"Glorious"

Three days ago I left the clinic after a routine visit with my Piper. While it was a long visit there was nothing out of the ordinary brought to my attention so she and I went for our daily drive around town. Piper and I both look forward to these drives and look for buses to follow, for birds to sing to and for a myriad of other things that are out of her usual spectrum...she loves to hear music so we have been listening to alot of Jesus Cultures Awakening album lately.

This was the day I heard her singing so sweetly and cheerfully " Jesus, Jesus...I love you" in the backseat with her little eyes closed above her big sterile mask.

This was also the day I was feeling almost giddy. Everyone I was running into was so impressed with how amazingly my daughter was doing...how could I not get wrapped up in the excitement and optimism that was filling up each conversation and thought around me? So while I enjoyed my Starbucks and Piper enjoyed her fast moving view, I listened closely to the lyrics of Glorious. I found myself moved by the encouragement I was hearing and today I found myself weeping with same lyrics for the simple fact that the truths in the songs had not changed.

Our circumstances and our perspective was significantly more difficult and I am finding it hard to feel giddy about much of anything given how broken my heart is, but the truths, Gods truly glorious truths still reach the ache my soul feels. I was reminded last night by a friend that I need to surround myself with what I know to be true of God and His character and what He has proven Himself to be. These lyrics calmed me. Gods glorious truth has not changed since Wednesdays giddy drive around town...He is holy, He is worthy of my worship despite the deep sadness I feel towards the plan I see unraveling before me. And ultimately He is so very, very, very good to me.

Glorious

Hope fills my soul
The love that You've shown
Bring refreshing like the rain
Peace floods my heart
I've known nothing apart
Apart from Your goodness, God

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy

Your love frees my soul
And fear has no hold
For You have broken the chains
Now joy fills my life
Your Spirit, Your Light
I'm undone by the kindness of Chirst

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy
My soul cries out
You are holy, holy
The nations will shout
You are worthy, worthy

At the sound of our praise
The Heavens will shake
And the earth will move

As far as the ugly detail surrounding this, Pipers second relapse, I have few. She has been admitted to Egleston for 5 days of chemo in the slim chance that we can get the blasts found in her bloodwork down. She had a bone marrow aspirate and they found her marrow compacted with 89% leukemia...this from 100% donor cells on day 30. Her peripheral bloodwork has risen from 11% blasts on Wednesday to 38% on Friday. Pipers leukemia is not only back but it is angry and aggressive. At this point we have a few options, though none are being shared with us with much optimism. Because we chose to attempt this last chemotherapy, we are open to the option of going to St Jude's for the Nk cells therapy clinical trial. I have spoken with them and Piper fits the criteria and they are very willing to take her on...Unfortunatly in order to be a part of this study she must be 60 days post transplant. Piper is only 45 days post transplant and at the rate it is taking over, she would not make it another 2 weeks to get to St Jude, thus the chemotherapy in the interim. If this round does nothing to the blast we see in her bloodwork we have exhausted all known options for a cure. We are given the choice to go home either on oral chemo to prolong Pipers little life with as few symptoms as possible or we can go home and allow this beast to consume her.

While St. Jude's has apparently been successful with some patients in doing this Nk cells therapy, we are unwilling at this time to chase down rabbit trails. I will have a phone consultation with Dr. Leung about the details a nd I am going to be asking him for serious consideration of Piper and the magnitude to her disease. We have no desire to lose our second born daughter of whom we have fought tooth and nail for but we also will not continue to put her through more and more suffering just to lose her in the midst of that. In light of the options we have, we are asking for fervent prayers. No parent ever imagines their self in this position and for 2 and a half years I have allowed myself to hope we never would have to.

We are here in the midst of gut wrenching descisions and choices...there can not be two made, we have to weigh the odds and the costs and hope with every fiber in our being that we will never look back with regret.