"oh man, bedtime..."

Kids say the darnedest things...and they say the sweetest things too.

Tonight when we announced that it was bedtime we heard, "Oh man, bedtime!" coming from Wyatt's room. He has quite a sense of humor and he says the funniest things...honestly, I wish I had a running tape recorder of his Wyattisms.

Camryn came and cuddled on the couch with me and said, "I'll always be your little girl right?"...she can make my eyes tear up faster than anything. Guess that's what kids do...cause your heart to feel things you never knew you could.

Today Camryn and I headed down to clinic bright and early, I felt to bad waking her up from her deep slumber; but we've found the earlier we get to clinic the better. We can move in and out much more quickly and still have much of the day left. We got down to clinic and found our usual friends and moved through relatively quickly. Camryn went over to see Charlotte to get her labs drawn, yes this is her routine and Camryn loves her routines. We went back over to clinic and then waited to see the doctors. As we waited Dr.A just popped in to say hi as he said that he'll let Dr.M see us today...so as we chatted he asked how Camryn was doing. I told him well, but lately she is complaining of being cold at times...he didn't really think that was a good thing. As we talked Dr.M said hi and Dr.A mentioned it to him...Dr.M didn't like the sound of it either. So, Dr.M ordered blood cultures of both lumen's of Camryn's line and also a peripheral draw and a urine sample...

We continued to talk with Dr.M who we haven't seen in a few weeks as we talked it became evident that Camryn was not having nearly enough GVH to satisfy Dr.M. We want to see more...more would indicate graft vs. host and graft vs. leukemia which is what we want. So today Camryn's cyclosporin was discontinued...no more oily, gross medicine. We are to watch Camryn closely and if we see too much GVH than what we have been told is okay then we call asap. They would then just treat it with steroids sparingly. I was a bit surprised, but I know that this time around the doctors are being very careful and aggressive with Camryn's transplant to do everything they can to never get here again.

I appreciate their care...truly, it is a gift.

Dr.M also said that he would like to move Camryn to every other week appointments after next week. He said for a Day +54 transplant patient she is doing really well...incredibly well. At times it is just amazing to really consider that we are here again. But we are.

As we finished up with Dr.M we went to have Camryn's cultures drawn...9 bottles later the cultures were done and Camryn did GREAT! So proud of her. We wait 24 hours, but more like 48 hours to hear if anything shows up. I don't think the doctors were overly concerned, but wanted to play it safe...fine with me. So we wait and trust...

Camryn's regular labs look great...so that is wonderful!

The rest of the day has gone well...at first I was very upset about Camryn's appointment. I just hate being nervous, anxious and all of that...it's just draining. I was tired...

But as I watched Camryn enjoy life chatting with my sister, nephew and niece who came to visit her today she was full of life...and you know that's enough for today. I cannot chose the path for Camryn, I wish I could. But her and Wyatt both just embraced life today and were a great reminder to their mommy to do the same.

Trust Him...He holds Camryn and Wyatt better than I can.

And for now I will cherish the moments of their funny, sweet, cherished sayings and trust the rest to Him.

But that is easier said than done...so I'm trying day by day, moment by moment to hold them loosely knowing that each day is a gift, because none of them were ever promised.

So at Day +54 we'll be thankful...and yes, it's bedtime!