Thursday, June 5, 2014

Getting closer...

I had thought based on discussions with Karly's doctor that the transplant wouldn't happen this summer if it hadn't happened by May. Based on that information, we tentatively decided to travel to California for a friend's wedding, visit some very dear family friends, and see some amazing sites. We didn't make any hard set plans. We are used to not depending on anything more than a day away. Sure enough, our plans have been changed. We could choose to wait on the transplant, but looking at the new door God just opened, I'm thinking we are walking through it. Here's what happened on Monday.

On Monday, Karly had what appears to be something like a Transient Ischemic Attack. She had a brain CT and MRA; both look Karly normal. The best guess is that the IVIG caused a sluggish blood flow which temporarily caused something like a TIA. It lasted about 3 hours. It was scary. She is already doing all the things one would do to prevent something like this from happening. Just another symptom to move us closer to transplant.

We talked with our transplant doctor just before the "episode". The protocol for the DOCK8 haplo-transplant has been approved! He most probably will have to get an exception for her heart Ejection Fraction. We haven't got the report from her ECHO, but all indications show no more improvement in it. We have set the return date for June 29 to start the week-long qualification process. We hope to come home for 12 days between the testing and starting the transplant. Tyler would probably fly back with us. He will be her marrow donor. Karly interjected, "What a HUNK!"...Dr. Hickstein said that Karly would need a beefy specimen to receive an exceptional collection of cells.  Of course, all of this is subject to approval.

How do we feel about this? Let's ask Karly. Karly writes, "I feel like God has led me to this choice. When I was first presented with my less than desirable options of a transplant 2 years ago, I did not feel peace about it. I decided that I would wait for God's timing. Recently, with the addition of quandaries, I have felt more peace about the decision. With all the different unknowns to the transplant, I am being dependent on God. I have faith that God will carry me through predicable and unpredictable variables. However it turns out, I am happy with whatever God has in store for me. I give God all the glory!" 

How do I feel? I feel like we have prayed through this so much asking God to light the path we are to take, close any doors we try to walk through in our ignorance, and because we have complete trust in this we are truly walking the correct path. Do I get a pit in my stomach at times? Oh yes I do. It is usually when I start thinking about all that could go wrong having been there. So I quickly place my mind back to trusting God no matter what. I realize that this time is not last time. God's plan has not been revealed but one day at a time. I feel like Mt. Zion most of the time, "Those who trust in the LORD are like Mount Zion, which cannot be shaken but endures forever." Psalm 125:1 Also in Psalm 16:7,8, "I will praise the Lord who counsels me; even at night my heart instructs me. I have set the Lord always before me. Because He is at my right hand, I will not be shaken." God is faithful!