No, I’m not talking about LeBron James or witnessing greatness. I’m talking about our big decision. The Decision. And we’ve made it. Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential […]
We could tell Austin’s life story through his hair. At birth, he, like his brother before him, had a head full of dark bushy hair. (And yes, for what it’s worth, I did have heartburn.) At about six months he, like his brother before him, exhibited classic signs of male pattern baldness: It slowly grew […]
Today was fine. Long and boring and exhausting the way that standing around an airport doing absolutely nothing all day can be exhausting. And that’s what we did: nothing really, except roll spirals of Play-Doh and paint with watercolors (I on paper, Austin on his legs). But he was a trooper. Not a single peep […]
Austin has a Witness t-shirt. Long-sleeved, black with the Nike swoosh and those stark white capital letters. He’ll keep wearing it. He’s a witness after all. As are we all. I’ve witnessed greatness and heroism and bravery many times over. Every time a teacher stays late to help that struggling child. Every time a nurse […]
It had been almost a full year since we’d last been to Chautauqua. And that’s a very long time for us. We left in a hurry one Friday last July when our friend’s mother was in the hospital, shortening our vacation by a few days to be with them. And then August came and our […]
Well. Listen to this one. We went in early this morning for repeat labs, mostly to draw blood so they could do the necessary “type and cross” matching in the blood bank for tomorrow’s transfusion, before heading to the ultrasound. Everything went fine with the ultrasound; before we even left, the radiologist (who usually waits […]
Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving. Of course, for us, this makes any future decision even more difficult. […]
Many of you have commented on the appeal letter you received recently from Rainbow Babies’ & Children’s that was written by my mother. For some unknown reason, ours has yet to arrive in the mail but I finally saw the finished product when we went in today for labs. It features a one-and-a-half page letter, […]
I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study […]
It’s not all fireworks and ice cream cones around here, you know. Austin’s health, current and future, continues to be paramount in our minds and in our lives. At his appointment last week, his oncologist said that as long as his renal numbers remain fairly steady, we could go two weeks before our next visit. […]