Our Job
People keep telling me to go with my gut but all day long my gut’s been telling me to stop and then tonight, it switched over and said continue.
Here’s some more info, in response to some of your questions and comments (thank you for those) and to help me further flesh this thing out:
If we stop, we would certainly continue to monitor Austin. As his oncologist said today, “We wouldn’t just wish you luck and send you on your way.” He’d still have frequent, probably weekly, labwork to watch the kidney function, plus abdominal ultrasounds and chest CTs to check for relapse. He would not be able to do either MRIs or abdominal CT scans due to his diminished kidney function. That gives us pause because abdominal CTs are more accurate than ultrasounds but if we have the right person doing them (since ultrasounds are more user-sensitive than CTs), they’re still enormously useful. In fact, we followed his “shadow” in the fall on ultrasound for many months (and some people argue that this is a better approach anyway because it reduces the radiation risk). So we’d still be watching, at least every three months until we felt that things were holding steady enough to move to six.
Austin is scheduled to have an ultrasound on Monday which could help us finalize this decision since if there’s anything remotely suspicious or different from the last time, we’d obviously opt to move forward. But his full scans, including an abdominal MRI, were clear in the end of March so we expect and hope that hasn’t changed.
If the cancer were to return again, we would remove the kidney then and there without another thought. But it might be too late. This cancer is tough enough to “cure” the second time around; the third time is almost definitely fatal. So, you see, this decision is a heavy one. Here’s what the study shows us (and remember, there are no kids like Austin in this damn study — every child with bilateral Wilms was removed at the onset and none of the kids had Austin’s rhabdomyomatous variation) but it shows that out of 60 children with relapsed Wilms who went through this protocol (having anywhere from less than one to the full six maintenance cycles), 33 of them had a second relapse (i.e, cancer for the third time) and, of those, 27 died.
This lovely bit of information (which is shockingly new to you but sadly familiar to us) could actually push us in either direction. It could make us say, “Holy shit, this is serious stuff. We need to do everything possible to not let it come back, no matter how miserable it may be.” But then there’s another side of me that says, “Wait a minute, here I am being told that my child has at best a fifty percent chance of living, at best. Shouldn’t I do everything in my power to make sure his life, however short, is good? Or great, even? That he doesn’t spend half of his piddly little life in a hospital, hooked to machines, on the wrong side of the window?”
It’s a crazy way to think. It’s unnatural for me to write these words or think these thoughts and yet, this is our reality. This is how we have to think. We have to know that if we choose to stop, he might die. But, fuck, he might die anyway. We might remove his kidney and keep pumping him full of chemo for week after week and cycle after cycle and he might die anyway!
Because here is what the study does not tell us, anywhere, ever: what difference additional cycles make. It never ever mentions how the 12 kids who did one cycle fared compared to the 14 who did two compared to the 2 who did five. They never tell us! So how are we supposed to know if two is actually better than one? Or if two is even enough — what if we have to do three or four or six to make a true statistical difference? (And then how many of those kids end up dying from treatment related complications or from leukemia ten years later??) Our oncologist has requested that information and never received it but I’m asking on my own, sending random emails to the study authors to see if we can glean a little insight into what seems to be the most important factor.
And then there’s the issue of how long the kidney will last if we do stop. It could, of course, fail next month. And then we’d be on dialysis anyway. Or it could bounce back, free from its recent stress, regain some function and keep on keepin’ on. Remember, it only needs to make it two years before he can be transplanted, as long as he remains cancer-free. So even if it chugs along for just another six months or year, it would still get us that much closer.
Our oncologist has said he’ll support whatever decision we make. He recommends continuing but he also understands and respects the other side. He told me today that if he believed we were putting our child at risk or were making a mistake, he would tell us. But he doesn’t think that. He knows there’s no one right answer and he sees the value of either choice. Which says a lot because, as an oncologist, his job is solely to rid my child’s body of its cancer.
Our job is so much more.
Dear Krissy and Mark- I read every word of your reports but do not enter comments because I feel that I have nothing helpful to contribute. This scary crossroads is cluttered with so much debris of statistics, theories, unknown variables that I can only support your decisions, whatever they may be. I do have one homely suggestion for your own well-being. Maybe the two of you should find the way to go off for a few hours alone together. As soon as possible. Now. Out of your house, out of the hospital. Breaking out of the unbearable war zone, even briefly, to take a deep breath and to be totally quiet together. It won’t lead to any epiphanies, but it might be a great release. I love you each and every one and think of you constantly. If there is anything that I can say or do (besides the doorstep drops) please know that I am always here. Love, Joanne (for Rompie, too.)
Krissy, this is an impossible situation, which you already know, so I’m not telling you anything new. But here are a few things to consider – which may make things more confusing, or may bring some things into focus. First of all, whoever did the study on relapses MUST be able to tell you exactly the question you asked – how did the kids who did one cycle fare compared to those who did 2 or 3. The data is obviously there. I’ve run many clinical trials myself – they have to keep the data, so someone needs to look at it and answer your questions. So someone is sitting on their lazy duff and not answering your questions – the oncologist has to call whoever the principal investigator was and literally scream at them and get them to answer your questions, which are highly relevant and important. If they won’t answer, they should be ashamed of themselves. Second, here’s something to consider, and the oncologist may have some thoughts on this – given that Austin’s already been through a cycle, and his bone marrow did get fairly suppressed, what are the chances he starts another cycle, and after a couple of rounds of chemo his bone marrow is so suppressed he just can’t continue. Then you’ve taken out that little kidney, and he’s on dialysis, and he can’t tolerate the chemo any further because of his bone marrow suppression. Not to throw a monkey wrench in the mix here, but this has to be considered – what are the chances that could happen? Are they 10 percent, or 50 percent, or percent – that might make a difference in your thinking. Third, there are indeed cases like Austin’s in the literature – there aren’t many, but I think I found at least some – so the oncologist could look at these very carefully and see how they fared after how much chemo – remember, Austin doesn’t just have relapsed Wilms – he has a relapsed Wilms that changed its pathology – I don’t know what that means, but it seems to me from what I’ve read, that the rhabdo tumors aren’t all that responsive to chemo (which must be why his tumor grew to begin with, after he started chemo), whereas the “regular” Wilms are much more responsive to chemo. So who knows, maybe that course of chemo he just had is enough to kill all those potential little invisible cancer cells still lurking. To my thinking, these are the finer points to consider – not just looking at the “trials” and how do these kids who relapse fare, but what about kids who start out as rhabdo and then turn into regular old Wilms – what about looking at those kids and seeing how they do. It seems to me that when I looked at the literature way back when, and found just a few cases, that they seemd to do well. But I don’t want to trust my interpretation of the literature – your oncologist could review these papers with you. Fourth, what is the harm in stopping now, and waiting to see if there is a relapse, at which time you take the kidney out and start more chemo – what do you lose by doing that? Anyway, I hope this is helpful. Believe me, I know how crazy making this all is. When my little Abby went through her chemo, I think she was actually the only case we could find who not only had a diffusely anaplastic Wilms (which is an awful prognosis), but she also had a paraneoplastic blood disorder with it, that went away when she had the tumor removed. At the moment she’s doing fine – though as you know – we’re always looking over our shoulder.
My thoughts, prayers and love are with your family. I read your blogs everyday and I always find myself searching for some profound thought or insight that might bring a little comfort or peace to your family. I know in my heart that every one of us wishes there was more we could do to help. But I also know in my most humble moments of acknowledgment, that THIS is all we can do. We come together by reading the blog daily; by crying & praying and wishing & hoping, both by your side and sometimes separately, just in our hearts. So often you speak of family and friends that have been wonderful and supportive, and do all they can. It’s just like you analogized in “Like running a marathon” Krissy, we are all in this with you, and that’s all anybody can do…..even you and Mark. So as you go forward and make the decisions that you have to make, always know that you have an army of love and support, no matter what. So I’ll leave you with this tought, and I say it with all the love my heart can hold; there is no right or wrong decision, we don’t have that power, we’re only human. Just love each other and stand strong as a family. Cry, talk, and hug it out…..feelings are meant to be felt. In that space, I believe the spirit will speak to your hearts and you will know what to do. Just focus on what’s important…….the rest will follow.