Naoise Book

Hi All,
We are working on a project to convert Naoise blog into a book which we hope will celebrate her life as well as raise a few bob for Temple Street Hospital. Our intention is that the main body of the book would have her blog entries accompanied by the messages that people have left for her.
I want to check if anybody had any objections to their name or message appearing in the book. If somebody wishes to remove any item could they please send me an email at mcgderek@gmail.com and I will ensure that the relevant message or name is removed.
We hope to have the book ready for Christmas.
Thanks to everybody for their continued support and best wishes.
Derek

Naoise's Months Mind

Hello Everyone, We would like to express our deepest thanks for all the support, cards and letters we have received during this difficult time.

We also wanted to let you know that Naoise's months mind will be held at 10.00 am on Sunday August 2nd in St. Anthony's Church, Clontarf. Hope to see you there.

Michelle & Derek

Day +138

Naoise, our beautiful daughter, left us at 2:10 this morning. Her passing was peaceful. Ar dheis Dé go raibh sí

Day +137

We wanted to let you know that Naoise’s battle for life is coming to an end. The medical team here on Bone Marrow Transplant Ward 23 in Newcastle have done their very best throughout the last five months. However, they have now confirmed that this is likely to be Naoise’s last week. Naoise has gone through so much in the last few months and even now she is showing her amazing spirit in her final moments. We are so proud of our daughter and the effect she has had on everyone she has met. She has made her mark in her short life and we believe she is now going to a better place. We thank you so much for your support, gifts, cards, wishes and prayers for Naoise. We ask that she continues to be in your thoughts and prayers for the week ahead.
Naoise’s Mum & Dad

Day +126

Hi All, I’m very sorry for not keeping you all up to date but as you’ll see it was a very hectic week. I won’t go through day by day update instead I’ll just talk about the big things. You know I had a biopsy last Friday, well it seems that every time I have a biopsy something dramatic happens and this case was no different. I thought I got over the biopsy quite quickly and I had a reasonable ok day on Monday and Tuesday with ok nights (only up about 3 to 5 times per night). But what was happening was my weight was gradually going up and up. I came in at around 32kg and three weeks ago I was 35kg but by Tuesday night I was heading towards 41kg. Everything here is measured, checked and weighed, so when my weight started going up and up the doctors started to get worried. It turned out that my kidney was not working quite as well as it should and so I was taking on more fluid than I could get rid of. The docs here were quite worried and kept looking at all the fluids that was going into me. They decided to change a lot of my meds from transfusions (which require the medicine to be diluted with water) to direct feeds into my tubes. They also said I had to limit my drinking to 150mls per day, which was nearly impossible. Dad went home on Wednesday morning and he was only home a couple of hours when he got a call to come back to help out. My mums dad (gaga Christy) was over for another visit and at the start wasn’t allowed into my room. So dad came back on Thursday morning and he brought Nana Ruth and gaga Michael, so now I had a small crowd and surprise surprise on Thursday afternoon the doctors decided that my grand parents could come in. It was great to be able to spend some time with them. Also by this stage I still hadn’t wee that much so the doctors changed my medicines and put me on a huge amount diuretics. Everybody seemed a little concerned and we sat tight and weighted. Late on Thursday night all changed again and I started to wee for Ireland, in fact I kept on going all today. Now the next issue is this. As you know I’ve been pooing loads for the past couple of months, well now I seemed to have stopped, or as Prof Cant say’s ‘I’m on a go slow’. Speaking of Prof Cant, he came in this afternoon and said that he was very pleased that my kidneys were back working and that the biopsy results from last week showed some improvements so he was a little happier, but still concerned about the lack of poo. So as you can see it’s been a very busy couple of days with lots going on, as usual.
Oh, the last big piece of news is that I got a personal letter from Brian Cowen on official government paper. Everybody over hear was very impressed that our Taoiseach took time to send me a letter. So that’s all for now, lets hope that everything returns back to normal real soon. Thanks to Marie for my bag, you are right a lady can never have too many ! and thanks to Ross for my cool dvd – I love it.

Day +121

Hi all, well last night was as we had expected kinda tough and today was a total right off as I have just spent the day asleep and going to the toilet. It is always the same when I come back from a biopsy. I suppose it is the antistatic taking its effect. I also had loads of drugs to take today which the nurses just worked away while I slept and slept. I was supposed to have a shower, but I just couldn’t bring myself to take one and you know how much I love my showers. The only thing I did was to play with Amanda but that was only for a half an hour. So short note tonight. I hope tomorrow is a little bit more active and I’m feeling a little better. Nite Nite, Love Naoise.

Day +120

Hi all, a very busy day even by my standards. You know I mentioned yesterday I was talking to the nurses about what I could eat and drink, well here is how it worked out. I woke up about 7 after an ok kind of night (I was up about 4 times) I managed to persuade the nurses that I should have a peach smoothie. When they agreed I got Dad up to make it and good news it stayed down and was lovely. Then it was on to my ice pops, dad made 2 7Up & 2 plain water ice pops and I managed to get most of them down before my cut off time. Then Paula came in and we did some play time which was great as it helped pass the time before the ambulance men came. The other interesting thing that happened was that I got a letter from Brian Cowen wishing me good look. Everybody here was very impressed that I knew the Prime Minster (for our UK followers), his letter is now hanging on my wall. Back to my day, the ambulance crew came at 11:00 and we loaded up and headed of. You can see the video below of my day and of the new hospital. Dad said I was very brave. This was my 5th gut biopsy so I’m kinda of used to the procedure; the worst part is waiting around. Bethany my nurse today was great and brought everything we needed. I brought my laptop and 6 dvds. In the end we started to watch Wild Child and I fell asleep, in fact I slept till it was time to go down to theatre. I had my medicine and off I went fast asleep. I was back in my room in about 90 mins and then we called the ambulance to come home. Usually the ambulance takes ages but this time it was ready for us very quickly in fact too quickly for us, but they waited, which was very nice. We got back to the general hospital about 6:30 (can anybody spot a little flirting in the ambulance on the way back !!). We had a good bit of drugs and things to do because I was off the ward for most of the day. Also my tummy felt funny from all the poking that had happened. We will know the results early next week. I was supposed to have two tubes, one from each nose, but thanks to Sue (here on the ward) she found a new tube, one which had a tube within a tube (or at least that is how I understand it). One of them goes to my tummy and the other goes to my gut which they are going to try passing some small amounts of feed through to see if it helps my gut to improve. When all that was over we watched a very late version of Friends and then it was time for bed. I am very very tired and I hope I’ve a good night’s sleep. Nite nite, thanks to all for your good wishes. Lots of love Naoise.

PS Sorry this took so long, but we only have a 48Kbps internet access so it takes an age to upload picture and videos.

Day + 119

Hi everybody, today was a little quite, especially after yesterday. I had an ok kind of night. I was up in the middle of the night at one stage for nearly 2 hours, but then only a couple of times for the rest of the night. I’m not sure which are better loads of little disruptions or a couple of large disruptions. I had a lovely shower this morning where I just sat under the shower for about 60 minutes. I love the feeling of the water falling on me. Then I had my morning medicines and a bit of a rest and a nap while Dad went for his shower. At lunch time my teacher, Elisabeth, came in and we did some work. This is the first time in a little while that she managed to get me when I wasn’t sleeping. After that Susan came in and then the physical therapist, but by this stage I was wrecked and needed another rest / nap. All day I’ve been very thirsty. Dad said yesterday I was allowed one glass of coke and one glass of 7 UP. I had my coke early this morning, but this evening when I only had a little bit of 7 Up I ended up getting sick. Also this evening I had a peach and mango smoothie but that also came up after only a few minutes. I think I want to eat but it seems that nobody told my tummy. Tomorrow I’m going for my biopsy so I’ve to fast from 08:00 tomorrow and to stop drinking at 10:00. I hate not been able to drink so I’ve pestered the nurses to see if I can gargle water or take a little and spit it out, or eat an ice pop or have ice cubes. You get the idea; there must be a way around this not drinking. Anyway it is nearly 10:00 and I’m eating my 7UP frozen ice lolly (after a little fight with my dad) and I think after this it is time for bed. Nite nite, love Naoise.

Day + 118

Hi all, well another eventful day in the on going story of Naoise in Newcastle. As you know I was to go to the RVI (another hospital in Newcastle) for my biopsy, well it kinda didn’t happen, but lets start at the beginning. Last night Zoe the nurse looking after me (she was one of the singers in my video) and had loads of medicines to get through as she wanted to get a head start for today. The problem was that the medicine machines / pumps kept playing up all night. I slept through them, but don’t think mum did. Mum went home this morning and had to leave at 6:30am along with granddad. My ambulance was ordered for 12:00 but for the whole morning we had loads of tests to do in order to be prepared. I had to have platelets, most of my day drugs, an ECG, more blood tests, etc. So it seemed that I was really rushed, which I hate. Anyway the ambulance came some time after 13:00 and we headed off to the RVI, but instead of the RVI we had to go to the new children’s hospital, called The Great North Children’s Hospital, which is on the same site as the RVI, in fact they only moved into the new hospital last Monday. I was on the emergency list which means that I have to wait till all those on the normal list are done and then they start on those of us who are on the emergency list. The other thing I hate and I forgot to mention was that I had to stop drinking at 11 this morning and I find this really really hard. Anyway back to the new hospital, it’s quite nice, very white, not fully finished and a bit like an airport terminal. So we waited and waited and waited. About 16:00 we were told that I would be delayed because of an emergency needed the operating theatre at this stage I was desperate for something to drink, but I couldn’t. then about 17:30 they came and told us that there had been another emergency and I wouldn’t be done today as it would be far too late. I was delighted. Not only was I not having a horrible biopsy but I could also have a drink!!. The bad news is that I have to go back on Friday for my biopsy, but this time I have a slot on the actual list, I’m number 2 on the afternoon list which means that I won’t have to wait too long (or at least I shouldn’t have to wait). Then we had to wait for an ambulance to bring us back, this is often the hardest part. Eventually we got back to my room in Newcastle General. As usual when I leave my room the team here come in a clean my room from top to bottom so it is always lovely to come back to. Because I was so good Anna (my nurse who was looking after me all day) said I could have a small drink of 7 Up and after a little break a small drink of Coke and in between water, water, water. Check out my photo, it’s me in my new cool chair drinking my 7Up. A hectic day coming to an end I hope I have a nice sleep and am not up too much. So that’s all from me. Nite nite love Naoise.

Day +117

Hello Everyone, well yesterday I was exhausted from the day before and nothing but sleep..! I am still recovering...today was pretty much a chill out out day too. Amanda came and we made plates, also the physio came and I did some excercises sitting down. I really really had a great Half Birthday, thanks so much to everyone for all their presents!!! Lilian, Jimmy, Una & Family, Nana, GaGa, Nuala, Paul, Brigie, Kay & Martin, Vicent & Margerat,Anne Mangan,all the nurses and health care workers. Thanks to the physio department (Kelly!!) in Temple Street for the beautiful pink roses..!! The bad news is that I have to have another gut biospy tomorrow, am so so not looking forward to it. I also have to get another tube down which will bypass my tummy into my duodenum which my feed will go through, this will be the test to see if my tummy starts to work again. Not looking forward to having two tubes, one from each nostril!!! My blood counts are still a bit low, I'm having platelets today again and my CRP level has gone up again :-(. But there is some good news too, I don't need that much oxegen anymore and I didn't have a temperature all day today!! The Apprentice is over so will miss that, haven't really got into Big Brother yet... me and Mummy are going to watch a movie tonight, not sure which one yet. Gaga goes home today after 3 days.! He is coming again really soon before he goes back to Thailand, thanks for coming GaGa and sorry I didn't get to see you too much! Thats it from me tonight, will catch up with you tomorrow and let you know how my biopsy goes in the RVI hospital tomorrow. Lots of Love Naoise xxxx P.S Thanks also for all your comments, glad you liked my party video, also will get that number for you Paul, hope your girlfriend doesn't mind :-)))) xxxx

Day +112 +113 +114 +115 and +116

Hi Everyone, so sorry I haven't been in touch for a while. I've been a bit sick which lots of horrible things happening and then yesterday I had my party which was fab!! I had a brilliant day and managed to stay awake all day with no naps even though I had my morphine :-). We played SingStar, pin the head on westlife, a westlife quiz and pass the parcel. Loads of people came and I even had a cake. Some nurses came even though it was their day off, how nice is that! O my God you should see the pressents I got, I am so lucky. I got lots of pink stuff which I am thrilled with, I have to go through them all still as they are piled up on a chair here beside me. I got some amazing gifts, I'm liking this half Birthday idea, might do this every year :-). Check out the videoes and the pictures!!! Did I tell you I got a new chair?? Its an really cool electric one and I love it, in fact its hard to get me out of it. I was getting sores from being in bed for four months and the OT thought it would be a good idea... I wanted to sleep in it last night but Mummy and Daddy didn't think that would be a good idea. GaGa from Thailand is here at the moment, he arrived yesterday in time for the party in a pink shirt! Everyone wore pink!! Paula looked amazing in her fairy outfit and Mam had a pair of pink leather leggings on!! Dad had a pink t-shirt which was too small for him.

Enjoy the videos because I had a great time. thanks to all for the brilliant cards and good wishes, my card wall is nearly full. I'm very very tired now so it is nite nite from Naoise in Newcastle.

Day +111

Hi All, Well not much news today, was up quite a bit last night so slept most of the day. Nana and Bob are going home today and Dad comes back tomorrow. Nana got me a glass shoe full of pink lemonade for my pink party, lovely cover for my bed and lots of other pink stuff! There will be nothing pink left in Newcastle. Having another platelet tranfusion now, my platelets will not stay up at all. My heart rate today went to the highest ever 184... not sure why cos I don't have a temperature.. i can feel it beating in my chest! Am so so so tired today not sure if I will make it to the Apprentice but its on again earlier tomorrow so can watch it then. Also Big Brother is starting tomorrow and America Got Talent so that should keep me going for a while anyways.... didn't have too much pain today but there are clots up my nose that have gone hard and are driving me mad. Monica gave me a torch and I can see right up there with torch and have been investigating all day long with a swab stick.. passed the day big time! My tummy is still the same size and my weight is slowly going up then down, then up again!! I am drinking loads as I get so so thirsty... the doc says I am drinking way to much and I have to try and cut down. It was Nana's Birthday today so Happy Birthday Nana!! Bob wasn't allowed in but I waved to him through the window!! Safe flight home tomorrow. Thanks to Lorna for your letter and for keeping me up to date with all the gossip from school!! My blood counts went up today but thats probably because I had two bags of blood and platelets after my nosebleed everything went a bit all over the place. Am still making lots and lots of plans for my half Birthday,its very exciting! My Gaga is coming over too who is home from Thailand. Catch up tomorrow lots of love Naoise xxxx

Day +108, 109 and 110

Hi All, sorry I've been a bit sick lately and haven't been able to update my blog. I don't have any real news for you except we are still waiting and wondering when to start ATG. This is the drug that will kinda put me back to scratch so we are looking at other things we can do also. One being Mummys blood, another being the donor's blood and lastly making another trip to Holland. Right now we are going to wait and see if I get a little better before doing anything. My rash is going and I don't seem to be going to the loo as much so the docs think I might be improving a little. Prof Cant came for a visit and he wants to wait to see what happens. He is going to Ireland tomorrow and will be back on Thursday. Nana is here at the moment and is looking after me while mummy goes back to the flat for a shower and a cup of tea. I'm not on as much oxgen as I was which is good too. I'm still getting pains in my tummy and sometimes in my back and am still getting sick quite a lot. Today I had a nosebleed which took two hours to stop!! It just kept coming.... in the end it only stopped cos I got a tranfusion of platelets and some adreninlin! Tonight I am having two bags of blood while I sleep. My bloods were a bit down today but I got some GCSF so they might be up a bit tomorrow. My pancreatitis is getting better too. I am still planning my half Birthday Party on Sunday, I have my pink dress, a pink wig (thanks so much Tracey for my wig its fab!!!!) and pink decorations for my room. Thanks to Aunty Audrey and Chrissie for my CDs and Birthday Card, I am very excited. We are going to make a cake made of lollies. Mum bought lots of pink Jelly Belly Beans to day too! Thanks to Aine for my dinosaurs and for my cover, its great having your own bed clothes! I've learned to change my own dressing on my central line too! I love doing it myself! Check me out nurse Naoise :-). Am tired now and there is absolutely nothing on TV!! Talk to you tomorrow love Naoise xxxx

Day + 105; +106 & +107

Hi All, it’s been a busy couple of days and nights, with some being busier than others. I thought I’d give you an example of a quite night and a busy night. Wednesday night was a good one, mum and I had lights out around 10:30 – 11:00ish and I only woke up at 1:00 and 5:00 to go to the toilet. Now for an example of a bad night. Friday night we also had lights out at 10:30 after Britain’s Got Talent. But this time I woke at 12:30 (toilet); 1:30(toilet); 2:30 (nose bleed and to take 4 tablets); 4:00 (toilet and nose bleed); 5:00 (toilet & to be sick) & 7:00 (toilet again), through out this I had two nurses in my room giving me blood and later platelets transfusions, all of this as well as my normal nightly medicine volumes, aspirating my NG tube and check that I was ok. Friday was a horrible night.

On Wednesday I ate some mashed potatoes and gravy, which were lovely. I haven’t fancied anything since then. I continue to be really thirsty and I’m devouring what ever drink is put in front of me. It’s kinda funny because what ever I eat or drink comes back up into the bag at the end of my NG tube so you get to see everything. It’s ok for drinks, but its not great for rise and it’s horrid to see potatoes.

I’ve been working with Paula to create a fruit bowl and a shoe all made out of modeling clay. I’ve made loads of fruit but the best thing is the shoe, it has a very high heel and we painted it pink, with pink ribbons, have a look at the photo (ups I can’t find the camera so I’ll put the photo up when I get a chance).

Both yesterday and today I’ve had a pain in my back and one in my tummy. Each time the doctors have given me some morphine which sends me asleep, so I’m sleeping a lot during the day. Of course we are still watching Friends and have been following Britain’s Got Talent each evening and Dad and I will be watching the final. I’m not sure who I want to win.

My bloods have gone down a little, here are today WCC 1.1 neutraphils 0.79; crp 192. I am on some immune suppression drugs because of my GVHD and that is causing my bloods to drop a little. My rash is improving, a little, still have to do the creams 4 times a day. We are going to start ATG next week, well that’s the plan it will be interesting if it happens.
Lastly just a couple of thanks – Eoin (dad’s work) & his two daughters for my fab card and books. Anne for my first ½ birthday card !!; Julieann for the cards; Paula for my fab pink back scratcher (which I love). Margaret for the card (love the pictures on it). Sorry if I’ve left anybody out. That’s all from Newcastle. Love Naoise.

Day +102, 103 and 104

Hi All,

Sorry I haven updated you in all in a couple of days but I've been a bit tired and sick, also more importantly I had a visitor. Emma my friend came to visit me and was actually allowed into my room! We had a fun day and night. We made perfume with Paula the play nurse, caught up on all the gossip and got into our PJs to watch Britains Got Talent, Emma even got into my blog. Thanks so much for coming Emma!! After all the excitment I was very tired today. I slept a bit in the moring, then watched a DVD along came Polly, then watch a bit of ICarly had another nap and am now waiting on the Apprentice to come on. I've had a few high temperatures and high heart rates over the past couple of days but am in good form. I haven't started my new drug ATG yet cos there is a lot to do with mummies blood cells and having the extracted or something... anyway I will start it end of this week or early next week will keep you posted! Guess what I did today, ate some rice!! I was feeling a bit hungry so I tried a bit, I hadn't eaten in six weeks so it was a bit strange. It tasted nice and went down well but most of it came back up in my tube, it was really funny to watch! I'm still up and down to the loo all the time and still on oxegen a lot but my rash is definitely getting better. Still hate getting my cream on. My neutraphils went down a bit they are 1.63, my white count is 1.9 and my platlets are 57. Well I'm tired now so gonna sign off. Will keep you updated on all my news from Newcastle!! Lots of love Naoise xxx

Day =100!!!! + 101

Hi all, You remember I mentioned that the Prof Cant wanted me to start a new drug called Siralimus, well I started that last Wednesday and it seemed to be doing something, I wasn’t up to the toilet as often which was good but then my tummy got huge and rock hard. Then on Friday I was told that I had Pancreatitis and it was quite serious. Prof Cant decided to stop the Siralimus as he thought this was the cause of my pancreatitis, he said that there was a 1 in 1,000 chance of this happening but as always if there is something strange to happen then it will happen to me!! So I am in 1000… how unlucky is that! I don't think I'll ever win the lotto!! Today my tummy is still huge and rock hard but it looks as though my pancreas is slowly going back to normal. My bloods are down a bit today. The pancreatitis caused them to go up a little but now they’ve come back down. My tummy is still very big and tender to touch and I’m still on a lot of morphine which helps to keep the pain away but can cause me to be very sleepy. So now I have GVHD, the adnovirus, an infected gut and pancreatitis so I need a new plan. The results of mummys bloods came back from Great Ormond Street and her white cells can fight the adnovirus. So on Tuesday they are going to take loads of mummys blood and send it to London where they will extract out the fighting cells and them put them into me. The hope is that mums cells will help my immune system and get rid of my adnovirus or at least keep it at bay. So the plan is that they will give my steroids a couple more days to see if the GVHD comes under control. My rash is still all over my letg, tummy and arms but it doesn’t seem to be as red. If I don't improve hugely by Tuesday then we will start ATG. This medicine kills all my T cells and will bring my GVHD under control but it will also set back all my blood cells to what they where on Day +1 so its like starting all over again. Its all a bit scary cos ATG will activate any virus and infections that is in my system so that’s the risky bit. I won’t have any immune system to fight them off. Yesterday I spent most of it sleeping but woke up for Friends and Britain Got Talent and the great news is that it will be on every night for the next week so I’ve got something good to look forward to each evening. Me and the nurses have come up with a plan which I’m very excited about. You know the way my Birthday is on Christmas day and sometimes my Birthday gets a bit lost cos that’s a big day for everyone. Well we came up with an idea for me to have a half Birthday. Its on 7th June and it’s a pink party. We are sending out half invitations and everything is going to halves J. I can’t eat anything so the play nurse and me are going to make a cake out of lollipops as I’m allowed to suck them. I’m also allowed to drink juice. Prof Cant was in today and he thinks I am much the same, no better no worse. He did think my rash was improving though. Mummy went into town today and got 2 pink outfits for my party, so I have to pick one out. She also got me cool pink sunglasses and a pink pearl bracelet. Paula came today too and we are making a bowl of fruit with clay. Will send on a pic once we’re finished it looks really good. Well I’m going to have a nap now so I can stay up for Britian’s Got Talent tonight!! Thanks to Jimmy and Una for the medals, I am wearing them now. Also for the magazines..!!! And to Mairead who works with Daddy for the lovely pink Card! And Aisling thanks for fashion set, and also to Bridge for the funny quotes from the kids..!! The nurses say I’m the most popular girl on the ward cos I’m always getting letters, I am so lucky!!! Lots of Love Naoise xxx

Day +98

Hello Everyone, well today was another eventful day in the day of the life of me in Newcastle. I didn't have a good night at all, I had a pain in my tummy which got worse in the early hours of the morning. It got really bad and Bettany called the Doc. The Doc was the on call Doctor who was lovely but didn't really know me at all, he listened to my tummy and couldn't hear anything. He said I needed an x ray on my tummy. So the x-ray man came and the results were Ok. Then Teresa the BMT doc came in and said we needed an x ray of my chest so the x ray girl came and the results were OK too. Sooooo you know that I have been going to the loo every 20 minutes for the last 3 months, well now I have suddenly stopped which is a bit of a worry cos my tummy is now huge!! It is now 82cm... it looks a bit scary. The drugs have been changed around a bit in the hope that the fluid will go and my tummy will go down again. Its pressing on my lungs so its hard to breathe and it also hard to get out of bed now. Usually by this time my output would be about 1 and half litres so far is only 200mls!! So watch this space to see what happens. The good news is that my crp is now down to 170 and my neutraphils are up to 3.8. My platelets stayed at 71 then went down to 51 so I'm having a tranfusion now. 71 is the highest they've been for a while so thats good too. I was in a lot of pain this morning so the teacher didn't come in and neither did Physio. Hopefully I will be well enough to see them tomorrow. I did get to see Susan and Amanda and we finished off our Hema mobile, it looks really cool hanging off the TV. I am going to make a blue mobile for little Peter and a pink one for Baby Zoe, and another blue one for baby Ronan. We still have no news on whether we are going to Holland again or not. Mummy gave her blood today which has gone down to Great Ormond Street in London tomorrow we will have the results. Mummy had a big plaster on her arm and I got to pull it off!! I've decided I'm going to give Daddy a needle when he comes back on Sunday. Do you know that on Saturday I will be here 100 days!! Professor Cant the boss came to see me this evening, he said that he is working all weekend and will come to see me. He thinks that by Sunday morning I should be showing signs of improvement, Prof Cant wanted to put a bet of a bottle of Whiskey on it... I'm not that keen on whiskey though :-)). Gonna watch Peter & Katie Statside now..... night night Love Noaise xxx

Day +97

Hi All, Well today was another busy day and am so tired now. It started off again with the teacher coming at around 9. Then I felt really sick and threw up my tube yet again!! I had to get that put in again, we couldn't believe it! Zoe did a great job of putting in down so I was able to be brave again :-). Then I had a nap, after that Physio came in and we did some blow painting, then Paula came and we make an Hema flower, we already made a star and a heart, we are going make a hanging mobile. The doc came and measured my stomach it is getting bigger and bigger from all the fluid I am retaining, its now 78 cm!! My blood levels are Ok today but I need platlets as they are still a bit low. My CRP is really high its 278!! This means there is a lot of infection in my body. So the plan of action is that I am starting my new drug tonight called Siralimus, my steriods are being increased. We are waiting to hear if I can go back to Holland again. It is rare that you are allowed to go 3 times, its never really been done 3 times before only twice. Also Mummy's blood is being sent to Great Ormond Street in London tomorrow morning. They will run tests to see if she is immune to the Adenovirus then they will take white cells from her blood and give them to me!! Someone else other than me is getting a needle for a change!! Still having temperatures, rash is getting a bit worse... feeling OK though, feeling at lot perkier than I did last week. Right I'm going to have a nap now cos I really want to stay up for the Apprentice later on. Thats all the news from Newcastle!! Love Naoise xxx

Day +96

Hey Everyone, well today started off ok. The teacher came around 9 and we did this thing where there was loads of riddles and you had to match the riddles to the answers it was fun. Then I had my morphine and went for a nap. The doc came and said my heart rate was too high so she called the cardiac doctor who came to give me a scan. She put jelly stuff on my belly it was cold but didnt hurt at all. There is some fluid around my heart which is causing my heart to beat really quickly. They are deciding whether to remove it or no, not looking forward to that if it has to be done! The other news is that I got the results of my biospy and my GVHD is back :-(. which is not good news. So the plan is to increase my steriods and put me on a new drug. Its really hard to get the balance of all my drugs right cos I have a virus in my blood too called the Adno virus and when you take steriods it makes it worse!! Its all very confusing! Mary the doc has contacted Holland to see if I can have another stem cell transfusion. The GVHD is pretty bad in my upper gut and my lower gut won't be fixed until the upper bit is fixed, its all very complicated. The other bad thing that happed today is that I threw up my tube again! I had to get another one down, it wasn't too bad cos I got some morphine first. Mum said I was the bravest girl in the world!! I only got sick once today! We can't find the right size bag for my new tube so the nurse has to use a big big syringe to take all the gunge out of my tummy, it doesn't hurt though. Didn't really do much else today as I was pretty tired after all that! Joy I can't believe you are 11, you are catching up on me! And a black and white party sounds fab!! Today I got very excited cos a package arrived for me from All the nurses and John in the Day Ward in Temple street, thanks so much for my new cover!! Check it out in the pic !! Gail I agree I think pink is the one for us!! I missed friends today so gonna catch the 8 o clock show. Miss everyone so much and thanks for all your comments!! Lots of Love Naoise xxx PS Lil thanks for the new PJs, I have them on under the duvet so you can't see them!! xxx

Day +95

Hi Everyone, well today was a busy and am now shattered. This morning me and mum woke up early and watched Grease. I think I might have dozed off a bit cos I can't really remember much! Mum and me were up about 6 or 7 times during the night, I'm still getting sick even though I have my tube in I am wondering why that is! The occupational therapist came in and we are making our lady bird, we have the body done and will hopefully finish the rest tomorrow. I was so tired after that I fell asleep, Amanda came in at four but I will still fast asleep! She came back at five and I was too tired to do anything so we just had a chat. I've had a few nose bleeds today and my temperature has been high so I haven't been feeling too well at all. Still no results of my biospy yet hopefully tomorrow I will have more news. I am drinking lots of orange and its coming straight back up into my bag its kinda fun to watch! Well tonight we are going to watch Enchanted and have an early night. My rash is back so I have to put my creams back on four times a day which I really really hate :-(. I hope I don't have GVHD again :-(. Sorry I didn't get a chance to log onto Google today to talk to the class but I was a bit groggy. Still haven't had anything to eat but so not hungry at all. I'm still fed up and just want to get out of here. Well thats it for today, talk to you tomorrow. Love Naoise xxx

Day +94

Hi All, today is Sunday which is usually a nice quite day, but this Sunday wasn’t. I was up at 5 this morning when Dad told that I had two horrible things to get through. First I had to have an BG tube and then I had to go for another biopsy on my gut. These are two of the worst things you can do and I hate doing both of them. I was very worried and couldn’t go back to sleep so we watched the Bee Movie (I love) and Camp Rock. The nurses came in at 9 to do the NG tube. An NG tube is a thin tube that goes up your nose and is treaded down the back of your throat and into your tummy and it is a horrible feeling when it is going down your throat. Paula the play nurse was there to help me and Jenny and Karen (my two nurses) where great. When the tube was down they attached a bag to the end of the tube and it took all the fluids out of my tummy, which should help me not be as sick as I have been over the past weeks. Just when we were finished the ambulance people arrived to bring me to the RVI. The hospital I’m in is closing down slowly so all operations have to happen in another hospital in Newcastle. It is a very strange, and not great, feeling travelling in an ambulance. This is my 4th gut biopsy and this one was required to see if my GVHD had gone and if my upper and lower gut had improved. Having this done on a Sunday is actually not a bad thing as it means that you are not waiting for ages and ages. The operation was over and I was back in my own bed by four o’clock. Every time I leave my room all the nurses and helpers come into my room and clean it from top to bottom so I know I’m coming back to a lovely clean bed and room. Then I had another surprise. One of my best friend Laurna (from my school) and her mum had arrived over with my mum. I’m sorry Laurna that I was so wrecked that I couldn’t spend a lot of time talk, but it was lovely to see you and thanks for coming over. Sunday is hand over day, so Mum is staying this week and Dad and Nana are going home. Thanks Nana for coming over to see me. Well that’s all from an difficult and exhausting day. Lets hope that my results help the doctors to decided what to do next so I can get better. That’s all from Newcastle. Lots of love Naoise.

Day +92 & +93

Hi all, it looks like I’m just going to be updating my blog every second day, I’d like to continue on a daily basis, but sometimes it is very difficult. Last time I updated my blog I mentioned that I had a crap time, well that time has continues on. Friday and Saturday were busy and crap. I continue to be sick quite a lot and very tired. I’m sleeping slightly better, but when I do wake it is to be ill and that is just draining. My Nana Ruth came over last Thursday, not sure if I mentioned that before and she has been with us for the past couple of days. It is very nice to have her here, its just a pity that I don’t have the energy to enjoy her more. The doctors continue to talk about my CT scan and I may need to have another biopsy, which would just be terrible. I’m going to say nite nite now as I’m tired and I’m going asleep. Lots of love Naoise.

Day +91

Hi all, sorry I didn’t get time to update the blog yesterday I was just too tired yesterday evening. Last night was ok, I was only up about 5 times which isn’t too bad for me, but each time I was up I was sick, which makes it a crap night. Today was a difficult day. I had to have a CT scan in the afternoon and in order for it to work I needed to get a liquid dye. This liquid dye couldn’t go through my central line as it might block it so my choices where to have an NG tube (a tube down your nose into your tummy) or a canulla (a small needle placed directly into your vein). This was a crap choice as I hated both of them, so first thing this morning Anna (my nurse today who is brilliant) had to put this cream which numbs your skin all over my two arms and hands. Then I just had to wait for the doctor. I haven’t had to get a canulla in for years as when I was in Temple Street they used my Portacat, but that had to come out for my central line. Theresa (one of the doctors) came to do the deed. I had to hold dads hand to keep calm, well in fact I had to dig my nails in to dad. But even that wasn’t enough so I just screamed while it was been done. Theresa was great, got it first time. During all this excitement my nana Ruth had arrived over for a visit. After all this stress I went for a sleep. When I woke up I had a chat with nana and we watched some of Hairspray Movie. Them Debbie, the OT lady, came in to finish off some work we started yesterday, this was fun. My CT was scheduled for 14:00 so we went down to the x-ray area. I hate new medical things and I was really worried as I had never had a CT scan before. When I got there I had to have this big needle of dye through my canulla before my scan could start. The CT itself wasn’t too bad. Then we went back to my room where Amanda was waiting to have some play time. By 16:00 when play, doctors, nurses, visitors, CT Scans, canullas, checks & medicines where all over, I was wrecked and so went for a sleep and woke up for the 18:00 edition of Friends. My evening continued to be crap as I was sick quite a lot. Dad and I watched the 2nd Eurovision semi final, which just shows you how good the TV is on a Thursday. That’s all for this evening, the end of a truly crap day. Nite nite, Love Naoise

Day +89

Hi all, well today wasn’t as busy or as hectic as yesterday, well nearly all of today. I had an ok night, I was up about 6 or 7 times but each time I got sick as well, which isn’t a great way to spend a night. M new thing, or should I say dad’s new thing, is that I have my shower first thing in the morning. I hate it as I would much prefer to just lie there for a couple of hours, anyway I had my shower and got back into a nice clean bed. I had my 10:00 morphine boost and feel fast asleep while the Bee movie was playing. While I slept Dad went for his shower. When I woke up that’s when things got really busy. First in was Amanda and a lady from the occupational therapy team came in and we did some drawing. Later in the week we are going to do some papier-mâché. Shortly afterwards Elizabeth, my teacher came in and we did some work. Then two of the physiotherapist came in, by this stage I couldn’t even talk to them so I just looked and nodded. Sorry ladies, but just too busy this afternoon. After all that excitement I had to have a little early evening nap and surprise surprise I woke up in time for the 18:00 Friends. Each Tuesday afternoon all the doctors on the ward have a big meeting to talk about us. This week they decided to reduce my steroids to just 2.5mlg per day and to order an MRI to check out my tummy. They are hoping the reduced steroids will encourage my own immune system to come out and fight some of the virus that are making me feel so sick. In general my bloods are doing well with my WCC @ 4.3; neut @3.07 which are ok. Lets hope these changes help my sickness. That’s all for tonight. Thanks to Patricia and Greg for my cool teddy and other goddies – I love them. Nite nite Naoise.

Day + 88

Hi all, Mondays are always really really busy and today was no different. I had an ok night last night. I had some morphine at 10:30 which helped me sleep until about 02:00 and then I was up for about 90 mins before I had another bit of morphine and slept till 05:00, from then it was every 40 mins, loo, sick, loo, sick. For a change I had my shower in the morning which was tough because it hard to tackle the shower when you are attached to loads of leads. Then Theresa, one of the doctors came in to check on me, she decided that I needed an x-ray of my chest to ensure it was ok. Just after Theresa the boss, Prof Cant came to see me. He said he was on his was to Leeds but just called in to check on me. He was happy with my progress and had some good news. He said my bloods were good for the last couple of days and he felt that it would be good to go out for a little walk later on in the day !!! Hurray, that’s the first time I’ve been out since about mid March. I had some more morphine and then went for a little morning nap while dad went for his shower. I was woken by another doctor who had come to check my tummy and he requested another x-ray. So back the lady came, this time for an x-ray of my tummy. All of this happened and it wasn’t even lunch time !! The afternoon continued very hectic, I had to have some bloods and platelets as well as my normal medicines. It must have been that I was excited, but before I got the all clear to go for my walk my temperature spiked and we had wait. At last at 16:00 I got dressed and went for my walk. It was only a short walk to the end of the corridor and out the front door to one of the seats outside. The sun was shinning but it was a little cold. I walked slowly and I was delighted to get out, but a little nervous. We met loads of people when we were out. Then it was time to come back. Amanda came in and we made the last of my soaps just in time for Friends. It’s now about 9 and I’m totally wrecked and am about to go asleep. I hope I’ve a good night. Today was such a busy day. Before I go just some thanks, thanks to Anne Mangan for the fab presents, I love the make up and my favourite colour. Also thanks to my grand ant Anne from Australia for the lovely card and great card game. It’s just so exciting getting anything in the post.

Day +85 and +86

Day +85 and +86Hello Everyone, today is Saturday so its a quiet day in the ward. Yesterday was a bit of a nightmare, the doc came in for the usual check in the morning and couldn't hear anything in my tummy which is a bit dangerous as there should be gurgling in everyones tummy. So she call for an X Ray which showed up clear and then a ultra sound which was clear as well, phew. Then Prof Cant called in and he could hear gurgling in my tummy. Then the tummy doctor was called in to see if I needed a tube in my tummy to take all the fluid out cos I'm getting sick all the time, but she said no I didn't need one thank god!! So it was a busy day! Then the best thing ever happened 4 packages arrived for me by courier! I was very excited when I opened them cos in the boxes was pink candy floss maker, a soap maker, a guitar for the WII, two DS games, one is dress up for dogs!! Downfall, a roundy jigsaw of the world which I have wanted for ages, a high school musical DVD game, a brownie mix, a scone mix and a chocolate cake mix with lots of icing and things to put put on top. A guitar game for the WII... it will keep me busy for ages. Me and Mum played Downfall, I won!! And today me and Paula made soap it was absolutely brilliant, I made a sparkly fairy soap and a love heart and an angel and a flower. The boxes came from everyone in Mummys work, so thanks to everyone in SimulTrans, mummy called them out to me so here goes: A big big thanks to Kenneth, Ken, Robert, Joanne, Anthony, Marie Humberto, Maeve, Judith, Jenny, Niall, Rama, Sita, Ulrike, Greg, Adrian, Dave, John, Brian, Mary, Victoria, Margarita, Clara, Joan, Caroline, and another Joanne. Hope I haven't forgotten anyone. The boxes were wrapped in in my favourite colour pink with really fab ribbons on them which I am going to us to make stuff with. Today was a much better day than yesterday, I had a terrible pain in my tummy when I woke up but then I had some morphine and was grand. I think I might have some more before I go to sleep. I was throwing up a lot today so the doc Teresa has given me more anti-sickness medicines so hopefully that will work... am still on the toilet at lot :-(. I'm not allowed drink or eat anything until my tummy gets better although I was allowed have a lollipop today which was great. I don't really feel like eating so its not that hard. I do get very thristy though. The telly broke this evening and we didn't know what to do, Sanjay popped in for a visit and couldn't fix it, he went to get Paula who fixed in no bother, thank god, can you imagine having no TV! Sanjay is coming back tomorrow for some Karoke, Daddy is bringing over my mikes for SingStar! Yesterday we had a Westlife Day were I played Westlife all day and watched the DVD of them playing in Croke Park. I'm going to Watch Britains Got talent now so gotta go. Oh my blood counts are not bad today Platelets are 42, white count is 2.5 and Neutraphils are 1.63..:-). Love Naoise xxxx

Day +82, +83 and +84

Day +82 and +83
Hi All, so sorry I haven’t updated my blog in a couple of days but I was so so sick and had an horrible time. My anti-sickness drugs have been changed around a bit so that is making me throw up all the time so between that and going to the loo all the time I’ve been very busy. On top of that I got terrible pains in my belly so the X ray lady came and took an x-ray of my chest cos the doc thought I might have pneumonia but that is was clear so it turns out I have somehow pulled a muscle mostly likely from getting sick all the time :-(. Also I’ve had to have oxegen for the last two nights so that doesn’t help me sleep either. After all that business I finally agreed to have some morphine, a little bit and first and now a big bit, it has worked and now I’m comfortable and chilled out again. I also was getting terrible spasms in my legs and back which is a side effect from one of my drugs called Ambersol and I’m not getting them so much anymore now either. I haven’t really being up to doing anything lately, Amanda has come in for chats and we’re in the middle of make a pencil case. Susan is coming today and Paula is back today too. I am off my drug that I can’t eat or drink on Yay!, although I haven’t felt like eating much yet. I think I might be sleeping a lot more now on morphine as I get it every four hours which is a good thing although I really want to stay awake for the play nurse to come. My blood counts are not bad today, I don’t need a blood transfusion but I do need platelets. Last night I hardly need to go to the loo at all BUT was up all night throwing up…. When will all this stop!! Soon I hope. Will update you later on on how today goes. Love Naoise xxx

Day +83
Well I woke up not feeling too bad this morning, had some Morphine and fell back asleep. Susan came at 11.00 but I was asleep. She came again when I woke up and we coloured in our porcelain plates, after that I listening to Westlife and chatted to Bettany who has been looking after me this week. Then Mary the Doctor came just as I was getting sick, she said that we couldn’t have that so she called in another doctor who is a specialists with sickness. She came into see me for a long time this afternoon and she was really nice. She is trying to figure out how we can get rid of my spasm pains too. So we have a new plan of action now. My tummy is full of bile which I keep throwing up so she said I should take this medicine which pushes all the bile out while I’m on the loo. My belly is pressing on my lungs which is why I need to have oxegen. If this doesn’t work I will have to have a tube put in my nose again and my belly drained….so not looking forward to that!! Now for the good news is, my rash is still gone, my swelling is not so bad, my blood counts today are platelets 37 (need another transfusion), White count 1.6 and neutraphils are 1.03 so they are going up a bit! I didn’t need a blood transfusion today and I haven’t been to the loo as much as I have been going. Paula came in for the big chat with the doctor and when the doc went Paula and I made a card for Cath. Cath is one of the nurses who looked after me a lot in the beginning, she is so nice but she is leaving today :-(. Paula and I made her a necklace and a card. We tricked her into coming into my room by saying we needed a drugs checked. We gave her her pressies and she started crying which started mummy off so I was stuck in a room with to cry babies :-)!! Best of Luck Cath and those neo natal babies are so lucky to have you looking after them now.!! Best be off now cos I missed the 6 o clock friends so gonna catch the 8 o clock ones..xxxx P.S Mummy took a picture of me asleep today its not a great look for me xxxxx

Day +81

Hi Everyone, well today was pretty quiet again. I wasn't feeling very well so I slept a bit in the morning and another bit in the afternoon. I've been feeling sick all day too and I got a bit sick last night cos my blood pressure went up and I had to take disgusting medicine which made me throw up :-(. I had a bit of a fever so my antibiotics have been changed again. Amanda or Paula wasn't in today so me and Mum watched a DVD called Music and Lyrics, then I had a shower. In the afternoon I watched come dine with me and friends. The new medicine I'm on is constant tranfusion so I'm always attached to my machine and we have to drag that into the bathroom for a shower with us, its a bit of a pain. I've been up and down to the loo all day today too. Last night wasn't too bad, I was up about 6 or 7 times. Some of blood counts have gone up a bit but my platlets and HB (red blood cells) dropped again. I had to have two blood tranfusions and a platelet tranfusion today. My counts today are platelets 6.9, white cells are 0.5 and neutraphils are 0.24. Mum brought over my playstation and Singstar we tried to play it today but the microphones we have here won't work! We were going to have a singing competition. The doc said today they might keep me on my new medicine a little while longer, I got a bit upset cos I can't eat or drink and I have real hunger pangs sometimes. They are having a big meeting tomorrow so we'll know by tomorrow afternoon the plan of action. Am tired now so gonna try to sleep. Thanks everyone for your comments I really look forward to reading them. They cheer me up! Nite nite lots of love Naoise xxx

Day +80

Hello Everyone, well today was pretty much the same as yesterday pretty quiet. Amanda came and we finished our window box, its on the outside of my door. I sprayed it with perfume so it smells really nice. I keep getting hungry and thinking about what I can eat on Tuesday evening, right now I'm thinking cheesey chips and I saw an add on the TV for new birds eye spare ribs which are frozen so I would be allowed them!. My bloods today are staying up my white cell count is 0.4, my neutraphils are 0.2 and my platelets have gone up to 61. Am feeling happy about that. BUT my gut is still the same, I am still feeling really sick and tired all the the time. Last night was up about 8 times again so the new drug that I am is working a bit. I slept for most of the afternoon, woke up in time for friends and come dine with me. Tomorrow is bank holiday is so it will be very quiet again. Amanda isn't in so me and Mum will do something. I have some new DVDs to watch and I also have my playstation now so I can play Singstar too, maybe we will have a go at that tomorrow. I have Singstar Abba which I love. I also have new pictures of my doggies Harvey and Gizmo, they are so cool.. Nite Nite, love Naoise xxxx

Day +79

Hi all, last night was ok, I was up about 7 times which is very good for me. I think I’m getting some better sleep and I so need it, I’ve a lot to catch up on. As usual Saturdays are always quite around here, there is just a small crew of doctors and nurses on, but they still look after me. The good news today was that Amanda, one o the play specialists, was back and I had a good hour and half play time with her. I made my sister Aine a bracelet which I hope she likes. Dad and I have started to paint a little, we did some on Friday and we finished off more of them today. So with Amanda and the painting I was out of my bed for nearly 3 hours, which is the longest I’ve been out for a couple of weeks. I was wrecked so we all went for our afternoon nap, I think we slept for two hours. Its strange but we woke up just in time for Friends. I’m still on that new medicine which means that I can’t eat or drink, well I can drink a little when I’ve to take my tablets. I know I was eating much before I started this new medicine, but I could eat and now that I can’t it seems hard. Later that night we watched Britain’s Got Talent, which we love, some of the people are very funny. After an ok day it was time for bed. My bloods today were pretty much the same as yesterday so still waiting for a little increase. That’s all for today. Nite nite from Naoise in Newcastle.

Day +77 & +78

Hi all, the last couple of days have been quite. I’m getting a little more sleep at night than before, by that I mean that I’m up about 7 or 8 times a night. But last night I needed to have 2 bloods and 1 platelet transfusion which meant that the nurses were in quite a lot. I know they try hard to be quite but some how you just know that somebody is in the room. Yesterday was quite, dad and me played the Wii for most of the afternoon and that evening we tried the Wii Sing IT and made one of the nurses join in, it was kinda funny, but my dad just can’t sing. Each afternoon we have an little nap, its our new thing. About 3 each afternoon we turn the lights out, close the blinds and have a nice sleep it really helps catch up on the missed sleep at night. Today we spent the morning painting using acrylics, it’s funny the morning just flew by. Teacher came in about 1:30 and we did a little work and then it was time for our nap. The doctors want me to try a new medicine that will stop the blood going to my gut which will give my gut a rest and help it to heal a little. I’ve to take the medicine for 72 hours and see how we get on. The problem is that I can’t eat and only drink a little while I’m on this medicine. The not eating is not a problem as I’m on something called TPM which provides me with all my neutrinos through my central line and means that I don’t feel hungry, the not drinking will be hard. Prof Cant has reduced my steroids down to just 10 mlgs per day, last weekend they were at 500 mlg. The hope is that this will encourage my new bone marrow to start producing all my bloods by itself, it hasn’t happened yet, but lets hope that it does by the end of next week. To allow everybody follow my bloods progress I’m going to print them each day, so here are todays, Platelets @ 29; WCC @ 0.2; Neut @ 0.08 – so watch out for these little buddies. That’s all for tonight. Thanks to everybody for my emails, sorry I can’t respond to them all. Lorna it was great to talk to you, sorry that we got cut off it was dad’s fault. Nite nite, love Naoise.

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.