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
Hi
ReplyDeleteOh Naoise, cant believe how much you have to put with. It seems so unfair. And your Mum is so right, you are the bravest girl in the world. Lets hope you can clear the GVHD. Today we brought Isabelle to violin and while we waited we went into Abington(Nicki Byrne and Ronan Keating live there) We thought we might see them, but no such luck, but it was cool to see all the huge houses.
The weather here is terrible here raining on and off all the time.
My mother nhas just come in looking like a drowned rat, she was playing tennis, imagine in this rain playing tennis MAD!!!
Well better go she is sending us to bed now. Hopefully tomorrow will be a better day for you and they will figure out all the correct medication to make you better.
Lots of love
Isabelle and Sophie
xoxoxoxoxoxoxoxoxoxox
Hi Naoise,
ReplyDeleteThis unbelievable the amount of bad stuff you have to deal with....your are so brave. i bet an adult wouldn't be able to put up with half the stuff you have gone through. I think it's about time you got a break and had some good news for a change. Hopefully the doctors can figure out the right balance on your drugs and start get you feeling better. everybody back here is praying hard for you and hopefully have you back here in dublin soon.
Take care nin and hopefully you have a good night's sleep.
take care
Paul
Hi Naoise,
ReplyDeleteI was so mad to read the GVHD is back, so unfair when you've already been through so much. Your mum is definitely right, you are the bravest girl in the world!!
Your new duvet cover rocks!
We bought all the goodies for Oisin's party today, he is very excited! It's all boys so will be madness. Sadhbh and her friend Louise are going to be my helpers because Phil will be in work. I'm really hoping the rain eases off for it.
Naoise we are all praying really hard for you and hope all the time that things get better for you. You so, so deserve a break pet.
Lots of love, Paula xx
Ola Naoise
ReplyDeleteWe are in Spain on our holidays but I got to log on and my heart sunk when I heard the GVHD is back. I´m so sorry that that has happened. You fought it once and I know you will do it again but then that has to be the end of it. I will pray so hard. Your Mum, Paula and everyone is right you are the bravest girl xx.
If you ever decided to be a doctor or nurse you would definitely have to be allowed to skip year one of your course! You know so much already. Mind you the last thing you probably want to do is work in a hospital!
We are having a lovely holiday - the house has a pool so we are swimmming everyday. Though yesterday we went for the first time to the beach and as luck would have it, some poisonous jellyfish decided to visit at the same time so we couldn´t get in! Luckily we found some dead ones on the beach first and then when we checked with the locals they filled us in. The jellyfish apparently are forecast (I wonder how this can be forecast?!) to hang out on their spanish beach holiday for another 3 days so I think we'll leave them in peace for now!
We found some food that everyone in our family likes (besides bolognese and pizza) - its calamares, so I think we´ll be having alot of that.
I can´t help but think that when you are better a big family holiday like Offaly will have to be planned and you will have to have a big input into it after being so so brave and patient and strong in Newcastle. Somewhere sunny would be nice, but remember we still had lots of fun in the rain on the bog tour in Offaly!! :-)
I will try to log on again soon. Even if we don´t post everyday, we are thinking of you all the time - you are are our first thought & words when we wake and our last before we go to sleep. I will pray really hard that they get the right balance of medications for the
GVHD and Ando virus and that you start to get better quickly.
Lots of love
Aisling
Hi Naoise,
ReplyDeleteI cant believe the GVHD is back, im so so sorry Naoise. You poor poor pet. Like Paula, i got so mad when i read that it was back. Its just so unfair pet. You really really deserve a break. I will keep praying really hard for you honey.
Your mum is right you are the bravest girl in the whole world! You are just so amazing and strong Naoise. Ashling is right, when you are all better we should all go on a big family holiday of your choice!
I love your new duvet cover, its absolutely gorgeous honey! Thats great u got new pj's aswell.
We all miss u so much. Lots of love,
Aunty Chrissie x x x
Hey Naoise,
ReplyDeleteI met your Mother when she was home and she told me how brave you have been through everything and how popular you are at the hospital.
I saw your photos and you have a lovely smile in every one of them. You are like your Mom, very strong and very positive. I am thinking of you like everyone else and I am looking forward to hearing some good news very soon.
Ps Mollie says hello!
xx Laura
Hi Naoise
ReplyDeleteSorry I havent posted in a while but as you know Ronan arrived early and then I have been having problems with my computer which is hopefully sorted now! As you know, I saw your Mum when she was home and she was telling me how brave you are - Naoise she is so proud of you when she is talking about you and rightly so! Lets hope I am as lucky with Ronan!
I was so upset to hear the GVHD is back but as Aisling says,you will fight it again and win! Wow I love the duvet - very cool! Hope it makes staying in bed a bit easier.
By the way - you were right when you said that I was having a boy when you saw the scan. Well done.
Talk soon and I hope you get some sleep tonight.
Love Eileen x