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A brief diversion from my kindergarten quandary (which I will take up again shortly) to point out that there was a Letter to the Editor in yesterday’s Plain Dealer written by Austin’s oncologist, Dr. Jeff Auletta. He wrote in response to this recent article about a high school dance organized to support St. Jude Children’s Research Hospital. Now I obviously think supporting St Jude’s and any other cancer organization is worthy, but I agree with Jeff that there are just as many sick children right here at home who are equally deserving of the community’s dollars.
It’s all sort of ironic because just yesterday Austin’s preschool held its annual Trike-a-Thon to raise money for St. Jude’s. I’ve always been very pleased that the school does this, even before childhood cancer became an integral part of our lives, but now it seems sort of silly — why not create an event to raise money for the kids at Rainbow or the Cleveland Clinic? Why send it all to Memphis when it can do just as much good here in our own backyard?
Back and forth, and back and forth, and back and forth. This is a terrible position for parents to be placed in. This is a terrible decision to have to make on behalf of our child.
What’s the right answer? What will cause the least damage, to mind and to body and to spirit? What will give Austin the best possible life?
We just don’t know what to do.
I had a phone consultation yesterday with the head of surgery at St. Jude. Talking to him in person (well, not in person, but actually speaking with him) left me convinced that he and the team there do indeed know Austin’s history and are indeed making informed and careful recommendations. So that was good. But talking with him left me more confused than ever about how to proceed.
Some key points: He said he can envision few scenarios in which this “thing” could be left inside Austin indefinitely. The likelihood of it being cancer is just too high, and the risks that would pose are just too great. Of course, the fact that Austin’s cancer has never spread is reassuring but is no guarantee that it won’t decide to start spreading at any given moment. He also wondered aloud about the tumor that was removed in April that was located outside of the kidney. At the time, we thought that was good news because it meant the kidney would remain safe and untouched through yet another round of cancer. But Dr. Davidoff said that that might itself be an instance the cancer spreading. How do we not know that that particular tumor originated in the kidney along with all the others and somehow moved out into the abdominal cavity? Of course, we can never know the answer to questions like that but it does make you think.
He also said, and this has given us a small bit of hope to grasp on to, that he is comfortable attempting another kidney-sparing surgery. This means that he would try to remove the current mass without taking out the entire kidney, something the doctors here feel wouldn’t be successful and therefore wouldn’t be worth even trying. (Because that would require another surgery to remove the damaged kidney so soon after the first surgery, I guess.) Dr. Davidoff said that they have done several similar surgeries over the years, none quite like Austin’s of course, but that he is certainly hopeful and willing to at least try it. The caveat there, though, is that he would be more likely to succeed if we did it sooner rather than later, before the mass grew any larger. Another thing to think about.
Also, he did say that they’ve had children at St. Jude who were initially diagnosed with solid Wilms’ tumors but whose recurrences were cystic Wilms’ tumors. That wasn’t what I wanted to hear.
Our decision has come down to this: We leave something potentially deadly inside our child. Something that might just sit there and do nothing, or something that might sit there seeming to do nothing for months or even years before suddenly sneaking away and then reappearing somewhere else in an unbeatable, untreatable form. Or we subject him to a major surgery that is likely to result in a completely altered (and considerably less pleasant) life for two or more of his most formative years. And that maybe that major surgery removed something that proves to be completely and totally harmless and it was all for naught.
Do you see why I say this is a terrible position for parents to be placed in? A terrible decision to have to make on behalf of our child?
I think, at this moment at least, that we are leaning towards trying a needle biopsy as planned before we learned that this mass was cystic (or fluid-filled). Aftert talking with Jeff yesterday, he re-explained that we can still attempt that route but that it’s not as likely to give us definitive results. Basically, if a needle biopsy comes back indicating that this mass is indeed cancer, then that would be definitive. If it comes back indicating that it’s scar tissue, . . . well, that might mean that the one tiny part they biopsied was scar tissue with no information about the rest. So, you see, the news we would hope for (that’s it’s scar tissue) would leave us right back where we are now, not knowing what to do. The news we don’t want (that it’s cancer) would at least tell us what to do next (go in and remove the damn thing already).
Of course, I (ever hopeful) will hold on to the slim possibility that when we biopsy it, it turns out to definitively be something else entirely, something no one had yet thought of that is completely harmless. Ah, a girl can wish.