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Mark said that it took him about ten days before the bad news about Austin really sunk in and he could fully grasp the possibility of what lay ahead. Now it’s taken him another ten days for the good news about Austin to truly sink in so he can fully grasp the possibilities that lie ahead.

It is a fascinating process, how your mind can so quickly and completely adapt from one reality to the next. I was so there — in that worst place — so quickly, already figuring out the weekly schedule for dialysis, planning the activities we’d engage in for those four hour stretches. My mom was too — she had a mental list of books they’d read together and games they’d play. Mark and I discussed getting a Lego table that could fit nicely on Austin’s lap so he could contentedly build while his blood was being removed and cleaned by the machine whirring next to him. It’s a classic example of Whoosh … one minute your life is normal, the next it isn’t. And the next, it is again.

We’re still adjusting mentally. Still feeling a jolt of relief and giddiness when we remember some summer plan that we’d canceled in our minds. I feel like we’ve come back from the dead. Like a scene from a movie or book when a beloved character dies and you’re left there thinking, “No! This can’t be . . .” and then lo and behold, the heart monitor jerks back to life after flatlining or the hero rushes in with the magic serum or the character claws their way out of the shallow grave and voila! All is better. And you, as reader or viewer, are both thrilled and also disbelieving — “Oh, come on! As if that could actually happen”

But it actually happened.

There were a few reasons the possibility of cancer seemed so bad this time. I think, for one, it was simply that we’d gotten so close to our goal, just inches away from the finish line, almost touching the two-year trophy before it was ripped from our hands. It somehow seems like it might have been easier if it had happened at the 18-month or 21-month marks, like not such a tease.

There was also this terrible reality hovering in the back of our minds, which neither of us wanted to voice aloud, that we were somehow responsible. That our decision two years ago to keep his kidney was wrong and now we had to do it all again. Mark and I both said back in 2010 that we would take whatever consequences came our way. And of course, we knew in our heads what those consequences were. But that doesn’t make it any easier when they actually occur. I couldn’t help but think that we’d be almost done by now if we had taken the kidney. His two years of dialysis would be coming to an end and we’d be spending this summer dealing with his transplant — lots of time in the hospital, absurd amounts of daily medications, worry and more worry. But we’d still feel like we’d accomplished something. So I was left wondering if it would be worse for him to have dialysis now that he was older, now that he’d be missing so much “real” school (I would have had to pick him up at 11:30 three days a week). With all the new friends he’d be meeting for the first time, he’d be known as the sick kid, the one who never feels well, who misses all the fun stuff. How long would that identity have stuck with him before he could replace that image in the minds of his peers with the strong, vibrant child we all know?

And then, of course, the big one: the intense and overwhelming fear that this was it. I mean, how many times can you beat the same cancer? We’d done radiation and chemo and surgeries and it just kept coming back. How smart is it? How powerful? Back in December 2009, when we were trying to determine a plan of action to treat that relapse, Mark and I asked our oncologist what chemo drugs would be available in the future if the three we used for those six months didn’t work. (You don’t give the same drugs for more than one protocol; Austin had three drugs during his first eight months of chemo and then three completely different drugs during his last six months of chemo.) The response? “Palliative chemo.” Uuuuummmmm, okay, I know what that means: “Cure” is no longer the goal, palliative chemo is simply about reliving symptoms and prolonging life . . . by a little bit. A few extra months. So, cancer again would not have been good. To say the least.

But now I’m dwelling and I don’t need to. We’ve come back from the brink, no longer dangling over the edge of the cliff. I feel a thorough and deep sense of calm, like nothing really matters beyond my two healthy children bouncing on the trampoline and my pretty awesome husband mowing the lawn.

I must be the luckiest.

Interestingly, Austin’s creatinine (one of the key kidney numbers we wait for each week when we get his labs done) has been slowly going down. Which is good. It means that his kidney function is, if not returning to normal, at least improving.

Of course, for us, this makes any future decision even more difficult. I mean, it’s considerably easier to justify removing a kidney that looks bound to fail, that’s hanging on by a mere thread and about to die off on its own anyway. It’s another story altogether to take out an organ that seems to be doing just fine — or, in Austin’s case, fine enough.

It’s not a huge jump or anything, and is still in the too-high range, but much closer to normal than it was three weeks ago, or than it’s been for the past few months. This is no guarantee of anything so we’ll just watch and see if this trend continues. His potassium and phosphorous levels have also been “great” (doctor’s words) which means that we are doing a good (enough) job with his diet. That comes as huge relief to me as the primary feeder of my children since this diet has been nothing but a source of stress and frustration.

But other than that, we are simply enjoying our summer: hanging out with friends, swimming — at least daily, if not twice daily — in the pool, picking mulberries from a tree at Braedan’s school and making them into waffles and pancakes. Although we certainly think about Austin’s kidney and although I certainly write about it, we are content not making any decision for a while.  Someone asked the other day what would finally change, how we would go from our current wavering to a steadfast choice. Mark’s reply was that it’s simply a matter of time. Now is not the time for making that decision. Now is the time for resting and relaxing and recovering. When the time for the decision comes, we’ll just make it.

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?

It’s not all fireworks and ice cream cones around here, you know. Austin’s health, current and future, continues to be paramount in our minds and in our lives.

At his appointment last week, his oncologist said that as long as his renal numbers remain fairly steady, we could go two weeks before our next visit. That seemed like a huge vacation — two full weeks with no trips to the hospital! We haven’t had such a significant break since last November. Well, lo and behold, his creatinine was the same as it’s been for several months but his phosphorous level was up enough to warrant a visit to the nephrologist today. She did a series of labs to check for many of the complications that befall patients with chronic kidney failure, like brittle bone disease (caused in part by excess phosphorous in the blood). And, of course, because she switched him to a new blood pressure medication, we’re due back next Wednesday for another visit.

Then there’s that pesky issue of what to do about Austin’s kidney, which we have yet to resolve. We go through periods where we feel fairly certain that we’ll remove it at the end of the summer, and then we think of a zillion reasons why we shouldn’t.

In terms of his general health (not counting that small issue of his cancer returning), he is much better off now than he would be on dialysis. I forget if I explained that the GFR score is equivalent to percentage of kidney function, but we can basically say that right now Austin’s kidney is functioning at between 25 and 30% of full kidney capacity. Dialysis only replaces about 11% of kidney function (yeah, how’s that for bad news? All that hassle for 11%?), which is why patients with regular kidney disease don’t start dialysis until they have a GFR below 15. So you can see that in that regard, he is much better off as is, chugging along with his defective partial kidney, than with no kidney at all.

It’s a pretty significant distinction after all.  Here’s a child, in his prime years of physical, emotional and academic development, with a major organ functioning at thirty percent versus ten percent. Removing that kidney has implications across the board for him and his longterm health. Not good implications either.

Except for the one good thing that can come out of it. Except for the flipside of our constant dilemma: What if there are tiny invisible cancer cells lying in wait inside that precious kidney? And what if, given this current reprieve from chemo and radiation, they gain strength and gather together, forming a new army ready to wage war on his small body yet again? What if we wait one month, one week, one day too long before making this critical decision? What then?

So we fill our days with ice cream and fireworks, big underdog pushes on the tire swing and extra chapters of the latest favorite (The Trumpet of the Swan) at bedtime. It hovers there, our reality, even when we’re dancing in the crowd to raggae music, Austin spinning in circles around us to the beat of Carlos Jones.  Our reality remains. But while Mark and I can not escape the weight of this decision, our children can.

I could get used to this.  Days that feel long and lazy like the middle of August.  Barbeques and family cookouts and marshmellows roasting over the open fire. Hospital visits that happen only once a week.  Reserving rooms for actual weekends away and getting pool passes that will actually be used.

Yeah, I could get used to this.

Of course, the weight of the world still sits on our shoulders, a decision looming near with consequences that could last forever. But for right now, for this long weekend, for yesterday and today and tomorrow, we are letting the kids be kids and just sitting back and enjoying it all.

Austin has recovered over the past ten days in ways we didn’t even know he needed to. Despite the fact that he’s been happy and energetic all along, he is suddenly that much more happy and energetic, bounding about with a fine fuzz of hair growing on his head. We are counting down the days until the removal of his PICC line, which will happen this Thursday after another eight-hour blood transfusion. He has plans to go swimming the very next day (if not that very day) in my parents’ pool even though I don’t yet know how long a “recovery” period the docs will insist upon.

Mark and I continue to go back and forth between keeping the kidney until it completely peters out and removing it preemptively. Well, no, Mark continues to sit squarely in the middle while I continue to thoroughly endorse one choice one day and the opposite the next. (Typical behavior for both of us.) We return over and over to “First, do no harm.” And while removing the kidney might (might) be safest in the long run, it will no doubt (no doubt) do harm.

There are so many little (and not so little) side effects that trip me up.  Kidneys are necessary for growth and children on dialysis do not grow much, if at all, which I find very upsetting. I mean, we’re talking about the years between four and six — that’s some important growing time! Of course, he ought to experience some “catch up” growth in the years after transplant but that won’t make up for all of it.  The sheer number of medications he would be dependent on for the rest of his life is another barrier for me. I hate the idea of pumping his body full of drugs day in and day out that will impact every aspect of his development. The anti-rejection drugs cause, among other things, early osteoporosis and brittle bone disease (come on, can you imagine Austin with brittle bone disease? He’ll spend his life in a body cast!). They cause high blood pressure too, something we’d been hoping we’d be able to fix before it took too huge a toll on his overall health. Steroids and antibiotics and human growth hormone and the list goes on and on and on.

But then we look at the other side, the other possible outcome and we think. “Sure, bring on the drugs. We’ll trade taking 42 medications each day to keep our bright boy.” We’ll trade anything, we know that; that part is not up for debate. It’s the big “What if” that we constantly debate: What if we’ve already done it? What if we’ve already rid his body of his cancer and taking that kidney out would only harm him? I mean, what did we do the last five months of chemo and radiation for if not to get rid of the cancer?

Ugh! No easy answer. But here are the things that lull me into my happy-mommy, I-love-summer mood:

My beautiful boys squealing with delight as they get pushed higher and higher in the tire swing their daddy built for them:

This one was taken a few weeks ago, hence Austin’s hat and mittens!

My sweet boys attempting to sleep out on Braedan’s back porch now that the railings have finally been installed, until they decided they were scared of “dogs and owls.” Really? Dogs and owls?

My smart boys enjoying the gift of a summer evening rainstorm that finally cut through the thick humidity of the day:

Yeah, I could get used to this.

We visited the hemodialysis unit at the hospital yesterday. It was both better and worse than I expected. I mean, it wasn’t horrific, not some miserable torture chamber with sickly sad faces peering out from under the blankets. But it was very subdued, much more so than the lively cancer areas. I know that sounds weird, but there is such a stark juxtaposition of good and bad, life and death, in the cancer clinic (and the inpatient floor). Everything is tinged by the possibility that all these lively seemingly happy children might die, but still, they squeeze a lot of living into the moments they have.

In the dialysis unit, there’s a quiet resignation, a more depressed atmosphere surrounding everything. It seems like everyone is plodding along, just getting by, doing the bare minimum of living. It’s a rather unpleasant place to spend the vast majority of our time for the next two years: no windows, one open corner with four or five kids asleep in their reclining chairs, no movement, no parents even. Really, not one child there had anyone with them, an absence you never see in the clinic.

But some things were easier to accept than I had imagined, like the skin graft Austin will get in his thigh, shown to us by a sweet (if tiny) fourteen year old patient. The surgeon basically connects a vein and an artery under the skin for better blood flow in and out, which is what gets hooked up to the machine. It takes about three weeks to heal so Austin would first have a catheter in his neck, similar to one he had after his December surgery which we never needed to use and eventually removed. But once the graft is healed, it’s expected to last a few years, doesn’t need any care at home and can get wet, three things that fall squarely in the “Plus” category.

We asked gazillions of questions, some of which the doctor said we’d deal with in another year-and-a-half (like all my transplant and donor questions). Austin can’t even have his name on “The List” until he’s actually eligible for transplant, which won’t be until April 2012 (two years from the end of treatment). This is because kids, especially one as young as he is, are moved to the top of the list so a kidney could become available at any moment and he’d have to be able to accept it. Of course, that only comes into play if he needs a kidney off the list and not from a designated donor. A few months before he’s cleared for transplant, they’ll start the series of tests and screenings on potential donors, usually starting with five or six before narrowing it down to the best match.

So many of you have said that you’d donate a kidney, which is really really lovely. I obviously can’t, having had diabetes for twenty-four years now (I might need one someday too!) but we will willingly consider any one else’s.  Braedan also cannot, until he’s eighteen (or maybe sixteen if he’s a sibling), but a donated kidney only lasts ten to twenty years anyway so Braedan could give Austin his next kidney. The ideal kidney comes from a living relative between the ages of eighteen and thirty-five. My youngest brother Cory, a mere twenty-four years old and perfectly healthy, has offered his kidney already and has even requested that they complete the tests on him now so we’d know we had one and wouldn’t have to worry. (The doctors said no one will do that in case he gets hits by a bus so, Cory, look both ways before crossing the street!) But if his doesn’t pass the series of tissue matching tests, we could take a kidney from any healthy person (no diabetes, no hypertension, no smoking) up to age 50, with Austin’s blood type (AB-positive).

I know all these details make it sound like we’re definitely moving ahead with this. Some of you are probably thinking, “Wait a minute! Did I miss a posting?” No, you didn’t — we haven’t completely decided. But it’s likely going to happen anyway, so all this will indeed become relevant. We’re still waiting and thinking. We’re still going to try to have a little summer, in our minds and our lives. We expect to remove Austin’s PICC line late next week after another blood transfusion (his damaged kidney is spilling blood into his pee causing his hemoglobin to drop long after the effects of chemo should be out of his system). We think maybe we’ll do it after the Fourth of July, although I know that it’s gonna be hard to ever pick a good date; they’ll always be some reason to wait another week or month. Can there ever really be a “right time” to remove a child’s last remaining kidney?

Some moments it all seems manageable, others it seems totally overwhelming. Twenty-two months is a mighty long time. This last round has been less than six after all. And it has seemed like a mighty long time.

April 2020


April 2020