friend & foe...

Clinic went well today...

We headed down bright and early trying to beat the crowd in the lab since we now have to make our stop there since Camryn is line free. We grabbed our number and headed up to clinic, Camryn was a bit upset by the whole realization that she was going to have a poke for her blood draw. Once upstairs it was pretty quiet, she was still not herself as she was upset, but once she got into her normal routine she was great. We saw Camryn's nurse practitioner B who introduced us to Dr.S a new member of the transplant team. B confirmed that Camryn looked good and that all was going well. I gave B Camryn's paper work for school as it needed to be filled out...we were hopeful that maybe, just maybe Camryn would be cleared for traditional school. We knew this would be a long shot, but we were hoping. B said that she didn't think so but they would talk with Dr.M and see what his thoughts were...

A few minutes later Dr.M comes in and gentle says that Camryn is right where they want her, that she is doing really well and that she is responding just like they'd like her to. He reminded us that this time around (second transplant) things would be different and that the major issue would be graft vs. host disease. With that all in mind Dr.M said no to traditional school, Camryn will continue with her home school program that she did this past year.

Dr.M said that graft vs. host is both our friend and foe...it's our friend in that it is the key to Camryn being well, it is even more important than her conditioning regime. As of right now Camryn is on her anti-rejection med (tacrolimus) to control the GVH she might have. Since she is still on her meds her immune system is suppressed and in order to test her immune system she has to be off her tacrolimus...and as we found out today the weaning process takes even longer in a patient with chronic GVH. GVH is our friend in trying to heal, keep Camryn well...we get that, we certainly do and honestly we will and have done everything within our power to keep our little girl healthy...so we get it in our heads.

Our foe...the reality that this is what is keeping her from enjoying the normalness of childhood. Her medicine is what is keeping her from her immune system being ready for shots and such. But, we know that GVH without medicine can be raging problem and that is something we do not want.

So, GVH is here to be with us for awhile even without a visible rash...it's here to keep fighting to help Camryn be well.

But our hearts...

My heart sank as Dr.M said no, I get it I really do; but we were beginning to allow ourselves to dream of the "what ifs". You know at some point I really should stop that! It's another year...of a dream delayed and really on my sane days that is okay. But, on days when the back to school ads come out and other little ones are heading to school and my sweet girl will have to wait, again...that's when I feel like enough is enough. I am tired of our isolated life...yes, we do things here and there, but church and school are not okay yet and really those are two things we miss the most.

So today, I'm sad...but, again it's a challenge in trusting my Lord to deal with this mess in my heart. I do not get it all, but I do trust Camryn's doctors and I believe beyond a doubt that they are doing their absolute best. So there are no doubts or questions there. My questions and doubts loom largely in my own heart...wondering if our hearts can take more isolation. I wish I had the words, but for now I'll continue to trust the hands that have brought us this far and the ones that will carry us through.

It's messy, it's hard...

After all we are battling a friend and a foe and even our own self's you get tired. It is so amazing to see Camryn and how far she has come this past year, we are thankful...truly we are. But, the road is just long...longer than we'd ever imagined it to be.

That being said in our hearts we are packing some dreams away for another day, it will come in a matter of time. I wish I understood it all clearly enough to make my heart get it...but, in time the perspective will shift again and the reality of right now will take focus and we will praise Him for what is. I will not pretend to be okay with these dreams delayed, quite frankly I am tired of them; but when I really sort it out and really consider the alternatives I am okay.

And I guess sometimes it's quite alright to not be okay with all of this...it's a journey we never wanted, we never asked for. And at times we wonder where in the world the past four years have gone? How did our lives come to be this life? I know that at some point, some way the beauty is there...some days it is crystal clear and those days it's as if I'm looking through broken glass. But, He is weaving a beautiful story...I may not like it all the time and sometimes the story feels to be both my friend and my foe.

Thankful my Savior is big enough and good enough to deal with my messy days and my clear days...days when I see the friend and days when I see the foe.

And honestly I cannot wait until the foe is no longer...but until then,

We wait with hope.