Hi All, Sorry I didn't update my blog yesterday but I was very tired and a bit sick. Emma came again to visit, we chatted on the phone for a little while but then I got tired and had to go back to bed. Thanks so much to Barbara and Emma for coming over. It really lifted my spirits and it was great to have a chat and catch up on all the gossip. Still haven't managed a nights sleep :-(. Am still up all the time and am on some new drugs which are giving me spasms in my legs and back, only at night! Yesterday I didn't eat much and watched a bit of TV and had my visit with Susan who is from the psychology department, we made finger puppets and a frame. I slept on and off for most of the afternoon and watched the final of Hells Kitchen. This morning I ate a little bit of a smoothie for breakie, a few chips for lunch and a tiny bit of pasta for tea. I have two pieces of big news, yesterday I got a card from my donor!! It is a lovely blue card with yellow flowers that has a verse about things growing, I was thinking it was a sign that my stem cells are growing! I am going to make a card with Paula to say thanks and send back to my donor. Its anonymous it just said ‘from your donor’. The second bit of news is that I got the first bit of my biopsy results this evening, its good news my GVHD is now gone along with my rash. So this confirms the problem with my gut is an infection. It’s a bad infection and we have to change my drugs around now as I don’t have an immune system to fight it and my blood levels are very low. The results also showed that it had healed a bit from the last night time which is really good news. Its great to get a bit of happy news for a change! This is the best news since March! Because my neutraphil count is so low I still feel rubbish so hopefully in the coming days and weeks I will begin to feel better again right now I am tired and sick all the time. I was so sick the other night that I threw up the tube in my nose. So now I am trying to swallow tablets in the hope I won’t have to get it back in again. So the Stem Cell treatment in Holland actually worked cos it got rid of my GVHD so Jimmy & Una you were right, the tulips were growing at the same time as my cells. Thanks to Triona in Temple Street for my fab westlife photos.. am planning to put them on my wall just have to find some space, am dying to put them up they are really good and for my High School Musical book!! Thanks to Robert who works with Mummy for my arts and craft stuff, and for the holy water from Lourdes.. it has hopefully worked!! And thanks for taking Mummy out to dinner J Also Thanks to Paula, Sadhbh and Phil for the books!! We are wondering what to watch tonight as Hells Kitchen is not on, I might have an early night as I am so so tired and will be up all night yet again..!! Lots of Love Naoise xxx
That is fanastic news ... well all the good stuff of course. Always hoping that one of these nights you'll sleep so soundly that you'll have to be woken up with breakfast!
ReplyDeleteThat's the best news , Naoise. Hope the new drugs work quickly & clear up the infection so you can sleep well at night. Lots of love, Patricia & Niall
ReplyDeleteOh Naoise,
ReplyDeleteYour blog was just so wonderful to read this evening. So much good news. It's brilliant about your GVHD being gone and the rash and the signs that the stem cells are doing their job and growing like those tulips you mentioned!! I know you are exhausted pet but you must be so so happy too. I'm sure it will be more and more good news for you from now on. That card from your donor came on a very good day for you. It sounds really pretty. I'm sure your donor will be delighted to get your card in return.
Luke was pretty sick yesterday here and had the runs and was throwing up. I think it frightened him a little. It must have been a 24 hour thing as he is back to normal since mid morning. He only ate light foods today. We are hoping nobody else in the house gets it. He stayed home from playschool today.
I popped into town today to get Ross his stage clothes for a dress rehearsal on Sunday at ITW. He is playing the part of a 'Gentleman of Japan' in a show called 'the Hot Mekado'...I don't know it either!? He has to wear a black shirt, black trousers and black canvas shoes. ITW will give him the accessories he needs to go with the black clothes. I'm very curious to see what it's all about when we see the show on May 10th.
Anyway Naoise, congratulations on all that great news. We are thrilled for you. Hope you manage a few hours sleep tonight. I look forward to reading your blog tomorrow.
Nite nite.
Heaps and heaps of love
Margaret, Vincent, Ross, Greg and Luke
xx xx xx xx xx xx xx xx xx xx xx xx xx
Hi Naoise
ReplyDeleteI heard your news earlier from your Nana & Granddad and was so happy. So were they, I could just hear it in their voices. I actually wanted to cry with happiness!
You really deserve this bit of good news Naoise. Those great stem cells have done some trojan work. Hopefully it won't take them long to get you all better & then they can settle down & live happily ever after inside a happy & well Naoise! Though as I said before, they couldn't have done it without you and even when you haven't felt strong you have been so incredibly strong.
That was very special to get a card from your donor and lovely of you to send one back, which will be equally special to him or her.
No news here really. My sister & her new in-laws are coming to visit my parents on Sunday so we're all going there to meet up. We're making brownies & Caoimhe says she wants to make something too. It’s her first expression of interest in anything to do with cooking so we’re going to look in the cookbooks for a nice but not too difficult recipe tomorrow.
Am off to bed now just wrecked…these bright summer evenings are tough getting everyone to bed. Donncha screamed forever to get out of his cot, Caoimhe & Cormac went between hyper playing & hyper fighting and Jack was begging non-stop to come downstairs to watch Barcelona vs Chelsea (we gave in!). So while they wouldn't go to sleep, all I wanted to do was hit my pillow!
Hope you manage a good night’s sleep & that the doctors get you onto that new medicine soon to help fight that bad infection. Thinking of you always and saying lots of prayers that today’s good news is followed by lots more.
Lots of love
Aisling
Hi Naoise,
ReplyDeleteSo, so happy to hear the great news about the GVHD! Thank God your stem cell army did their job. Hopefully now the docs know what they are dealing with all your toilet trouble and sleepless nights will be a thing of the past.
What a nice card you got from your donor! I'm definitely going to put my name on the donor register!!
I hope you find a new programme to get addicted to. I hate when my favourite series end!
I hope you manage to get some sleep tonight having heard the good news.
Night, night pet! Paula x
Hi Naoise,
ReplyDeleteIt is great news about the stem cell I could have cried with happiness everyone just so happy I know you are still very sick but there is a bright light at the end of the tunnel.I hope to got the photo of the tulips and you can pin it up on your wall and know they are still growing.Lilian rang me with the news because I was out and had not read your ,I in turn rang Emer ,grainne and Siobhan with the news ,WE ALL FOLLOW YOUR PROGESS'
Lots and lots of love Naoise ,keeep up the good work.
Jimmy and Una
hi Naoise,
ReplyDeletesorry we havn't been able to log on to your blog for past few days - I was really happy to hear things are looking up for you - it was worth the wait!! Thats great news about the GVHD & that the stem cells did their job!!
It must have been great for you to have Emma visit u & lovely to get a card from your Donor, U have so many people following your blog now!
No news here, Sadhbh came for sleepover on saturday - both herself & Séadna were really good they were asleep by half 10!! So much for Séadna's plan of waiting for me to fall asleep so they could have a sneaky midnight feast & watch TV ;-) - as i told her before i'm too smart for her plans!!! haha
Hope things continue to improve & u start to get some full nights of sleep!
Take care
luv Maggie & Séadna xx
Hi Naoise,
ReplyDeleteThats great news, im so happy for you honey. You have had such a rough time, you really deserve a bit of good news. Its great that the GVHD has gone and so has your rash. I hope you start to feel better soon.
Thats so lovely of your donar to send you a card, and thats very nice of you to send one back.
I am sure you have already heard but Audrey had a baby girl last night! They are both ok. I was babysitting Kiel last night, he was all excited. Me and Nana are going into the hospital this evening to visit Audy and her new baby girl.
Take care honey. Hope you start to feel better and start to get more sleep.
Lots of love,
Aunty Chrissie x x x
hey naoise.its hannah.
ReplyDeleteits gr8 to here about your progress.
in french on monday,we made paper dresses like we did before in 4th class.it might sound a bit .... off subject...but we are learning about clothes so we had to make loads of stuff!!!!!!! the bake sales on friday and were off at 1,ohh and hannah montana the movie is out.,it looks good.ohh and on the 18th of may me and my basketball class get off school from half 9 till 2!!!!!!!!!! we get off school! well ye bye my ice-creams melting!!!!!!!!!
love hannah,keep on fighting!!!!!! :)