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My, what a difference four years can make. Last night was the fabulous Fairfax Cabaret, an every other year talent show that takes place on the high school stage. There’s a full stage crew, spotlights, headset microphones and all the accoutrements of a professional production. And it is so much fun, with everything from piano and violin solos to groups of girls singing and swaying to Beyonce. It is, at its essence, classic Cleveland Heights, capturing all that we love about our school and our district.

Because it’s only every other year (just too much darn work for the PTA to do each year), we’ve only been to two prior to this one. And the first, held in January 2010, was quite a different experience for us. Braedan was in kindergarten, Austin was in treatment, and I was understandably absent from all volunteer activities at school. On this rare occasion, we left a severely immuno-compromised Austin home with a sitter so Mark and I could take Braedan to the big event. It was the end of a horrible week, in which Austin’s mediport had failed during our week of in-patient chemo and he’d had a surprise mediport-repair surgery (“Surprise!”) scheduled mere minutes after he consumed two grapes for breakfast (two grapes!), rendering him unable to be anesthesized for a full and excruciating eight hours. That particular surgery, which was supposed to be “quick” and after which we expected to go home, was instead long and unsuccessful and left Little A with a PICC line instead of a mediport and left the two of us in the hospital for yet another night. We were on edge, exhausted and beat down, by the time we arrived at the high school for the next night’s festivities. I don’t remember much about that particular show, aside from multiple tear-filled conversations with people who innocently asked me how Austin was doing.

But all of this is beside the point, or maybe it is exactly the point, because last night, four short (and very, very long) years later, Austin was up on stage doing this. He’s the first one to somersault toward stage left (your right) and is in the far right of your screen for most of the performance (or the front of the right line of dancers). Click the HD button in the bottom of the screen to get a clearer version.

And of course, we cannot let this review of the night go by without highlighting the brave and confident and funny and super cool Braedan, in his Cabaret jammies:

And now I can confidently look ahead to Cabaret 2016 and Cabaret 2018 and all the years after that.

Long day. Ugh, another long day. Since I don’t have the energy for drama and good story-telling right now, let me cut to the chase and tell you that he has a PICC line after a serious and sustained effort at replacing the Mediport.

He was in surgery for four hours, not quite the “quickie” we’d been hoping for. They attempted to rewire the Mediport, but ran into the same problems the docs had had the first time. Turns out our dear little Austin has a rather unusual vascular system. Really, like this should surprise anyone. Where the rest of us have veins that run straight across our chest, his are a series of zigzags and peaks and valleys. They reexamined his past ECHOs, EKGs and cardio-ultrasounds and determined that this isn’t actually a problem (just Austin’s “unique anatomy”), except when placing a central line. Too bad he’s needed several of them.

They were ultimately able to place a PICC line that dangles out near his left inner elbow and runs up his arm into his chest. Even the PICC line was a relief because that didn’t work the first few tries either and they were actually considering running one through the femoral vein in his thigh. I was seriously disappointed when I walked into the recovery room and saw that bandage on his arm but we’ve already begun to adapt to it and I think it’ll be okay. It can’t get wet so baths will be tricky, involving Press n Seal and lots of tape, but we’ll manage. We also need to flush it with Heparin every eight hours, which will surely cause some scheduling chaos (sleep-time lasts longer that eight hours after all), but again we’ll manage. As long as the damn thing works . . .

He’s still in the hospital tonight, this time with Mark, but is set to be released first thing in the morning. One of the hardest things about the constant changes in our schedule is what it means to Braedan, who clings to the given date and blames us when it changes: “You said you’d be home tonight! Why do you always tell me you’ll be home and then not come home?” So over and over again, I tell him that we don’t like this either and we all have to be flexible and do the best we can. But when you’re six and just starting school, you learn to follow rules, to do what you say you’re gonna do, and you expect everyone else to also.

And poor Austin. He has just been through the ringer. He was feisty all day today. Woke up happy after a great night’s sleep but was then most disappointed not to be allowed to eat and spent a good chunk of the morning screaming for a grilled cheese sandwich as if maybe I just hadn’t heard him the first time. He came out of surgery in an angry fog, and only let up to scarf down two grilled cheeses in a row. As I sat on his bed being trained on how to care for his new line, he was just furious that I wasn’t devoting every second of my attention to him and started throwing his toys at me, including a matchbox car that hit me square in the face.

It has to be extremely confusing for him to have the people he loves and trusts the most inflicting pain on him, or watching as other people inflict pain on him without doing anything to stop it. We’re constantly telling him this is for his own good, “to help make you all better,” but he never felt sick in the first place, so he’s got to be thinking, “All better from what?”  Cancer is a completely vague concept to him, some invisible evil we talk about and fight against but without him ever understanding why.

Maybe that’s the crux of it right there: maybe none of us understand why.

We had a day once, back during the first round of cancer, that a nurse described as The Day of a Thousand Paper Cuts. We were in the PICU following one of Austin’s surgeries and he was on temporary dialysis but the dialysis machine kept breaking and leaking water all over the floor. When a different machine was finally brought in (and these are huge machines that take up most of a hospital room), the catheter in his thigh wouldn’t work. It wasn’t the end of the world; we eventually made it all work out — a thousand paper cuts won’t kill you after all, but, man, do they hurt.

That’s how we feel again today — like we’re being battered and annoyed and delayed and distressed by a thousand paper cuts.

Austin’s Mediport continues to be the source of nothing but trouble. When we did that ultrasound last week, we did find a small clot forming not in the line but near the line in his left internal jugular vein. This clot is not what we were looking for (an explanation for why we can’t draw blood off the line) but it is of course a problem that needs to be fixed before it turns into a bigger problem. And the way to fix it is to give Austin a nice little blood thinning medicine that has to be injected under his skin twice a day for three months. And I was worried about those Neupogen  shots once a day for a week! Ugh.

But that’s just the beginning. Today they did another chest x-ray to see if they could further determine how usable the Mediport even is. And it’s not. Not usable, that is. Its position has shifted slightly over the course of the past month and it’s now lodged under his clavicle. It’s still usable for today’s chemo but tomorrow he’s scheduled to have another surgery, albeit minor, to replace the line, which no one is even positive they can do.

If the surgery they’re attempting doesn’t work, he’ll end up with a PICC line instead which runs along his arm. I’m not completely familiar with the pros and cons of all these varied central lines (remember, I’m the one who thought the Mediport would be a breeze compared to the Broviac) but I do know that the PICC line is the third and last choice of doctors and there surely must be a reason for that.

Oh, and now we’re not sure if we’ll even get to go home tomorrow or if that will be delayed until Thursday. Ugh.

Chemo has been fine. Austin was a total grouch today (before his much-needed three hour nap) but the effects of chemo are seemingly non-existent. It’s just these damn paper cuts we have to worry about . . . .

I know this whole Mediport business can be confusing for those of you with no experience in the world of cancer (lucky you, by the way) so I have some visual aids courtesy of my far-from-modest (and sometimes sedated) little guy.

This first picture is from November 2007 of Austin with his Broviac line, which always dangled down like that and needed to be kept under wraps (literally — under an ace bandage and a turtleneck) at all times so he wouldn’t tug on it:

The next two pictures show his Mediport when it’s accessed, meaning that a needle has been inserted into it with an IV line hanging down (the “dangly thing”) ready for use.  You can see that it sticks out pretty far and gets in the way when, say, you want to be picked up by your mom. (The purple marks are for radiation so they know where to line up the machine’s laser beams, as we call them in this house.)

This next one shows the Mediport when it’s not accessed. Well, the Mediport “button” is actually hiding under that top band-aid so you can’t really see it, but you at least get an idea of how much less cumbersome it is:

And this lovely shot is Austin last Friday, showing his distinct pleasure at being less encumbered:

His Mediport does, by the way, have a clot in it — somewhere in his internal jugular vein, confirmed today by ultrasound, which is why we haven’t been able to draw blood off it. Not sure exactly what that means or what we’re going to do about it but we’ll find out tomorrow when we visit the clinic after (his second-to-last!) radiation.

His blood counts have bounced back up so we’re done with the Neupogen shots, which Mark gave beautifully (and quickly) over the weekend — no trauma to either father or son (or mother, whose only job was to hold child tightly in her lap). Well done, Daddy!

It was a good thing we squeezed in those two normal days, sandwiched as they were between much longer hospital visits. Yesterday, he had clinic after radiation, which isn’t bad except that there is so much waiting involved. Waiting for lab work to return, waiting for doctors to be paged, waiting for decisions to be made. It’s just tedious, especially with a three-year old to drag around, feed and entertain. And then today he needed a blood transfusion so this turned into another seven hour day (too bad I don’t get paid for this!). It’s sad when every department I leave, people call out, “Bye, see you Monday!”

But Austin is the constant trooper, managing to find fun wherever he goes.  He’s been a little less energetic (which, in Austin, goes virtually unnoticed) and hasn’t had quite the same appetite as usual, but is still feeling generally fine. His blood counts have dropped significantly since Monday so no more school for a while, but right now he’s sledding with Daddy and Braedan, so who cares about blood counts?

We’ve made it through the first week of Nuepogen shots but I haven’t gotten any better at it. I am extremely slow going in, as I’ve always been on myself (much to the horror and disbelief of those watching me). So when I say we’ve made it through the first week, that’s only because he’s been sedated!  A few of you who are nurses have offered to come over and give him his shots and I will shamelessly take you up on those very kind offers. Better he fear you than me. Plus I trust you’ll be a little quicker at it. He needs one tomorrow and Sunday, around 9 am (which I’m sure we can tweak by a little if necessary).  Let me know if you’re interested — first come first serve!

He had his mediport de-accessed this afternoon before we left. I’m not sure if that’s the right word to describe it but they pulled the needle out so all that’s left is the button safely tucked under his skin. And seeing how happy this made him almost made all those access pokes worth it. He jumped up and down as he announced to Mark, “They taked my dangly thing out! Look, look, no dangly thing!” and then proceeded to roll around on the floor to show how free he was.

That’s my boy.

Today was the first Monday of the new year  . . . and boy, did it feel like it.

I did manage to wake up on time (actually, I woke up every other hour to check the clock), but found many inches of snow burying my car. We made it to the hospital (unlike many doctors who reported two hour commutes), only to find that, yet again, not a single nurse was able to draw blood off Austin’s line. I know, this sounds like a lot of high tech medical jargon that needn’t be part of the story and yet, it always seems to nose its way in. His mediport had been accessed last Friday, after our standing-up-from-the-chair mishap, and we left the line in so he wouldn’t have to be poked again all week.  But then, for the zillionth time since this thing was inserted two weeks ago, nobody could draw blood off of it. And you can’t use a line if you can’t draw blood off it.

Anyway, what it all boils down to is that what should have been an hour-and-a-half appointment turned into a five-and-a-half hour appointment and what should have been completely painless involved three separate pokes through his mediport site (already sore) with a big ol’ needle and a peripheral IV in his hand when all that failed. Plus, he didn’t get his anti-nausea med before the IV fell out of his hand (while we moved his floppy and sedated body around and around into new positions trying to get blood to flow through his line; again, the bedlam you are able to visualize should suffice), so by the time we made it to the cancer clinic an hour later, he was throwing up all over both of us.  Ultimately, all you need to know is that we seem to have fixed the line problem for tomorrow and that it was a huge pain in the ass for both him and me (especially him, but I’m the one who carries that feeling home).

The good news is that his bloodwork came back just where we wanted it and I plan to bring him to school tomorrow following radiation (assuming it doesn’t take an extra four hours!), which we are both very excited for. He hasn’t seen his pals in a month and I think (hope) he’ll just ease right back into his old routine. He certainly still looks and acts like his old self.

As I was recounting the morning’s miseries to my mom she reminded me that, while today went worse than expected, last week went better than expected. And that’s a pretty good trade-off.

Things continue to go well.  Austin has been increasingly cranky as the days go by but it’s hard to tell if that’s because he feels lousy or because he’s just plain sick of being there. He has made several new friends, all “big boys” with whom he races remote control cars or goes bowling on the Wii, so they make the time pass more quickly.

He needed a blood transfusion today because his hemoglobin was so low and you could see him visibly perk up after that (and get his color back). The real reason we’re in-pateint for this round is because he needs to be super-hydrated to help flush out the chemo. And that isn’t even just because of his kidney; anyone getting these particular drugs needs extra hydration. He’s finished with fluids tonight around 2:30 at which point we’re free to go (although we will wisely wait until morning).

So, we almost have this first week of treatment behind us and, all in all, it hasn’t been that bad. The worst parts have been that, thanks to all that hydration, he leaks through his diaper every two hours, making for less-than-restful nights. And we’ve managed to pull out the IV line to his mediport twice.  This is one of the differences from the Broviac that makes it both better and worse. With a mediport, the button is entirely under the skin with no dangling piece unless it’s accessed. But accessing it only happens with a needle poke through the skin. They accessed him when we arrived Monday morning and then the plan was to just leave him accessed all week, since he’d be constantly using the IV anyway. Well, last night he was jumping on his bed, wearing nothing, nothing, but a t-shirt with a chocolate chip cookie in hand (classic Austin) when he landed on his line and ripped it right out.

Happy New Year to us, we had to bring him to the treatment room for a major poke (and some major screams). Then this afternoon, he was sitting peacefully in my lap playing with blocks when I went to stand up and the line was caught on the leg of the chair . . . and out it came. Again! Less than twenty-four hours later. Ugh, like I said it’s always the little things.

He’s now happily playing with his Gram and Gramp while Mark and I have dinner at home (I’m currently waiting for halftime!) and then I’ll head back down for our last night there.

I’d been trying to come up with a good way for the kids to be able to count down the days until  this journey is over. At first, I thought I’d just make them a big calendar with the in-patient days colored red and they could “x” out each day as it passed. But I know that we’ll end up off our schedule, due either to low blood counts that postpone chemo or to the fact that we don’t know yet whether he’ll go through one or two twelve-week cycles of maintenance therapy, so I feared that a calendar would be disappointing and frustrating rather than helpful. I’ve finally settled on filling a jar with marbles, large ones for in-patient days and regular size for other days and letting them move one marble to another jar at the end of each day. This will give them a concrete way to visualize how much farther we have and how far we’ve come. Plus, if necessary, I can sneak a few extra marbles in (or maybe take a few out) depending on how our situation changes without them even noticing.

And we will carry on, one day at a time, one marble at a time, inching ever closer to the end, which could also be seen as The Beginning.

But where does one go to get all those marbles?

Just because you have a plan doesn’t mean things will go according to it . . . .

Don’t worry, nothing major except that instead of sitting around my table enjoying this delicious meal with my family, I am sitting in front of the computer quickly eating before packing my gear for one more night.

Today’s surgery to remove the catheter and insert the mediport was an “add-on” and they originally thought we’d go at 11. Then 12. Then 1. Austin was finally taken off to anesthesia at 3:05 and back in our arms by 5:15.

But that’s not why we’re staying. Because Austin is so small, they were unable, despite several attempts by the chief of pediatric surgery, to thread the mediport line through the vein in his neck. Ultimately they made a new incision and ran it lower down on his torso. It makes no real difference to him or us in the long run but they do want to do a repeat x-ray tonight on the neck to make sure there’s no damage and keep us for observation.

But first thing tomorrow, we are outta there.

And then, back on Monday for out-patient radiation and maybe (this part is indeed bad news) maybe back on Tuesday to start chemo. Chemo this time around is in-patient, usually for four days at a time which would mean . . . you guessed it . . . Christmas at the hospital.

That’s not set in stone yet and there are a few things that could postpone the start of chemo until Monday December 28 (none of which has anything to do with anyone feeling sorry for a child spending Christmas in the hospital), so there’s still hope. It doesn’t matter either way; we’ll just manage. That’s what we do.

February 2020
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February 2020
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