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Here’s a little more “feel-good magic” for you, this time closer to home.
Austin had an appointment with his nephrologist last week and that little kidney is holding steady. His creatinine was .75, one of his lowest measures yet. Well, not “yet” like forever, but at least since the kidney failure scare of March and April 2010. All other numbers have held steady, which means that, while still officially in Stage 3 renal failure, this child’s half-kidney is still kickin’.
Which effectively removes one of our life’s greatest fears: years of kidney dialysis, being hooked to a machine every other day for four hour stretches, all in a windowless room. Nope, that’s not likely to ever ever happen — ever — because my child’s two-year scans are scheduled for May 3.
That’s right. Two weeks from now, Austin will have an abdominal ultrasound and a chest CT that could and should mark him two-years cancer-free. Two years cancer-free. TWO YEARS CANCER-FREE. Something we’ve been waiting for for nearly five years.
I, more than anyone, should know not to count my chickens before the hatch, but really, . . . we have no reason not to expect that these scans will be as clear as the others have been for the past twenty-three months.
And, of course, I’m also well aware that clear scans that day guarantee nothing. They certainly don’t mean that new cancer couldn’t start growing the next day. Or that old cancer couldn’t return the day after that.
But — and it’s a big ol’ but — the odds are enormously in our favor once we make it past the two-year mark. Enormously. The chances of his Wilms tumor ever returning will be very very slim once we’ve hit that milestone. And, as important in our minds right now, if his kidney should fail he’d finally be eligible for transplant.
Seventeen days. And we’ll finally get to pop open that fancy bottle of champagne my dad’s been saving for us for years. Seventeen days.
Austin’s GFR results were 34. Right . . . no typo there: 34. Almost as bad as the result last month that necessitated a retest. And not nearly the still-not-fabulous-but-definitely-acceptable 66.
Here’s what this means in the world of kidneys: He can still get this next chemo, which is scheduled to start on Thursday, but it needs to be further dose-modified. If his GFR dips below 30, which we assume it will next month, he either has to stop this particular drug or (maybe — this hasn’t been confirmed yet by his docs but it makes sense to me) get dialyzed after each dose. We’ve already explored the possibility of doing only two of the three drugs in his protocol but have been told that their effectiveness lies in the specific combination and leaving one out would render any of them much less useful. So it’s sort of an all-or-nothing thing: either we stop chemo altogether or we continue and add dialysis to the mix.
For someone who doesn’t have cancer but suffers from regular old kidney disease, a GFR of 30 makes them eligible for transplant. Austin, of course, won’t be eligible for transplant until two years after the end of treatment (not two years after March 30′s clear scans, as I had hoped). And a GFR of 15 means thrice-weekly dialysis.
The path ahead seems a bit inevitable right now. I suppose the descent could slow or stop and we could hover here with a GFR of 34 for weeks or months or years, but we’re not holding our breath for that one. There are many many discussions to be held with our doctors when we’re in-patient this week; many questions to ask and answer; many scenarios to play out.
But no matter what we end up with, no matter which thorny path emerges from the forest, we will walk it.
Here we go again.
Mark and Austin just left for the hospital and I will meet them this there evening (after updating, running and having dinner with at my parents’ with Braedan). I will stay the night and Mark will return bright and early tomorrow morning. This afternoon, Austin needs a “bowel prep” which is about as lovely as it sounds. They will literally flush his bowels out, which first requires the insertion of an NG tube. Another family favorite, this involves one of us (thankfully Mark this time) holding him tight in his arms facing outwards while a nurse (or two or three) stick a tube up his nose and down to his stomach. Then they pump him full of “GoLightly” (I’m not kidding about that brand name) and he poops all night long. Oh, joy.
He’s due in the pre-op room tomorrow at 6:30, with surgery scheduled to start at 7. I imagine we won’t see him until at least 3 pm, although the doctors will call us periodically from the operating room to update us on his progress. After surgery, he’ll be in the PICU for anywhere from a few hours to a few days, depending on how surgery goes and how (and if) his kidney is functioning. After the surgery that removed his right kidney in September 07, he was only in the PICU for eight hours before returning to the regular oncology floor. But after the first kidney-sparing surgery in October 07, we were there for four days. The nice thing that time was that we were able to keep our regular room the entire time which gave me and Mark somewhere to shower or nap, plus allowed us to leave the wishing stars hanging from the ceiling awaiting Austin’s return. I’m sure the nurses will try to accommodate us in this way again, but it all depends on how crowded the floor is and if they can dedicate a room to a patient who isn’t actually in it.
The PICU is a pretty miserable place. You have no privacy, only a glass wall with a curtain pulled across it. There are lights and beeping machines at all hours of the day and night, not to mention the constant PA announcement requesting emergency help of some sort or other for some child or other. Rest is hard to come by, for both parent and child. So I do hope our time there will be short.
And now I focus your attention on what we’re up against:
There are so many little milestones we must reach before we can claim victory over this beast one more (one final) time. First, the surgery itself. The doctors need to be able to remove all the cancer they see, while leaving the kidney intact. This is an extremely complicated procedure and there are many things that could go wrong. Remember how all the scar tissue has caused adhesions and how the kidney is now suctioned up against the spleen? The kidney could fail (probably by bleeding out) during the actual surgery and then be removed. The doctors could also find more cancer that they’d expected and opt to remove the kidney (after calling us first).
So, if he makes it out of surgery tomorrow with any kidney at all, that’s one small step in the right direction.
Then the kidney has to work, which could take some time. He’ll have lots of bloodwork and we’ll be watching that pee output with an eagle eye for days to come. He may need temporary dialysis to jump-start the kidney. But if it keeps chugging along, that will be our second small success.
The next thing we have to worry about is the pathology of the tumor(s) they’ll remove along with a sampling of lymph nodes. These results, which will determine future treatment, should come back by Thursday. They might tell us that the tumor(s) is the same rhabomyomatous type he’s had in the past which would mean no need for chemo but maybe one three-week blast of radiation (which, yes, could destroy the kidney we worked so hard to save). The results could tell us it’s a “regular” Wilms’ tumor (which we don’t expect) necessitating chemotherapy. They could even tell us that the tumor has unfavorable histology (or anaplasia or displasia) which you may remember me describing as psychotic cancer cells as opposed to the more normal (and treatable) bad cancer cells. If that was the case (again something we don’t expect), we would go back in and remove the rest of the kidney just to be safe.
And then there’s this possibility, which is what I want you to wish for (even if you can’t pronounce it): It could be a nephrogenic rests, those pre-cancerous tumors. If this was the case, he’d need no additional treatment and we’d all pat ourselves on the back for getting it out of him before it turned into another Wilms’ tumor.
So you can see, we have many hurdles to leap over, many mountains to climb, many battles yet to fight. But if anyone can do this, Austin is the guy.
He told me last week that he could do anything. It was when I voiced concern over the height of the furniture he was about to dive off. But he looked at me and stated with the clear conviction of a three-year-old, “It’s okay, Mom, I can do anything.”
So here he is, poised at the top, ready to dive. And he can do anything.
You know, you would think, after all we’ve been through, that we would learn not to get too comfortable. That we would somehow always be ready, forever on our toes, prepared for whatever comes.
And yet instead, we learn to adapt so quickly that it feels almost seamless. We move fluidly from good to bad to good again. From pessimism to optimism, from despair to hope.
And back again.
Austin had an ultrasound yesterday morning, one month after his last. The cystic lesion that we’ve been watching, the cause of all of our recent worry, has remained the same, no changes, no growth. Which is exactly what we wanted it to do. And which is all that we thought to hope for.
But, of course, as we should know by now, as we should have come to expect, there’s something else. Always, always something else to worry about.
Right near the cystic lesion is a very small mass, probably solid and definitely new. The “new” factor is the most alarming. He had a scan six weeks ago and an ultrasound four weeks ago and this thing was not there then but is there now. Which means, of course and unfortunately, that it’s probably cancer. New cancer.
But (there always a “but” after the good and the bad), we’re not sure. Dr. Auletta has recommended a repeat ultrasound in two weeks which would give us enough time to do a surgery before Christmas if it has indeed grown. If it hasn’t grown, we would probably wait until after the holidays for his regularly scheduled CT scan and then take any necessary action after that.
So the pendulum swings again. We felt so good, relieved, “over it,” for the past ten days. And now we’re back again, on the cusp of surgery and likely kidney failure and all that comes with it. There are many unknowns as of now, but if it is indeed a recurrence, he would likely need some cancer treatment as well, in the form of radiation or chemo in addition to dialysis.
Here we go again.
We have our meeting scheduled with the team of four doctors for this coming Monday afternoon. We hope to get some real answers about how to get some real answers about what lurks inside our little Austin’s body. We feel we simply need more diagnostic information before we can make a decision about how to proceed.
It is obvious to me and Mark that if this shadow is cancer, or if we even have good reason to believe that it’s cancer, then we know exactly what to do. And that is certainly to remove the shadow and perhaps even the whole kidney. As unpleasant and potentially dangerous as they are, we will take dialysis and transplant over cancer any day.
The dilemma stems from the fact that we don’t know what this thing is. We do not know that it is cancer. And we don’t even necessarily think that it’s cancer. Truth be told, it’s a complete toss-up; the chances that it’s cancer and the chances that it’s not are almost even. Which is why we need more information, something definitive or at least something that tips the balance even slightly in one direction over another.
We can not go in and remove his only remaining kidney just in case, just to be on the safe side. Because unnecessary dialysis and transplant are not on the safe side. When I read through the charts of children who were enrolled in the National Wilms Tumor Study Group between 1994 and 2004 (the best data I have access to) and inevitably find myself studying those that died and why, there is a large cohort of children identified by the letters DDF: “died disease free.” These children did not die of cancer. They died of one of three things: infection, awaiting transplant or transplant complications.
This is not a path we will go down unless we need to. First, do no harm is not only the motto that guides doctors. It guides parents as well.
From the mouth of my outrageously smart, not-yet six-year-old when I told him about our latest predicament with Austin: “But Mom, the real question is, How are we going to know what’s inside of him?”
Exactly Braedan, exactly.
I know a lot of you have questions too, so I will do my best here to provide a few answers. First of all, on the issue of kidney transplant: I’ve explained before that transplant can’t take place until a patient is two years cancer-free. A few of you have asked (and I’ve wondered as well) if that rule might be tweaked if a donor stepped forward and said, “I don’t really care if Austin might have cancer inside him, I’m willing to risk it and I want to give him my kidney anyway.” It’s a nice thought but the answer is a resounding no. This is a hard and fast rule with absolutely no wiggle room. In fact, the entire hospital could lose its license to perform transplants if they were to do something like that. The main reason (and it’s a good one) is that the immuno-suppressant drugs transplant recipients have to take can cause cancer to grow. Not exactly the outcome we’re looking for.
Some other things I’ve learned about kidney transplants: The most successful transplants occur when the donor is a live relative (LRD or “living related donor”). The ideal kidney comes from anyone between the ages of 18 and 35, although they’ll go as old as 50 or more with a healthy match who has no history of high blood pressure. I am automatically out of the running because of my diabetes, but we feel confident there are many family members who would step forward and be tested. The best match is determined based on a set of six tissue matches, all with a numeric score. The highest scoring kidney is the best match and therefore least likely to be rejected by Austin’s body as foreign. An unrelated donor with a high tissue match is also a fine candidate. We have quite some time (obviously) before we need to even begin that process but it’s helpful to start thinking about it.
The bummer about him needing a transplant so much earlier in his life than we’d expected is that transplanted kidneys (called “grafts”) don’t last all that long. I read last night, “Some grafts even last twenty-five years” and I thought, “Oh, great, so we can do all this again when he’s thirty?” Not to mention the risks of infection during the years of dialysis. He again is put into that high-risk category where exposure to chicken pox or pneumonia could mean hospitalization and death. And then there are all the drugs he’d have to take for the rest of his life to ensure his body continues to accept the new kidney, which surely have side effects especially when taken for so many key developmental years.
But before we get to all that, we still need to figure out what exactly to do next. We’re planning a meeting with the team of four here at UH (oncologist, surgeon, radiologist and nephrologist) so we can explore the many paths we might find ourselves on. A few of our questions include:
1) Does the fact that this mass is fluid-filled make a kidney-sparing surgery more or less likely to succeed? ie, Is it easier to get clear margins with a solid or fluid filled mass?
2) (And this one is key) If this is indeed cancer, would we up our chances of cancer-free survival if we just screw the kidney-sparing attempt and take the whole thing out? Is his cancer less likely to recur if there is no kidney for it to orignate in?
4) Can we do an open exploratory surgery where they biopsy the mass while he’s “open” before we decide whether to remove it and/or whether to remove the whole kidney?
5) If we do such a surgery and it turns out to not be cancer but the kidney fails as a result of the exploration, can we consider him cancer-free from April 2009, the last time there was proven
cancer in his body and therefore put him seven (or more) months closer to a potential transplant?
We hope to get some real answers to those questions, but know that 1) There are no guarantees and 2) With few, if any, kids who’ve ever had this type of cancer, there are few, if any, data points to use to mark our path.
In the meantime, Austin himself is totally fine. He feels normal, acts normal and is normal. We haven’t told him anything yet because it’s all too uncertain for a three-year-old’s mind to grasp. What can we say? “Austin honey, we think there might be cancer inside you and we might do a surgery in a few weeks and then some pretty awful stuff might happen to you for two years but don’t you worry about that right now.” No, we’ll just let him be while we can.
I had his first conference at school yesterday and his teacher assured me that he is doing very very well there. Her written evaluation ended with, “Austin is such a capable, respectful little man, and a positive role model for the other children. It has been beautiful to watch him manage the transition to school with greater confidence each day. Now, he relishes it with a smile on his face most of the day.” She told me to hold on to that, which I will both literally and figuratively, as a snapshot of where he is now and as a goal to which he can someday return.
The mystery of Austin’s kidney continues with no easy resolution in sight. Yesterday’s ultrasound revealed that this shadow, this mass, actually appears to be filled with fluid. Now at first glance that seems like good news because Wilms’ tumors are solid tumors. But of course, there are things to worry about that we had never heard of before.
First of all, the radiologist doesn’t think he can do a needle biopsy on it if it’s fluid-filled because he usually takes slices off of solid growths. Fine needle aspiration is a possibility, although one that often results in non-diagnosis (or even misdiagnosis) due to the small sample size. So it seems likely that we cannot find out what this thing is without removing the entire kidney and biopsying it. Which we are not willing to do. At least, not yet.
Jeff (that’s Dr Auletta, for those of you not yet on a first name basis with our oncologist) said there is a spectrum of cystic lesions that this thing might be. It could be a benign cystic nephroma (you guys should qualify for an honorary medical degree just for reading this stuff!), which is not that big a deal. It could also be a partially differentiated nephroblastoma, which falls in the intermediate danger range, sort of a non-aggressive cancer-like growth. It would appear that neither of these two options are particularly dangerous; however (big however here), in kids with two functioning kidneys who present with one of these two cysts, the typical course of treatment is to remove the entire affected kidney. Just in case. It’s really a better-safe-than-sorry approach; sort of no-harm, no-foul. Now with Austin, such an option is not really an “option,” but a last resort.
And here’s the other thing it could be, on the far end of the “spectrum of cystic lesions” I now have to worry about: it could be a cystic Wilms’ tumor. Who knew such a thing even exists, right? Yes, of course, there is another kind of Wilms’ tumor that I heard about for the very first time yesterday that is indeed fluid-filled. Great. Of course, most kids who have this type have it from the beginning. There is no research that shows that Wilms’ tumors evolve from one type to another. But (big but here) because Austin is literally one of a kind and no one has ever before had what he has (oh, what I would give for ordinary), we can’t completely rule that out.
So . . . what to do? That is the question.
The various doctors (oncologist, radiologist, surgeon, nephrologist) all think we should just watch and wait. His kidney has always had shadows, I’m not sure if I’ve made that clear to you before. Even when we have “clear” scans, there are still shadows. That little kidney has been cut into, sliced apart, manipulated and manhandled on four separate occasions. So, yes, there are shadows on it, little swirls of gray that show up on the scan. Some of them we worry about and some we don’t. We usually watch to see if they change in any way. And this one has, albeit very subtly. It’s not dramatic at all, it’s darkened a bit and shifted position slightly so it touches the border of the kidney. The doctors agree that it’s not urgent, especially considering the potential harm of trying to definitively diagnose it. St. Jude’s will review his case again next week, so we’ll see if they have any new insight into what it might be or how to treat it.
And in the meantime, we wait. And we watch. We’ll do more scans alternated with ultrasounds. My mom asked yesterday if anyone was worried about the increasing number of scans he’s been exposed to (you know, radiation) and I said, “Wow, that seems like such a luxury, to be able to worry about some secondary cancer that might appear in twenty years.” As Jeff always says, “Let’s get to twenty years first.”
A friend sent me a poem about hope the other day. It called hope a fragile thing. And in a lot of ways, it is fragile and sometimes elusive. But it’s also surprisingly strong. And we will hold on to it as long as it will hold on to us.
And then we wait and we worry and we wish some more. But we don’t exhale with relief when the good news is delivered.
Because it’s not good news that’s delivered.
There’s another shadow. Another fucking shadow. God, this is the never-ending story. This shadow is actually inside the left kidney, which is really lousy. We don’t know what it is, of course, just that it’s there. It might be scar tissue, it might be another Wilms’ tumor or it could be a nephrogenic rest (those pre-cancerous growths he had on his left kidney back in the beginning, along with two tumors). It happens to be located exactly where the biggest of the original left side tumors was before it was removed in October 2007. So it could very well be some leftover cancer cells that have grown into something new.
We’re not in crisis mode yet. But we’re tired. We’ve been through enough and we’re so very ready to be done with this stage of our lives. But we’re not done yet. Dr. Auletta is checking with the doctor who did the needle biopsy back in March to see if he could safely do one in this location. That would be the best thing because then we would get real information and know what to do next. If we can’t do a needle biopsy, we’d have to decide whether to do a surgical biopsy which would probably destroy what remains of that kidney or to wait a few months and do another scan. We are obviously willing to give up the kidney to save the child, no doubt about it, but I don’t want to take his kidney out for no good reason. So we’ll be in a bit of a quandary if we can’t get a definitive diagnosis of what this “thing” is.
I guess the best case scenario would be to do a needle biopsy and learn that the shadow is just scar tissue. The worst case is that we lose this kidney. It’s something I’ve fought against many times before but right now, it seems like a reasonable and acceptable option. Sacrifice the kidney, rid the body of cancer, save the child. We can’t keep coming back to this terrible place, scan after scan, year after year, more maybes, more tumors–let’s just get rid of it once and for all. Of course then we start down another long road–that of dialysis and transplant.
If he’s not undergoing chemo or radiation treatment (which remains unlikely), he’d be able to do at-home dialysis. I think this is called peritoneal dialysis and he would have a little “button” or plug in his belly button that we’d hook up to a machine sitting at the foot of his bed and dialize him (that verb again) over night. The rest of his life, I think, would be pretty normal. His age is not the determining factor in when he’d be eligible for transplant; it’s how long he’s been cancer-free. Which, of course, he isn’t yet so we’re talking about at least two years of dialysis before transplant.
Ugh, god, I can’t believe we’re even thinking about these things right now. We really thought we’d have ten more years before heading down this road. But this seems to be the road we’re on. And we’ll make it.
We will make it.