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You know I’m a planner. Especially at this time of year with holiday parties and family gatherings and Breadan’s December 24th birthday, which needs to be celebrated both at school and at a party all while keeping it separate from Christmas. Add to that the fact that our house might be ready to move into a mere week before Christmas and I am really really wishing I was able to plan.
But plan, I cannot.
Austin’s ultrasound has been moved from the 10th to the 15th, due to the radiologist’s schedule, which could truly screw us for the holidays. If this mass is indeed growing, I imagine we would check in that afternoon for a surgery the next day. That gives us nine quick days for recovery, eight if we want to be home on Christmas Eve. Now remember, back in April we expected to be in for ten to fourteen days and Austin was home jumping down the stairs in just three. But when he had his right kidney removed in September 2007, he had a ten-day ileus, prolonging what was already the worst time in our lives. The ileus, for those of you new to our story, is a common post-operative intestinal blockage that is not dangerous but is truly miserable. It renders the poor patient unable to eat or drink anything by mouth, not even an ice chip or sip of water. They usually last for three to five days, but Austin (with his tendency to ignore such rules and parameters) has had one ileus that lasted for eight and another for ten. Not to mention, he would need to get established on dialysis and I have no idea what that entails. So, we would only be able to hope beyond hope that we would spend Christmas together under one roof.
Well, no, I think we would spend Christmas together under one roof; just not under either of the roofs we had hoped for. If we’re actually still in the hospital for Christmas, I hope we would all be able to sleep there together on a variety of cots and couches. Braedan’s never stayed the night before but it certainly seems the right thing to do. Oh, but I know there are restrictions on sibling visits during flu season. Any of you nurses reading, let me know if there are exceptions made for the holidays.
Now of course, the other thing we must hope beyond hope for is that the mass isn’t growing at all and that we get to wait a few more weeks before taking any action. Or that maybe, just maybe, it has disappeared. I have no idea what that would mean and am not even sure if such a mystery would make us feel better, but it would at least buy us some time. And with two little boys who are most excited to discover Santa’s deliveries on Christmas morning, time is all we need.
We had Braedan’s first official school conference yesterday and, among other glowing compliments, his teacher said he is one of the happiest children she has ever known. “Always happy and always positive,” were her words.
Through my years as a classroom teacher, I have glimpsed the inner lives of many different types of children, each with their various strengths and weaknesses, each with their own individual comforts or struggles, and I always knew that I would most want to parent a child who was the happiest and the nicest over one who was the smartest. And trust me when I say they are rarely the same child! Many happy and kind children are also very bright and very conscientious students, as I know Braedan also is, but I don’t think I ever had a class where the very smartest kid was also the nicest, most well-adjusted or well-liked child.
So I am thrilled that my boy is so happy and that he both likes and is liked by his teachers and classmates. And, man, I hope it stays that way.
We talked with him the other night about the possibility (probability) that Austin’s cancer has returned and what that might mean for us all. I told him, as we have many times before, about all the emotions he might feel — anger and jealousy and sadness and fear and maybe, just maybe, abandonment — and how okay they all are and how open we are to hearing about them. We talked a little bit about dialysis and when I mentioned that Austin wouldn’t pee for two years, Braedan, like any typical almost-six-year-old boy, dropped his jaw and said, “But will he still . . . poop?”
After explaining how a kidney works (in my best kindergarten language) I said that Austin wouldn’t be allowed to drink very much and my sweet Braedan said, “But won’t he be thirsty?” Oh yes, Little B, oh yes. And later, I cautioned that we hadn’t yet told Austin any of this and he said, with great conviction, “Oh, I don’t think you should.” I agreed, offering up what Braedan could already sense, that it was too vague and too scary for Austin to have to hear before we knew if it was really happening.
So we will move forward from today with these images of our two children, happy and kind and able and good, and will carry that as our goal.
People keep asking me and Mark how we feel and the honest answer is that we just don’t know yet. This is all so uncertain, things seem to change so drastically so quickly and until we have something more definitive than we have right now, we just aren’t committing to any particular reaction or emotion.
We feel sad, for Austin, for Braedan (who, if he hasn’t felt abandoned up until this point, probably will now — ha, cancer humor), for us. We feel scared, angry, worried, hopeful, resigned, frustrated, tired, bewildered, numb. We feel everything all at once and we feel nothing at all.
We will wait until December 10 and in these two weeks, we will carry on as normal, going to school and on outings, painting together at the new house in what has become a family labor of love, Austin with an endless array of colors in his hair. We will cook and bake and eat on Thanksgiving and be thankful for all that we have. And we will wait until that next ultrasound to see if this new little thing has indeed grown.
And if it has grown, then we will assume it is cancer, because, really, what other small round hard object is going to appear out of nowhere in this boy’s kidney but cancer? The dilemma of the past month will be irrelevant and we will do whatever we have to to get it out of his body and make sure it never comes back.
And if it hasn’t grown, the great hope of the moment, we will go back home (to which house, we’re still not sure!) and buy our Christmas tree and decorate it, and celebrate yet another holiday all together, happy and apparently healthy, and be thankful for all we have.
And then we’ll do another ultrasound two weeks after that and then a scan in mid-January and we’ll go as long and as far as we can until we have a reason to change course. And if and when the time comes that we have to take that kidney out, then that’s what we’ll do and we’ll move forward with dialysis and learn a new set of terms and adopt a new diet and meet the new nurses and we’ll be thankful for all that we have.
You know, you would think, after all we’ve been through, that we would learn not to get too comfortable. That we would somehow always be ready, forever on our toes, prepared for whatever comes.
And yet instead, we learn to adapt so quickly that it feels almost seamless. We move fluidly from good to bad to good again. From pessimism to optimism, from despair to hope.
And back again.
Austin had an ultrasound yesterday morning, one month after his last. The cystic lesion that we’ve been watching, the cause of all of our recent worry, has remained the same, no changes, no growth. Which is exactly what we wanted it to do. And which is all that we thought to hope for.
But, of course, as we should know by now, as we should have come to expect, there’s something else. Always, always something else to worry about.
Right near the cystic lesion is a very small mass, probably solid and definitely new. The “new” factor is the most alarming. He had a scan six weeks ago and an ultrasound four weeks ago and this thing was not there then but is there now. Which means, of course and unfortunately, that it’s probably cancer. New cancer.
But (there always a “but” after the good and the bad), we’re not sure. Dr. Auletta has recommended a repeat ultrasound in two weeks which would give us enough time to do a surgery before Christmas if it has indeed grown. If it hasn’t grown, we would probably wait until after the holidays for his regularly scheduled CT scan and then take any necessary action after that.
So the pendulum swings again. We felt so good, relieved, “over it,” for the past ten days. And now we’re back again, on the cusp of surgery and likely kidney failure and all that comes with it. There are many unknowns as of now, but if it is indeed a recurrence, he would likely need some cancer treatment as well, in the form of radiation or chemo in addition to dialysis.
Here we go again.
I don’t know how many of you watch NBC’s The Biggest Loser, but it is great. I swear, I sit there and am amazed every week at what these people are able to overcome. It is truly an inspiring and powerful reality show. Plus, because I am a total “no pain, no gain” kind of exerciser, Mark and I both fantasize about having those trainers kick our butts in the gym.
Of course, the contestants are often dealing with a variety of emotional issues that lead them to become so obese in the first place. This season alone has had one grown daughter of a now-dead herion addict and a woman whose husband, five-year-old daughter and six-week-old son were killed in a car crash, both of whom turned to food for comfort. (I bet you’re really wishing you watched this upper of a show, huh?)
Last night, one of the contestants revealed that his sister had died of cancer when he was a teenager. This was the first time he had mentioned it, after ten weeks on “the ranch.” Well, Jillian Micheals, one of the trainers, jumped on this and insisted it was the root cause of his obesity. Not just the cancer and not even the death, but what she dubbed his “abandonment” by his parents. He never said he was abandoned, simply that he had been shuffled around between friends and family while his sister was in treatment. Jillian hounded him, literally following around behind him, insisting over and over again, “You were abandoned, you were abandoned so your parents could devote all their attention to your dying sister.”
Now, I have no idea what went on in this man’s family and I am certain that many children with sick siblings do indeed feel abandoned, but I take serious issue with the assumption that it is an automatic reaction of families. Breadan, for one, was not abandoned. And yes, he was shuffled around between friends and family. And yes, it was difficult for us to spend as much time with him as we wanted to. And yes, it would have been worse if we had lived farther from the hospital or if we hadn’t had such a tight network of people around us to help take care of him. And no, I cannot guarantee that he may not look back one day and think of it differently. And no, I can’t say how differently it may have turned out if Austin had indeed died.
But I suspect that this man’s weight problem was due, at least in part, to the sadness and loss that inevitably existed inside his family following the death of his sister. Sadness is automatic when a child has cancer. And sadness is automatically doubled, tripled or quadrupled when that child dies.
Abandonment is not automatic.
The latest updates on our potential (or not-so-potential) house buyers:
One couple has said they want to wait “a few months” before they make a decision. Yuck. And another said they still really love this house but the husband wants to make so low an offer, he’s afraid he’ll offend us. Make the offer already and let us decide how offensive it is! Argh. We are having another Open House this weekend and my mom just met a couple in front of our house who had seen it online and were doing a “walk-by” to check it out. She almost invited them in which would have been postively disatrous (not exactly clean at this particular moment), but they’re planning to come this weekend.
Of course, I have yet to start packing because I want to keep everything looking nice, which is clearly my own delay tactic because see above. We’re still hoping to move before Christmas regardless of what happens with this house.
Speaking of delay tactics, the best of all come from Braedan. Each night as I walk out of his room, he calls, “Put on your brakes!” and proceeds to ask any number of irrelevant, out-of-the-blue questions. Last night, it was, “Mom, who invented words and how did they think them all up?” Ha, right at bedtime! Nice try, kiddo.
Did I mention that I was building the world’s most awesome mudroom? In fact, I think it needs a new name because MUDroom just doesn’t do it justice. I’m leaning towards ”super-room.”
How’s this for a nice playroom? Don’t miss Austin there sliding across the newly refinished floors.
And, of course, the kitchen. The cabinet doors aren’t on yet so that makes it hard to get a good sense of just how awesome it will be in the end. Remember these “before” pictures?
That’s it for now. Next week, I’ll have some of the bedrooms which are almost finished. We’re still waiting waiting waiting for someone to make an offer on this house. But I guess we’ve already used our weekly allotment of good luck, huh?
Totally last minute but the Rainbow Radiothon is running on 102.1 (www.wdok.com) today and tomorrow. Austin was one of the featured stories of the Children’s Miracle Network last year so I’m assuming they’ll rerun his story again, although it’s on a new station this year and it seems the format is a little different, so I’m not positive.
I find it sort of funny, or at least ironic, that all of us (you out there as well as me and Mark) are feeling such joy and relief after Monday’s meeting. It’s almost as if we think, “Oh thank God, that’s over with,” when in reality, whatever was inside Austin’s body last week is still there today. He still might have cancer. Or not.
We do feel good. Enormously relieved. Even though the facts didn’t change, even though no one looked at the slides and said, “Oh wait, now we know what it is,” even though everything remains the same, it sure doesn’t feel that way. Just to have the prospect of surgeries and dialysis no longer looming over our heads (for today, at least) is a huge gift.
But, as promised, here are the nitty gritty details we learned in our Monday conversation, all of which fed into our decision.
You may remember that we thought our next step would be to do a needle biopsy, even knowing it may not be successfully diagnostic. Well, that was an understatement. The doctors said it had about a ten percent chance of giving us any definitive answer. Because of the “thing’s” location and because of the fact that they’d be stabbing a fluid sack and trying to draw out cells from the solid portion inside it, they thought it was sort of a waste of time. Even if it is cancer, learning that from the biopsy is unlikely. And our actions moving forward wouldn’t be impacted by the results in a major way because those results would most likely have put us back where we are now. So it was deemed an unnecessary step to take.
We also discussed the possibility of doing an open surgical biopsy, where they begin a surgery but don’t decide whether to take out the mass, or take out the kidney or just sew him back up until they’re actually inside and can biopsy a section of the shadow. If the mass grows and we do decide to operate, this is what will automatically happen anyway. But to do that now would put him at great risk. Because he’s had so many surgeries (one kidney-sparing that removed four tumors plus three surgical biopsies on that particular kidney), there’s a ton of scar tissue and adhesions that have formed. For instance, one part of the kidney has sort of suctioned on to the spleen and any surgery could severe that currently harmless connection and make the spleen bleed out and need replacing. The kidney itself could fail due to excessive blood loss because of all of the scar tissue that would need to cut through to even take a look in there. So again, at this point, it is not worth it.
Another thing, and this one is promising, is that this shadow might be a urinoma. A little pocket of pee. When they raised this as a possibility, I exclaimed, “Oh, it must be that! A pocket of pee is just so Austin!” Because there is obviously urine in the kidney (apparently just floating around in there), when they did his main surgery, they might have sewed up some pee into a little ball, called a urinoma. Ha. How do you like that for modern medicine?
That’s about it. We’re scheduling an ultrasound for next week and just keeping our fingers crossed. And we feel good.
We have reached consensus and we feel good.
We will adopt the “watch-and-wait” approach as advocated by our UH team over the “find-out-at-all-costs” approach as advocated by St Jude’s.
Here’s the low-down: First, and perhaps most importantly, this shadow has been on Austin’s kidney for the past two years. I know many of you are thinking, “Wait! What about the ‘clear scans’? What about ‘cancer-free’?” Every time he’s had a scan and every time Jeff has sat down to review it with us, he has stated very clearly that there are abnormalities in Austin’s kidney. There are shadows and dark spots and unidentified areas. Austin’s kideny does not look like any other kidney they’ve seen, mostly because it’s been subjected to such harsh treatment. We have looked past many of these shadows because we simply can’t get caught up in every little thing, until recently when this one showed some slight changes. It didn’t necessarily grow (hard to tell exactly because of the fact that Auston’s insides are three-dimensional while the scan images are two-dimensional) but it darkened and shifted position. Anyway, the important thing we came away with today as we sat in front of eight scan images at a time, is that it has changed very very little since September 2007. Very little.
Which means it might not be cancer at all.
But it might be, of course. That possibility remains and is still foremost in our minds. But we ultimately ran through all the “if. . .then” scenarios and watching and waiting seems to cause the least harm under all circumstances.
If it’s cancer, it is clearly growing very slowly. It has also never spread and so the chances of it spreading remain very very low. Also, and this is another key point in our decision-making process, if it does turn out to be cancer, it would be safest in terms of long-term survival and reducing the risk of recurrence if we remove the entire kidney. This means that attempting a kidney-sparing surgery, best done when tumors are as small as possible, isn’t even necessary. Which removes a lot of the urgency from the entire situation. If we wait a few months and this little shadow starts to grow, well, then we’ll assume it’s cancer and then we can go in and do a surgical rescetion. And we won’t be any worse off for having waited.
As we worked through all the options, the surgeon asked us to think about what outcomes would make us feel worst about the choice we made. And there were two: The first is that we leave cancer inside him longer than necessary and it spreads or turns into a worse, harder to detect or harder to treat type of cancer. That is clearly, hands-down, the worst case scenario. But they all heartily agreed that that is extremely unlikely to happen.
The second thing that would make us feel just awful is if we overeact and do some sort of surgery which destroys the kidney (either intentionally or accidentally), and then we find out that whatever it was inside him wasn’t cancer at all and we’ve put him and ourselves in a horrible dangerous situation for no good reason. That, they all agreed, was considerably more likely to occur than the first.
There was a lot of additional discussion around surgeries and biopsies, which I’ll explain in the next few days (I’m tired!), but we ultimately decided to do ultrasounds once a month and CT scans every three and regroup if we notice any changes. The ultrasounds are non-invasive and not at all dangerous and can be done as out-patients. They’ll show if the shadow has grown but won’t show any other changes (ie, color or position) which is why we’ll continue on with CTs.
So, we walked away feeling confident in our decision and much relieved about what lies ahead. There are always doubts in this process; nothing is ever certain and there are no guarantees. We may make mistakes or we may get lucky. But we are doing what feels right to us as his parents, at this particular moment given the information we have.
Tonight, I lay in bed with my children as Braedan read a bedtime story to Austin which involved slowly sounding out the word barf and the two boys squealed in hysterics and Braedan went back to the beginning of the sentence over and over and over just so he could get to that word barf again and again and again, and I thought, “Life is good.”
Life is good.