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