Wednesday, May 20, 2009
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
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Hello Naoise,
ReplyDeleteThats terrible your tube came up again today. You poor pet. Im so sorry your CRP is very high.
I really hope the new plan of action and the new drug works. I will say loads and loads of prayers. You really deserve a break. You are just so brave honey.
Im just in Nanas house now. I just gave Sadhbh a piano lesson, she can play a few pieces now.
Take care honey. We all miss you so much and are thinking of you all the time.
Lots of love,
Chrissie x x x
Hi Naoise,
ReplyDeleteIt's 9:48 so you are probably watching the apprentice. I have it recording so I'm going to watch it shortly. I love it, so I record it every week, 9:00 is a bit early for me to be ready to watch the TV. I can't wait to see who gets booted out this week, I didn't think last weeks 'firing' was very fair I liked that girl.
I can't believe your tube came up again. Fair play to Zoe for doing a good job getting it back in place, and well done you staying so calm again. Well the new plan sounds good, lets hope we see some results from it and fast.
The weather is really rainy at the moment, it's driving us mad, it reminds me of the last 2 summers, our climate is changing to monsoon.
Eva and Keelin found a big box of things I had kept for them, supposingly till they were at least 16, how and ever they found it now and wanted to go through it all. Eva's first curl, all their scan pictures etc...Anyway, Eva found the birthday card you made her for her first birthday. It is so cute, you wrote your 'y's' backward, the art work was fabulous though, you were a budding artist even back then.
Anyway hon, sleep tight tonight, I really hope the new drugs kick in very very soon and make you more comfortable.
lots of love,
George
Hi Naoise,
ReplyDeleteSorry for not writing for awhile. That's just awful that your tube came up again today. Thank goodness Zoe was able to put it back without too much hassle. I'll say a special prayer that the new drug you are starting works wonders!! You need a break at this stage. We think you are very brave and admire your spirit so much.
It sounds like you are really hooked on the Apprentice. It's great to have a show like that to look forward to regularly.
Ross and Greg are taking part in their school concert this week. It on for three nights. We went to see it last night and it was really good. Ross appeared three times, once as Harry Headbanger in 'Mama Mia', then in a choir and also he did a solo on his electric guitar. Greg sang and danced in 'Mary Poppins' as a chimney sweep. I had great fun...not..taking off their make-up when they got home!
We hope you have a better night and day tomorrow than you've had lately. Try to stay 'perky' if you can Noaise. You are a real trooper. We will keep up the prayers here.
Lots of love
Margaret Vincent Ross Greg and Luke
xx xx xx xx xx xx xx xx xx xx xx xx
Hi Naoise,
ReplyDeleteI'm so sorry your tube came up again, that's just awful! I really hope the Siralimus, the steroids and hopefully your mum's white blood cells kick all these infection's asses! You are amazing saying you feel perkier with all you are going through, there must be really special things waiting for you in the future to make amends for these hellish months!
I haven't seen The Apprentice yet, I switched it on tonight and saw that there were only 4 candidates left so figured I'd missed too much and am watching Independence Day instead.
Here's hoping, as always, you get some sleep tonight pet!
Thinking of you. Paula xx
Hi there Naoise,
ReplyDeleteThe sun is actually out this morning but not sure how long it will last with all the rain we have been getting recently!
But hey here I am giving out about the weather again and theres you in hospital for the last few months still battling on through all the tough times one after the other.
I think you are an inspiration to us all & just by following your blog it gives us reason to not complain about such trivial (silly) things going on in our lives.
I hope you have a better day today and look forward to hearing all sbout it later.
xx Laura
Hi Naoise,
ReplyDeleteI am so sorry your tube came up again. I hope the new plan of action starts working quickly and cures the infection. You really deserve a break. You are so brave and I am glad you are feeling a bit brighter this week. I agree with what Laura said above, you are an inspiration to us all on how you are dealing with everything. We are saying lots of prayers that you will turn that corner soon.
Your newest cousin, Zoe is now 3 weeks old and is doing well, she is now 8lb12oz.
I hope you have a better day today honey.
Lots of love,
Audy
Awight darlin'!
ReplyDeleteVery jealous of all the trash tv you're fitting in. Kate and Peter stateside - haven't given that any of my time! Your previous mention of Come dine with me had me watching that again. I'm very easily influenced!
I hope the light hearted viewing is making the yucky days a tiny bit easier.
Hope your poor tum settles soon.
Alice sends hugs.
Gail
xxx