Childrens Welcomes Us Early

Well I'm back to blogging from the inside of Childrens Memorial. Before we left the house today to bring Marriana in to get her port and start her GCFS I said to Dave I better pack Simon and myself a bag because we both knew his g-tube infection was not getting better and the only thing to do was start iv meds. Well that is exactly what happened. Along with this we are told we will be postponed a week. Simons chemo and Marrs shots are going to have to wait. I knew the infection was getting worse and the calls and trips down here and the meds just didn't help so before we deplete his immune system more, we have to get rid of the infection or face the risk of having more complications and losing him during transplant. That, for us, is not an option. So we sit and wait for the meds to kick in. It sucks but it has to happen.

The girls had a great day here today. Ms. Heidi took them to the playroom for arts, crafts and playtime. They received 2 new books each and then at 2 pm they had a pajama party sponsored by The Childrens Place. The kids all got wintery pjs and a new backpack and book. We layed in sleeping bags and listened to stories. The only good thing about Simon not starting chemo is that we all can still be in his room. So for the next 7-10 days this is where we will hang out. Dave had his last day of work until we get through this so we can switch off every 2-3 days and get rest at home. It still is hard on us not to be together and to be alone here as things come up. We also requested and were granted a cot in this room. That is a no no up here but this is a big room and they let us before so for now, we don't have to sleep on a chair bed.

We were blessed to have the special prayers done here at the hospital as Roger and Betty came down special to see us and to bless Simon and Marriana. Thank you for doing that. Simon was his charming and giggling and happy self. The girls were getting a bit wired and running around and he was screaching and playing right with them. He is amazing.

Okay, well that is the update. Please pray the infections leaves soon and that this is our only stumbling block for this transplant. We need for things to go smoothly and for the donors cells to be 100%. God Bless you all and thank you for reading and for caring. Love Tracy and David