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.