“The Real Question Is…”

From the mouth of my outrageously smart, not-yet six-year-old when I told him about our latest predicament with Austin: “But Mom, the real question is, How are we going to know what’s inside of him?”

Exactly, Braedan honey, exactly.

I know a lot of you have questions too, so I will do my best here to provide a few answers. First of all, on the issue of kidney transplant: I’ve explained before that transplant can’t take place until a patient is two years cancer-free. A few of you have asked (and I’ve wondered as well) if that rule might be tweaked if a donor stepped forward and said, “I don’t really care if Austin might have cancer inside him, I’m willing to risk it and I want to give him my kidney anyway.” It’s a nice thought but the answer is a resounding no. This is a hard and fast rule with absolutely no wiggle room. In fact, the entire hospital could lose its license to perform transplants if they were to do something like that. The main reason (and it’s a good one) is that the immuno-suppressant drugs transplant recipients have to take can cause cancer to grow. Not exactly the outcome we’re looking for.

Some other things I’ve learned about kidney transplants: The most successful transplants occur when the donor is a live relative (or LRD, living related donor). The ideal kidney comes from anyone between the ages of 18 and 35, although they’ll go as old as 50 or beyond with a healthy match who has no history of high blood pressure. I am automatically out of the running because of my diabetes, but we feel confident there are many family members who would step forward and be tested. The best match is determined based on a set of six tissue matches, all with a numeric score. The highest scoring kidney is the closest match and therefore the least likely to be rejected by Austin’s body as foreign. An unrelated donor with a high tissue match is also a fine candidate. We have quite some time (obviously) before we need to even begin that process but it’s helpful to start thinking about it.

The bummer about him needing a transplant so much earlier in his life than we’d expected is that transplanted kidneys don’t last all that long. I read last night that some “even last twenty-five years” and I thought, “Oh, great, so we can do all this again when he’s thirty?” Not to mention the risks of infection during the years of dialysis. He again is put into that high-risk category where exposure to chicken pox or pneumonia could mean hospitalization and death. And then there are all the drugs he’d have to take for the rest of his life to ensure his body continues to accept the new kidney, which surely have side effects especially when taken for so many key developmental years.

But before we get to all that, we still need to figure out what exactly to do now. We’re planning a meeting with the team of four here at UH (oncologist, surgeon, radiologist and nephrologist) so we can explore the many paths we might find ourselves on. A few of our questions include:

1) Does the fact that this mass is fluid-filled make a kidney-sparing surgery more or less likely to succeed? ie, Is it easier to get clear margins with a solid or fluid filled mass?

2) (And this one is key) If this is indeed cancer, would we up our chances of cancer-free survival if we just screw the kidney-sparing attempt and take the whole thing out? Is his cancer less likely to recur if there is no kidney for it to orignate in?

4) Can we do an open exploratory surgery where they biopsy the mass while he’s “open” before we decide whether to remove the mass and/or whether to remove the whole kidney?

5) If we do such a surgery and it turns out to not be cancer but the kidney fails as a result of the exploration, can we consider him cancer-free from April 2009, the last time there was proven cancer in his body and therefore put him seven (or more) months closer to a potential transplant?

We hope to get some real answers to those questions, but know that 1) There are no guarantees and 2) With few, if any, kids who’ve ever had this type of cancer, there are few, if any, data points to help to mark our path.

In the meantime, Austin himself is totally fine. He feels normal, acts normal and is normal. We haven’t told him anything yet because it’s all too uncertain for a three-year-old’s mind to grasp. What can we say? “Austin honey, we think there might be cancer inside you and we might do a surgery in a few weeks and then some pretty awful stuff might happen to you for two years but don’t you worry about that right now.” No, we’ll just let him be while we can.

I had his first conference at school yesterday and his teacher assured me that he is doing very very well there. Her written evaluation ended with, “Austin is such a capable, respectful little man, and a positive role model for the other children. It has been beautiful to watch him manage the transition to school with greater confidence each day. Now, he relishes it with a smile on his face most of the day.” She told me to hold on to that, which I will both literally and figuratively, as a snapshot of where he is now and as a goal to which he can someday return.