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. . . home!

Did I really complain two days ago about how tough this little guy has had to become?  Well, today I am ever so thankful for that toughness because he is recovering beautifully and they released us this morning. So much for ten days!

Austin’s napping in his own bed, I’m about to go parent-help at Braedan’s preschool, tomorrow we’ll color Easter eggs and life goes on.

Ah, somehow this boy keeps surprising us all. And this time with good news.

The lymph nodes came back clear, negative for cancer, which is the best possible outcome we could have received. The tumor that we originally went in for was Wilms’, but it looked similar to typical Wilms’ tumors after they’ve been treated with chemotherapy. This means it’s possible that this particular tumor is not a recurrence at all but was actually in him in some form during treatment. We’ll never really know if that’s what happened or not and it doesn’t impact how we’ll move forward but it would change the survival statistics, which happen to be pretty dismal for recurrences of Wilms’ tumor. (I will talk about that another day because right now I’m just too pleased.)

The other mass that we were afraid was a lymph node infected with his cancer turned out to be a tumor but not a lymph node at all. Again, no one is sure why this happened but it may actually be a part of the larger mass that sort of came loose, as they were found together in a net-like sack. It is, as usual, very unusual. But unusual we will take.

There’s still a possibility that we may do one six-day course of radiation, but we’re waiting for the St Jude’s people to weigh in again. Then we’ll have to think long and hard about the risks versus the benefits. The fear is that we still don’t know what else might be in there or what might appear another year from now. 

But we’ve learned to take things one day at a time and today is a very very good day. Today we exhale, today we celebrate. Today we look to the future together.

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.”

First of all, many of you (with the possible exception of my mother, who believes that a run is always the right answer) will be pleased to know that I took a nap yesterday afternoon and saved my run for this morning, when the snow was only on the ground and not blowing recklessly through the air.

In more important news, Austin’s doing okay. Still no signs of an ileus (which is to say he hasn’t thrown up yet) but he’s only had a few sips of apple juice or water since Sunday night, so it’s hard to tell. With the first two ileuses (ileii?), he didn’t throw up until more than twenty-four hours after surgery. For those of you new to Austin’s story, an ileus is an intestinal blockage that commonly occurs after abdominal surgery. Usually, surgeons have to remove all of a patient’s intestines and then, when they’re stuffed back in, they develop a kink or an obstruction that prevents the patient from being able to eat . . . or drink . . . anything.  There is no treatment and you just have to wait for the twisted up part to slowly untwist on its own, which usually takes three to five days. Now Austin, because he is so darn special and prefers to do things his own unique way, had an ileus after his initial surgical biopsy that lasted seven days and then another ileus after his right kidney was removed that lasted ten days.  Ten long and completely miserable days. So, while the ileus isn’t a serious complication and poses no danger to his health, it is something we would really really like to avoid.

Meanwhile, he just continues to tough it out. He whimpers a little, but doesn’t really cry, even this morning when the nurse removed his foley catheter and had to peal a good ten pieces of tape off his inner thigh. People are always commenting on how tough he’ll be, and it’s true, he already is. He dives off things and lands on the ground without putting his hands out to catch himself first (sort of reminds you of a little boy named Kirk, huh?). He is the absolute opposite of his big brother who, while impressive in so many ways, is a bit of a wimp when it comes to pain and suffering. Mark and I often shake our heads in amazement and laugh at Austin’s ability to shake things off and bounce right back up after a huge fall.

But it doesn’t seem right to me. I don’t like that he has to tough it out, suck it up, just deal. He’s only two-and-a-half; he should cry when he gets hurt, he should fight back when some stranger appears in his room early in the morning to draw his blood. These are not things a child should get used to. These are not things that should ever become normal. It is not right.

Well, the surgery was considered a success. He’s recovering just fine, right now lying in Daddy’s arms asleep to the sounds of the Indians season opener in the background. No PICU, just a nice big room on our regular floor. His kidney looks fine and does not seem to be involved in this recurrence, which is good. The surgeons biopsied a small lesion on the top pole of the kidney and it turned out to just be normal kidney that has darkened due to scarring. Also good.

They feel confident that they removed the entire tumor, which is now being sent off for a full pathology/histology report, the results of which we hope to get on Wednesday or Thursday. Also good.

But (there’s always a but, isn’t there?), there seems to be some involvement with the lymph nodes. We are awaiting a lot of information from the pathology but they found one “thing” floating near the tumor that at first seemed like a lymph node, which they removed. When they did a frozen biopsy on it right then and there (which gives you some quick information but not a complete picture), its cells were mostly Wilms’ tumor with rhabdomyomatous differentiation (Austin’s rare variant) without much “lymph node structure” at all. I’m not entirely sure what this means but it sounds like we’re waiting to see whether this thing is cancer that has spread to a lymph node or just another cancerous tumor. “Just another cancerous tumor”?  That sounds absurd, I know, but would indeed be better than if it has spread to the lymph nodes. They also removed five other lymph nodes, which they’re pretty sure actually are lymph nodes, to compare them all with each other and with the unusual one. Are you confused yet?

We’re all a little confused, doctors included, (Jeff said the other day, “We’re already well beyond two standard deviations from the norm with Austin”)  but are hoping that the pathology report will provide some clear answers. Depending on what those answers might be, there is still a possibility that he could receive radiation. It would be targeted specifically to the site of the tumor(s) they removed today, which has been marked with a titanium clip. This would be better than full abdominal radiation but could still damage the kidney. Again, we just don’t know enough yet to start preparing for any of this, mentally or otherwise.

It’s hard to know what to think or feel.  A lot of today was good. He looks fine and has mostly just been sleeping, interrupted by brief pleas for apple juice. Knowing Austin, I imagine he’ll be asking to go to the playroom by morning. Mark is there for the next few hours, since I’ll be the one to stay the night, so I’ve come home to go for a run. But I am looking out my window at fat wet snowflakes, which happen to be blowing horizontally.

So again, we’re back where we were two weeks ago. We wait and we worry and we wish. And then we wait and we worry and we wish some more.

Last night as we were leaving Braedan at my parents’ house and were all standing around hugging and saying long goodbyes, my dad and I hit upon the realization that today could be the day that we finally rid Austin of his cancer.

Today is our day.

Here we go again. We’re packing our bags, bringing Austin’s comfy pillows (which are so much better than the plasticky ones the hospital uses) and all his lovies, who he refers to as “my guys.” His guys include, among other assorted stuffed animals, Cookie Monster (“Cookie Mah-mer”) and Koala (“Kah-wa-wa”). This time we also have the single-cup coffee maker from Mark’s office, which will make mornings so much more pleasant —  trying to carry a recovering toddler attached to an IV pole and a hot cup of coffee down the hall always ends up a tragi-comedy.

We’re feeling pretty good about this, although it carries with it all sorts of risks.  Because it is a major surgery, they have to use those lovely words that my ears have heard too many times: “potentially life-threatening procedure.” But he is in excellent hands and we’ve done this before, so I nod my head and sign my consent yet again. There is also the possibilty that what they find when they open him up is worse than we thought and they end up removing the kidney as well. Austin would then begin dialysis and wouldn’t be eligible for a transplant until he’d had two years of clear scans. As you might imagine, you don’t want to stick a nice new organ in a potentially cancerous cavity. I try not to think too much about this as it is pretty unlikely to happen tomorrow and the thought of just beginning something so horrible after all we’ve (he’s) already been through is almost too much to bear. Almost.

We’re due there at 6am and surgery is set for 7:15. Mark and I will then wander around the hospital for hours on end, flipping through old celebrity magazines and checking email on our his-and-her iPhones.  If all goes well and we can avoid the PICU, we should be back on Rainbow 2 by early afternoon, settling in for a one-to-two week stay.

Austin. Cameron & Braedan, getting ready for their early egg hunt

Austin, Cameron & Braedan, getting ready for their early egg hunt

 

Baskets still empty...

Baskets still empty...

 

Happy hunting

Happy hunting

 

Braedan and his favorite cousin, racing about in their pajamas

Braedan and his favorite cousin, racing about in their pajamas

 

Look what I found!

Look what I found!

Showing off his jelly beans

Showing off his jelly beans

Mission accomplished

Mission accomplished

 

So now is when I ask you to start wishing and hoping for my little Austin. You probably notice I don’t use the word “praying” even though a child with cancer must be what prayer is for. But it is not what I do. As I’ve said before, I am not a religious person and that is a very gentle way of saying that I don’t believe in God and never have and don’t imagine that I ever will. But I understand and respect that faith is where many of you find strength and comfort in times like these and I certainly don’t hold that against anyone.

I take no offense to whatever well wishes you want to send Austin or send up or send wherever. In fact, I am honored and touched by them. You can say Jewish prayers and Muslim ones, Christian, Hindu, Buddhist, it doesn’t matter to me. You can light candles or recite rosaries or dance under the full moon. I don’t know if any of it works, but if it makes people feel a little bit better, then that’s okay with me.

Mark was raised Catholic and although he is not practicing and we didn’t baptize our kids and he never takes me up on my annual Christmas Eve offer to go to church (I like the music), he still believes. I’ve never seen him down on his knees, but I am certain that he prays for his Austin. And I too offer up my wishes in my own way, usually by finding a bright star in the sky. That makes me feel a little bit better too.

So do what you need to, do what you can. Maybe all these wishes and prayers just float around in the universe, never making it anywhere, but I think the positive energy must be worth something. And it certainly can’t hurt.

You know, as a person who likes words, I am a little disappointed with the word “relieved.” There is no superlative form, nothing to make simple relief that much greater. Happy can turn to ecstatic, angry to enraged, hungry to famished. But relieved just becomes very very relieved.

So that’s what we are right now, good word or not: very very relieved.

We’ve just returned from our meeting with Dr Auletta and, while we know nothing in the world of pediatric cancer is ever set in stone, the plan as it now stands is pretty darn good. Austin will have surgery here at Rainbow on Monday morning with Dr Elder, who’s done two of his previous four procedures. They will remove the small tumor, look for any lymph nodes in the abdomen (although we haven’t seen any on the scans) and maybe biopsy a small shadow on the kidney. And that’s it.

That’s it. No chemo and no radiation because neither has ever proven effective in treating the extremely rare type of tumors that Austin has had. (Sort of makes you wonder why he had chemo in the first place, huh? But that’s another issue.) So for now, all of the experts agree that surgical resection of the tumor is the treatment for whatever it is that Austin has right now.

Of course, there are many risks associated with this surgery, including the possibility that the kidney is more involved than we previously thought and needs to be removed. No one is expecting that to happen and we are doing all we can to protect that kidney. Once they open him up and can actually see what’s inside him, it could turn out that it’s all more complicated than we thought. Maybe the tumor is wrapped around an artery or is attached to the kidney or to something else in there. You know, his scans are very hard to read (and I don’t mean by me, but by the best doctors in the country) because his kidney is so distorted. So it’s very hard to tell what’s normal kidney, what’s scar tissue, what’s cancer, what’s nothing. Hopefully with a better view, we’ll get a better sense of what we’re dealing with.

And, of course, there are all the risks of surgical complications and what will probably be a difficult recovery. They do expect that he’ll develop an ileus,  but I’ll take an ileus and ten miserable days over months and months of chemo and radiation.  We expect to be in the hospital for seven to ten days, maybe more, but this we can do.

This we can do. Two weeks in the hospital will not change our lives, it will not change the open and inquisitive and gentle boy that Braedan is, nor will it change the confident and rambunctious and vibrant boy that Austin is.  Assuming everything goes as planned and assuming no terrible new discoveries are made, we’ll do a CT scan in three months and then every six after that. And ultimately, we’ll be back where we were eight days ago: normal, alive, together.

And lucky.

First things first, the chest CT came back negative, which is positive. One sigh of relief. Also, we’ve scheduled our meeting with Dr Auletta (aka Jeff) for tomorrow afternoon, after which we should have at least the beginnings of a plan in place.

As for now, the boys are thoroughly enjoying themselves. Yesterday, my parents took them to the Great Lakes Science Center and they spent the morning jumping on trampolines and playing in the ball pit. I feel like we need to fit in as many of those kid-filled (and germ-filled) outings before the seclusion of chemo begins. I like to think that I’m fattening him up. I’ve been trying to do this literally, making all his favorite food and offering additional treats, in preparation for the inevitable weight loss he’ll soon experience. But I’m also trying to fatten him (and all of us) up with laughter and joy and time spent running around outside and seeing friends and doing all the day-to-day activities he so loves.

It’s like the little mouse in the book Frederick by Leo Lionni. Winter is approaching and all the other mice are busy getting ready, gathering nuts and leaves and food, and poor little Frederick just sits there, looking at the flowers and watching the sunset. Of course, the other mice get thoroughly annoyed with him and call him lazy and wonder what good he’s doing any of them, just sitting around like that. And then the long winter comes and they’re all together underground, eating their stored food and getting increasingly bored and impatient for spring, when Frederick appears on a rock and starts spinning stories, painting pictures in their minds of blue skies and colorful rainbows and bright flowers and glorious sunsets. And they’re all so thankful that he was wise enough to think ahead like that and prepare in such a wonderful and unexpected way.

So, that’s us, fattening up on love and laughter and sunshine. Speaking of, I’m on my way outside….

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