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Of course, all this hemming and hawing about what to do next could be quickly rendered null and void if something suspicious shows up on that kidney. Austin has an abdominal ultrasound this Thursday morning, which, as you may or may not remember, is all we’re allowed to do with a GFR under 30.
His kidney isn’t functioning well enough to filter out the contrast he’d need to drink for a CT scan or the gadolinium needed for an MRI. In fact, for patients in end-stage renal failure — which is several steps beyond where Austin is — MRIs are associated with this horrific condition that causes thickening of the skin and organs . . . and has no treatment. Basically, your organs keep thickening, leaving you completely debilitated, until you just die. Not something I’m prepared to sign my okay to on a routine consent form. So that leaves only ultrasounds which are good because they don’t expose him to unnecessary radiation but aren’t quite as precise in finding small or hard-to-detect growths. We’ve arranged for all of our ultrasounds to be done by the best doctor possible, one who knows Austin’s kidney very well, so that makes us feel confident that this method of “watching” is good enough.
That will take place this Thursday and then Friday Austin needs yet another eight-hour blood transfusion. His kidney is not making something called erythropoietin which stimulates the production of red blood cells, so his hemoglobin can’t fully recover from the effects of chemo. (Anybody have to consult an online dictionary to get through this post? I did, to triple-check my spelling!) This will be the first time he’s had blood since the removal of his PICC line so we’ll see how he does with a peripheral IV in his hand. Hopefully one will do the trick and not be “blown” by the heavy volume over the course of the day. Inserting a second IV halfway through might just be too much for the little guy.
So, we’ve got a few days that will feel like we’re back on the hamster wheel of treatment. And then it’s off to Chautauqua for a weekend of boating and fireworks. Start countdown now . . .
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.
Wow, well, that was quite a typo, huh? As I think was obvious, the last lines of my previous post were supposed to read (and now do read), “I do NOT want to be like them.” I am going to quickly breeze over that so as not to make myself too superstitious and nervous about possible hidden meanings.
Anyhoo, Austin needed platelets again today (of course, why are we surprised?), but that came after a lovely morning at school. He didn’t even cry when I left him, which is a rarity. It’s been a struggle to fully acclimate him to preschool since every time he gets into a groove there, he’s pulled out again for a three week “vacation.” So today was good and he’s due there the next two days as well.
We were bummed about the platelets but pleased with his much more reasonable blood pressure numbers, even after his transfusion. Maybe the medication is finally at the right dose and doing its job. While waiting for his platelets to arrive from the blood bank, we spent a sunny if chilly hour outside engaged in our favorite activity: construction gazing.
We’re not expected back at the clinic until Thursday morning, a full two days off. Well, two days off for him. Mark and I are planning to meet — sans children — with our oncologist and nephrologist tomorrow to try to flesh out the next steps in Austin’s treatment. We are hopeful that we’ll get enough clear information that we can make a decision we feel solidly comfortable with. We know, however, that answers to most of our questions simply don’t exist and we’ll therefore have to choose among the lesser of evils.
While Mark and I think differently and come to our decisions via different routes, we both fully understand and respect each other’s decision-making process. We also know what each of our weaknesses are, such as that part of me wants to stop chemo simply because I am sick and tired of chemo. I recognize that and Mark recognizes that and we will do our best to not let such (expected but selfish) feelings influence our ultimate decision.
In my mind, this is a choice between almost certain bad thing happening if we continue (kidney failure) versus a maybe (?) remote terrible thing happening if we don’t (cancer returning or, worse, spreading). Not to mention the numerous other bad things that can happen as a result of continuing (bone marrow depletion leading to bone marrow transplant, secondary cancers down the road, fatal infections of the central line, etc). We don’t need to make any decision for a while because he still has another round next week from which recovery is bound to be long and torturous (same chemo as this last time — just piling it on).
Neither option is perfect, neither road a smooth one to travel. Both are fraught with danger, sometimes obvious, sometimes hiding around the bend. No matter what we choose we’ll be taking a huge risk. But we will be cautious and we will be wise. And I hope hope hope we will be right.
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.
Every time we are faced with a new obstacle, I feel overwhelmed and pissed off and sad and convinced that this one is it, this is the one that will bring us down, that will change who we are, who he is. And every time I’ve been proved wrong. Every time we’ve ended up okay.
I’m hoping the same is true this time.
I am furious right now about the kidney. I’m not mad at anyone in particular, I know it’s no one’s fault, and yet I’m mad at everyone. I’m mad at our doctors for giving chemo and radiation even though I know that is what’s saving my child’s life. I’m mad at myself for not keeping him super-hydrated all the time at home (even though no one ever told me to). I’m mad as hell as the nutritionist who handed me that absurd pile of papers today describing the “renal diet.” I’m really really mad at the renal diet itself, as that is the current source of all my anger and frustration and worry.
I know, silly, right? It’s a diet, just recommended lists of foods to enjoy, foods to limit and foods to avoid. But it is so terribly restrictive and, in my mind, so unhealthy. Take for instance, that fact that I can not give Austin whole wheat anything, but instead have to resort to white: white bread, white pasta — stuff my kids have barely ever had. I’m no perfect mother feeding her children all natural health food all the time; in fact, I often find my self plagued with guilt and worry that their diets consist too much of “kid-friendly” junk food. But I at least give them whole wheat bread!
But no, now he can’t have bananas or tomato sauce or cantaloupe or raisins or edamame beans or even baked beans. And the real kicker is that my Austin, who survives almost entirely on cheese, yogurt and milk, can now have no more than one cup of dairy — including soy — each day. Oh, I cringe when I imagine the battles that are going to take place in front of our refrigerator as he gets used to this.
But we have got to protect that kidney. We have got to do everything we can, even have knock-down, drag-out, biting-mommy-on-the-shoulder-until-she-hands-over-my-muenster fights in front of the fridge to do that. We need it to last two more years. At least, at least, two more years.
I was rereading some of my earlier posts, written in December as we were preparing for chemo, and I was struck by how pessimistic I was about the whole thing, by how very worried I was for all of us, certain that we were on the verge of disaster. And then I was struck again by how much better these past few months have been than we thought they would be, by the fact that we are still a happily functioning family, by the fact that my boy still races around with a smile on his face, full of energy and light and laughter.
So maybe the renal diet will be the same way. Maybe I’ll find new recipes online and we’ll toss the string cheese and Austin will just adapt. And maybe, just maybe, the little kidney that could will do some more.
All along, throughout this entire cancer journey, the function of Austin’s kidney has been a guidepost for us, a signal of which way the wind is blowing. It has given us hope, it has given us something to fight for, it has at times taken on enormous (and perhaps undeserved) significance as the determining factor in whether we felt good or bad, victorious or defeated, hopeful or hopeless.
And now it seems on the verge of failure.
Not right away, this won’t happen overnight. But it is definitely starting. His pre-chemo lab numbers this morning were not good, although they did improve after several hours of IV hydration. In fact, his doctor wants us to go home with “fluids in a bag” for next week. We’re also moving up his end-of-treatment scans (MRI and chest CT) to next week, before any more damage is done.
We’re not sure what all this means yet or how long the kidney might still last or whether it might pick back up again when the immediate stress of chemo is gone. But I’m sad. Sad for my little guy, sad for us all. Sad for that kidney that has been so traumatized and yet worked so hard, that has gotten back up after being knocked down so many times.
Yesterday Austin had one of his little preschool friends over for a playdate. We were talking a bit about school and how Austin misses being there and I gave a quickie explanation of how his medicine sometimes makes him more vulnerable to getting sick so he can’t be around all the germs and so on. And this sweet little four-year-old shook his head and said, “But medicine is supposed to make you UNsick.”
Ah, if only four-year-olds ruled the world.
After last week’s emotional high, we’ve begun that speedy descent downward. Well, no, that’s not true, we haven’t begun it yet. It’s more like we’re perched at the top of the roller coaster, having slowly crept up with the creak creak creak of the wheels and are now poised at the top, awaiting the plunge. Only this plunge is not for fun.
Last Thursday, Austin had another of those major kidney function tests, a GFR, where they take a series of blood draws over the course of the day to see just how well the kidney can filter out the test-fluid they first inject into his blood stream. This is the one (also called a “nuclear scan”) that we were so pleased was normal back in December following the kidney-sparing surgery and then were even more pleased in January when it was even more normal. Well, his result on Thursday was so far from that, so totally not normal, that they think there was some sort of “interference.” I have no idea what might have interfered with the results, but I hope something did because if that score is correct, the kidney is pretty much done for. As in just-go-ahead -and-remove-the-damn-thing-now-so-we-can-finish-chemo done for.
Not panicking yet. Worrying? Yes. But not panicking. He doesn’t appear to be in kidney failure, for what that’s worth. I mean, I think we’d notice something. His weekly lab results are fine, he’s not puffy, still peeing, the whole bit. So we wait for the repeat test, which will happen on Tuesday, and take it from there.
Perched at the top of that roller coaster, not sure when we’ll fall.
There are many reasons why I write this blog everyday. A lot of it has to do with needing a place to process my own feelings, an outlet for expressing my fears and hopes and all the good and bad that comes along with this. I often write to pass along information to all of you, my friends and family and the community that has formed a circle around us over the last two years. As I help you to better understand what we’re going through, you’re then better able to support us as we go through it. And sometimes when I write, it actually helps me and Mark see our situation and our path ahead more clearly.
After I posted last night about this dilemma, Mark and I both realized, first separately and then together after reading and rereading the post, that the decision is fairly clear. It is not easy. And it is not good. But it is there.
We cannot afford to keep cancer, or even potential cancer, inside Austin just to save his kidney. He can live without a kidney. And that is all it comes down to.
Now this doesn’t mean we are going to rush ahead with the surgery. It is still enormously risky and we’ll gather as much information as we can first, from the needle biopsy and whatever else. The doctor from St. Jude said he was willing to try a kidney-sparing surgery; he did not say he could do one (and he was very clear about that with me on the phone; doctors do not like to give guarantees, you know). So kidney failure has to be something we are willing to accept if we go down that road. And it is no walk in the park. I sat down with Austin’s nephrologist a few weeks ago so she could take me through some of the basics of dialysis and everything she told me sounded pretty awful. It was do-able, it was bearable, but it was pretty awful nonetheless.
First of all, you know we’d have to be in the hospital, with Austin hooked up to a machine for four hour stretches three times a week. She said they do their best to schedule it around school and work and other activities but most people are either on a Monday-Wednesday-Friday schedule or a Tuesday-Thursday-Saturday schedule. Now as much as I love Rainbow Babies’ and Chidlren’s and as happy as I’ve been with the care we’ve received over the past two-plus years, the idea of spending all that time in the hospital is crushing. It feels like a weight coming down on top of me, squashing the breath out of me.
Next thing (because I really can’t dwell on the squashing-the-breath-out-of-me thing right now) is that he’d have skin grafts on his forearm where they’d basically be putting veins and arteries on the outside of his skin large enough to allow massive amounts of blood to flow in and out of them during the dialysis process. If you’ve followed this story from the beginning, you remember the trouble we had with Austin’s central line (Broviac) and how difficult it was to keep him from touching it and dirtying it or tugging on it and all those things little kids do. These skin grafts would again need to be kept clean and dry at all times and would place him at great risk of infection, bringing back all those automatic trips to the ER for minor fevers and the like.
Then, there is what his nephrologist described as the most difficult part of dialysis, especially for kids and that is the serious dietary restrictions. I don’t know a lot about this yet, but I do know we’d have to limit potassium (bananas), phospherous (cheese — his all-time favorite food, which he requests in slices “as big as my house” and if I give him a normal sized amount, he whines and says, “No, as big as my new house!”), salt, and fluids. As in severely restricted intake of fluids because he wouldn’t be peeing anymore (which seems strangely sad to me in and of itself) and would only flush out all that waste every other day. Anyone who has ever tried to control the diet of a toddler knows that suddenly removing entire groups of food (especially those once thought of as relatively healthy) is exceptionally difficult.
I know we can do this. And we will if we have to. But I wish more than anything that Austin didn’t have to prove his strength yet again. I wish he didn’t have to be brave and resilient and tough. I wish he could just be normal, do the things normal kids do, eat the food normal kids eat, assume he will reach his tomorrows like normal kids will. I wish we could just leave him alone, let him grow up unharmed and unscathed. I wish he could just be.
Just let my Austin be.
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.
A few hours after I posted that cute story about Austin declaring himself “all done” with treatment, I got the dreaded call from Jeff saying that the doctors at St Judes did indeed recommend radiation. He still wasn’t sold on the idea, but thought we should set up a meeting with the pediatric radiation oncologist at UH to discuss it further. Mark and I, while very hesitant about radiation, were of course willing to talk about it so I called the office right away to set up an appointment. Well, when the secretary told me that we should bring Austin with us, I expressed some surprise and repeated that we were just having a preliminary discussion, and weren’t yet moving ahead with any procedures. She still thought it was wise and I capitulated, assuming as always that “the experts” know best.
This did not sit well with Mark, who knew that 1) We can’t have a productive conversation with Austin climbing all over us, 2) It would cause Austin increased anxiety to be sitting in another doctor’s office and 3) Whatever they could gain from seeing him in the flesh could just as well wait. So I let him call to inform the office we wouldn’t be bringing Austin along and they gave him a pretty hard time. The nurse got on the phone and insisted, claiming they needed Austin’s height and weight and latest vitals. Mark rightly pointed out that we were in the hospital a mere two weeks ago and they could just use those, and anyway, we weren’t yet at the point where height and weight and vitals would mean anything!
A few minutes after Mark called me with the latest blow-by-blow, an intern called to say that they’d spoken to my husband and wanted to make sure I understood that if we moved forward with radiation, they would in fact “need to lay hands on Austin.” Uh, yeah, okay. Did they think I was hoping he’d get radiated over the phone?
Needless to say, we walked into this visit already feisty, which was unusual for us. We have been extremely compliant this entire time, always friendly, always following the advice of our doctors. But this time felt different. We were not at all convinced that radiation could work for Austin and we were not going lightly down this path.
We went to sleep Tuesday night expecting the doctor to attempt to sell us on radiation as a viable and necessary option and expecting ourselves to turn them down. This idea made me extremely nervous. What if we refused treatment and his cancer came back? Would that be our fault? But what if we did it and his kidney failed and the cancer came back anyway? Or what if the cancer wasn’t planning on coming back in the first place and we destroyed his kidney and then he got radiation-induced leukemia in three years? Let’s just say, it all felt like too much responsibility for us to bear. These are not the kind of consequential decisions you expect to have to make on behalf of your babies. This is not bottle versus breast, cloth versus disposable, public versus private.
So, let me get to the point already. We walked in there this afternoon with an envelope of unsatisfactory research and a long list of questions. That we never even had to ask.
The radiation oncologist said that there was no research that proved, or even suggested, that radiation could work on rhabdomyomatous tumors. He further said that he was almost certain to destroy Austin’s kidney if he tried. And then he said that, as general practice, they try not to radiate any kids under six and especially under three unless they absolutely need it because the risk of secondary cancers is so great.
I was waiting for him to interrupt himself with a big “But. . . ” like they do on those 48 Hours Mystery-type shows where they lay out one side of the case and have you completely convinced before suddenly revealing the other, completely contradictory side. So I said, “What are the benefits?” and he looked at me, then back at Mark, shook his head and said, “Frankly, I don’t see any.”
He was trying to convince us not to pursue radiation! Let’s review the facts: There is no tumor or mass inside Austin to target with radiation; we don’t know or even think that he has cancer at this moment. Once you’ve radiated a field, you can’t do it again, which means radiation is an all-or-nothing kind of deal–why waste our one chance at successful radiation on nothing? Why subject his body and “the little kidney that could” to this poison if no one thinks it will work? If it comes back in a year, we’ll deal with it in a year, and it won’t be a year he’s spent on dialysis.
Will we worry? Of course we’ll worry. But we would have worried anyway. We would have worried even more if he’d been through radiation, about kidney failure and secondary cancers. We would have worried long beyond the next two years of Wilms-related worrying. Now we wait three months for a CT scan and hope hope hope it’s clear. Then we wait another six months and then another and another and then one day, in the not too distant future, we’ll get to use that other C-word: cured.
Little Austin was prophetic after all. This round of cancer is indeed ”all done.”