Monday, January 21, 2013

Dancing Through The Rain-January 2013

Just an update...her last 2 visits to NIH have been a bit on the rough side because she hasn't found a nurse on the adult floor that is as capable as the one she had for years on the pediatric floor. Her IV's haven't gone well, getting meds in has been extremely slow which causes other things to be difficult. This past visit was better, and she may have found "HER" new nurse. She is reserving judgement until her visit next week. She has needed iron the past 2 visits because she has been so tired. It seems to have been quite helpful...the past 2 weeks have been better. The doctors have once again been talking about transplant for Karly. This is something we try not to think about. It makes me nervous in the pit of my stomach. Karly still doesn't have a match. Our doctors have been talking with doctors they know from John Hopkins who have been successful(not sure the statistics on that) with Haplo-Transplants for cancers patients. I don't know if they have done any immune-deficiency diseases. The European transplant doctors don't think this is something we should do and think her chances with the 9 out of 10 match would be better. The 9/10 match has been available for years, but our doctors don't like her chances with that. So, we are faced with three bad choices...two transplants which no one is excited about doing or nothing which makes them very nervous. So clearly, we all need to hear God on this. They will be flying me out to meet with the John Hopkins doctors on Monday, Feb.18. I have my sister, Debbie, going with me to help with questions and digesting information. I have been busy researching and compiling questions. We will meet with our doctors on Tuesday, Feb.19.

We met a 10-yr old boy named Cameron at NIH in February 2012. He had been on a difficult journey with his DOCK8. They began his transplant process and in July 2012 he received his new cells. Cameron was in the Cincinnati Children's hospital for 181 days before he went a truffle-shuffling with Jesus. Cameron had a perfect match, but died from complications from the transplant. This is just more evidence that Karly's choices are pretty scary with less than a perfect match. We are still praying that she can find a perfect match, but also for God's will for her. Cameron was so special and loved blessing others in his journey of life. He had told his family that when he got home from his transplant, he wanted to find Karly a match. We were able to attend his funeral on January 12. His grandpa read a letter he had written to Cameron after he passed. Toward the end of the letter, he said that they were going to hold a donor drive for Karly. We were sitting there hearing this and boom, blown away. I had totally forgotten that they had told us that and never thought about it because Cameron's journey had been so hard. This family is grieving and yet, thinking about us and making Cameron's wish come true. They have set the date of February 9. When I get the details, I will post them here just in case you or someone you know can go. Wouldn't it be so great that Cameron's legacy saves Karly's life.

God is so good. I marvel at his timing. The doctors started communicating about the transplants on Wed. Jan.9, then 10, and finally 11th....none was great news in my eyes, yet so glad they are trying to find a way for Karly to survive. Hearing on Jan.12 that another series of donor drives are coming our way gives us more hope. We have hope, but our hope is in the Lord...and it seems that this means waiting patiently on HIM. We are waiting. Please continue lifting these things to the Lord. We thank you for staying with us in this journey.
Love,
Mom

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