Tuesdays mark clinic visits and ever since the appearance of GVH our visits are no longer once a month. We are visiting UCLA on a much regular schedule, we are hopeful though maybe in the next couple visits we'll get spaced out again and aim for more days between visits. Camryn's GVH is still very much present, her rash is looking much better and is fading to a nice brown color, the pinkness is gone. The rash is showing up on her hands and feet which is very common for GVH so this is welcome.
Today Camryn got to see a new doctor (a med. student) as the first year fellows were at a conference, from what I hear she did not enjoy the process of the new doctor much. She did her usual short, uninterested answers...the doctor told Jason that Camryn is currently in the 65th percentile for her height and weight for a five year old. I found this interesting as we no longer have the routine well-checks at the pediatrician so hearing where Camryn was compared to normal five year old population was sort of fun.
After the doctor was done Dr.M came and according to Jason everything changed...Camryn's face lit up and from then on out it was a pleasant visit. Have I told you how much Camryn loves Dr.M? Dr.M was very happy with Camryn's progress and thought she looked great. The decision was made to put Camryn back on cyclosporin as Dr.M does not want her on the high level of steroids she is on for an extended period of time. Dr.M feels that Camryn's system responds well to cyclosporin and being that they want some GVH Camryn was put on a low dose of cyclosporin. For now we'll continue on the steroids for a week and then next Tuesday labs will be drawn to test her cyclosporin levels and from there the steroids will be weaned. Yay!
Camryn has gained close to 7 pounds on the steroids and she is really feeling the side effects, so to know that we only have about one more week on the high dose is great! We are so over steroids at our house.
Camryn's labs look fantastic! Her levels are now on the high end of normal, which we haven't seen in well...I am not sure how long. Seeing her labs so great is a beautiful sight...really it is. After long months of low labs and almost non-existent ANC levels we are more than happy with an ANC at 5100. Remember the days of waiting for 500? Seeing her labs so strong really gives us cause to take a deep breath, to inhale and exhale...to know that Wyatt's marrow is setting up shop and doing some great work.
I will fully admit though that this GVH stuff is maddening. It is difficult to navigate rashes, meds and levels and not have thoughts of fear. The first time around Camryn did not have GVH at all. This time around it is becoming a friend and I guess in time a welcomed friend. As Camryn's doctors feel like the GVH will play a significant part in fighting against relapse. Although my head completely gets all of this...the added meds, the rashes, the constant level checks...is all part of the process against relapse. My heart is tired.
Sometimes I feel that this time around is so much harder in ways that I cannot even properly explain. I feel as though post-transplant life is breaking my heart more than it ever did before. And yet, I know that I never want to walk this road again...I never want Camryn to go through the hell she has. If this is what it takes then I will trust my heart to HIM. The Lord and I have had some poignant moments lately...moments when all I have wanted to do is shake my fists at the sky and beg Him to remove this from our lives...moments when His tender mercies rain down on my heart bringing healing...moments when I have fallen...moments when He has carried me. And through them all He is here.
This precious face daily reminds me of how incredibly blessed we are...how incredibly thankful we are...and His great love for us.
These two faces daily make the world a little better...make me smile...a make the weight of the journey lighter...and remind me of His great blessings on my life.
Wrestling and thankful...the journey of a parent daily learning to let go.
1 comment:
I found your blog just by blog hopping from one to another and I just keep coming back to check to see how your little ones are doing. I am glad to hear that the marrow is doing its job and I know steroids can be a pain but I have to say that her little round face is just too cute. I will continue to pray for your family.
~ Praying in Southwest Arkansas
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