Saturday, August 22, 2009

Intertwined By Design

A number of people have entered our lives in the past three years who have blessed us, prayed with us, hurt with us, and pulled for us. And every time I stop and think about that, I am grateful for that kind of love and support. That encouragement keeps us forging ahead. This past week I have spent nearly six hours on the phone with the mother of another child with a 3q29 deletion. At first our conversation was merely an exchange of information, then it was an exchange of doctors' phone numbers, and suddenly our lives are intertwined on a very exciting road. Our doctors are calling each other and comparing notes.

Our genetics doctor here in Roanoke has gone above and beyond her duty this week to connect us to two blood study groups, one at Johns Hopkins and the other at The National Institutes of Health. Qavah's records and new labs will be sent to those facilities next week. Since the other child has so many similar symptoms to Qavah's, her blood will be studied and compared to Qavah's under the careful supervision of the researchers. As parents we have our eye on the goal, which is to help our children survive. Our research into a bone marrow transplant led us to this path. The cancer centers I had sent Qavah's records to felt that she was not healthy enough to survive a transplant. She would need to be in better physical condition first, but without any treatment plan, she would not likely get healthier. But in researching from that angle, I found the other children with this disease, and new doors have opened.

I am going to ask permission of the parents of the other two children to allow me to identify them and post a picture of them here on this blog. These little children are so sweet and yet struggle so much. As their iron counts gradually creep higher, placing a strain on their internal organs, we have to keep hoping and praying for a miracle. I know in my heart that all of these events of the past week are leading somewhere. And again I am asking God as Moses did, "Lord, show me your glory!"

Exodus 33: 17 And the LORD said to Moses, "I will do the very thing you have asked, because I am pleased with you and I know you by name."

18 Then Moses said, "Now show me your glory."

19 And the LORD said, "I will cause all my goodness to pass in front of you, and I will proclaim my name, the LORD, in your presence. I will have mercy on whom I will have mercy, and I will have compassion on whom I will have compassion.

Father, let your compassion fall like rain upon the lives of these children and show us your glory. Amen

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