Day =100!!!! + 101

Hi all, You remember I mentioned that the Prof Cant wanted me to start a new drug called Siralimus, well I started that last Wednesday and it seemed to be doing something, I wasn’t up to the toilet as often which was good but then my tummy got huge and rock hard. Then on Friday I was told that I had Pancreatitis and it was quite serious. Prof Cant decided to stop the Siralimus as he thought this was the cause of my pancreatitis, he said that there was a 1 in 1,000 chance of this happening but as always if there is something strange to happen then it will happen to me!! So I am in 1000… how unlucky is that! I don't think I'll ever win the lotto!! Today my tummy is still huge and rock hard but it looks as though my pancreas is slowly going back to normal. My bloods are down a bit today. The pancreatitis caused them to go up a little but now they’ve come back down. My tummy is still very big and tender to touch and I’m still on a lot of morphine which helps to keep the pain away but can cause me to be very sleepy. So now I have GVHD, the adnovirus, an infected gut and pancreatitis so I need a new plan. The results of mummys bloods came back from Great Ormond Street and her white cells can fight the adnovirus. So on Tuesday they are going to take loads of mummys blood and send it to London where they will extract out the fighting cells and them put them into me. The hope is that mums cells will help my immune system and get rid of my adnovirus or at least keep it at bay. So the plan is that they will give my steroids a couple more days to see if the GVHD comes under control. My rash is still all over my letg, tummy and arms but it doesn’t seem to be as red. If I don't improve hugely by Tuesday then we will start ATG. This medicine kills all my T cells and will bring my GVHD under control but it will also set back all my blood cells to what they where on Day +1 so its like starting all over again. Its all a bit scary cos ATG will activate any virus and infections that is in my system so that’s the risky bit. I won’t have any immune system to fight them off. Yesterday I spent most of it sleeping but woke up for Friends and Britain Got Talent and the great news is that it will be on every night for the next week so I’ve got something good to look forward to each evening. Me and the nurses have come up with a plan which I’m very excited about. You know the way my Birthday is on Christmas day and sometimes my Birthday gets a bit lost cos that’s a big day for everyone. Well we came up with an idea for me to have a half Birthday. Its on 7th June and it’s a pink party. We are sending out half invitations and everything is going to halves J. I can’t eat anything so the play nurse and me are going to make a cake out of lollipops as I’m allowed to suck them. I’m also allowed to drink juice. Prof Cant was in today and he thinks I am much the same, no better no worse. He did think my rash was improving though. Mummy went into town today and got 2 pink outfits for my party, so I have to pick one out. She also got me cool pink sunglasses and a pink pearl bracelet. Paula came today too and we are making a bowl of fruit with clay. Will send on a pic once we’re finished it looks really good. Well I’m going to have a nap now so I can stay up for Britian’s Got Talent tonight!! Thanks to Jimmy and Una for the medals, I am wearing them now. Also for the magazines..!!! And to Mairead who works with Daddy for the lovely pink Card! And Aisling thanks for fashion set, and also to Bridge for the funny quotes from the kids..!! The nurses say I’m the most popular girl on the ward cos I’m always getting letters, I am so lucky!!! Lots of Love Naoise xxx