this biliary atresia experience

EXCERPT FROM EMAIL TO FRIENDS These are friends from the kids’ school. Their child has had surgery and treatment for a life-threatening illness, at the Royal Children’s Hospital “. . . maybe I'll bump into you at school again soon. That's about the only time I'm out in the real world these days, but I must admit it doesn't occur to me to think about what I might be missing out on socially. Priorities shift down to the ultra basics, and I'm content with that as we concentrate on steering Rose to good health. I don't know about your social life, . . . but ours is very much on hold in the leadup to transplant, with visitor restrictions, etc. The hospital team is getting pretty protective about Rose, especially as she needs to stay in tiptop shape if she's going to make it onto the transplant list. We're just having family in the room at the moment. . . . We heard today that Rose's official placement on the transplant waiting list is probably blowing out...

EXCERPT FROM MASS EMAIL TO FRIENDS “A quick note to communicate the important news that Rose is going to be placed on the waiting list for a liver transplant, in about 8 days. Yesterday the transplant surgeon came to see Rose, and said "Well, there's not much to say. Let's book her in!" A moment of anguish on him pronouncing those words - I truly thought he had said "It's looking grim". Can you imagine my relief when I cleaned out my earholes and took in what he had actually said? We know we're still a long way from Rose being in the clear, but the fact that she's made it through to being listed is huge . . . Her liver specialist says that despite her small size, Rose has proved that she has a really strong constitution, and has a fighting chance. Transplantation is her only chance for a healthy life; her liver condition would otherwise kill her in the coming year or so, or even sooner if she succumbed to a nasty infection. It's a very emoti...