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My friends, It’s been a minute. Well, more like four years and two months. I always figured I’d return to this site to either announce that my memoir of Austin’s journey was being published or that he needed a kidney transplant. But no, neither of those things is happening.

His kidney still goes strong, remarkably so. We’d always been told he’d likely need a transplant when he reached puberty, as a growth spurt with added muscle mass will cause the kidney to go into overdrive and then peter out. Well, he turned 13 in September and is definitely in puberty (trust me).

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We had an appointment with his kidney doc this past Friday and I learned that I’d been reading the most critical measure of his kidney function (estimated GFR) wrong. For years. I was really supposed to be dividing his decreasing eGFR by his increasing height (1.5 more inches and I’ll be the shortest member of my household), and when one does that, his function has remained fairly steady for a while. It has gotten worse, but only ever so slowly.

The initial prognosis remains: he is just on the cusp between Stage 3 renal failure and Stage 4, he will still need a transplant, and that could still come soon (as in “in the next two years”), but that’s a bridge we will cross when we get to it. In the meantime, he is growing, he is strong, he is athletic, he lives a normal 7th grader’s life, and — the thing that matters most — he remains.

And that book, The Wrong Side of the Window? Well, that sits somewhere on my computer waiting for the day when I will pull it out, edit it, and get it published. That day will come, I promise.

In the meantime, I’ve spent the past few years researching and writing another book, which has landed me a fabulous big wig agent in New York, and which is the real reason I’m posting today. One of the problems with nonfiction is that you have to have a “platform” in order to really attract a publisher (which has yet to happen). So, I’m doing all kinds of things to promote myself and my writing, which feels sort of obnoxious but is nonetheless necessary.

Under the Chilean Sky follows the lives of three Chileans who come of age during the heady years of Salvador Allende’s presidency, get caught up in Pinochet’s web of brutality and oppression following the military coup of September 11, 1973, and eventually end up in Cleveland Heights as political refugees.

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You may have heard a thing or two about the current unrest in Chile, which I have written about here and here. I am hoping to use the knowledge I’ve gained over the past few years to establish myself as some sort of an expert in this very complicated nation. But I need your help! I’ve been posting on Medium and my work has been recognized by the editors as being of high quality. But the only way to really get it in front of readers (who I don’t already know) is to have more readers (especially those I do know, like you!) read it, comment on it, clap for it (Medium’s equivalent of “liking”), and share it. I especially need you to follow me on the site (which I think means joining, which I’m almost positive you can do for free). My profile is here.

Medium is actually a fascinating site, filled with really good articles you wouldn’t find elsewhere. One cool feature is that readers can comment within an article (instead of waiting until the end) by hovering over a paragraph and clicking on the + symbol. This allows for a real dialogue on a specific section. I promise I’ll respond if you comment or ask a question!

I’ll also be launching my author’s website soon at http://www.krissydietrichgallagher.com where I’ll post upcoming events and other important news as it becomes available. I’ve been accepted to teach a special studies course at the Chautauqua Institution this summer entitled “Chile: From Democracy to Dictatorship and Back Again.” I don’t know which week yet, but I’d love to see your faces in my classroom!

I’m gonna have to be obnoxiously self-promoting over the course of the next year (follow me on Twitter @KCDGallagher), which I am not looking forward to. But I believe this story needs to be out in the world, we need to know what happened in Chile to real people with real hopes and dreams and fears and families, and we need to know the U.S.’s role in it.

This is a forgotten corner of history. And I want to uncover it.

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.

I’ve just finished reading My Sister’s Keeper by Jodi Picoult, an author whose books I’ve been disappointed by in the past. Not this one. It’s been out for years now and I was actually encouraged to read it by friends before Austin was even born. Then my mom read it following Austin’s first round of treatment and she encouraged me not to read it, thinking it would touch too close to home.

But I am not one to shy away from delving right into a subject, even a painful one, plus my curiosity was piqued, so I finally picked it up at the library and, well, I’m glad I did. There is something amazingly universal about parenting a sick child. It makes me really really want to get my book out there into people’s hands. Not that it’s some self-help miracle or how-to survival guide. But just that I know it will connect with readers, those with sick children and those without. It humanizes an experience that can be so terrifying and overwhelming that most people would rather just push it out of the way and ignore it. These kind of stories (my true one and Picoult’s made-up one) force people on the outside to see and feel what it’s like on the inside, and I think that’s a good thing. It gives us all a sense of empathy and understanding that wouldn’t otherwise exist.

My Sister’s Keeper is a fictionalized account of a teenage girl who’s had a rare form of leukemia for most of her life. It focuses in large part on her younger sister, who was specifically conceived to be a genetic match in order to donate cord blood and then bone marrow and eventually, as the book opens, a kidney, in order to save to her older sister’s life. (In reality, even a perfectly matched sibling cannot donate a kidney under the age of 16.)

The book jumps back and forth between the points of view of both parents, the healthy sister, the older brother and a few other characters. This is hard to do well, but it is done very very well in this instance. I was struck by the fact that when I was reading anyone else’s point of view, I strongly disliked the mother — she was blinded by the task of saving her one daughter, at the expense of her other children, herself and her marriage. She was overpowering and single-minded and, well, not very likable. But when I was reading her parts, I got her completely. I agreed with everything she felt and most of what she did.

Which is sort of scary, because she made a lot of really obvious mistakes, like completely ignoring the needs and desires of her other kids. She could not see beyond each immediate health crisis and I think the book serves as a serious warning to parents against such a narrow-minded approach to anything.

But, still, I get these parents. They are us and we are them, in so many ways. When faced with yet another pending crisis: “And yet — like always — you figure it out; you manage to deal. The human capacity for burden is like bamboo — far more flexible than you’d ever believe at first glance.”

And this one, as they’re slowly (or quickly, as it turns out) realizing that their daughter has relapsed: “It takes only thirty seconds to realize that you will be canceling all your plans, erasing whatever you had been cocky enough to schedule on your calendar. It takes sixty seconds to understand that even if you’d been fooled into thinking so, you do not have an ordinary life.” Sixty seconds, and, whoosh, you do not have an ordinary life. No matter how badly you want it.

And in one of the many moments when their daughter is on the verge of death and the husband, like Mark has done with me, tries to gently but firmly prepare the wife for what he sees as inevitable. And she says, “She isn’t going to die,” and he says, “Yes, she is. She is dying,”  and the wife responds simply, “But I love her.” Like that’s enough. Like that one little reason, the thing that drives us all in almost every decision we make — how much we love our children — matters at all. It doesn’t matter, not a bit. It is completely irrelevant.

I read these books and I give myself over to them. I feel at once so relieved not to be those parents and so sorry that I am those parents. We are them, even when we don’t want to be. Different outcome (hopefully a better one), different parenting style (hopefully a better one), but we are all the same. We all just want to save our children. Because we love them.

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.

Austin is not in renal failure. No, that’s not some miraculous reversal of the past few days’ news; I just wanted to make sure you all understood that it hasn’t happened yet. All of this action we’re taking is designed to prolong the life of that remaining half-kidney as long as possible. The slow decline has indeed begun but we want it to be a good long while before the final withering away.

Remember that he won’t be eligible for a kidney transplant until he is cancer-free for two years. And we haven’t declared him cancer-free yet so those two years haven’t even begun. The immuno-suppressant drugs transplant recipients have to take can cause malignancies to grow so there is absolutely no way around that hard-and-fast rule.

So, we’ve increased his blood pressure medicine. And he’s hooked to IV fluids for eight hours overnight, with a little pump lying next to him in bed. It took a home care nurse to wisely suggest to my stressed out mind that I turn it on right before I go to bed (instead of when Austin goes to bed), thereby eliminating a 4 am finish. Brilliant. And we’re going to stick to this diet to the best of our ability, knowing that some slip-ups now and then will not be the end of the world. It’s not like the constant on-your-toes watchfulness of parents whose children have fatal allergies and can’t withstand even a crumb (or sometimes a whiff) of peanut or milk or what-have-you. If he has some cheese, well, then he’s a happier boy. Plus I learned from one of the kidney docs yesterday that he can take a chewable Tums before each meal which will bind the phosphorous (the dreaded ingredient in both dairy and soy) so it doesn’t seep into his bloodstream and then he’ll just poop it out. Perfect.

So, I’m feeling a little better. One thing I noticed after yesterday’s post is the arc that my writing often takes. I start off down, complaining about the latest medical misery to befall us, but as I near the end I am cognizant of not closing on too gloomy a note. I don’t want to leave you all feeling helpless and hopeless and so I force myself to find the shred of good and to focus on it and to give you some hope. And in doing that, I give myself some hope.

It’s another variation of this post, but it’s more internal. I write that we’ll be okay and then I believe that we’ll be okay. My fingers type the words of all we have to hope for and suddenly I’m reminded of all we have to hope for. So you see, you are more a part of this than you know. I am writing for myself, no doubt, but I am writing for you too and that shapes the arc of what I say or how I say it. You may feel that you’re not doing anything out there, just reading all alone at your computer each night and feeling sorry for us, but you are. It’s more powerful when we hope together.

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.

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