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.