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Did I mention that this process is a series of ups and downs, a winding road of highs and lows and of ever-changing emotions and ever-changing plans?

We have a new plan, a totally different plan, and Mark and I are very very pleased with it.

We are keeping the kidney, going to let it run its course, see just how much farther it can chug along. There are no guarantees with this little organ, it sure has been subjected to a lot and it has more to face, but the surgery was a success and we’ll leave it there and see what it can do.

We will proceed with radiation exactly as I described, starting this Monday and doing the first four days before taking Christmas and the weekend off.

And we will do chemotherapy. It is a high dose, much much worse than what we’ve been through before, but it only lasts seventeen weeks. There are a lot of details I will share tomorrow (or whenever I have a few moments) but here’s the thinking behind this shift.

This type of Wilms’, the kind he has now, has a higher propensity of metastasizing to the lungs or liver. This spreading is halted only by chemo. That’s the purpose of chemo: systemic control, hitting the whole body with a poison that can kill any hiding cancer cells. The purpose of radiation is local control: killing the cancer cells in the very spot they appeared.

We have removed the actual tumor (for the most part), so now we treat “locally” with radiation killing any cells that may have spilled in that location. And we treat “systemically” with chemo killing any cells lurking elsewhere. Doing both (and doing it much more quickly than my pie-in-the-sky plan to develop a specific drug-sensitivity profile –something that won’t be widely available for another ten years) gives us the best chance at long-term survival. Taking the kidney out may — or may not — up those chances slightly. It’s not clear, especially because it makes the “local control” issue somewhat redundant. We’d basically be hitting the local cells with a double whammy and doing nothing about the systemic cells.

Does this make sense? Well, I don’t really care if it does or not right now because we feel really really good. We plan to remove the dialysis catheter (yay!) and insert a Mediport (a much improved under-the-skin Broviac line) tomorrow and then go home. Yes, that’s right. Go home. Tomorrow.

This is not going to be easy. This chemo will be pretty brutal. But we did this past surgery for a reason. To see if we can save that kidney and still provide adequate treatment. We believe this will do that.

If someone had told us a week or a month ago that we’d be rejoicing the fact that our child was about to undergo twelve days of radiation and seventeen weeks of highly toxic chemo, we’d think they were crazy. But tonight, we are rejoicing.

This just might work.

This has been quite a few days. Depths of despair punctuated by brief moments of clarity and even hope. I’m mostly just sad, sad for all Austin has had to endure and all he will have to endure, sad for Braedan for the very same reasons, and sad for us. More than ever in this process, I am acutely aware that it is all so very very unfair.

And that one bright spot I was focusing on in the last post, going home for Christmas before surgery? Yeah . . . not so much. Turns out they don’t want him to completely heal because that makes the next surgery trickier. They’d rather cut through him while it’s still fresh because otherwise adhesions can form putting the pancreas, spleen and bowel at risk. So it looks like we’ll do it tomorrow morning or maybe on Monday.

Lots of information here, I know (believe me, I know).  Let me try to cover all this ground.

First, Christmas: Assuming we’re still in the hospital, which is what we are indeed assuming, we have permission for Braedan to sleep there with us on Christmas Eve. Once both boys are tucked into their hospital beds, Mark and I will bring their presents from the car to place under the small but beautifully decorated artificial tree in Austin’s room. We have assured them that the hospital has a chimney and that Santa will know they’re there, and will even leave a note at home telling him so just in case. Mark and I have already worked out a schedule so that I’ll take Braedan to Christmas Eve events with my family and he’ll take him Christmas Day to his family. I’m sure the hospital does backflips to make the holidays as special as possible for their patients, so we’re not too worried about all that.

Now, the things we are worried about: My biggest concern right now is that we damage Austin’s body, mind and spirit with a veritable assault of treatment. Dialysis, we can deal with (aren’t I singing a different tune all of a sudden?). It’ll be a pain and will suck up a lot of our time, but it will indeed become routine and we’ll just manage. And radiation will be short: six days (weekends off) of his entire left side and six days of more targeted blasts on the area where the kidney currently sits. It’s adding high dose, highly toxic chemo on top of that that does me in. It just seems like too much to expect him to bear, both physically and psychologically, especially because we just don’t know if it’s necessary.

We have gone back and forth a thousand times trying to figure out the best course of action to ensure that he survives but to do him the least harm in the process. And no one, and I mean no one from among the best cancer minds in the country, has a clear answer. From the entire team at UH to the doctors at St. Jude’s to all the published research on relapse of Wilms’ tumor, there is no clear path for Austin’s all-too-singular case.  We will absolutely do what needs to be done to save him, but we don’t want to do too much. Not just because it will make his life miserable (although I do consider that a relevant concern), but because chemo has real and dangerous side effects, in both the short term and especially in the long term on a child so young.

I think our plan (as of this moment, with the information we currently have in hand which is unlikely to change) is to remove the kidney, as I said, in the next few days. He would then get started on hemodialysis, which would last a minimum of two years. It might be more because it’s unclear when we would be able to officially consider Austin “cancer-free” and therefore eligible for transplant. He’d go three days a week for four hours in the afternoon, allowing him to continue at school (unless of course, we do add chemo to the plan, in which case he’d be out of school due to compromised immunity). Our current thought is that I would take him on Mondays, my mom on Wednesdays and Mark on Fridays, both to spice things up for Austin (I do get boring after a while) and so that I would only miss one school pick-up for Braedan (we would like to keep his life as close to normal as possible, too). And we would of course do our best to keep Austin as fully entertained during those four hours as possible — thank goodness this boy loves playdoh and legos.

The chemo question does not have an easy answer. We will await the pathology on the entire kidney, which will give us answers to so many questions. We still don’t know for certain that there aren’t other small tumors or pre-tumors lurking around in there waiting to surprise us. So once it’s removed, we plan to send it off to one of the companies that creates a drug-sensitivity profile. This is an early version of what will be the standard cancer treatment of the future, where they take the specific tumor cells and test them against various chemo agents to determine the exact type and amount of chemo needed to destroy those particular cells. This will take some time, maybe even months, but would prevent us from assaulting his body with huge amounts of toxic and potentially unnecessary drugs. That way, if we opt for chemo, we’ll know we’re giving him just what his body needs and no more.

We feel pretty good about this plan. It is not easy, of course, but we have begun to adjust and accept this as our reality. I am now able to think of it and not burst into tears. This is our life, and yeah, it sure as hell sucks sometimes, but we can do this. We will do this.

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December 2009
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