First, do no harm

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.

“The real question is . . .”

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 cancer-free edition

This posting is guaranteed one hundred percent cancer-free, because sometimes you just have to step back, have some fun and eat a little candy already.

First: Our house has suddenly become more appealing to people (price drop, perhaps?). We had a showing Friday, three today (two with the same buyers — they came through at noon and again at 2!) and two scheduled for Sunday along with an Open House. One of the groups coming through on Sunday is the woman who looked about ten days ago. She is “very interested” and has been trying to bring her husband through all week but his work hasn’t allowed it, so that’s very promising. It sure would be nice to have one less thing on our plates!

And the new house is really coming along. The kitchen has floors and walls and most of the cabinets installed and it looks fabulous. The former sunroom-cum-world’s-most-spectacular-mudroom is well on its way. Turns out that space had major water damage from years of a leaking roof, so it’s a good thing we were already planning on some big construction in that space. When this is all finished, I will have no excuse for not being totally and completely organized at all times. (Feel free to bring that statement to my attention months from now if there are papers and mail and art projects covering my kitchen counters.) Thr third floor is almost done, thanks mostly to Mark’s endless hard work, and it too looks fabulous. After weeks of electrical and plumbing and other behind the scenes work that’s important but not exciting, we are finally seeing our house take shape and we love it. I promise pictures this week.

And my boys: Man, are they cute. Braedan dressed as the Tin Man for Storybook Character Day at school. The kids in his class were wowed with his homemade costume constructed from a lawn bag, plastic funnel cap, and air dryer vents all spray painted silver. Voila:

They marched through the gym where the whole school gathered to hear the teachers, dressed in matching Dr. Suess hats, recite a group rendition of Green Eggs and Ham. The kids all proudly waved their books in the air that matched their character’s costume. It was really something.

Then Friday night, we messed up our perfectly clean house by carving pumpkins. Austin took literally every piece of silverware out of the drawers for this actviity and they both dragged “pumpkin goo” around the house on their socks but it was well worth it.

Tonight we’ll trick or treat for the last time on this block (weather permitting, please!). We considered heading over to Wellington because there is a spectacular Halloween display in a yard across the street from us with lights and music and all sorts of flying ghosts and enormous spiders controlled remotely by computer, but Mark thoughtfully pointed out that we should really give out candy at the house in which we currently live. And he’s right, of course, so home it is. Now if only I could get Breadan to wear his very original Tin Man costume instead of his Super-Man pajamas.  I can’t believe I’ve already passed the years when I have any say in what they wear!

                                                    

And to top off the cancer-free weekend, we get an extra hour of sleep tonight! Not bad. Not bad at all.

Some clarity

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.

Flip-flopper

Back and forth, and back and forth, and back and forth. This is a terrible position for parents to be placed in. This is a terrible decision to have to make on behalf of our child.

What’s the right answer? What will cause the least damage, to mind and to body and to spirit? What will give Austin the best possible life?

We just don’t know what to do.

I had a phone consultation yesterday with the head of surgery at St. Jude. Talking to him in person (well, not in person, but actually speaking with him) left me convinced that he and the team there do indeed know Austin’s history and are indeed making informed and careful recommendations. So that was good. But talking with him left me more confused than ever about how to proceed.

Some key points: He said he can envision few scenarios in which this “thing” could be left inside Austin indefinitely. The likelihood of it being cancer is just too high, and the risks that would pose are just too great. Of course, the fact that Austin’s cancer has never spread is reassuring but is no guarantee that it won’t decide to start spreading at any given moment. He also wondered aloud about the tumor that was removed in April that was located outside of the kidney. At the time, we thought that was good news because it meant the kidney would remain safe and untouched through yet another round of cancer. But Dr. Davidoff said that that might itself be an instance the cancer spreading. How do we not know that that particular tumor originated in the kidney along with all the others and somehow moved out into the abdominal cavity? Of course, we can never know the answer to questions like that but it does make you think.

He also said, and this has given us a small bit of hope to grasp on to, that he is comfortable attempting another kidney-sparing surgery. This means that he would try to remove the current mass without taking out the entire kidney, something the doctors here feel wouldn’t be successful and therefore wouldn’t be worth even trying. (Because that would require another surgery to remove the damaged kidney so soon after the first surgery, I guess.) Dr. Davidoff said that they have done several similar surgeries over the years, none quite like Austin’s of course, but that he is certainly hopeful and willing to at least try it. The caveat there, though, is that he would be more likely to succeed if we did it sooner rather than later, before the mass grew any larger.  Another thing to think about.

Also, he did say that they’ve had children at St. Jude who were initially diagnosed with solid Wilms’ tumors but whose recurrences were cystic Wilms’ tumors.  That wasn’t what I wanted to hear.

Our decision has come down to this: We leave something potentially deadly inside our child. Something that might just sit there and do nothing, or something that might sit there seeming to do nothing for months or even years before suddenly sneaking away and then reappearing somewhere else in an unbeatable, untreatable form. Or we subject him to a major surgery that is likely to result in a completely altered (and considerably less pleasant) life for two or more of his most formative years. And that maybe that major surgery removed something that proves to be completely and totally harmless and it was all for naught. 

Do you see why I say this is a terrible position for parents to be placed in? A terrible decision to have to make on behalf of our child?

I think, at this moment at least, that we are leaning towards trying a needle biopsy as planned before we learned that this mass was cystic (or fluid-filled).  Aftert talking with Jeff yesterday, he re-explained that we can still attempt that route but that it’s not as likely to give us definitive results. Basically, if a needle biopsy comes back indicating that this mass is indeed cancer, then that would be definitive. If it comes back indicating that it’s scar tissue, . . . well, that might mean that the one tiny part they biopsied was scar tissue with no information about the rest. So, you see, the news we would hope for (that’s it’s scar tissue) would leave us right back where we are now, not knowing what to do. The news we don’t want (that it’s cancer) would at least tell us what to do next (go in and remove the damn thing already).

Of course, I (ever hopeful) will hold on to the slim possibility that when we biopsy it, it turns out to definitively be something else entirely, something no one had yet thought of that is completely harmless. Ah, a girl can wish.

Not so fast

Now that Mark and I have had a chance to actually discuss a possible trip to Nashville and all its pros and cons, we have hit upon several reasons why we might want to wait.  Well, one main reason really, and that is our fear that the doctors there will insist on running their own battery of tests instead of relying on all the slides and computer images we would bring with us.  This would be lousy for Austin both in the moment (because a full gamut of medical exams is just plain unpleasant, whether you’re three or whether you’re thirty) and in terms of his long-term health. Remember, it’s recommended that children have no more than six CT scans in their first ten years of life, due to the dangers of radiation. Austin’s had, well, truth be told, we’ve lost count . . . probably fifteen in the past two-plus years. So, subjecting him to another round a few months before we think it’s medically necessary, and in an unfamiliar environment to boot, seems extra cruel.

We’re going to look into the possibility of Mark and I going without Austin (not the grown-up trip we had imagined!), just to sit down and talk with these doctors, but I’m not sure yet whether that’s even possible. We might have to have Austin admitted as an actual real live and present patient before we’d have the chance for a one-on-one consultation.  Mark is not convinced we should go either way, but what I’ve realized I’m hoping for is to have them look fully at all the evidence and then either change their recommendation to the “watch-and-wait” approach we’re (hopefully) adopting or be able to back their recommendation up with some good solid reasons.

You know, the main oncologists want to remove cancer as quickly and completely as they can is due to the fear of it spreading. But Austin’s cancer has never spread. In more than two years, it has remained completely local, right in the same vicinity it’s always been in. Now this does not guarantee that it might never spread, but it seems that if it were going to, it would have done so already. Especially if we think about that tumor that was removed this past April that had apparently been inside him since his initial diagnosis eightteen months prior. And it never moved, it barely grew, and it didn’t seem to do him any real harm. So, while the idea of leaving what might be cancer inside our child is terrifying, the alternative (taking out that kidney and relying on long-term dialysis and transplant) is also terrifying — and more certain.

Talk about being stuck between a rock and a hard place. I really liked this parenting thing better when my biggest dilemma was whether to send Austin to kindergarten at almost-age-five or almost-age-six. Really.

60s and sunny in Nashville

Sure beats the weather here in cool and rainy Cleveland.

So . . . St. Jude’s recommended a resection and biopsy. That means removing the “shadow” to find out exactly what it is, which in Austin’s case means removing the kidney (and you know what that means). Now, this is just a recommendation, not something we are going to do rush out and schedule. It’s also not terribly surprising, especially because, according to Jeff’s description, the doctors were reviewing dozens of cases during Wednesday’s meeting and didn’t necessarily go through Austin’s entire past history, including the two years’ worth of CT scans we sent. In fact, they didn’t even look at the recent ultrasound because their radiologist didn’t think it was “relevant.” So, ultimately, we again think they didn’t really put their full attention to this and are not all that surprised by the automatic recommendation to get as much information as possible (at all costs, as I feared).

Mark and I have decided to finally go to Nashville and meet with them in person. We want the chance to sit down at a table and really discuss all that has happened and all the options moving forward (and all their ramifications).  The main guy we’d be meeting with is Dr. Green, the “Wilms’ tumor guru” who has been following along (albeit peripherally) with us since the very beginning. I think it will be much more productive for him to see Austin in the flesh (and not as a series of grey shadows on slides sent via FedEx) and for us to have a real human conversation.

There’s not a huge rush, so we’ll wait until after Halloween (obviously of great importance in a house with two little people) and probably go sometime in the next few weeks. We feel okay about this; not much has changed since yesterday after all.

And we could always use some sunshine and warmer weather . . .

Still waiting

We still haven’t heard anything.

This means one of three things (or maybe it means one of those other things I just haven’t thought of yet): 1) The doctors at St. Jude’s haven’t yet contacted Jeff. 2) They did contact him and their recommendation was the same as his (watch and wait) and he’s just been so busy, it sort of fell off his radar and he forgot to call us (this is, in my opinion, the best option although it seems out of character). Or 3) their recommendation was so extreme (i.e. removing the kidney right away), that Jeff is consulting again with the local docs before contacting us. Hmmmmmmm . . .

On another note, as many of you probably knew when you read the last post but were hesitant to share with me, Jude IS the patron saint of “lost causes”!  And I thought I was kidding when I suggested it. Couldn’t they have picked the patron saint of sick children or something? Lost causes? Ugh.

After I had already googled it myself, I got this in an email from Mark, who’d obviously googled it himself:  The Apostle Saint Jude Thaddeus is “The Miraculous Saint,” the Catholic Patron Saint of “lost causes” and “cases despaired of.”  When all other avenues are closed, he is the one to call upon, and his help often comes at the last moment.

Okay, I get that. This is the place you go when all else has failed and then, at the very last moment when hope is almost gone, they save you. I still think it’s a bad name.

Anyway, just to fill you in on other developments in our life: Still nothing on the house, although we did have a showing yesterday. I’m hopeful that some couple is sitting at their kitchen table right now talking about how much they love this house and figuring out what to offer (I told you I don’t lose hope!). 

Braedan continues to love school and is learning to read before my very eyes. And Austin is finally starting to love his school too.  He actually clapped as we pulled up the other day. He still cries when I leave him but it only lasts ten seconds and then, in his teacher’s words, he has “phenomenal” days.

So, we carry on.

Waiting for a sign from St Jude . . .

Well, we’re waiting for a sign from St Jude’s really.  What is Jude the saint of, by the way?  Hopefully it’s not something awful like “lost causes.”  That wouldn’t really be appropriate, would it? Anyway, the doctors at St Jude’s are reviewing Austin’s case today and will let Dr. Auletta know by the end of the day what their recommendations are or if they have ever seen this happen before. (Being “one of a kind” certainly has its down side!)

You may remember that St. Jude’s reviewed Austin’s case back in March and April and their recommendation (that Austin receive flank side radiation) differed from that of both Dr. Auletta and the radiation oncologist here at UH. It also differed from the non-medical opinion of both me and Mark, and it was one we did not follow. Now, I certainly respect and admire all the incredible work that St. Jude’s does for kids with cancer; they are undoubtedly the best around. But I really felt like they just weren’t paying attention to the nuances of Austin’s cancer when they made that particular recommendation; it had so few advantages and so many (and such big) disadvantages.  I also wonder if this is yet another case of over-aggressive treatment of cancer in children. Maybe one of the reasons they have such impressive success rates regarding cancer is because those patients end up with other horrible and often life-threatening conditions.  It doesn’t do much good to have a child who is ”disease-free” (as in no evidence of cancer) then die of, say, transplant complications.

But I’m getting ahead of myself. We are waiting to see what they say today and how this impacts our plan moving forward. Not quite sure what to hope for, but hoping for the best!

With reverence

My mom has my Caring Today article sitting out on her counter to proudly show to anyone who walks in her house (we moms are all the same, aren’t we?). She must have read it yet again the other day because she commented on how she too interacts with Austin “with a great deal more reverence.” It’s hard not to. Even though this shadow may turn out to be nothing, even though this episode may not alter his life’s trajectory, all those “what if’s” come rushing back and a new level of care, of intensity, of reverence colors all of our interactions with Austin.

Take art projects, as one small exmaple.  If you’re the mom (or dad) of a kid in preschool or elementary school, you are definitely flooded with art projects.  They come home every day stuffed into backpacks and folders, some special, some scribbles. I try to weed through them and save only those that really capture a time or ability in each boy’s schooling, while sneaking the rest into the bottom of the paper recycling bag. Braedan’s are filled with increasing detail and lists of all the words he can spell (even if those words are in no way related to the drawing they accompany). Austin’s are mostly indecernible markings in a single color.  But lately, I’ve found it more and more difficult to throw away any of Austin’s work. There is this tiny voice in the back of my mind warning me that I might someday regret not having every shred of evidence of his being.

I know that sounds morbid and I assure you that we are not moping around awaiting his demise. But that sense of vulnerability is undeniably present and hard to shake. But it is the boys themselves, and especially Austin himself, who force us to move forward and live life in the present. Austin is a thoroughly alive child, intense in ways both positive and negative. He can get violent, especially when he’s frustrated, and is both a hitter and a biter. Poor Braedan, of course, bares the brunt of his brother’s angry outbursts. But he is equally intense with his affection. When he wants to show his love, it’s as if he simply can’t get close enough to you. He wraps himself around me so tightly and snuggles up, nudging in closer and closer until his body and mine are practically one. He gives squeezes and hugs, kisses and nose rubs, over and over and over.  With his arms snug around my neck, he’ll even pat my back  like he’s soothing or comforting me.

Which I suppose he is.