no end in sight...

{I started this post earlier...but, it took me awhile to get through}

I had really hoped to be able to update tonight that Camryn's doctors had decided to lower her steroids, because her liver numbers had improved so dramatically; but that's not quite how the day went...

I took the day off today to be Camryn's mommy and do what I do as her mommy, take care of her. I had intentionally scheduled Camryn's therapy this morning, early as it would work well with my work schedule. But, when steroids came into the picture and the doctors wanted to see her this week, today was the day. So, I took the day off and did what mommy's do...

Camryn is on week three of therapy and doing wonderfully...she is gaining some range of motion in both arms and elbows. In fact the great accomplishment today was being able to hold out her arms straight in front of her without her elbows being bent...I know it doesn't sound fantastic, but if you could have seen the look on Camryn's face you would know just how fantastic it truly is! Camryn's therapist P took a lot of time today to work on Camryn's left arm. I was so proud of Camryn...she did everything her therapist asked of her and she continued to work really hard. After therapy she was tired...I wish I could have just taken her home, but really our day at UCLA was far from over.

We headed to the lab to get labs drawn so that the results would be back before we saw Camryn's doctors. The lab wasn't too crowded and thankfully we got right in, and even more importantly the lab tech was awesome! He got Camryn's blood draw done in no time, even in the midst of a crying little girl. As we walked into the lab I realized that Camryn was not next to me...I turned around and standing in the door way was Cam, tears in her eyes and saying, "I am NOT going in there...when will this all be over?" Thankfully it was over quickly, but I know she wasn't really talking about one lab draw...

She is ready for all of it to be over.

Our appointment was for 10:30 so we hung out, got a snack and enjoyed the beautiful day outside. We shopped in the gift shop and just enjoyed our time together...Camryn is an amazing little girl and days like this remind me what a gift she truly is.

We headed up to clinic and got checked in, saw Nurse Charlotte and just waited for the doctors. It was fun to see our friends in the procedure center, we chatted with Charlotte and everyone. Sometimes it's nice to be a "regular".

B, Camryn's nurse practitioner came in and said hi and explained that Camryn's liver numbers had come down; but they were still high. We talked about how Camryn was feeling, her rash, her skin in general, and other topics of Camryn's medical life. B said that Dr.M would be coming over to talk with us and I was pleased. Ever since last week and the news of steroids we have been battling a constant thought in our mind...

"Is this the beginning of the end..."

Dr.M came in and he and Camryn went through their regular routine of giggles, laughs and smiles. These two have quite a bond, it is as if no one else is in the room. Dr.M explained his plan and his take on what is going on with Camryn. His plan is to keep the steroids the same through this week, and increase her tacrolimus (anti-rejection med). He hopes that increasing her tacrolimus will enable them to lower her steroids this coming Wednesday. Dr.M's plan is to wean Camryn off of a high dose of steroids as soon as possible; he said best case would be to be on steroids for small dose every other day. My heart sank a bit, to be honest I long for the day when my kitchen counter is empty of medicine bottles and our nightly routine does not include upwards to 5 medicines...but, that day is far off, really far off.

Dr.M asked how Jason and I were doing and I teared up, and started to cry. I said it is hard to not let our minds go to the place of worst case scenario and relapse. Dr.M and B listened as I said that this road just seems so long. That having been through two transplants it is just too much at times. Dr.M is the kindest man...he smiled and listened and said, "you don't have to say another word. I'm sorry." I talked about how Camryn is almost two years post-transplant and it was two years post her first transplant that things started falling apart...and it is hard to battle not worrying. Dr.M talked about how where Camryn is now is much better than where she was two years post her first transplant. The difference?...GVH now our foe.

It seems that our foe has changed from leukemia to GVH, but oddly this foe is saving Camryn from a relapse. So GVH is really a double edged sword...there is good and there is bad.

Dr.M talked about how GVH is the key for keeping Camryn healthy in terms of battling her leukemia. And that her GVH is controlled...her doctors are letting it come and watching it closely. He asked if I remembered our conversation when Camryn relapsed...I said I did, that conversation is forever etched in my heart. Dr.M told me then that this time around would be harder, much harder; that now we would be dealing with GVH.

GVH is the craziest, most annoying, and really disheartening thing...and yet it is a gift, a treasure, and it a savior of sorts.

Dr.M said that it is rare, incredibly rare for someone to relapse while having GVH...GVH is the sign that the graft is working...that her transplant is still working and she's doing well. And yet, here we are almost two years post-transplant and dealing with meds and all that comes with it...we are doing better than before, but at times it doesn't feel like it.

My conversation with Dr.M was a gift, often I would ask the Lord if Dr.M could be there when I needed encouragement, and again he was. I am certain that Dr.M is a gift to Camryn, that the Lord knowing what was in front of her gave her the most amazing doctor to hold her hand every step of the way.

Because as Dr.M said, "I know it bothers you to think of relapse...it bothers me too."

Dr.M ordered some preliminary tests to test Wyatt's graft and just "check on it" to see how it was doing...Dr.M expects the tests to be good. And yesterday we found out that the first one was...thankful.

And the words that mean the most...

"Dana, you know me. You know if I thought for a minute that Camryn was relapsing I would tell you. I would never hide that from you."

And those words were a treasure from Dr.M

Another treasure given to me by an amazing doctor was a friend. Dr.M explained they had a patient P, who had three years of chronic GVH and Dr.M thought that his mom might be an encouragement to me. He asked if he could put us in touch and I said yes. Thursday night J called and it was as if I was listening to myself for the first time...we talked for 45 minutes and it was a gift. I found someone who gets it, who knows how incredibly frustrating it is, and how precarious each day is. Someone who gets me....a fast friend. J said she'd call in a couple days and I find myself looking forward to her call...thank you Dr.M for knowing that I needed a tangible mother who is walking this very journey with me.

There is no end in sight, not for a long time so I'm going to stop looking for one. The best I can do at this point is take each day as it is given, knowing that there is no magical day when Camryn's life will be normal...today is normal, the new normal that is life as we know it.

I am tired, but I am encouraged...Camryn is getting better and better. And today she and her little brother are gifts beyond measure...

Even without an end in sight...today is enough.

Simply it is enough to see Camryn's smile and hear Wyatt's voice...