Esther traced the lines of a stencil for over 5 hours. She has done fairly well today, despite quite a bit of pain and some nausea, but her vital signs have been overall stable. She's had a few low blood pressures and her heart rate was high for a while, but it has come down with pain management. The days will be 20 hours long and we should hopefully leave Friday afternoon. All of her real reactions and problems have come at the end of the infusion, so even though she's been hooked up for about 12 hours, she has a long way to go this first night. Please do lift her and her caregivers up...that she would make it through this week without the issues we had last time and that our caregivers would have discernment and agreement on her treatment. There's been a couple lines of thinking on what to do when her blood pressure starts to drop. Really, it's a rock and a hard place. One of the things they do to increase her pressure is a bolus (fast infusion) of fluids, but one of the issues with low blood pressure is that her capilaries can't always handle the fluid, and it leaks into her body, including her lungs. Extra fluid can be an issue as well. This treatment is so important to neuroblastoma kids, the benefit outways the risk, giving these kids a 25% high rate of cure. When the odds are 40% at best without it, you definately want to bump it up to 60-65%.
So, as Esther coped with her pain by drawing the boundary lines of this stencil, I was reminded of Psalm 16...
you make my lot secure.6
Psalm 16: 5:8
Today I was listening to a song "Broken Hallelujah" by The Afters. You can watch it at the end of this post. It's a good song, opening with lyrics that have resonated with me many times in my life, but strangly, not completely over the last year.
"I can barely stand right now. Everything is crashing down. And I wonder where you are."
There have been many times I could not stand as everything has crashed down, but I've never wondered where God has been. I know He's been with us. Every moment. This is not true of my entire life as a Jesus follower, there have been many, many times I've wondered where God was. His kindess has been tremendous. The song goes on....
"Even though I don't know what your plan is,
I know You're making beauty from these ashes.
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah.
With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.
You know the things that have brought me here.
You know the story of every tear.
‘Cause You've been here from the very start.
Even though I don't know what your plan is,
I know You're making beauty from these ashes."
So good. I can't explain, words completely fail, but there is so much beauty from the ashes of cancer. Through it all I've seen pain and so much joy. My hands are empty now, and it's okay. So much of my life has been gathering up the fruits of my capable hands, hoping they would be an acceptable offering to earn my nearness to God. Yes, Jesus' sacrifice covered my offenses and sin, but I still wasn't welcome at the feast. God would put up with me because He is God and offers this gift of salvation that I recieved, but not because I was really loveable.
I think many of us feel this way. It's just not true, and it took cancer to show me that God really does love me. I am grieved that I spent years believing that God accepted me out of duty. That His love, kindess, presence, and help was for everyone else. I have no idea where this line of thinking developed, but it was where mind and heart lived. He knows what brought me to that place, and He knew he would make beauty out of those ashes of doubt.
This lot, this hand we've been delt, it is hard. It just sucks. But I haven't wondered where God is, because I know, He's been right here, with us. I've just known, deep in my soul, known. This is not a testament to my faith, but His faithfulness, please know, I'm just not that holy. It has been a grace, a complete grace.
At the end of the song, they sing,
"When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah.
Let me always sing Hallelujah."
Though Esther still has a few months left until she's finished with treatment, we are nearing the end. This is a prayer for after the end...when all this is taken away and our lives are not consumed with labs, treatment, pills, hospital stays, scans, and worry of relapse, please "don't let my heart be changed." These boundary lines are not easy, but there have been pleasant gifts God has given us we would be hard pressed to recieve any other way. With Him at my right hand, I am not shaken. Let me continually see Your boundary lines, see You make beauty from ashes, and sing a broken hallelujah.