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No, this isn’t about a bad pathology report or anything. It’s actually sort of funny. (Just wanted to set your minds at ease after reading that title.)

You know the whole “pee is pee and pee is good” business and all the stars that include wishes for pee and lots and lots of it? Well, he has continued to pee, now filling diaper after diaper. Late last night, after being moved back to our room at 9, he was in and out of sleep, experiencing a lot of discomfort. He kept trying to shift position to get comfortable but moving, of course, caused more pain. He eventually fell into a fitful sleep and I’d been lying on my “bed” (not really, more like rubber bench with sheets) hoping for sleep myself when suddenly I turned and he was sitting up! And crying.

I rushed over and managed to somehow pick him up in my arms, the first time I’d really held him since Monday morning. He was shaking and whimpering, and we finally worked around all the tubes and wires to sit in the chair. He calmed down and we were talking a bit, looking at stars and his lit-up tree. He said he had to pee and I told him he was wearing a diaper and to go ahead. Well, next thing you know, there’s a warm wetness spreading all over me. Soaked, drenched I was, as in this boy can pee. Apparently he’d been fiddling with this diaper (or fiddling with what’s inside his diaper, more likely) and it wasn’t secured on. I sat there wondering what to do next, how I would manage to change his gown without hurting him, what I was going to wear since all I had was a pair of jeans, when it struck me: This was pee. This was exactly what we’d all been wishing and hoping for. I started to laugh and couldn’t stop. And we just sat there in that chair all sopping wet laughing and laughing about the fact that he’d peed on me. You know what they say . . . (insert title now). I got my smile then too, along with some weak giggles.

Eventually I called our nurse and she helped me change him and brought me scrubs to wear. We were then mostly up throughout the night, dealing with one minor issue after another, from faulty IV lines to painful gas-passing (another excellent sign). Finally, we fell asleep squeezed together in his bed at 5:10 only to be woken by the surgical residents (who may have good hands but not the best bedside manners) at 6:15, who proceeded to tear an enormous and very sticky strip of tape off his wound. Not really pleasant. This was followed by a blood draw. I am continually amazed at how quickly he recovers from the many injustices his small body is subjected to.  He is indeed improving: he’s (obviously) peeing and now even pooping (meaning no post-operative ileus!) and his kidney function numbers are returning to their previously normal range.

Mark relieved me at 8 and I just woke up in my own bed after my most restful four hours of sleep in a good long while. Pathology results are due back at 4, so keep wishing — you can now replace your “pee” wishes with ones for “nephrogenic rests” and “favorable histology.” Maybe those wishes will come true too . . .

Here we go again.

Mark and Austin just left for the hospital and I will meet them this there evening (after updating, running and having dinner with at my parents’ with Braedan). I will stay the night and Mark will return bright and early tomorrow morning. This afternoon, Austin needs a “bowel prep” which is about as lovely as it sounds. They will literally flush his bowels out, which first requires the insertion of an NG tube. Another family favorite, this involves one of us (thankfully Mark this time) holding him tight in his arms facing outwards while a nurse (or two or three) stick a tube up his nose and down to his stomach. Then they pump him full of “GoLightly” (I’m not kidding about that brand name) and he poops all night long. Oh, joy.

He’s due in the pre-op room tomorrow at 6:30, with surgery scheduled to start at 7. I imagine we won’t see him until at least 3 pm, although the doctors will call us periodically from the operating room to update us on his progress. After surgery, he’ll be in the PICU for anywhere from a few hours to a few days, depending on how surgery goes and how (and if) his kidney is functioning. After the surgery that removed his right kidney in September 07, he was only in the PICU for eight hours before returning to the regular oncology floor. But after the first kidney-sparing surgery in October 07, we were there for four days. The nice thing that time was that we were able to keep our regular room the entire time which gave me and Mark somewhere to shower or nap, plus allowed us to leave the wishing stars hanging from the ceiling awaiting Austin’s return. I’m sure the nurses will try to accommodate us in this way again, but it all depends on how crowded the floor is and if they can dedicate a room to a patient who isn’t actually in it.

The PICU is a pretty miserable place. You have no privacy, only a glass wall with a curtain pulled across it. There are lights and beeping machines at all hours of the day and night, not to mention the constant PA announcement requesting emergency help of some sort or other for some child or other. Rest is hard to come by, for both parent and child. So I do hope our time there will be short.

And now I focus your attention on what we’re up against:

There are so many little milestones we must reach before we can claim victory over this beast one more (one final) time. First, the surgery itself. The doctors need to be able to remove all the cancer they see, while leaving the kidney intact. This is an extremely complicated procedure and there are many things that could go wrong. Remember how all the scar tissue has caused adhesions and how the kidney is now suctioned up against the spleen? The kidney could fail (probably by bleeding out) during the actual surgery and then be removed. The doctors could also find more cancer that they’d expected and opt to remove the kidney (after calling us first).

So, if he makes it out of surgery tomorrow with any kidney at all, that’s one small step in the right direction.

Then the kidney has to work, which could take some time. He’ll have lots of bloodwork and we’ll be watching that pee output with an eagle eye for days to come. He may need temporary dialysis to jump-start the kidney. But if it keeps chugging along, that will be our second small success.

The next thing we have to worry about is the pathology of the tumor(s) they’ll remove along with a sampling of lymph nodes. These results, which will determine future treatment, should come back by Thursday. They might tell us that the tumor(s) is the same rhabomyomatous type he’s had in the past which would mean no need for chemo but maybe one three-week blast of radiation (which, yes, could destroy the kidney we worked so hard to save). The results could tell us it’s a “regular” Wilms’ tumor (which we don’t expect) necessitating chemotherapy. They could even tell us that the tumor has unfavorable histology (or anaplasia or displasia) which you may remember me describing as psychotic cancer cells as opposed to the more normal (and treatable) bad cancer cells. If that was the case (again something we don’t expect), we would go back in and remove the rest of the kidney just to be safe.

And then there’s this possibility, which is what I want you to wish for (even if you can’t pronounce it): It could be a nephrogenic rests, those pre-cancerous tumors. If this was the case, he’d need no additional treatment and we’d all pat ourselves on the back for getting it out of him before it turned into another Wilms’ tumor.

So you can see, we have many hurdles to leap over, many mountains to climb, many battles yet to fight. But if anyone can do this, Austin is the guy.

He told me last week that he could do anything. It was when I voiced concern over the height of the furniture he was about to dive off. But he looked at me and stated with the clear conviction of a three-year-old, “It’s okay, Mom, I can do anything.”

So here he is, poised at the top, ready to dive. And he can do anything.

On this day, I know every one of us thinks back to where we were on that morning eight years ago; what we were doing, how we learned the news, who we called first. Everyone has their 9/11 story, just like everyone of older generations has their Pearl Harbor story or their JFK assassination story. But I always think, as we mark this day anew with each passing year, about the other meanings of this date. Lots and lots of things have happened on September 11’s, good things and bad things, big things and little things. People have gotten married, people –several that I know — celebrate their birthdays, people have died in ways completely unrelated to terrorist attacks. 

We have our own September 11 story, one very different from the national story. It starts on Tuesday, September 4, 2007, the day I called the oncology department to tell them that I thought that maybe, just maybe, could it possible that Austin’s tumor was growing. We had just been in the out-patient clinic the Friday before, his doctors had all looked at his belly during a super long day of chemo. But over the weekend, it seemed to be magically growing, something I didn’t really believe was possible (he had four weeks worth of chemo pumping through his small body after all), something I didn’t want to believe could be possible. But by that Tuesday, it was hard to deny any longer, so I called and brought him in and they all looked and asked questions and quietly consulted with each other in the hallway before admitting us to the in-patient floor.

The next morning, Austin had another CT scan and then there was that moment. A moment I’ve described in many previous writings because, well, because it was a pretty significant moment. In they marched, six of them —  oncologists, surgeons, nurses — to break the news that Austin’s tumor was indeed growing; in fact, it had grown by a whooping 50% and was now the outrageous and hard to fathom size of a butternut squash.

That was September 5. Not a very good day. Then Friday September 7, the tumor and the right kidney were removed. That was a good day, a day we breathed deeply and allowed ourselves to rest for a brief moment. But the news we needed, the pathology results that would explain why the tumor had grown so terrifyingly quickly, and that would determine the rest of Austin’s cancer treatment and that might determine the rest of our lives, wouldn’t come back until the following Tuesday.

I do not have the writing skills to begin to describe how excruciatingly slowly each second ticks by when you are waiting to hear whether your child will live or die. Those six days, between when we learned of the growth on September 5 and when the results were finally returned to us on September 11, were definitely the longest and most stressful days of our lives.  We just needed to know. Good or bad — and we fully expected bad because that was the more reasonable thing to expect at that point — we just had to know. Waiting was almost unbearable.

And then Tuesday, September 11 was upon us. This was the day and it happened to be one with a date synonymous with tragedy. I actually considered calling our oncologist and telling him to wait, wait until Wednesday, a day with an ordinary date, to share this news with us. But I knew that was silly; the facts would be the same no matter what the calendar said. And we just couldn’t wait any longer.

And then Dr. Jeff appeared, bouncing like a child, excitement, relief, joy spilling over his professional doctor persona. Austin would be fine. Austin, as you know today, two September 11’s later, is fine. But it changed the day for us. Changed the meaning of an already significant date.

Alongside our sorrow for all that was lost on this day eight years ago, we celebrate all that was saved on this day two years ago.  Alongside public commemorations, we have private ones. Alongside paying our respects, we pay our gratitude. In our house, this day is a good day. A very good day.

No official news yet. We are meeting with Jeff at 5 o’clock since he’s working in the PICU today, and I am getting increasingly nervous. I’d been feeling pretty good, mostly because Austin wowed us by taking a few steps and eating a plate of mac and cheese! Did I mention how tough he is? He was thrilled with the applause he received from several doctors and nurses when he announced that he’d farted, which is a good sign he doesn’t have an ileus. Wait til he poops — we’ll probably throw a party! (Oh, there will be much work for me to undo all he learns at the hospital. . . )

So I was feeling good, heartened by one doctor who thought we might get to go home tomorrow or the next day. But then I talked to Jeff and heard something in his voice, a hesitancy or nervousness or something. I’m probably reading too much into it; he is working in the PICU after all and dealing with lots of families on the edge of disaster. I just need to wait. It is strange to think that he and the pathologist in Washington state and various doctors tucked away in offices scattered throughout the hospital know the fate of my child and I just need to wait.

I keep recycling old lines from our first round with cancer, but this one, taken from a Carepage posting on September 11, 2007, as we awaited pathology results after the horrifying growth of Austin’s primary tumor, keeps popping into my head:

“Don’t even know what to wish for. But wishing nonetheless.”

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