Friday, October 28, 2011

Research Research Research

Frankly, I feel researched-out.  My eyes are tired from pouring over emails and numbers.  I want to sleep, but there seems more I need to find out.  I have talked to different doctors from different transplant centers, mostly in the West Coast.  But I must admit, though it has been very tiring to contact, speak with, and gather information, it has also been very encouraging.  When I contact a center, I try my best to find the director of BMT or immunology and contact them directly.  It’s so much easier to talk to the doctors who have experience and expertise.  And what I have found is that, generally speaking, they are very willing and available.  I have contacted a well-known (worldwide) immunologist at UCSF and right away, she wanted to chat on the phone.  We talked for nearly an hour discussing Timothy’s condition and situation.  I didn’t feel rushed or pressured in any way.  She answered all my questions and had some suggestions of her own.  This has been the experience with all the hospitals and their BMT directors and immunologists.  I have contacted world renowned researchers and the results were the same.  The doctors that I have been in contact with have been compassionate and thoughtful, not just to our medical needs but family, financial and emotional needs as well.  It has been an encouraging experience and I am very thankful.  I do feel like I know a lot about CGD and BMT :).  So if you ever have any questions re: BMT for CGD patients, I am here.  Maybe I will post all my findings on another post, so if there's anyone out there in a similar situation as I am, we can share our knowledge.

Shifting gears…the other day, I took Claire to a pumpkin patch for the first time.  She absolutely loved it!  On our way home, she wanted to know why Timothy couldn’t come.  I explained to her that his body is broken and he would get really sick if he had come.  She was very pensive for a few minutes.  She did not understand why his body was broken.  She wanted him to come with her next time.  I tried explaining to her how we have been trying our best to find good doctors and hospitals to fix Timothy’s body and that it would take a long time to fix him.  I was trying to prepare her for the transplant period.  I started choking up, tears welling up in my eyes as I told her that when he is all fixed, he could go to pumpkin patches with her, walk and breathe in all the hay, go to petting zoos to feed the animals and not get sick.  I don’t think she really got it… But at least she’s developing compassion, sympathy and love for her brother.  Here are some pictures from the patch…

photo 1

photo 2

photo 3


  1. I'm so glad and thankful to God that you are coming across very compassionate and understanding Drs.! It can be a world of difference the way Drs. treat their patients. Claire is so sweet! We can't wait til Timothy gets all better so we can have more play dates whenever we are around. It would also be great if someday all of you could come and visit us in Sydney and spend your vacations there. :) Miss you guys...always praying for the Songs.

  2. Love the compassion that God is instilling in little Claire's heart. And I am so glad to hear how warm the doctors have been... it's a little thing, but sometimes it's the little things that God uses to sustain us. Always praying and also look forward to the day when Timothy's broken body is made well!