DOT 1- Burns' big day tomorrow

It is hard to believe that almost a year ago, I wrote this excerpt for the Duke Children's Newsletter. At this point, Burns was as healthy as he had been in years, and we were content with what we had and had no idea of what would be occurring a year from then.

"One of the first things I grew to love about Burns was his amazing strength. He tackles everything in life whole-heartedly whether it is work, life, or his recent battle with CGD. When I first learned of his illness, I did not know what to expect- I had never heard of CGD. Thanks to his patience and the kindness of all the staff at Duke Children's Hospital, I was taught about the immune deficiency which consumed our lives for the past year. While dealing with his illness did take up the majority of our time together, we did not let it shape our lives. We made it our top priority to live a 'normal' life, even with Burns having a PIC line. He proposed to me in March 2010 at his parent's beach house. I have never been more surprised or excited in my entire life! We had the most amazing wedding this past September that most people can only dream of. Most people would let a PIC line slow them down- not Burns. We danced the entire night with our friends and family and the fact that he was ill did not even enter into our minds. I am so thankful to have him in my life and glad to finally call him my husband. We are looking forward to starting our own family one day and know that even though Burns might have a terrible illness, it will not become the foundation of our life. Burns and I learned over this past year that anything is possible, no matter how strong your immunity is! "

Tomorrow he is receiving the greatest gift possible, from one of the closest people in his life, his brother John. As you know, John has undergone his own difficult procedure the past few days to donate his stem cells to give to Burns to treat his bone marrow, and eventually cure him of his disease. In just a few months, he will no longer be inflicted with CGD! That is so hard to fathom. No more pills, pic lines, late night emails to doctors, monthly check-ups, etc. As you can imagine, this is an extremely emotional time for all of us Blackwells, and also for everyone who knows Burns.

Burns and I will continue to live in Durham for the next few months for check-ups and visits to monitor his blood levels and to make sure there are no infections lurking out there! We can't thank everyone enough for the kind notes, emails, thoughts, and prayers. It is easier going through a difficult time, knowing you have a strong support system!

-Laura