Usually when you are standing in a line you are anxious to get to the front and get - whatever it is - over so that you can move on to the next thing. We have been standing in line with these other families for the past two years and no one wants to get to the front, everytime we lose a child we are reminded that we are getting closer to the front, where no one wants to be. In this month alone we have lost two beautiful girls, one of whom was a "newly diagnosed family" that we met at the conference. I remember sitting in that room with only three other "newly diagnosed" families, 3 beautiful little girls - Ali, Elliott and Dezirae - Dezirae earned her Angel wings only a few short months after the conference, she was barely two years old, and this month Miss Elliott earned her wings at only three years old. Half of the babies who we met as "newly diagnosed" are gone - very sobbering, very freightening.
A couple months after diagnosis we traveled to Duke University hoping to get a cord blood transplant. After a day of developmental and behavioral "testing" we were told that our 19 month old son had the capacity of a one month old baby. That was the first kick in the gut we would receive during that trip! Of course after receiving the results we were then told that Kaleb was not a candidate for the transplant, they told us to take him home and love him as much as we could because we likely had a "year maybe two" - I will never forget hearing that. While we are not at two years yet from hearing that a Duke, we are at two years from learning about this horrible disease, and as I said in my last journal entry - it's only been two years, which has felt like an eternity and the blink of an eye all at the same time.
Our little warrior keeps on fighting, he is having more difficulty with controlling his body temperature, he has been getting fevers pretty frequently, but I don't think he's ready to give up!
RIP Angel's ^Elliott Bensen^ and ^Brooke Urban^ - we love you!