day +47..."playing with fire"

Last week at clinic Dr.A said that "we are sort of playing with fire", he was referring to the fire of GVH (graft vs. host disease) and the playing? Adjusting Camryn's cyclosporin levels to bring some fire, to fan it a bit...but not let it get out of control like a raging wildfire. One of our countless activities throughout the day is looking for fire...you might remember that this fire comes in forms of rashes, itchy rashes and redness. As Camryn's cyclosporin is lowered we should see more signs, well...this week we had not seen much.

So today at clinic we gave the updates to Dr.K and talked about what meds we needed refills for and so on. Dr.K was pleased with Camryn, "she looks great!". We went over to the procedure area to see Nurse Charlotte as that pretty much is the only person Camryn wants to draw her blood...honestly, Nurse Charlotte means the world to Camryn. She brings comfort and stability. After that we headed over to clinic just to wait to see the rest of the doctors. Dr.G came in to see Camryn and was so amazed at how well she looked. Dr.G was the attending doctor on the day of Camryn's transplant so it was fun for her to see Camryn again. We were packing up to get ready to leave as we waited for our prescriptions and Dr.A walked in. Camryn has a unique relationship with Dr.A, she loves to tease and play shy with him...it's cute. Dr.A took a look at all the usual places for GVH; palms of hands, soles of feet and ears...and he wanted more redness. So he lowered her dose again...honestly it's so weird how much GVH Camryn had early on and now we are lowering meds to get more. Interesting this whole process.

We went back by to say good-bye to our procedure friends and got Camryn's labs...they look fantastic! All Camryn's levels are doing really well...nice and steady with increases. Her ANC is now up to 1600! So the doctors weren't lying when they said "it will come...". We cherish these great lab sheets, they are treasures to us. It's odd how we can read them so well and can anticipate where Camryn is by reading numbers.

Jason and I were talking about how different things are this time...our hearts are a bit more guarded. We aren't on pins and needles every time we head to clinic. We have found a level of comfort and know that we can ask questions, we can call, we are not rookies to this. Camryn is doing really well, but there is a daily struggle to let her go...to trust her to the Lord's hands over and over again. I think during recovery last time we were so worried that anything we did would cause the other shoe to drop, the bottom to fall out. And you know...nothing we did or didn't do did that.

This is something I've been really wrestling, contemplating, chewing on these past couple days...there is nothing we can do to prevent the bottom falling out again. We live in a broken, messed up world and there are so many things just not right. And I struggle with how to live within the mess sometimes...I want the Lord to assure me all will be okay, that Camryn will be cancer free forever; but that is impossible. I don't think He works that way...will Camryn be cancer free? I hope so, I pray to that end; but I realize that the outcomes are His not mine.

I am called to be His vessel no matter the journey, no matter where this road takes me...does the idea of Camryn's cancer coming back scare me? Absolutely, rips my heart in two to even consider it. Do I live in fear of it? Honestly, yes...and this is something that the Lord and I are working through. The idea of fear...

I have always feared fire...seriously I am terrified of it. I hate lighting matches, I always have. And you know I guess in a way "playing with fire" is exactly what I'm doing...

I am having to face my fear head on. I am having to release some things that I hold so dear. I am having to play if you will, learn to enjoy the days ahead without clenched fists. But, rather with open hands...letting go.

This afternoon a dear friend Kelly came by to hang out...as Kelly and I chatted about life and who God is and what He is up to I was struck by something. That He is so much bigger...that what I believe to be true about who He is hasn't changed. Yes, we have walked through a valley with Camryn, but I know there is a mountain top. And I know that on the mountain top I will see...

See His goodness...

See His grace...

See Him...

I am learning to "play with fire" in order to better see my Savior. It's not easy and some days it is just pain hard...but moment by moment...

His grace is sufficient for me.