A few hours after I posted that cute story about Austin declaring himself “all done” with treatment, I got the dreaded call from Jeff saying that the doctors at St Judes did indeed recommend radiation. He still wasn’t sold on the idea, but thought we should set up a meeting with the pediatric radiation oncologist at UH to discuss it further. Mark and I, while very hesitant about radiation, were of course willing to talk about it so I called the office right away to set up an appointment. Well, when the secretary told me that we should bring Austin with us, I expressed some surprise and repeated that we were just having a preliminary discussion, and weren’t yet moving ahead with any procedures. She still thought it was wise and I capitulated, assuming as always that “the experts” know best.
This did not sit well with Mark, who knew that 1) We can’t have a productive conversation with Austin climbing all over us, 2) It would cause Austin increased anxiety to be sitting in another doctor’s office and 3) Whatever they could gain from seeing him in the flesh could just as well wait. So I let him call to inform the office we wouldn’t be bringing Austin along and they gave him a pretty hard time. The nurse got on the phone and insisted, claiming they needed Austin’s height and weight and latest vitals. Mark rightly pointed out that we were in the hospital a mere two weeks ago and they could just use those, and anyway, we weren’t yet at the point where height and weight and vitals would mean anything!
A few minutes after Mark called me with the latest blow-by-blow, an intern called to say that they’d spoken to my husband and wanted to make sure I understood that if we moved forward with radiation, they would in fact “need to lay hands on Austin.” Uh, yeah, okay. Did they think I was hoping he’d get radiated over the phone?
Needless to say, we walked into this visit already feisty, which was unusual for us. We have been extremely compliant this entire time, always friendly, always following the advice of our doctors. But this time felt different. We were not at all convinced that radiation could work for Austin and we were not going lightly down this path.
We went to sleep Tuesday night expecting the doctor to attempt to sell us on radiation as a viable and necessary option and expecting ourselves to turn them down. This idea made me extremely nervous. What if we refused treatment and his cancer came back? Would that be our fault? But what if we did it and his kidney failed and the cancer came back anyway? Or what if the cancer wasn’t planning on coming back in the first place and we destroyed his kidney and then he got radiation-induced leukemia in three years? Let’s just say, it all felt like too much responsibility for us to bear. These are not the kind of consequential decisions you expect to have to make on behalf of your babies. This is not bottle versus breast, cloth versus disposable, public versus private.
So, let me get to the point already. We walked in there this afternoon with an envelope of unsatisfactory research and a long list of questions. That we never even had to ask.
The radiation oncologist said that there was no research that proved, or even suggested, that radiation could work on rhabdomyomatous tumors. He further said that he was almost certain to destroy Austin’s kidney if he tried. And then he said that, as general practice, they try not to radiate any kids under six and especially under three unless they absolutely need it because the risk of secondary cancers is so great.
I was waiting for him to interrupt himself with a big “But. . . ” like they do on those 48 Hours Mystery-type shows where they lay out one side of the case and have you completely convinced before suddenly revealing the other, completely contradictory side. So I said, “What are the benefits?” and he looked at me, then back at Mark, shook his head and said, “Frankly, I don’t see any.”
He was trying to convince us not to pursue radiation! Let’s review the facts: There is no tumor or mass inside Austin to target with radiation; we don’t know or even think that he has cancer at this moment. Once you’ve radiated a field, you can’t do it again, which means radiation is an all-or-nothing kind of deal–why waste our one chance at successful radiation on nothing? Why subject his body and “the little kidney that could” to this poison if no one thinks it will work? If it comes back in a year, we’ll deal with it in a year, and it won’t be a year he’s spent on dialysis.
Will we worry? Of course we’ll worry. But we would have worried anyway. We would have worried even more if he’d been through radiation, about kidney failure and secondary cancers. We would have worried long beyond the next two years of Wilms-related worrying. Now we wait three months for a CT scan and hope hope hope it’s clear. Then we wait another six months and then another and another and then one day, in the not too distant future, we’ll get to use that other C-word: cured.
Little Austin was prophetic after all. This round of cancer is indeed “all done.”