’m really really tired now and am gonna to asleep. Nite Nite love Naoise xxxxx

Day +67

Hi all, well last night might have been ok, I only had to get up about 8 times, but then my oxygen levels dropped and caused loads of activity. Lisa was on duty last night and was brilliant. The doctor was called and it was decided first of all to do get a chest x-ray but that showed up all clear. Then around 3:00 they decided that I need some oxygen to help my breathing, so as you can see a very hectic night. Mondays are always very busy here, it’s like everybody returns from their weekend off and are full of energy and keen to do stuff, and do stuff to me. It seemed that all the staff plus Mam and Dad were in my room at one stage. I managed to get back to sleep around 10:30 and slept till about 1:30 with only a couple of distractions. Then Amada came in, no matter how bad I feel I am always able to get up for Amada and Paula. We did some work on my laptop (more of this later), then physiotherapist came in and we did a few excises. Claire, my other physiotherapist had an operation on her knee and is out of action – get well soon. Then I got dad to make my new favourite dinner of fresh salmon, mashed potatoes and parsley sauce on top of it all, it’s pretty wonderful. I ate most of it and then got straight into bed and went asleep for nearly 3 hours. I woke up in time for Friends and my new cool program – hells kitchen, which I’m watching now. So nite nite from Naoise in Newcastle.

Day + 65 and Day +66

Hi All, Am very tired today and I really miss home and all my friends and family that are there. I didn't do that much today. I had an OK night, I was up about 8 or 9 times which is really good for me. I am on lots of new medicines cos I one of my viruses has managed to get into my blood which is not good. Paula came today and we did some silk painting which we have to finish off. Mummy is doing up my room for when I get home and she got the Next and Argos catalogues which I love looking through. I also got some paints and canvases and will hopefully be doing some painting this week. My bloods are low so I get blood and platelet transfusions every day. I call them my orange juice and ribena transfusions :-). Dad found frozen aromatic duck in the supermarket, it was a bit rubbery but was great to have some duck! I had a mini corn on the cob too, I'm getting more steroids than normal so I'm hungry all the time. I had a bit of custard after that. Tomorrow is Monday and its a busy day for the nurses as its swab day. I'm going to watch Come Dine With Me and Hells Kitchen tonight and then try and catch up with some sleep. I miss everyone so so much and really want to be at home right now. My friend Emma is coming over to see me next week, she will be able to talk to me on the phone and see my through the window I'm so looking forward to that! Lots of love Naoise xxxxxx

Day +64

Day +64
Hi All, unfortunately I had another horrendous night, at one stage I was up every 15 mins. I am absolutely exhausted today and really puffy from all the fluids I am getting. . I didn’t really feel like eating at all today but I tried to eat some brown bread and soup. I had my shower which was very painful on my rash L. Mummy and Daddy are both staying here so they can take turns at getting a rest at night. Today my blood counts are not good again, I’m having another platelet and a blood transfusion today. The doc came this morning and measured my belly which is 74 centimetres because of the fluids I am getting I’m getting rid of quickly enough. I also had really bad pains last night so the doc said I can have a container around my neck with a button on it which has morphine in it and when I get a pain I can press and it will give me some relief. I don’t want it and said that I would have think about it, I really don’t want it cos it will make me sleepy for now I think I would rather the pain! My blood pressure has been going very low too and I have to get it taken now in both arms and sometimes my legs!! On top of everything I am also getting a high temperature during the day and night, nothing seems to be going right now!! I’m still managing to watch friends everyday though. Amanda has been sick this week so no play nurse :-(. Paula is back tomorrow though and is in on Sunday too so looking forward to that. School starts again on Monday but not sure if I’d able for it, we’ll see. Right now we are waiting for the stem cells to do their stuff and make my gut better so fingers and everything else crossed! Thanks for all your comments. Lots of Love Naoise xxx P.S: Mary did the bump come out yet?? Xxx Oh and thanks for the letter Emma it is on my wall!! xxx

Day +63

Hi all, this is the second part of my Day +63 blog entry. As I mentioned last night was crap, but today was very quite. I briefly woke up early this morning but then went back to sleep, in fact I slept until 15:45 in the afternoon with only a few minor interruptions. Thanks Anna (my nurse for today) for keeping everything going while I slept. As I mentioned last night my blood pressure dropped, to help it, I had to have lot of fluids which have made me very puffy and bloated. When I woke up I was very hungry, I hadn’t eaten much over the last couple of days. I had some salmon and pita bread which was lovely followed by some jelly and raspberries and finally some mash mellow like biscuits. All of this tasted great. Then it was time for friends followed by the Apprentice, which I missed last nigh and I love. That’s all for today, lets hope tonight is ok. Nite nite from Naoise in Newcastle.

Day +62 & morning of +63

Hi all, the last couple of days have been horrendous and it started to get bad on Tuesday night. Because I was heading off on Wednesday to Holland I need to get as much of my Wednesday drugs administered on Tuesday night along with my usual night drugs and this took a long time. To add to this my palates and blood count dropped and I ended up having two palates transfusions and one blood transfusion. Having all of these, along with my bouts of toileting meant that Dad and I were up the full night. We left Newcastle General Hospital at 8:00 in an ambulance for the airport. The drive only took about 15 mins as we ‘blue lighted’ all the way. However we need not have rushed as the airport was surrounded in fog. You remember the plane I went to Holland the last time, well this time it was a similar one, but had leather seats and looked much cooler, but it was still quite small. Small planes don’t have the same equipment as big planes and we had to wait till the fog cleared enough and that took 3 hours. The flight to Amsterdam took 1 hour and 10 mins. Jane, the paramedic who travels with us, who is brilliant and knows loads about flying, arranged that the plane would have sandwiches and drinks that I was allowed, as the last time I couldn’t eat anything. So this made the flight a little better, also this time I didn’t lie in the bed, I set on one of those leather seats and was able to have a better view of the sky. When we landed the weather was lovely, it was sunny and warm, very different from the fog and cold we left behind. There was another ambulance and a medical car waiting on the runway for us – it was the same driver as the last time. We had to drive to Leiden, which is about 50KM from Amsterdam, again we ‘blue lighted it’. Dad followed behind in the medical car and he said it was like being in a racing car, very fast and quite scary. Anyway we got to the hospital in Leiden in about 15 or so minutes. Everybody was waiting for us, the cells were already defrosting. The same nurse and doctor came to check me out, as well as one of the ‘Boss’s’ friends a doctor who knows Prof Cant very well and works in Holland. I had my transfusion and it went very well, while the transfusion was going in I had some Dutch apple juice and some ice cream, both of which were yummie. You’ll never guess how many stem cells were in my transfusion, well there were 60,000,000 stem cells, all running around trying to find the right place to help out, pretty cool. After that we said good bye to the doctors and nurses and headed back to Amsterdam airport. Now it started to get difficult. I was getting very tired and exhausted and I just wanted to be back in my bed. On the plane back we found out that Newcastle was fogged in again and we had to divert to Carlie, which is on the west coast of England, remember Newcastle is on the east cost. The decent was horrible, with loads of clouds which made it very bumpy and quite horrible, but we got down and I wasn’t the only person feeling unwell. Then we had to wait for another ambulance to come from Carlie to take us back to Newcastle. I got back to my room at about 20:00, wrecked, tired, drained and feeling horrible. Mum was waiting for me and I was delighted to see her. The girls on the ward had also been into my room while I was away and the room was spotless and my bed was made with nice clean clothes. I think I was just wrecked but my night was crap. I was up one the hour and many times twice in the hour; it was just so so horrible. My blood pressure dropped and I had a lot of nurses and doctors in through the night. I now really really need to sleep which is what I hope I can do today. So it’s not nite nite this time, but good morning from Newcastle. Love Naoise.

Day +61

Hi all, today was an interesting day. First of all last night wasn’t too bad. I went to sleep at 10:00 and woke up at 12:30; 3:30, 5:30; 7; 8 & 9 which for me is a very good night sleep. I didn’t fancy any breakfast but the great news is that the Remote Control dried out and worked this morning, so we got to see loads and loads of TV. There was a brilliant film on this afternoon, I don’t know the name but it had Chandler from Friends in it as a teacher. For dinner I had some oven cooked carrots, sweat potato and garlic; the whole ward smelled of garlic, it’s a good job I like it. Unfortunately the dinner wasn’t great and I swapped it for some macaroni and cheese which was only slightly better. The Boss (Prof Cant) came in to see me again and to wish me luck for my trip. He thought that my rash was slightly less red today then over the weekend. Later in the afternoon both dad and I went for our afternoon nap. Dad slept, but I don’t think I did. For dinner I had some salmon, which was yummy, but again the ward smelt like fish! The other people will love me J. Then it was time for Friends, oh how I missed them J. That all for today. Nite nite from Naoise in Newcastle.

Day + 60

Hi all, sorry for the delay in updating my blog. Monday was day +60. I just wish I could be at home and I miss everybody so much, time is passing so slowly. Monday was the same, a crap night, up on the hour every hour. I spent most of the morning asleep, or at least trying to sleep. I didn’t fancy any breakfast and I had a very late dinner of mashed potatoes and gravy followed by some rice – cause the doctors came in and by the time they were finished my dinner was cold – just bad timing. There is a lot of hope is on our trip to Holland. My rash is still as bad as every & my tummy is upset. Two kinda of funny things happened. Firstly when I was having my shower dad changed my bed, but he just grabbed all the blankets and put them in the washing bags. Later that evening dad came in with the remote control for the TV – it had been through the wash and now didn’t work.. nice one dad… So with no TV to watch, imagine no friends. I think it is the first time since I came here that I missed Friends, and guess who’s fault it was!! To make up, we made some fairy cakes with butter icing topping. I mixed the butter, milk (UHT milk) with the cake powder and then put into cake dishes and baked them for 12 mins. While they were cooking (I sound like a TV chef now) we made the icing. Dad took them out of the oven and I put the icing on. But after all that work I was so looking forward to my treat, but the were HORRIBLE !!! After that it was time for some sleep. Nite nite from Naoise in Newcastle.

Day +58 & + 59

Hi All, sorry I didn’t update you all yesterday but I’m feeling kind of wrecked and it is hard to get the blog done. Yesterday and today have been the same, very little sleep, sore tummy, bad rash. Professor Cant has been looking after me for the past two days. It is good to have the ‘boss’ looking after you J. Mum and Nana went home this evening and Dad came with a big bag of goodies. Thanks to all for the lovely eggs (all of them.. it seems like my room is full of chocolate). Thanks Mike for my DVD of my class in Belgrove. I watched the first half of it. I loved seeing all my friends but it also made me sad as I missed them all so much, perhaps I’ll watch the rest tomorrow. I got a great jigsaw (750 pieces and 3 foot wide), Ireland top, picture frame and a painting set, should keep me busy – thanks to all for my presents.

Day +57

Hi All, well today was even worse if that is possible :-(. I got a really high temperature during the night which has lasted all day. I feel really miserable and sad and I really want to go home so much. I didn't feel like eating much at all, I had a ice cream and a cream cracker. The firsts result from my biopsy came back but the full report did come back because it is a public holiday here and no one is working in the lab, its the same on Monday so it will be Tuesday before I get the full results. The first results confirm that I have GVHD in my lower gut, I still have to get the virus results and also need to find out if the stem cell transplant has worked. My rash is really bad and mummy has to put cream all over me four times a day which I really really hate. I got sick today too which hadn't happened ages :-(. I am so tired from being up all night again and am hoping I will sleep tonight and have a better day tomorrow. Lots of Love Naoise xxx

Day +55 and Day +56

Hi Everyone, well no big news today really, no change, nights are still the same and days are still the same. Sore tummy, a rash and generally feeling rubbish. My rash is very very itchy and driving me made. I have some more viruses in my stool and one of them has made it into my blood stream which the doctors expected, all of this causing me to feel really awful on top of the tiredness. I actually haven't slept in a month! I am looking for a back scratcher, mum is my back scratcher right now! Yesterday I had my skin and gut biopsy in the Royal Victoria Hospital. We set off in the ambulance at around 12.00 and eventually got into theatre at 7.00 and got back to the BMT ward at 11.30! I was so so tired, then I was up all night again :-(. Today Nana came! We had a great chat when I woke up this morning and she told me all about Mum when she was a little girl. Then she went off into town to get some bits and peices for me. I had half a bananna for breakie, then for lunch I had chicken casserole from a tin, the chicken was a bit rubbery but the sauce was really nice so I dipped some buttery bread in it. Then for tea I had my usual Oxtail soup. A then some Easter egg!! Nana came back from town and told us she fell, she was limping really badly so Mum took her to A&E they strapped up her ankle and said she has torn her ligiment. Poor Nana but at least she was in the right place! She can have my wheelchair if she needs it, she has gone back to the flat for a rest so hopefully she will be better tomorrow. Amanda came today and we made chocolate truffles they are yummy. We put in chocolate drops, vanilla essence and UHT cream, they were so yummy. Amanda also gave me a mini egg Easter egg which is one of my favourites, thanks Amanda! Yesterday Miss Newcastle came to the hospital and I got an Aero Easter egg. I also received a package from Bridget and Aine with a lovely Lamb Easter egg, thank you both!! Also a big thanks to Kim and Brian for the easter cards and craft stuff, I will be busy making Easter Cards. We didn't get the results of my biospy yet. We thought we would get it today but the doc came and told us it would be tomorrow. We are going to Holland again next week so thats another day out and we will see Jane the paramedic again!!! I'm also hoping that I'll get the same soup I got in Holland last time. Westlife from the beginning is on TV tonight so I will be glued to that!! Nite Nite Love Naoise xxx Oh and Emma I got your letter today, thanks so much the photos are on my door so everyone going can see me & you! xxx Oh Oh and Amanda fixed the TV while we were gone yesterday, we had to get a new box, thanks Amanda xxx

Day +55

Hi Everyone, well last night was the same as every other night no sleep at all. I had a bit of a nap this morning and then had some oxtail soup for breakie. Physio came but I was too sick and tired for some reason I always feel the same in the morning but I seem to perk up in the afternoon. Amanda came at 2.30 and stayed for two making an Easter basket which we are going to fill with mini eggs. It was great, that really cheered me up and I stayed in my cheery mood all afternoon. I had lemon sole for lunch from marks and sparks which was nice and then mummy made me a chicken wrap for tea. Enough about food which I'm kinda obessed with at the moment. The docs had their big meeting and they have decided that tomorrow I will have two biopsies. One on my gut and the other on my skin, this will tell if the stem cell is working and if I have more of a virus than GVHD. We have to go to the Royal Victoria Hospital in an ambulance in the morning around 11.30. I'm on the emergency list again so I could be waiting and fasting all day long sooo not looking forward to that! Last time I went there we got back at 3.00am. Then next week I will be going to Holland again. So thats the latest news from Head Office in Newcastle. Also the TV blew up this evening which is awful having no TV, Amanda has gone off in search of an aerial, she thinks we might need a new box. I am kinda of eating a lot this evening cos I can't have anything after 8 tomorrow morning, I've just ate a mini chocolate bunny and now fancy something else. I have to wake up really early if I want to have breakfast... there I go again talking about food... anyways gonna log off now and will send an update tomorrow. Love Naoise xxx

Day +53

Hi Everyone, well no good news really, I still feel rubbish and had a really rubbish night. I was up about 12 times.. am so tired.. didn't manage to get a nap today either. Today was quiet as there was no teacher and no play nurse. I didn't feel like eating this morning but had beef caserole in a tin, it was quite nice, although I am getting tired of frozen stuff and things in a tins! When I'm allowed to eat properly the first thing I want is a rare steak and then some seabass!! The physio came down but I was feeling too bad to do anything. The doc came and there is kinda of plan in place which will be confirmed at the doctors big meeting tomorrow. The virus that I have is masking any improvements to my GVHD that the stem cell treatment might have had on me. So its very hard to tell whether I'm getting better as the new virus I have is making me go to the loo all the time, giving me a high temperature and making me feel crampy. I have two options one is to have another biopsy on my gut which will show exactly how much improved my GVHD disease is or go to Holland. I'm hoping is Holland cos I really don't want another biopsy..! I'm feeling much better now that I was this morning. I talked to Lilo and Emma on the phone which cheered me up. I always kinda of cheer up and feel better in the evening for some reason. I really really hope I sleep tonight... will update you tomorrow on the big decision... lots of love Naoise xxx

Day +51 and Day +52

Hi All, sorry I didn’t update my blog yesterday. I was up all night and was really tired. Today I woke up after being up all night yet again and had toasted cheesey for breakie. Then I had a nap, then I watched a bit of Wild Child. Amanda came and I made a card for Aine as its her Birthday on Good Friday. Then I had some oxtail soup but I didn’t manage to eat it as it went cold while I was sitting on the loo! I had a shower and watched a bit more of my DVD. Mum arrived today and Dad went home tired :-)!. Mum brought some mini pizza bases and toppings so I made a pizza, it was great a bit like home cooking. It was yummy, chicken, cheese and sweet corn. After that we watched celebrity come dine with me and we’re talking about trying to have an early night tonight. Not sure how but we’re gonna try! Mam also brought a diary from all my classmates, its started in January by Lorna and all the girls have written in it. Its really really fab and I’ve read most of it already!! Thanks Girls and also thanks for Ms. McGrath and Ms O’Grady! And a big huge thank you to Jack McGrath who ran a race and raised 860 euro for Temple Street Hospital!! Well done Jack. My weight is going down a little bit which is good. I have another virus which is not good. Also I have new rash. There is a chance that I will have skin biopsy this week which I am not looking forward to. I get some numbing cream on my skin and then a piece of skin is taken.. yuck.. hope it doesn’t hurt!!! I really feel I am getting better though cos I can touch my toes, just need to stop this going to the loo lark all the time and clear up those horrible viruses! Oh and thanks to Seadna and Maggie, for my makeup, Mum brought it over with her and we’re gonna have a makeover day, will send on the pics! And Isabel sorry to hear about your broken arm and thanks for the ‘all the single ladies’ photo!! Gonna sign off now , lots of love Naoise xxx

Day +50

Hi all, I can’t believe that I’m at day +50, this is a long hall. Last night was crap. I used Lisa’s sleeping spray but it didn’t stop me waking up every hour for most of the night, so by morning time I was wrecked. I had another toastie for breakfast, it was a cheese, ham and tomato sauce, but dad put too much cheese on it and it wasn’t great! Teacher came early and we finished my Easter basket and made a card – thanks to teacher for getting up really early to bake my Easter basket – I love it. The morning was full of nurses, doctors and medicines – as usual. For dinner I had some potatoes and carrots with gravy and watched a dvd called ‘Angus, thongs and perfect snogging’ – not one for a Dad!, but I loved it. Later Claire came in and we did some exercise. I’m on a lot of steroids which have caused my ankles to swell so I wasn’t too keen to do too much stretching. I’m sure I will be next week. I was unhooked for an hour in the afternoon and I had a lovely shower and changed pjs and got back into a clean bed. Dinner was in two parts, garlic bread for the start of Friends and carrot soup for when it was over. Tomorrow the Grand National (I think it is a big race) is on and Dad said I’ve to pick a horse, so if anybody has any tips, please let me know. That’s all for this evening. Lots of love Naoise.

Day +49

Hi everybody, today was an interesting day, but more of that later. I had an ok night I slept from 10 till 3 but then was up fairly regularly. It was good the get those 5 hours sleep. Remember I said that the sandwich toaster was brilliant; well I decided to have a toastie for breakfast, which was yummie. The morning flew by with doctors, nurses, teachers and Amanda all coming in. For dinner I had a cheese burger (I sent dad out for bun burgers), it was only ok. Then I had my shower and surprise surprise I managed to touch my toes while washing myself. I was really delighted because due to my arthritis I haven’t been able to bend down to touch my toes for nearly 4 years so I was delighted and it cheered me up for the whole afternoon, so you see it was an interesting day. I fancied garlic bread and pasta for my tea, so I sent dad out to find garlic bread, which he didJ. After tea we watched a DVD called Cinderella Story, which was very good and then Eastenders, which is not very good. Lisa, one of the nurses who minded me brought me in some sleep spray for me to try & I’ve high hopes that it will work tonight. Before I go I just want to say thanks to a few people. Thanks to Anne Mangan for my lovely parcel full of Westlife stuff and DVDs – loads of good watching. Also thanks to the Clontarf Credit union for the brilliant Easter bunny teddy, he is sitting at the end of my bed. Lastly thanks to Sophie, Isabelle, Elle & Euan for the great magazines and fab Easter cards (I now have an Easter Card wall beside my St Patrick Card wall). Thats all from Newcastle, nite nite, lots of love, Naoise

Day +48

Hi All, firstly sorry about the delay in updating my blog but I was very tired after my trip to Holland. Today was a quite day, in fact we did very little other than sleep, eat and watch tv. I had an ok kind of night, I still wake up a lot, but it is more like every two hours rather than every hour. I had some ox tail soup for breakfast, I know it sounds funny, but ox tail soup is the find of the week! For dinner I had some mash potatoes and then for tea I had another brilliant find. Dad noticed that there was a sandwich toaster on the ward, so for tea I had a chesses and tomato sauce toastie – it was brilliant. Teacher came in and we did some art, which was just what I wanted to do as I’m not up to doing ‘hard’ work. Then Amanda, one of the play specialists, came in to show me her photos from her holidays. Later in the afternoon we watched s DVD called The Prince and Me 2, it was ok. So that’s all from me today, an ok day. Nite nite, love Naoise.

PS: if everybody looks at the comments from my trip to Holland you’ll see a comment from Detrious – he was one of our ambulance drivers who took us from the hospital to Newcastle Airport. Thanks Detrious and yes I loved the flashing lights and sirens.