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