Hello Everyone, Today and last night were not good at all. Really awful. I had another sleepless night. This morning I decided I was hungry, I had cheese on toast and then a cereal which was way too much cos I haven't eaten in so long. I spend all morning and all afternoon going to the loo and haven't been able to catch up on my sleep at all. The big news is that the steriods and infliximab are not working as well as they should, I'm not really getting any better. So instead of having a drug called ATG which was sort of the plan, Doctor Slater came up with a better plan. I'm off to Holland on Tuesday for some stem cell treatment, its call Mesenchmal Stem Cell. In Holland they have a bank of donors and I will get a transfusion of some more marrow, this should sort out my gut problems which is caused by GVHD, this should hopefully balance out my cells so that I will have all good cells and no bad ones anymore. Its kind of a new treatment but has the doc says it has great success results. I get to go on a private jet plane and an ambulance will meet me on the tarmac in Holland a place called Leyden and bring me straight to the hospital. I don't even have to go into the airport building. Mummy and Daddy, a nurse from here and a paramedic are coming with me. On the plane I will be in a bed, how strange will that be, not sitting in the plane but lying down! In the meantime I have to try and get better but it doesn't seem to be happening at all. I'm still feeling sick and miserable, and the pains in my tummy are just not going away. Talk tomorrow, love Naoise xx
I'm sure the doctors are doing what will make you better the quickest. I really hope you get some sleep tonight, you poor pet! Roll on Tuesday, and the stem cell transfusion, and you getting back to your new improved self!!
ReplyDeleteWe're with you all the way,
lots of love
Auntie Nina
Oh Naoise you poor thing! was so happy when you were feeling better yesterday. You must be so fed up with it now, well you certainly have an adventure ahead of you private jet etc.. I have a good feeling about it, sounds like your going to a top place to sort you out. After this you will not be able to travel on a plane regular class with all the special treatment(which of course you deserve. I'd say you just want to be there now rather than have to wait till Tuesaday. We'll be thinking of you the whole time, stay safe.
ReplyDeleteSiobhan(Sophie and Isabelles mom)
Hi Naoise,
ReplyDeleteSorry you feel so bad naoise. hopefully your trip to holland will sort you out and make you feel better. I'm sure the doctors are doing this because it will help you. Best of luck and we will all be praying for you back here.
Take care
Paul
Hi Naoise,
ReplyDeleteIm so sorry you had such an awful day, you poor pet. I hope you have a good nights sleep tonight. I really hope you feel better soon and I hope you have a better day tomorrow. It was lovely to talk to you earlier on the phone. Wow a privat jet to Holland! Take care honey. We are all thinking of you and praying for you Naoise.
Lots of love,
Aunty Chrissie x x x
Hi Naoise,
ReplyDeleteSo sorry pet that the meds aren't doing what they were supposed to. I hope they can give you something to make you more comfortable until the big trip on Tuesday. I'm sure Dr. Slater wanted to come up with the best plan possible for you as you are such a special patient. You'll have to tell us what it feels like to fly in a bed - like super 1st class!!
I hope you manage to get a bit more rest tonight.
Lots of love, Paula
hi honey
ReplyDeletethats terrible but at least ur going to feel better when u get the stem cells oh u poor pet going to the loo so much but i feel ur pain hun .
cant believe that private plane ohhhhh yeah cool cant wait to hear all about that i really hope u start feeling better soon .
ur doing great honey ur amazing i swear.
im doing a tv shoot tomor 4 expose im sooo nervous silly amnt i .il let u know how it goes. i hope u get on well tomor . talk soon honey keep smilling xxxx
Hey Naoise..
ReplyDeletehope the trip to Holland works out well.. that is a cool way to travel alright!!! Say hi to your Mum for me...xx Annemarie Leonard..
Hi Naoise
ReplyDeletesorry to hear your feeling so bad U must be exhausted - hope u hav great sleep 2nite.
We will say lots of prayers for your trip to Holland that the stem treatment does the trick and you start to feel loads better really soon! At least u'l be travelling in style ;-)
Luv maggie & séadna xxx
Hi Naoise,
ReplyDeleteWe are all really sad because we thought you were getting a bit better and now today. :(
Poor you its so unfair how such a bright lovely girl like you has go throught all of this but you are like Pollyana who is in great sadness but always finds something good about it like you are happy about the private jet and stuff.
And when the treatment is after you will be a lot better!!
So good luck in Holland!!
Love you loads
Ailbhe and the murphys
xxxxxxxxxxxxxxxxxxxxxxxxx
Hi Naoise
ReplyDeleteI'm so sorry that your not feeling any better but the trip to holand will sort you out I'm sure. That Dr. sound like he has a plan and I'm sure hes right.
Just to let you know that all the wicklow McGraths are thinking of you.
Best of luck in Holand
McGrath wicklow (the orignals)
Hi Naoise,
ReplyDeletehope you had a great sleep last night & all the sickness has gone!!
take care
luv maggie n séadna xx
Hi Naoise,
ReplyDeleteYou still sound like the brave girl i know and love. Disney sent over a donation to us, do you remember they did it last year. Well i have one or two things that reminded me of you, so i'll get your address from gail and send it on to you. Everyone in Temple street is thinking of you, stay brave naosie,
Triona Your original play specialist!!!
Hi Naoise
ReplyDeleteSo sad you're not feeling any better. The docs are fab and know what they are doing so this trip will be good. You are FANTASTIC and will be a real VIP on this trip to Holland. Thinking of you always hope you get lots of sleep to keep you going. Our best wishes always, God bless Joanne & crew
Wow Naoise
ReplyDeleteWhat a VIP travelling by private plane. Your Mum will be in her element!!! I bet this new treatment will make you feel better very soon and you will be back home in no time. Thinking of you all. Love Eileen xxx
HiNaoise,
ReplyDeleteI think Holland is the corner your Mum was talking about,this is the bees knees and hopefully will set you on the road to recovery very soon, We are all praying for that.Travelling by private jet just like Westlife.Well no elephants last nite only monkeys and snakes.The monkeys are dressed and also wear pampers but i think they are drugged as they are very placid.Say hello your Mum tell her i have tried many times to talk to her ,but it is very difficult to get a good line from here.Lots of love GaGa xoxoxo
Hi Naoise, just wishing you the very best of luck on Tuesdaay. Thinking of you lots and so sorry you had to go through all this but think of the big welcome home party you will have and all the presies! Chin up, lots of love Nuala Matt David Sean and mad Cillian! xxx
ReplyDeleteHey Naoise
ReplyDeleteDid you here Lornas grandad died
poor her
I just lost my voice
it was miss Foleys last day
G2G xoxoxoxoxox Foshla
Hi Naoise, we really really hope that you are feeling a bit better today and that the time will fly until next Tuesday. It sounds very exciting that you will travel by private jet - just like a superstar!! We all are praying alot that you will soon bounce back and be back painting and dancing with Ms Walshe!! Lots of get-well-soon wishes, Ciara, Ellen and Fiona (little sister!) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
ReplyDelete