The Long Shadow

Some of you may have seen this yesterday when I posted it on Facebook, but it’s worth a click to enlarge:

It provides us all with some fairly good reasoning for why we need to fund pediatric cancer research. Not that many of us actually needed that reasoning, but there it is.

But you know that part on the graph: “Well, survival is a relative term” where it lays out the percentage of survivors living with severe and life-threatening health problems? Yeah. That.

Austin had an appointment with his kidney doctor yesterday, and, well, it’s not doing so great. I mean, it’s still doing. Doing whatever it needs to do every second of every day, despite being a quarter the size of its average kidney peers. But it has gotten noticeably worse since November.

We’re not in panic-mode or anything. This seems to be part of the process. And that’s not just me being casual about everything; it’s true. His doctor is hopeful that with extra hydration and a shift in medications, we could see a dramatic turnaround. So Austin now has special permission to have a water bottle at his desk and to bring it along with him anywhere he goes. Of course, the last thing Austin ever wants is special permission to do anything that’s in any way different from what his classmates are doing. But who knows, maybe water bottles will become all the rage for second graders from now on.

Here are the details: His creatinine, that number we watched so carefully throughout the spring and summer of 2010, has shifted upwards in a way that concerns all of us. His estimated GFR (another number we watched so carefully in the spring and summer of 2010) is now 38. When/if it hits 30, he’ll be in Stage 4 kidney failure instead of his current Stage 3. His doctor, who is calm and collected beyond all measure, has assured me that he could hover at any one of these numbers for years on end. So his creatinine might decrease to 35 but then just sit there for three years, before decreasing again to 32. It’s not until it reaches 25 or below that we would start to test potential donors. And not until 20 or even 15 that he would need to start dialysis or transplant. So we have time.

She did say that her number one indicator of where someone sits on the continuum of kidney function is how they look, feel and act. And since Austin was doing his usual zoom across the room on her spinning doctor’s chair when she walked in the door, she feels pretty confident that he’s fine. I watch him every day and would whole-heartedly agree.

But as we edge ever closer to the five-years cancer-free mark, we know that we are never truly free of cancer. Its shadow will follow him, and all of us, for the rest of our days.

And now, I find myself under yet another dark shadow cast by cancer. The father of one of our past shavees, and a shavee himself last year, died Monday morning from a brain tumor. Unexpectedly. Despite, you know, the brain tumor. He was laughing yesterday morning. Mere minutes before he felt dizzy, laid down, and then was gone. Laughing and talking with the nurses in the extended care facility where he was recuperating from brain surgery before returning home to his wife and three kids. And then he was gone.

And now this woman, who is lovely and upbeat and always willing to help others, is without her partner, forever more. And her children, who were so so lucky to have known him, are without their father. They really thought he might die about three years ago and I believe, from the people who know them better than I do and from the wife’s own writing, that they lived each day to its fullest and never took anything for granted. But still…  still.

And still, they move on. Two of this man’s sons would like to shave this Sunday in his honor. I am currently revamping the day’s schedule to fit them and their peers in before the 2pm funeral. And it is my deep honor to do so.

But you know what? Fuck cancer. And all of its shadows.