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Austin will have an MRI on Thursday afternoon.  It took some juggling to get this scheduled because we were initially hoping for a morning slot, since he can’t eat before being sedated. But the next available morning slot was on May 31 and none of us (neither Mark and I, nor Austin’s doctors) were comfortable waiting that long. Turns out he can have clear liquids until noon and, lucky boy, popsicles count as a “clear liquid,” so the snack at school that day is settled and I’m not dreading the slow ticking by of the hours that morning.

We’ll see his oncologist after the scan and I imagine we’ll have some results to discuss before we leave that day. But it’s important to note that we don’t expect to get either good news or bad news out of Thursday. We simply expect to get more information. I know, now you’re all going, “Whhhhaaaaaattttt??” But here’s the deal: the MRI cannot tell us if what’s inside him is cancer. It also can’t tell us if it’s not cancer. The purpose is solely to get a good, clear image of the “thing,” its size and, especially, its location.  We may be able to see if it’s filled with fluid or not (both of which could be Wilms tumor, so that isn’t terribly relevant either). Barring some bizarre turn of events, like if the thing has doubled in size since last Monday (which would obviously be very very bad) or if it has disappeared completely (which would be good, but confusing), we hope to walk away from Thursday with enough information to help us determine what to do next.

If we want to know definitively what the thing is — and, as of this moment at least, we most certainly do — then we have to biopsy it.  The MRI will let us know if the radiologist can attempt a needle biopsy instead of having to do a surgical biopsy. If the thing is located in a spot that’s easy to reach with a needle, without having to go through too many other tissues or organs or what-have-you, then that will be considered good news.  If it’s not reachable, then we’ll have to decide whether we move ahead and do a surgical biopsy, which is the more aggressive approach because it poses many risks to the kidney and his insides, due to the excessive amount of scar tissue they’d have to cut through to get there. Or if we take the dramatically less aggressive approach and “watch and wait,” by doing repeat scans more frequently to monitor the “thing,” without taking any action until it grows or changes.

It’s confusing, I know (as so much of this has been), but the MRI is really just a first step toward what will ultimately be either good news or bad news. Like we’ve done so many times before, this is a take-one-tiny-inch-at-a-time kind of deal.  One tiny inch is about all I can handle right now.

I know that every time this happens, there are a zillion questions running through everyone’s minds that send you all scrambling through the blog archives and even to other online sources. “But wait, … what about that time three years ago when …?” I noticed on my Stats page yesterday that someone was directed to my blog after  searching the words “3rd relapse Wilms cancer.” At first, I thought, “Huh, how ironic,” but then it occurred to me that it might have been one of you out there looking for reassuring information.

Well, you won’t get it. I just typed the same words into my search engine to see what would appear and it’s all old articles I’ve read before, some many times over, one from 1987 with (hopefully!) outdated data. The survival stats according to those studies fall in the 30 to 40% range … and that’s for the first relapse. Nobody really mentions another relapse and nobody seems to be talking about bilateral Wilms or what was once rhabdomyomatous Wilms or any of the other variations that make Austin’s case so ridiculously one of a kind. So, we’re just going to ignore all those and go with what we know about this specific child at this particular moment.

We know that, for all intents and purposes, Austin is well. His labs are steady, which means his body is not under assault and whatever may be in there right now isn’t causing any measurable harm. And he certainly, without a doubt in anyone’s mind, seems well. And that is worth something, both psychologically for all of us but also diagnostically.

We also know that the “thing” they’re seeing on the ultrasound is 1.4 centimeters in size and of an ill-defined shape. The radiologist went back to the two previous scans and, while he can’t rule out with 100% accuracy that it wasn’t there before, he did not and can not see it on any images prior to Monday’s. The official report labels it “new,” which is always bad, but they also say it’s “nonspecific,” and that an “underlying lesion cannot be excluded.” In other words, “We see something in here we haven’t seen before. We can’t tell what it is but we can’t rule out that it’s not a tumor.” Further imagining is recommended.

That’s all we’ve got. But we also have history. We’ve been down this road before, where we see something and can’t define it. First, in December 2008, we began to watch a “something” on his scans which we then biopsied in March 2009 and discovered was cancer. That was removed in April 2009 and turned out to be “old cancer,” all of which coincided with the launch of this blog. Then in October of 2009, we again began to watch another “something.” This was the one that we followed, on pins and needles, throughout that fall, finally deciding to ignore in November, before it doubled in size (“You will not ignore me,” it seemed to be saying) and turned out to be relapsed cancer in December. (Consider yourself warned before you go back and read all those linked posts because, oh my, they contain a lot of drama and a lot more f-bombs.)

Those are really the only “somethings” we’ve watched, except for the “something” in his liver (good god, what a stupid word, something something something). That something did appear on Monday’s ultrasound, unchanged in almost two years. The doctors have contented themselves with the fact that this thing never grows or moves, but will be happy to get a better look at it during the MRI. I consider that thing somewhat different because, 1) it’s in the liver, not the kidney and 2) it’s been there for a good long time without doing any harm.

So, that’s what we have and that’s where we are. I personally feel better today. Not for any specific reason, but just because it’s less raw than it was twenty-four hours ago. We carry on as we always have, because, you know, that’s what we do. Braedan had baseball last night and Austin swung across the monkey bars nearly the whole time. Then we took the troops to Sweetie Fry for treats and didn’t get to bed until well past 9. The boys both know that there is something there that might be cancer, but neither has much wanted to talk about it.  Austin did say the first night, “But I don’t want to have cancer again,” and, oh, if it were only as simple as what we want and don’t want. Since then he tells me to “Shut up” with a slight smirk on his face every time I mention it, so I’m backing off.  Braedan has sporadic questions but will only talk about it on his own terms and his own timing and otherwise sticks his nose in a book and carefully ignores the conversations going on around him. Oh, the child psychology of all this is sadly fascinating.

We have read and listened to all of your very lovely messages and, as always, they bring us strength and comfort. I am not in the mood for returning all your calls and will simply see and speak to each of you as time goes on. We do deeply appreciate the small acts of kindness directed our way (the boys were especially thrilled with the surprise delivery of Dunkin’ Donuts this morning, Ruppes!).  And it did not go unnoticed that all the kids at Austin’s preschool wore their St Baldrick’s shirts yesterday. As I said before, the many offers will be accepted over time, especially if we end up with two-plus years of dialysis.

Oh, that brings up another joyless question I’ve heard too many times in the past three days: If he does indeed lose this kidney, when could he receive a transplant? Well, if this is truly cancer, then the “two-years cancer-free” clock is reset. And it wouldn’t start ticking down until he was completely finished with whatever treatment (chemo or radiation) he might first require. So we’d likely be looking at two-and-a-half years of every other day dialysis. But you know I can’t quite bear to think of that right now. For those of you who have made the ultimate offer — one of your kidneys — I  say (I mean, I shout while jumping up and down), “Yes, yes, thank you very much,” but we can’t even begin the pre-match testing until we’re much much closer to transplant. So just stay healthy and don’t disappear from the online universe.  I will be calling!

The fascinating thing about that last day of chemo a year (and two days) ago was that we didn’t know it was our last.

I remember the day pretty well and I mentioned it in this post. You can see that I never said anything that sounded triumphant or victorious, I never used the words “relief” or “finally,” there was no mention of celebration. We finished on time (and celebrated that small victory), kindly waved to the nurses as they buzzed us out the door, and shouted out a cheery, “See you soon!”

But we didn’t see them soon. Austin spent the next few weeks in the outpatient clinic receiving platelets and blood transfusions, while Mark and I spent the next few weeks researching obscure medical journals, weighing our pros and cons (with the cons always heavily outweighing the pros) and trying trying trying to settle on the right choice.

The right choice eventually found us, thanks to some timely emails from prominent Wilms tumor doctors across the country, and chemo was over without us ever having celebrated that last day. There was no victory lap around the oncology hall, no clapping and cheering from the beloved nurses as Austin completed yet another round. It was instead an ordinary day. We walked out of those hospital doors and, unknowingly, began our ordinary life again.

There’s a victory lap in that.

Yesterday went mostly well. “Mostly” because there’s never been a time we’ve had scans when the response is simply, “Perfect, great, everything’s just ducky.  Go on your way now, you healthy normal people.” No, not quite that.

First, he had the follow-up with the radiation oncologist which was fine (actually a lot like what I said above). Then the abdominal ultrasound which lasted a good two hours including the long wait time between being seen by the technician and being seen by the actual doctor (I’ve never really understood why they bother with the technician at all if the doctor just has to come and do it all over again, but anyway . . .). There is nothing new in the kidney, which is obviously good news. But there is a spot in the liver. Now, don’t freak out, it’s not a tumor. Or at least we don’t think it’s a tumor.

It’s more blob-like, where tumors tend to be round (heard that one before, right?). The radiologist thinks it’s most likely “fatty infiltration of the liver with focal fatty sparing” which makes the spot. Whaaattt? I can’t explain it any better than that but it’s not anything to be alarmed about, a not dangerous and not uncommon side effect of chemo. But of course, we can’t be positive that’s what it is based on ultrasound alone.

Which brings us to the never-ending and always tricky question of what to do next. The least invasive way to find out what it is is to do an MRI. Unfortunately, Austin can’t have an MRI with a GFR under 30, nor can he have a CT scan with contrast. There’s a liver function test he could have but it would expose him to a lot of radiation, something we maxed out long ago. Then there’s the possibility of accessing it with a needle biopsy, which comes with all sorts of risks of its own.

When I discussed these options with Austin’s oncologist yesterday afternoon, we still hadn’t done the chest CT (which involves no contrast allowing Austin to still get it). Our first order of business was to make sure there were no suspicious spots or blobs in his lungs. If there were, that would be a huge sign that cancer had indeed spread. Well, luckily, I learned by 6pm that his chest CT was clear. That put us at greater ease about the liver because when Wilms spreads it usually appears first in one lung, then the other lung and only finally in the liver.

Ultimately, our oncologist recommended that we simply wait and re-image in another month. There are a whole bunch of reasons this option makes the most sense: One, it’s probably nothing. Two, all the methods of determining what it is pose risks to Austin. Three, if it actually is Wilms that’s spread to the liver, there’s not much we can do about it. Really, that’s the kicker right there. I mean, in a sick kind of way, what’s the point of us having that information? What am I gonna do with it? I suppose I could pull the kids out of school and make sure they see all the beautiful places of the world. I could take Austin to Disney World for his 4th birthday. I could work extra hard to ensure each day had more laughter than tears.

But I do all that already. I already take them swimming every time it’s hot or say yes to the after-dinner bike ride to the duck pond or park. I’m already thinking about taking him to Disney World for his 4th birthday. I already work extra hard to outweigh the daily scowls with smiles. Life seems short and fragile enough, no matter what a needle biopsy says.

As I was on the phone going over all this with the oncologist, he said that they just got a new computer system that generates data in a different way. As he was scrolling through Austin’s record, he could see a graph that showed that Austin has been treated for cancer in thirty-three out of the past thirty-six months. This struck him and, while it didn’t make his decision for him, it did make him wonder about how much he can do for a patient versus how much he can do to a patient.

Mark and I have learned, in these three long years, and Austin’s doctor has learned too, to make decisions for Austin. And I don’t mean to make them on his behalf. I mean to make them for his own good.

One of the things I like about WordPress is that it tells me how readers found my blog. When I view my “Stats” page, there’s a list that shows the words people entered into their search engines that led them here.

Many people are searching specifically for me and this story; they’ll type in words like “Krissy Dietrich,” “Krissy Gallagher,” “Krissy Dietrich Gallagher” (with every imaginable spelling) or they’ll search for “little boy on the news with Wilms” or “Rainbow letter Austin Wilms.”

Then there are all sorts of people who find me by accident, such as the almost daily hits I get from those searching for “Kraftmaid warehouse” or “dark kitchen cabinets” or “pictures of mudroom.” Luckily they get directed to the specific appropriate posts or they’d wonder what one earth they’d gotten themselves into!

My most-visited blog post of all time is one I titled “Kissing Your Best Friend.” It actually has nothing at all to do with kissing anyone let alone a friend. It was simply my way of describing the vulnerability I felt upon sharing my query letters with my readers. But, oh my god, that post has been hit constantly for more than a year now. The searches vary from the not too surprising: “What should I do now that I’ve kissed my best friend?” and “got drunk and kissed my friend” (often on a Saturday or Sunday morning) to the shocking (and especially shocking because of the sheer number of times I’ve seen it): “Mother kisses son’s best friend.” Many many times, people. Way more times than should be representative of the number of mothers kissing their sons’ friends. And I’ve even seen searches from the mothers themselves, as in “I kissed my son’s friend,” and I can’t help but think “Really? And you’re seeking answers online? You gotta look a lot farther than Google to solve that one, honey.”

Maybe if I really wanted to drum up visitors to my blog, I would come up with racy titles for all my posts. Or I could just stick strings of timely keywords in my tags like “Megan Fox beach photos” or “Lindsey Lohan jail time.” (I just checked MSN for their hottest searches — I don’t have time to be that hip to the latest celebrity gossip.)

But then there are the medical ones, which I get every single day.  I can just see these people sitting alone at their computers typing scary and foreign words into search engines: can a child get chemo while on dialysis?, what does it mean when a doctor sees a “shadow” on your kidney?, pictures of PICC line, PICC line versus Broviac versus Mediport, cystic kidney lesions, “jump start” a kidney, kidney donors and cancer risk, and the one I got just last week that really struck home:why wilms’ tumor not going down in size. “Why wilms’ tumor not going down in size.” Oh, why indeed.

They go on and on, day in and day out. New people starting this terrifying journey, seeking some answers, some insight, some comfort from the box of wires on their desk. I wish I could climb into my computer and follow the lines back to them. I wish I could sit down next to them and hold their hands and share any small bit of knowledge I’ve gained along the way.

But I have no way of locating them, no reverse search option. I can only hope they get something useful from me; that they leave breathing easier and not doubly terrified. That they find that comfort from the box of wires on their desk.

I’ve gotten a couple of questions over and over lately from some of you who are putting a lot of thought into this issue. My answers, of course, are anything but clear-cut. The first is that we really have no idea how likely this cancer is to return. If we looked only at the study protocol we’ve been following, half of the children had a second recurrence (which, not to confuse you, means a third time). But, like I’ve all too often, Austin doesn’t fit neatly into any of the categories of children in that study.

The main reason is that Austin’s initial tumors, on both sides, had that rare rhabdomyomatous differentiation. This is significant in terms of his future prospects mostly because his initial cancer was resistant to chemo and therefore, the fact that it recurred once doesn’t necessarily mean that it beat chemo — which is what makes recurred cancer so much more deadly in the first place. Think about this: if you treat cancer cells with the deadliest weapon known to doctors (chemo) and instead of being destroyed, they instead go into hiding before sneaking back out again, that means they’re pretty darn tough cancer cells. But if you knew that chemo wouldn’t work on them anyway (or would only work on 20% of them as was the case with Austin), and then they returned, it’s a whole different ball game. The cells didn’t actually beat the chemo, they just didn’t respond to it.

Add to that the fact that his most recent cancer was not rhabdomyomatous at all but instead a regular old Wilms tumor and things get even murkier. Did it morph? Was it maybe smarter than the chemo and it somehow changed over time? Or, because we were watching it so closely and frequently in those months and actually saw it grow over that two week period and then quickly swooped in and removed it, did we just catch it so early that it hadn’t yet had the chance to evolve from a classic Wilms into a rhabdomyomatous Wilms?

I know, blah blah blah, I’m sure I’ve lost a lot of you with that damn “r” word again. The important thing to glean from this is that Austin’s recurrence doesn’t mean the same thing as some other child’s recurrence.  Unfortunately, what it does mean remains unknown to all of us. Quite frankly, we don’t know whether his chances are made better or worse thanks to his unique situation.

Which brings us to the other major question I’ve heard and that is, how likely is this cancer to spread if it does return? A very important question because if it never spreads, then taking the kidney out preemptively isn’t even necessary. Why not just roll the dice, hope for the best and then if (if!) some small shadow appears on a scan down the road, we remove the kidney then? If it’s not gonna spread anyway, we just scoop out the whole kidney (“whole kidney”? ha!), tumor and all, and start dialysis then, when we must. One problem with this is that it resets the clock and we then have a full twenty-four months before transplant (as opposed to, say, twenty months if we remove the kidney electively in August). The bigger problem is the danger of the cancer spreading. If we leave the kidney in and cancer returns and then spreads beyond it to Austin’s liver or lungs, then we’re in real trouble. Like, you know, real trouble.

Which brings us back again to the rhabdomyomatous question. That variant is highly UNlikely to spread (and Austin’s certainly never has), whereas classic Wilms is more likely to spread. So, like I just asked, was his most recent cancer really classic Wilms or would it too have morphed into a rhabdomyomatous tumor over time?

I know, your head is hurting now. Imagine how mine feels.

So this brings us back to our current — and ongoing — predicament about what to do next. So many of you have expressed what a terrible position this is for me and Mark to be in, how horrible and unfair it seems to place this sort of responsibility in the hands of parents. And in many ways, I agree: I hate the choice we have in front of us.

But I also believe that we are the best ones to make it. In the absence of clear medical and scientific information, no doctor has the answer right now. They have opinions and recommendations, but they don’t know what the right choice is. And neither does Mark. And neither do I.

But we do know Austin. And we know, beyond a shadow of a doubt, that no matter what we do, we will do it with Austin’s best interests at heart. We are his parents. No one on earth could handle this decision more carefully than we will. No one on earth could care more about its outcome than we do.

So who better to make this decision than us? In whose hands could his fate possibly be more secure than ours?

Mark and I went to the Rainbow Babies & Children’s Gala this past Saturday and while we were there, I bumped into a mother I had met on the floor during Austin’s first round of cancer. Her daughter also had Wilms but was diagnosed at a much older age, which is unusual for this disease which tends to strike kids under five, and it had already spread to her lungs.

I remember the day we met: A friend of mine who happened to work at the hospital back then introduced us, thinking we might want to talk since our kids had the same cancer. Well, it might have been the same but our circumstances couldn’t have been more different. We stood awkwardly in our doorway while Austin, having just celebrated his first birthday but not yet walking, crawled around on the floor and her daughter, eleven at the time, walked dizzily about the halls under a cloud of chemo.

We didn’t really have that much to say to each other that first time, both being so caught up in our own insular worlds, so we wished each other well and let it go. But we sure had a lot to say to each other on Saturday, as we stood on the ramp to the bathroom and shooed women past us so we could talk, talk, talk.

Her daughter passed away last summer, which I knew before I saw her so there was no awful moment of truth. But she was okay, this woman, she was doing well. I mean, I trust she has had horrible times and I don’t doubt that she misses her daughter every second of every day. But, even with all of that, she was fine.

Which I found enormously refreshing.

There were no tears between us as we stood there and shared our stories and expressed our sorrow for all the other has endured. We have both had terrible experiences (her’s obviously more terrible than mine), and yet we are both okay.

I am sure that some people would have looked at her that night, all dressed up and cheery, bidding on auction items with one hand and holding a glass of wine in the other, and thought she was faking it or somehow hiding her deep grief. As I am sure that some people look at me and think, “She can’t really be that okay; she must be putting up a  front and breaking down behind closed doors.” But it’s not like that. You simply learn to adapt, a child with cancer becomes another (albeit overpowering) part of your life, and you take the horrible and mix it in with the wonderful  and you find a way to live no matter what befalls you. You just keep going. Not only because you have to (which you do), but because you want to.

So there we stood in line at the bathroom, two mothers of children with cancer, one gone, one still fighting. We hugged and we smiled and we even laughed. But we never cried.

Because we are both okay.

I know, you’ve been waiting for some big revelation or major announcement after yesterday’s meeting. Well, we’re mulling. No decision yet. Although I will tell you that both of us walked in there leaning towards stopping chemo and both of us walked out leaning towards continuing.

It’s not what we want, of course. More than anything we want to do next week’s chemo and then celebrate being done, empty that marble jar and throw a little party. We want to enjoy our summer free from medicine and hospital stays and transfusions and PICC lines that can’t get wet. We want to pat ourselves on the back, and feel accomplished and confident that we did everything we needed to.

But if we stop now, it would feel more like quitting and I think we’d just be nervous, more nervous than we will be anyway, that what we did just wasn’t enough.

The data supports continuing on with one more twelve-week cycle. Of course, there’s no one quite like Austin in any of the studies, but most children with relapsed Wilms do at least two cycles and the protocol, as you know, recommends six of them. We know we’re not doing six, there’s no way, or even five or four or three. But two seems reasonable and doable, as awful as it may be.

Austin’s nephrologist basically told us to leave the kidney out of the equation. Which is hard to do since that poor little beat-up kidney is at the forefront of almost every decision I make. She said there’s no way for them (or certainly us!) to accurately predict how long it will last or what it will take for it to either recover or wither away. She believes that the “amazing recovery” it showed after December’s surgery was probably a honeymoon period and the recent deterioration is more likely due to surgical trauma (and maybe radiation) than to chemo anyway. It could be finding its new set point and then just sit there, for years even, just chugging along. Or not. But, according to her, chemo will not be to blame either way. She reiterated, in a less direct way, what we’ve heard many times from Austin’s oncologist: that there’s no point in having a kidney without a kid to use it.

A harsh truth, but a truth nonetheless.

Of course, the other truth is that we may have no say in this either way. If Austin’s bone marrow is indeed depleting, as his recent platelet troubles would indicate, we may have to stop chemo anyway.  If recovery between doses takes more than six weeks, then chemo is rendered much less effective and treatment is often halted. We’re not there yet, and may never be, but it is indeed a possibility.

So, we will continue mulling. There’s no rush, no deadline for deciding. We’re awaiting some more detailed numbers from one of the protocol’s authors (the Wilms tumor guru at St. Jude’s we’ve been consulting with all along) with specific outcomes for kids depending on the number of cycles they completed. The plan has shifted and changed many times already and no doubt it will shift and change many times before we’re through.

But for right now, at this moment, it looks like we’re halfway there. Fifteen weeks done out of thirty. Huh. It’s been a long slog already. I’m sorta feeling my glass half empty right now.

The death of your child follows you everywhere you go, hovering in your blindspot. That’s how Lorrie Moore describes parenting a child with cancer in People Like That Are The Only People Here. In your blindspot: just out of reach, never in focus, but there.

So you move along, heading for that sacred destination (cure, survival) and on good days, you get into a groove, lulled into a feeling of comfort, of certainty even (certain that this child will be okay, this child will escape the worst fate). But then, for whatever reason, you reposition yourself and glance over your shoulder and there it is.

Just lingering, hovering. If you try to really look it in the face, try to grab it and shake it and tell it to leave you the hell alone, it would disappear. It’s unreachable, ungrabbable. But there.

Wilms’ tumor is one of the big success stories of pediatric cancer. But that’s because it’s relatively easy to beat the first time around. Once it makes it past that first round, once it survives the initial onslaught . . . well, then it’s not so easy to beat.

We don’t put much weight in survival statistics these days. Of course, there are no accurate numbers for a kid like Austin; he doesn’t fall neatly into any pre-existing category. When we pore over the research with his doctors, we inevitably say, “Well, he’s a little bit like this and a little bit like that,” and “Oh, this case looks like his except for (insert major event here).” So we really have no guidepost, no reliable map to follow.

But if we were forced to give a number, if we had to choose some random survival statistic, it would surely fall below the 50% mark. Which is partly why we don’t put much weight in survival statistics these days. Austin has always fallen outside of the range of normal. Since Day One, nothing about his cancer has been textbook. So we buck up and figure this won’t be textbook either; he’ll just continue beating the odds because that’s how he does it.

The treatment plan we’re following is a full-court press. We’re going whole hog, guns blazing, no holds barred, enter whatever metaphor you’d like to say we’re doing every damn thing we can. When I said in an earlier post that this plan “just might work,” I was wrong. It must work, it has to work.

It’s all we’ve got.

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.

August 2020


August 2020