When Do Things Calm Down and Start the Upward Climb

Well our little Simon continues to be full of life and love and a wild man running all over the house trying to keep up with the girls while he battles his skin issues. I'd like to say his skin looks great and things are improving but it seems we get rid of one skin infection and we are just waiting for the next one to begin. Simon has had little red bumps all over him again now. I'm afraid they might be the same viral infection coming back. I just don't know what to do about it. Dave had him in clinic today for iv infusion of pentamadine which he gets monthly to prevent pneumonia and they decided to stop his antibiotic that hes been on a week mostly due to the fact that simons white blood cells are less than 1.0. As a matter of fact all of his cell counts are in the toilet and it has left me with more anxiety, fear and irritability today that I can manage. The team seems to think the antibiotic has something to do with it but I honestly am afraid that he is losing the cells. They did the vntrs today and we should know tomorrow if we still stand at 99% donor cells. Please pray that they are and this is just Simons cells trying to recover from his skin. He is such an amazing, funny, smart, loving boy. He had a good day of eating today and his weight was up a little with his weekly weigh in so I pray we can start to see that weekly. I'm nervous. I have talked to both of the other families going through transplant and its not without its problems but I have to tell you for any family who goes through transplant with an immune deficiency its a long process and you don't breath easy for the first at least 3 years out of transplant. At any time you can lose the engraftment. Its a hard way to live and a hard thing to really try to incorporate into your family.

A friend of mine said "You are doing great and seem to really deal well with it. Or your pretending really good." You take the days and try to pretend its all ok. The days you actually go on like nothing is wrong in your family and you almost feel guilty about it because you know your partner is home because you can't take your son with you. That you will be on the "watch" for issues for a long time to come still. We have a lot of illness in our family right now, serious stuff and I have to say with the new year I was really ready to put the bad behind us and start to see the good. I so need to see the good. We ask for the miracle of a new working immune system for Simon and for Tom. Its a hard thing to deal with two serious illness at once that affect you so deeply.

I hope everyone values the health they have in family. Its something you cannot buy or acquire but you can choose to try and be healthier and do things for yourself. I vow to do that, as soon as we get our son healthier. Enjoy the everyday, as I always say. Please pray for progress. Pray for these boys to be well and be able to share their joyous personalities with everyone. Its hard to know people are missing out on Simons beautiful mountains of knowledge he awards us with every day. God Bless. Tracy and David