We have reached consensus and we feel good.
We will adopt the “watch-and-wait” approach as advocated by our UH team over the “find-out-at-all-costs” approach as advocated by St Jude’s.
Here’s the low-down: First, and perhaps most importantly, this shadow has been on Austin’s kidney for the past two years. I know many of you are thinking, “Wait! What about the ‘clear scans’? What about ‘cancer-free’?” Every time he’s had a scan and every time Jeff has sat down to review it with us, he has stated very clearly that there are abnormalities in Austin’s kidney. There are shadows and dark spots and unidentified areas. Austin’s kideny does not look like any other kidney they’ve seen, mostly because it’s been subjected to such harsh treatment. We have looked past many of these shadows because we simply can’t get caught up in every little thing, until recently when this one showed some slight changes. It didn’t necessarily grow (hard to tell exactly because of the fact that Auston’s insides are three-dimensional while the scan images are two-dimensional) but it darkened and shifted position. Anyway, the important thing we came away with today as we sat in front of eight scan images at a time, is that it has changed very very little since September 2007. Very little.
Which means it might not be cancer at all.
But it might be, of course. That possibility remains and is still foremost in our minds. But we ultimately ran through all the “if. . .then” scenarios and watching and waiting seems to cause the least harm under all circumstances.
If it’s cancer, it is clearly growing very slowly. It has also never spread and so the chances of it spreading remain very very low. Also, and this is another key point in our decision-making process, if it does turn out to be cancer, it would be safest in terms of long-term survival and reducing the risk of recurrence if we remove the entire kidney. This means that attempting a kidney-sparing surgery, best done when tumors are as small as possible, isn’t even necessary. Which removes a lot of the urgency from the entire situation. If we wait a few months and this little shadow starts to grow, well, then we’ll assume it’s cancer and then we can go in and do a surgical rescetion. And we won’t be any worse off for having waited.
As we worked through all the options, the surgeon asked us to think about what outcomes would make us feel worst about the choice we made. And there were two: The first is that we leave cancer inside him longer than necessary and it spreads or turns into a worse, harder to detect or harder to treat type of cancer. That is clearly, hands-down, the worst case scenario. But they all heartily agreed that that is extremely unlikely to happen.
The second thing that would make us feel just awful is if we overeact and do some sort of surgery which destroys the kidney (either intentionally or accidentally), and then we find out that whatever it was inside him wasn’t cancer at all and we’ve put him and ourselves in a horrible dangerous situation for no good reason. That, they all agreed, was considerably more likely to occur than the first.
There was a lot of additional discussion around surgeries and biopsies, which I’ll explain in the next few days (I’m tired!), but we ultimately decided to do ultrasounds once a month and CT scans every three and regroup if we notice any changes. The ultrasounds are non-invasive and not at all dangerous and can be done as out-patients. They’ll show if the shadow has grown but won’t show any other changes (ie, color or position) which is why we’ll continue on with CTs.
So, we walked away feeling confident in our decision and much relieved about what lies ahead. There are always doubts in this process; nothing is ever certain and there are no guarantees. We may make mistakes or we may get lucky. But we are doing what feels right to us as his parents, at this particular moment given the information we have.
Tonight, I lay in bed with my children as Braedan read a bedtime story to Austin which involved slowly sounding out the word barf and the two boys squealed in hysterics and Braedan went back to the beginning of the sentence over and over and over just so he could get to that word barf again and again and again, and I thought, “Life is good.”
Life is good.