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Austin has fully embraced our fill-every-moment attitude.  The other day when we were bouncing on the trampoline, he shouted from mid-air, “Let’s have the most fun ever!” And then proceeded to berate me if I wasn’t laughing loud enough. “Let’s laugh, Mom … you too, Braedan! You’re not laughing enough,” like the drill seargent of joy.

On Saturday, we took them biking on the Towpath after first riding the Cuyahoga Valley Scenic Railway, as part of their Bike Aboard program.  The kids were thrilled, although twelve miles proved to be a bit much for Austin.  Luckily Daddy was nearby to lend a hand — literally, reaching out and holding Austin’s hand on every slight uphill. That night at dinner when Mark asked him if he’d liked our surprise adventure on the Towpath, the clever boy replied, “I liked the tow part.”

On the train

Too cool for athletic gear


The  it was off to our niece’s princess birthday party, complete with swimming in the pool.

Look at those pipes

We are feeling a bit desperate, like we need to fit in as much summer and swimming and bike rides and, yes, laughter as we can before . . . , well, before.  So we’ll head to Chautauqua after this weekend’s baseball games. And we’ll just keep having Austin’s versions of “really much fun” as long as we can.

But I feel beat down, so much more pessimistic than I have in the past.  Every other time we were on the verge of cancer, I felt certain it would turn out fine, certain that it wouldn’t end up being cancer after all. And every time, it was. And this time, I feel the opposite; like I don’t see how this could possibly be anything but cancer.   But there’s still a tiny glimmer of optimism in that I hope that, since I was wrong in the past, I’m wrong this time too.  That maybe my instincts just suck and whatever my gut says is way off base. That would be awesome.

Yesterday went mostly well. “Mostly” because there’s never been a time we’ve had scans when the response is simply, “Perfect, great, everything’s just ducky.  Go on your way now, you healthy normal people.” No, not quite that.

First, he had the follow-up with the radiation oncologist which was fine (actually a lot like what I said above). Then the abdominal ultrasound which lasted a good two hours including the long wait time between being seen by the technician and being seen by the actual doctor (I’ve never really understood why they bother with the technician at all if the doctor just has to come and do it all over again, but anyway . . .). There is nothing new in the kidney, which is obviously good news. But there is a spot in the liver. Now, don’t freak out, it’s not a tumor. Or at least we don’t think it’s a tumor.

It’s more blob-like, where tumors tend to be round (heard that one before, right?). The radiologist thinks it’s most likely “fatty infiltration of the liver with focal fatty sparing” which makes the spot. Whaaattt? I can’t explain it any better than that but it’s not anything to be alarmed about, a not dangerous and not uncommon side effect of chemo. But of course, we can’t be positive that’s what it is based on ultrasound alone.

Which brings us to the never-ending and always tricky question of what to do next. The least invasive way to find out what it is is to do an MRI. Unfortunately, Austin can’t have an MRI with a GFR under 30, nor can he have a CT scan with contrast. There’s a liver function test he could have but it would expose him to a lot of radiation, something we maxed out long ago. Then there’s the possibility of accessing it with a needle biopsy, which comes with all sorts of risks of its own.

When I discussed these options with Austin’s oncologist yesterday afternoon, we still hadn’t done the chest CT (which involves no contrast allowing Austin to still get it). Our first order of business was to make sure there were no suspicious spots or blobs in his lungs. If there were, that would be a huge sign that cancer had indeed spread. Well, luckily, I learned by 6pm that his chest CT was clear. That put us at greater ease about the liver because when Wilms spreads it usually appears first in one lung, then the other lung and only finally in the liver.

Ultimately, our oncologist recommended that we simply wait and re-image in another month. There are a whole bunch of reasons this option makes the most sense: One, it’s probably nothing. Two, all the methods of determining what it is pose risks to Austin. Three, if it actually is Wilms that’s spread to the liver, there’s not much we can do about it. Really, that’s the kicker right there. I mean, in a sick kind of way, what’s the point of us having that information? What am I gonna do with it? I suppose I could pull the kids out of school and make sure they see all the beautiful places of the world. I could take Austin to Disney World for his 4th birthday. I could work extra hard to ensure each day had more laughter than tears.

But I do all that already. I already take them swimming every time it’s hot or say yes to the after-dinner bike ride to the duck pond or park. I’m already thinking about taking him to Disney World for his 4th birthday. I already work extra hard to outweigh the daily scowls with smiles. Life seems short and fragile enough, no matter what a needle biopsy says.

As I was on the phone going over all this with the oncologist, he said that they just got a new computer system that generates data in a different way. As he was scrolling through Austin’s record, he could see a graph that showed that Austin has been treated for cancer in thirty-three out of the past thirty-six months. This struck him and, while it didn’t make his decision for him, it did make him wonder about how much he can do for a patient versus how much he can do to a patient.

Mark and I have learned, in these three long years, and Austin’s doctor has learned too, to make decisions for Austin. And I don’t mean to make them on his behalf. I mean to make them for his own good.

This is like some big cosmic joke.

Last night was fine: typical, long, with many interruptions for checking blood pressure and administering medications.  In between the two bags of blood, he was given a diruetic to lower his blood pressure so he peed through his diaper (twice) and we neeeded to change the sheets at 2am. None of this is unusual; just makes for less-than-restful sleep.

His platelets had finally gone up as evidenced by this morning’s lab work and we had a new plan for monitoring his blood pressure (which I’ll explain later), so we were cleared to go pending one good blood pressure reading. Which we still haven’t gotten. After the bags were packed, we were informed we’d be staying another night to make sure the many tweaks to his meds take effect. I had conveniently run out of insulin and, thinking I’d simply be home soon to refill my pump, hadn’t eaten anything. So, my mom, the other regular player in our musical caregiver game, came to relieve me.

Mark, meanwhile, woke up early and filled my station wagon with all our lawn tools to take over to the old house in preparation for today’s showing and tomorrow’s open house.  (Had you forgotten about that old house? Yes, we had too — basically just ignoring it since our move and hoping it might disappear. After a month and no disappearance, Mark put in a solid three weeks of work, patching nail holes and polishing floors. It just went back on the market last week and we have two scheduled showings plus an open house this weekend so are very hopeful. Anyway . . .) he was heading over to do lawn work and stopped at a stop sign when — Bam! — the lawnmower backed up and the handle smashed through my rear window. Oh lovely. You know even the ever-calm Mark was dropping f-bombs with that one!

Then (because there’s more), after he cleaned the bits of glass out the car and fixed up the yard, he rented a U-Haul truck to transport the rest of the swingset (which had been frozen into the ground on moving day). Buuuuuuuttttt, turns out it was too tall to fit in the truck. Luckily, there were five guys there replacing the furnace (rememeber that little problem?) so they helped him load it onto one of their flatbed trucks and ever-so-slowly drove it the two miles over here. But (there’s always a “but”), just past the very busy intersection of Coventry and Cedar, it fell off!  Simply slid off the back of the truck onto the road! Oh man. Thankfully the person behind them had enough sense to keep a safe distance. They all jumped out and hoisted it back up and off they went. It didn’t even break, if you can believe that.

So, here we are, making room in the backyard for the swingset, overseeing the installation of the new furnace, arranging for a major car repair, . . . and trying to lower Austin’s damn blood pressure. I mean really, it’s like some absurd comedy in which we unwittingly star. Our lives have become something of a joke. Thank god we have a sense of humor.

My sincere apologies (partly tongue in cheek) for not requesting anyone’s help on Thursday night with the whole key debacle. It honestly didn’t even occur to me to ask someone else to do it for me but I promise you I will the next time (although we do try to learn from our mistakes and hopefully there won’t be a next time!). It actually all worked out okay. I bundled Braedan up (in the thirteen degree weather, not 18 like I’d thought) and we drove around looking at the holiday lights while waiting for Austin to be released. At 10 o’clock, we pulled up to the hospital entrance and Mark delivered a very awake and excited Austin to my warm cozy car. The two boys literally shrieked with delight at seeing each other and squealed the entire way home. We let Braedan sleep in Friday morning and I brought him to school after 10.

Next, my sincere apologies (less tongue in cheek) for not updating the Carepage site when I posted here on Thursday. A few people told me yesterday that they hadn’t gotten their email alert and therefore hadn’t checked the blog. I insisted that I had updated the Carepage but when I finally checked it last night, discovered I was wrong (I have a few things on my mind, you know).

And finally, again sincere apologies (again somewhat tongue in cheek) for my multicultural faux pas with the Menorah lighting. Braedan told me last week that Hanukah started “on Friday” and so, fully trusting my five-year old as a valid source of information, we lit the first candle last Friday, the 4th! We had made it through four candles before I realized the start of Hanukah was actually yesterday, the 11th. So much for my attempt at religion. . . .

Enough apologizing (no one wants to hear the cancer mom say she’s sorry, right?). Our weekend has been lovely. Mark and Braedan went to the Cavs game last night (another source of squealing delight) and several of my girlfriends came over with wine and chocolate after Austin went to sleep. There was much laughter and some tears and way too many bottles of wine consumed, which added up to a near perfect evening.

This morning, the boys were picked up by their favorite family friend “Uncle Pauly” who took them on a surprise visit to Dunkin Donuts (“a Dunkie’s run”) for breakfast. Then they went back to Caryl and Paul’s to make gingerbread houses, an activity they worked hard on for many hours. This was good because we had a showing this morning and another tomorrow afternoon — our first  showings in weeks, how’s that for great timing?

Now we’re making lasagna and awaiting the arrival of Mark’s parents. We’ll traipse over to the General Electric plant at Nela Park to see the best lighting display in town, one of our favorite holiday traditions and then show off all the progress on the new house. After dinner, I’m off again with my friends to the alumni holiday party for our high school.

The boys are just delighted with everything lately. Austin is jumping and laughing and cartwheeling (yes, he knows how to cartwheel) more than usual, they’ve been bickering a little less than usual. Our Charlie Brown Christmas tree is up and decorated. Wishing stars have been arriving from near and far. All is good in this house. All is good.

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February 2020
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