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I know this is very last minute but, in preparation for our meeting with the dcotors tomorrow (or today, depending on when you’re reading this), I welcome your questions. Of course, we have a list of our own already and of course, we know a bit more about Wilms’ tumor and kidney dialysis and surgical resections than most of you (I hope!), but I’ve found over the last few weeks that it’s really useful to listen to the questions that others pose. The “what if’s” and “how about this . . .?” or “could they do such-and-such instead of such-and-such?” Sometimes we get caught up in our own way of thinking and our own set of fears or assumptions and we just need a different perspective.
So if you have a question or a suggestion or a scenario for treatment you think we should be considering, post it here (before 3pm on Monday). And wish us luck . . . .
We have our meeting scheduled with the team of four doctors for this coming Monday afternoon. We hope to get some real answers about how to get some real answers about what lurks inside our little Austin’s body. We feel we simply need more diagnostic information before we can make a decision about how to proceed.
It is obvious to me and Mark that if this shadow is cancer, or if we even have good reason to believe that it’s cancer, then we know exactly what to do. And that is certainly to remove the shadow and perhaps even the whole kidney. As unpleasant and potentially dangerous as they are, we will take dialysis and transplant over cancer any day.
The dilemma stems from the fact that we don’t know what this thing is. We do not know that it is cancer. And we don’t even necessarily think that it’s cancer. Truth be told, it’s a complete toss-up; the chances that it’s cancer and the chances that it’s not are almost even. Which is why we need more information, something definitive or at least something that tips the balance even slightly in one direction over another.
We can not go in and remove his only remaining kidney just in case, just to be on the safe side. Because unnecessary dialysis and transplant are not on the safe side. When I read through the charts of children who were enrolled in the National Wilms Tumor Study Group between 1994 and 2004 (the best data I have access to) and inevitably find myself studying those that died and why, there is a large cohort of children identified by the letters DDF: “died disease free.” These children did not die of cancer. They died of one of three things: infection, awaiting transplant or transplant complications.
This is not a path we will go down unless we need to. First, do no harm is not only the motto that guides doctors. It guides parents as well.
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, 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 (LRD or “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 more 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 best match and therefore 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 (called “grafts”) don’t last all that long. I read last night, “Some grafts 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 next. 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 it 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 use 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.