Carry on

Thank you, yet again yet again, for the outpouring of support and well wishes coming our way. You can not possibly know how much strength we draw from all of you.

Yesterday ended with better news. Not the good news we’d been expecting on Thursday, but definitely better news.

Dr. Auletta spent a good chunk of yesterday afternoon sitting down with Austin’s nephrologist (kidney doctor), the radiologist who did the needle biopsy in March, and the new head of urology who would be in charge of any surgery Austin has in the future. Together they reviewed all the past scans and weighed our options moving forward. The first, and best, thing they agreed on was that even thinking about removing the kidney based on what little we know right now would be premature. So that warrants a sigh of relief, to say the least.

The other good news is that the radiologist believes he can reasonably and safely access the mass with a needle, precluding the need for a surgical biopsy (for now, at least). This Tuesday we’ll have an out-patient ultrasound just to check whether or not the shadow is visible which would mean he could do the biopsy guided by ultrasound instead of CT. It’s not a huge deal either way but it would be nice to subject Austin to a little less radiation plus we’d only need one night in the hospital with ultrasound versus two with CT (because of the need for pre-hydration). Dr Auletta did warn us that the biopsy could give us inconclusive results, which would put us right back where we are now, but we’ll deal with that if it comes.

The bad news came from the nephrologist who said that Austin is not a candidate for peritoneal (at-home, overnight) dialysis and never will be because his peritoneum (which is what they hook up to the machine) was severed during one of his many surgeries. This means that if and when he ends up on dialysis, it will indeed be the more traditional hemodialysis requiring four-hour hospital stays every other day. Yuck, yuck and yuck. My mom assured me yet again that she would take one shift a week and that my dad could too, plus of course Mark but it is not me I’m worried about. I mean, I certainly don’t want to have to spend any more time in a hospital than I already have, but it’s Austin who shouldn’t have to sit still for four-hour stretches every other day. That has got to be a sick method of torture designed specifically for three-year-old boys. This kid does not stop moving. He doesn’t even watch TV (which is suprisingly disappointing to me!); he is go go go all the time. So I will not give up on this kidney just yet.

But right now, for today, life feels normal. The boys are none the wiser, consumed with their usual issues: what’s for dinner, whose car races faster, whose turn it is to mow the lawn with Daddy. Austin feels totally fine and we will just carry on as is until there is a reason to stop.

As we drove to the hospital on Wednesday night, Austin was asking again why we were going, finding reassurance in my endless repetition of what was to come. I told him he needed a CT scan so the doctors could look in his tummy and make sure there’s no cancer inside him. He responded with great sincerity, “But I don’t feel any can-ther inside me.”

Let’s hope he’s right again.