The gvh rash is still there and again it was confirmed that it is in fact gvh as opposed to some other random issue. Camryn also has gvh in her mouth and eyes...who knew gvh could creep up in your eyes?? I obviously missed that. Dr.A was pleased that Camryn is showing signs of gvh as it signals that things are still fighting and working in her system. I will admit that this is a hard balance for me...knowing in the long run it is a good thing, but hating so much the realities of it now. Camryn's prograf level was taken and it was determined that she needed to be dropped down, so now it's back to one pill in the morning and at night; which lately Camryn is doing very well. Oh she hates it, but she has become a pro at swallowing her pill...we are so very proud of her! But, now added to the routines is a mouthwash to help ward off any fungal infections in Camryn's mouth...always something.
Camryn's lab results came back and she is doing great in all other areas...so a little gvh and that's it, really. Her white count is up from Friday which is very welcomed...her ANC on Friday was 600 and those of you who are familiar with cancer numbers that puts her at a 100 points away from being neutropenic which is not a great thing. Anyways, her level yesterday was up to 1200...yay! Only a 100 points lower than the bottom end of normal...so that was a HUGE encouragement to us.
I won't lie...we have been a bit discouraged around here. This journey feels like one step forward and then two back and so on...you never quite feel that you have arrive to the place of freedom. Our morning and nightly routines are just full of "cancer, leukemia" junk...and you know I know that really it is all for Camryn's betterment, I do. We are just tired and none more so than Camryn...she's so over all of this. The first time around we didn't have this constant roller coaster of medications, doctors visits, lab draws and such...by this time during the first time around Camryn's line had been out almost two months. So it is hard...
Although I know from the very moment of Camryn's relapse and the very first moment of talking with Dr.M that this journey would be entirely different. A child does not relapse on their own...therefore, this time things have to be different. If they were not then that would be cause for alarm...this time, well I think this time is more normal. I feel like we are in such a catch 22 emotionally...we have Camryn's first transplant etched in our minds and hearts and we know where that led to a relapse. And now we have this time...and we do not know what's next. We are hoping and believing that Camryn is well on her way to recovery...oh we hold to that truth mightily! But, there are moments of heaviness, weariness for the burden seems all too heavy, especially a second time around...
"The most difficult ingredient of suffering is often time. A short, sharp pain is easily endured, but when a sorrow drags on its long and weary way year after monotonous year, returning day after day with the same dull routine of hopeless agony, the heart loses its strength. Without the grace of God, the heart is sure to sink into dismal despair." ~ L.B. Cowman
3 comments:
Sending you all cyber hugs. I cant say that I hope that the GVH goes soon because it is a good thing right? But I hope it doesnt trouble Camryn too much; the thought of anything in the eye makes me cringe :o(
Hang in there!!
There must be so much fear and stress there. Praying for you all!
Thank you again for sharing your heart. While we deal with my two daughters' health struggles, I am encouraged by your honesty, strength and courage to keep fighting. Praying for strength to fight the fight.
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