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
Hi Naoise, or should I say Nurse Naoise! Well done on changing your own dressing. And look at your hair, wow, it's really coming on. It looks like it feels really soft and fluffy.
ReplyDeleteI'm so glad your rash is gone and that you're not going to the toilet so much! Here's hoping the nose bleeds and the tummy pains start improving too! Did Prof Cant hand over the whiskey yet??
I think a lolly cake sounds fab! Looking forward to seeing a picture of that.
Another sunny day here today. Oisin went on his school tour to Puddenhill Farm, he saw a rooster and hugged a baby goat. Tomorrow he is going to meet his teacher, God help her! Sadhbh is busy practising for her school play next week. Her class are doing a Mama Mia medley. Caitlin fell off the patio yesterday and has a big bump on her forehead and lots of scratches on her cheek.
I hope you have a restful night pet! I totally agree with you on the TV, absolutely nothing on!
Night, night Naoise.
Hi Naoise,
ReplyDeleteI can't wait to see a photo of you with that pink wig you mentioned! The half birthday party seems to be very well planned. Your hair has grown so much since I last read your blog! I'm glad to hear you aren't going to the loo as much now and that your rash has improved. It sounds like the doctors have a few ideas on how to improve things for you and its just a matter of choosing the right one. So sorry about your tummy pains and how you are still throwing up. That's awful for you.
You mentioned pink jelly beans. Luke loves jelly beans. Last time he had some he went out to bury one in the back garden. I didn't know what he was doing at first and thought he was giving some to the birds but they had been reading Jack in the Beanstalk at playschool and he wanted a Beanstalk in the garden. Imagine my surprise if it had worked!! Over the weekend while we were all having dinner and probably a bit too noisy, luke told us 'you are making me a headache'. It's funny because he happens to be the loudest person in the house!
I hope your sleep well tonight Naoise. I'm sorry there was nothing good of t.v. earlier. Better luck with that tomorrow.
Bye for now.
Lots and Lots of Love Always,
Vincent, Margaret, Ross, Greg and Luke
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hey naoise
ReplyDeleteHow are you feeling. Today was the last day of bball. Tomorrow is my birthday!!! I'm gonna be 12:).
It's a good idea about the half bday party LOL. We got no homewrk 2day
So gotta lots of love Maeve
Hi Naoise,
ReplyDeleteHope the pink party preparations are coming along nicely. I'll be wearing pink (for a change) on Sunday in your honour!
We were having a chat about you on the Day ward earlier and agreed that you are brilliant! Especially because you change your own central line dressing. Too fabulous! I see you are showing off those lilac gloves in the picture - I feel very plain in the cream ones after seeing those!
Hope you're having lots of fun with your arts and crafts. Don't worry too much about the rubbish tv situation - America's got talent starts in one sleep. Hooray!
Hope your nose behaves itself and doesn't bleed tonight.
Love and gentle hugs,
Gail
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hi naoise hope you are well
ReplyDeleteand i hope your nose does not start bleeding again lots of love
Colleen
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