Q & A

Alrighty, so now that I’ve gotten really technical and given you all so much information, there seem to be a lot of questions. This is what happens when I share the story in real-time — I can’t just make sweeping generalizations about it after the fact, but instead drag you all through each seemingly contradictory medical moment. So I’m taking today to try to answer some of the questions I keep hearing over and over. Feel free to post additional ones in the Comments section and I’ll do my best to come up with regular-person answers that don’t require years of med school to understand.

Why is it so good that this isn’t a recurrence (if this indeed isn’t a recurrence)?

This is the big one I keep hearing, which I think I mostly answered in Monday night’s post, which was all about survival statistics. Basically, if this particular cancer comes back once, it then has a tendency to come back again and again. Sooner or later, it would just be too much to successfully treat, either because you’d have used up all the chemo drugs (many of which have maximum lifetime doses, especially in such little bodies), or because once you’ve radiated a certain spot, that same spot responds less well to radiation again, or because there are only so many times can you open up a child’s body and manipulate his insides to do a surgical resection. So it is much much better if this was just a little “leftover” cancer from the first round, which now we can think/hope/believe we’ve completely removed.

Can we be certain if this is a recurrence or not?

No! Ah, modern medicine … there are so many more unknowns than I ever imagined. But I talked about this in the last post and again below. It doesn’t actually change our course of action moving forward, but would change the way we feel moving forward.

What does “chemo-resistant” mean anyway?

This is tricky and hopefully not too dreadfully boring but here goes — Wilms’ tumors are made up of three types of cells: cancer cells, muscle cells and lining cells (which all have fancy medical names). Most Wilms’ tumors are primarily cancer cells, with some muscle and lining thrown in for good measure. Austin’s tumors, on the other hand, were almost entirely muscle, upwards of eighty percent. (I am talking about the original tumors from back in August, September and October of 2007, by the way. I’m not trying to confuse you even more!) Chemotherapy drugs are designed to target and kill cancer cells. So only a very small percentage of Austin’s tumors responded to the chemo as expected. There was some chemo-induced shrinkage but it was only on a tiny portion of the tumors, while the muscle cells were growing or multiplying or differentiating so rapidly. This is both good and bad. Good because the tumors weren’t all that cancerous (cancer is, after all, a relative term). But bad because the growth of the tumors was so very dangerous, not because they were cancer but simply because they took up so much damn space in his small body, pushing aside his right lung and causing his blood pressure and heart rate to skyrocket and his stomach to bulge forward. They literally would have grown too big for his body (picture that, for a moment; it’s as bad as you’re imagining).

So once we realized that his tumors had this rare rhabdomyomatous differentiation, why did he keep getting all that chemo?

Well, this one is even trickier. The best answer is because we just weren’t entirely sure what we were dealing with. There are very few cases of kids with tumors quite like this and I think that, into the future, Austin’s case may actually change the protocol for kids across the country with this variation. The very fact that his tumors didn’t respond to chemo is part of why we can now say that tumors with rhabdomyomatous differentiation don’t respond to chemo!

Also, and this is important, there is a tendency to over-treat pediatric cancer patients instead of undertreating them. When doctors and parents have a child with cancer, they do whatever they can to get rid of that cancer, even things that are potentially harmful. Cancer treatment is dangerous, both in the short-term and certainly the long-term. Many cancer patients die of their treatment, not of their disease, which is sort of stunning when you stop to think about it. They die from the medicine, such high doses of chemo destroying their immune systems so that when they get some random virus their bodies simply can’t fight it. Chemo is toxic after all. And both chemo and radiation lead to secondary cancers. But this is stuff we parents don’t have the luxury of considering until after the fact. And doctors desperately want their patients to be cured of their cancers, to live, and they want to do it without causing harm, but the research simply doesn’t exist yet to support how little you can do and still have a favorable outcome. This should be the next frontier in research —  how can we treat one terrible thing without causing another terrible thing?

Jeff has said to me many many times in the past nineteen months, “We could probably treat Austin’s cancer with a chisel, but all we have is a sledgehammer. We know the sledghammer will work and so we use it. But we also know it will cause all sorts of peripheral damage.” But what choice do you have?

So Austin had eight months of chemo, just in case. Did it work? Who knows? He’s alive, right? And this little tumor we just removed had been treated by chemo, which means that the cancer parts of it were destroyed but the muscular parts still grew, albeit much more slowly than the original tumors.

Geez, I just read this through and am really hoping it helps and doesn’t hinder!

So, what now?

Not much apparently. Definitely no chemo and probably no radiation, although the final verdict on that has yet to be made. I do know we’ll do another CT scan in three months, and, if that one is clear, we’ll get back on the every-six-month schedule. So ultimately, while Mark and I have increased worry, the boys’ lives should not change. Braedan will still be allowed to have friends over, Austin can still start preschool in the fall (something he begs for every day when we drop Braedan off), we can go on family outings to places filled with kids and germs and fun. Life goes on.

The clock, though, has been reset. You may remember that, because Wims’ tumor recurrences tend to happen within the first two years, a child is not considered “cured” until they are two years from the end of treatment, which would have been February 2010. Now we set our sights on February 2011, so mark your calendars.

And finally, the most difficult question of all to answer: How about a family picture that shows all four of you?

The best I can do are these from our trip to Jamaica in January, when we took the boys to a petting farm for a pony ride and they absolutely hated it. You would have thought we were making them swim with crocodiles or something, there was so much crying it was actually funny. So enjoy …

Feeding a goat, oh horror of horrors!

And a pony . . . still no smiles

Braedan couldn’t even bring himself to look at the camera

Oh the cruelty! (and I’m not talking about the horse)