Goodbye BMT clinic-with the RIGHT PHOTO:)

I'd say a lot has changed in just one year; don't you think? If you look close, the smile(give or take a few teeth) is still the same!

Emily went to her LAST BMT Clinic visit yesterday.

Are you surprised? SO WAS I!!! Just last month the Doctors were so concerned about Emily's low numbers; then this month, "Your done!"

Dr. Boyer came in to talk about all of her test results and to discuss the "plan". He came in, sat to the side of me, looked over towards Emily never making eye contact, and proceeded to tell me "Well, we really can't do anything more with Emily so we are turning you over to immunology."

I asked him to go over her test results with me and seeing that her numbers are still very low I asked why they were so concerned a month ago but aren't now. He told me in a very slow drawn out and quite depressing way, that "I don't like to sugar coat things" "We just feel like we have done everything we can do and we THINK it was the right thing to do the second transplant. We wish she her numbers were higher and we can't explain why. She has 100% donor cells (which is a VERY good thing) and now it is up to her what she does with it from here."

I looked at him and said "Tell me if I am hearing this correctly; You are telling me that you don't know why her numbers are low but you don't know what else to do so you are sending us to immunology"

"Well, yes, we have to turn you over some time... and we don't even check these numbers on Leukemia patients(hmm....I wonder if they really don't know as much about SCID kids as they tried to make me think!)

After asking more questions; going home and studying her past test results through the years; I realized that she stayed healthy with low numbers before. Maybe Emily will never have "normal"numbers. The real question is; will it be enough to allow her to live a long and HEALTHY life? Emily has done SO amazing through all of this. For any of you who remember the first time around this has been like a joy ride in comparison!

Matt and I feel like we were inspired; actually, I KNOW we were inspired to do the second transplant. I feel so much peace this time where I could never find that during the first 6 years of her life. I always had a nagging feeling that she would need to have another transplant.

Is it too soon for her to be leaving the BMT team? At this point, I don't think there could be a more PERFECT time! Why stay with doctors who aren't willing to keep fighting for your child? They are passing her on to another doctor so they don't have to deal with the unanswered questions. They want to say "She left us looking great!"

The bottom line is that Emily really does look great! She has a cold right now and that's all it is... a cold! Her white blood cells went up from her regular 2000 range to 8000; showing that her body is responding and trying to fight. This is wonderful news.

Even though Dr. Boyer had NO CLUE of how to communicate this news of us leaving BMT in a positive way; I have decided it really is the right thing to do.(After staying up all night thinking it all through!) Dr. Bohnsack, her immunologist is very willing to search for answers and is humble enough to admit that other doctors may know more than he does. I think it is going to be exactly what she needs!

Before leaving, they decided it was time to torture Emily again. They had already tortured her by having to poke her 3 times to get a vein that would give them blood earlier but this was only the beginning!

6 nurses came in the room, each holding a different vaccination! Emily went into PANIC MODE!!! I felt so bad for her. She begged them to do it in her arm but they said they couldn't do all 6 shots in her little arms. Her muscles weren't big enough.She then told them she didn't want them ANYWHERE! She wouldn't listen to reason so I finally had to pin her legs under mine and hold her arms and upper body as still as possible as all six nurses gave her the shots all at the same time! This was a nice gesture but it pretty much traumatized her for life! Does anyone want to take her to her next set of immunizations?

Emily came home in so much pain. She couldn't sleep last night because she was fevering and the pain was too much for her to stand. She can walk on her legs if she has Tylenol to ease the pain but even after 24 hours it still hurts!

Well, it's time for for a new chapter to begin. Hopefully this one will be the start to a very happy ending. Knowing Emily, IT WILL:)