Joy in Unlikely Places

Last Friday afternoon, following our long day of doctors’ appointments, I posted a no-explanations-needed Facebook status that simply said, “Three-and-a-half years.” I know it didn’t need any explanation because I immediately got numerous likes and congratulatory comments.

This is all wonderful and we are pretty happy with the fact that Austin is indeed three-and-a-half years cancer-free, but of course, there are many, many explanations needed. Because nothing in the cancer world is ever that cut and dry.

First of all, his heart, one of several oh-so-complicated organs for my sweet Austin. You may remember that this entire cancer journey started six-plus years ago with a visit to a pediatric cardiologist to look at a small VSD that had been found at his nine-month Well Visit. That VSD (a tiny hole in the wall of one of the chambers of the heart that in many children closes on its own) still exists but poses no threat or consequence to his health. He has, however, had a history of enlargement of various parts of the heart, most notably his left ventricle. The measurements (as determined by ECHO and EKG) seem to fall in and out of the “normal range” depending on his overall size and age, and have been considered normal for some time now. But this past Friday, the dilation of that ventricle was larger than what doctors call normal. And there was another portion of the heart that was fused together. I know this sounds like a lot of mumbo-jumbo (to me too, especially when the report says things like, “Possible partial fusion of the right non-coronary commissure”), but the most important finding is that his heart is functioning perfectly. There is absolutely nothing wrong with the way it works, despite the fact that there are several things wrong with the way it looks.

The cardiologist wants to see us back in six months instead of the usual 12 as she wonders if the fact that last year’s heart exams were done at Rainbow and these at the Clinic may account for what appears to be growth (like how your weight changes depending on the scale you step on). She also wants us to see genetics, which we haven’t done since Week One back in August 2007. At that point, in the days immediately following Austin’s diagnosis, he was tested for a particular chromosome that is associated with one (very dangerous) type of Wilms tumor. When that was ruled out, we never saw genetics again. The current cardiologist is confident that we don’t need to treat his heart in any way at this point in time, but is mindful that we may someday have to. She would like as much information as possible at that time, especially since his various abnormalities are not easily explained. Chronic high blood pressure can lead to an enlarged heart, but his blood pressure has been tightly controlled for years now. That coupled with renal failure, the late-effects of chemotherapy, and what others have referred to as “Austin’s unique anatomy” could make for an interesting future indeed. So, off to genetics we’ll go, in the next month or two.

The other explanations needed regard his kidney (speaking of oh-so-complicated organs). His function is indeed slowly (very slowly) deteriorating. The changes are minor and not unexpected and not causing any one any great alarm. His lab results over the summer led to our adding two new drugs to his current regimen, so he now takes three in the morning and four at bedtime. He also suffers from chronic anemia, although you would certainly never know. Again, as with his heart, these are problems we see on paper that are not at all evident in the child himself. One of the docs on Friday asked if he could keep up with other kids his age. Ha! The real question is, can they keep up with him?

So anyway, his oncologist would like him to repeat labs in a month’s time, just to ensure that his counts remain steady. There is really nothing big to worry about at the moment, any more than we would worry on any regular day. We know his long-term health is going to be anything but straightforward, we know the risks of kidney failure, heart disease, secondary cancers. We know that this journey will never be over. But the news from Friday was ultimately good. Austin’s kidney is still working. His heart is pumping along. And there is no evidence of cancer in his body.

Like Austin himself, who finds joy in the most unlikely places, we take what we can get.