Please everyone can you send an extra prayer for our sweet Claire. We have been in the hospital dealing with mucositis. We came for platelets on Thursday and haven’t left.We did labs back home and it showed she needed platelets and couldn’t wait. So off we went to Childrens. Claire has never had to be poked twice in one day and she wasn't having it. When we tried accessing her port she moved and it bent the needle so we had to start over. Let’s say she was less than impressed. But when it came time to do it again they couldn’t see her port and she said it hurt. SO off to xray we went to see if it moved or what was going on. The xray showed it was fine and still where it needed to be. They think she had/has a hematoma on top of her port from low platelets and that's causing us not to see it and for the pain. Now she is traumatized and wont let anyone touch her dressing or anything near her port and I don’t blame her. She had to be given ativan and benadryl to calm down to access her port. She did fabulous even though she was really scared. Throughout this whole thing she has never said she was scared till now. She looked at me and said mommy I am really scared. I reassured her everything was going to be ok and I wasn’t going anywhere. The pain a parent feels when you have to hold down your child to have a giant needle poked into their chest is just a whole diff kind of pain. She has had an anc and wbc of 0 for over a week now. She has never had an anc of 0 for over 2 days. Since the platelets started way later than planned we decided to just stay overnight at the hospital to be safe as Claire had a low grade fever after the port issues I didn't want an unnecessary run to the ER if she spiked an actual temp. On Friday she was still going back and forth from normal temp to low grade so I decided to stay again. Good thing I did since she ended up spiking a temp later that afternoon and by Friday night developed the mouth sores. We think her very low counts is why the mouth sores showed up this time as her body can’t fight them off. She has never had a mouth sore this whole time.  Please pray for her to have some sort of wbc and neutrophils tomorrow so we can fight these sores and go home. I don’t think we will be going anywhere anytime soon.  She is now on a morphine drip for the pain and TPN since she hasn't eaten since Thursday. On the plus side she is still able to drink with no pain. She has also had 3 platelet transfusions (another one is coming today or tomorrow) and 2 blood transfusions so far since this last round ended. She has never needed this many. I am hoping we are going to start to see an increase in numbers any day now. It’s hard to just play the waiting game. I am really hoping we go home before Thursday night or we have to replace her port. You can only leave it in for 7 days.  But we will cross that bridge when it comes and hopefully she wont be as scared if we have to take it out and replace it on the same day. 

We were enjoying our time at home. Clare got outside a lot and is working very hard at her  PT. She even took marley for a walk by herself. I also have the best group of friends who are putting on a benefit for Claire. We hope to see you all there to celebrate Claire’s end of treatment. Please keep Claire in your thoughts and prayers only 2 treatments to go. Hopefully this is her only  major setback.