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Here we go again. There’s something about having a procedure postponed that takes away a bit of the nervousness surrounding it and replaces it with a feeling of let’s do this already. It happened to us back in September/October of 2007 when Austin went in for a major surgery to remove tumors off his left kidney and we were all so worried, but after they put him under and opened him up, they discovered an infection inside him and delayed the whole thing by a week. By the time that long in-patient week had passed, we had forgotten much of what scared us about that risky surgery and just wanted to get it over and done with.
So, I think that’s how we feel about today’s MRI. Let’s do this. Give us some information already, point out the path ahead.
Just in case you felt stupid after reading last week’s post about anesthesia versus sedation, know that I had to google the official difference between the two. I should know, because Austin’s done both many times over, but when I tried to explain it to anyone I realized I couldn’t do it accurately. All I could have told you for sure was that anesthesia takes place in Peed Surge (pediatric surgery) on the 2nd floor and sedation takes place on the 4th floor in the let’s-be-very-clear-here Sedation Unit. I do know that Austin has more trouble coming out of anesthesia than he does coming out of sedation. After being sedated, he usually feels groggy and disoriented for about five minutes. With anesthesia, that grogginess and the nausea that accompanies it, can last for an hour or more.
He will also have a breathing tube inserted as is common practice with anesthesia. This is the crux of why they’ve opted for this route over sedation. With both, your airway can partially collapse, which caused the worry over Austin’s breathing last week. Being intubated will obviously take care of that worry (and give him a very sore throat afterwards). So, needless to say, we’re in for a long day today.
But not quite as long as it was going to be. He was originally scheduled to begin at 2:30, after going on his field trip, which his class happily changed to a popsicle-and-jello-only event. But just yesterday, I got the call that we should now arrive at 10:30 (you should’ve seen my face as I was listening to my doctor’s message that started with the words, “Austin’s MRI has been rescheduled again…”). So I’ll shortly be waking the boys for an above-mentioned healthy breakfast (yes, they’ll both be eating popsicles and jello for breakfast) which must be safely consumed before 8am. Then Austin will head off to the playground for one hour, with no food or drink in sight, before Mark and I bring him down.
And then, well, then it will be a long day of waiting, I’m sure. I’ll be bringing a laptop to type more stories from the Fairfax students, which is what I’ve been doing nonstop for the past few days. Sixteen volunteers came to the Typing Party on Monday night at Lake Erie Ink and we plowed through at least half in three hours. But that leaves an enormous half stacked here on my couch, which I’ve been foisting on innocent bystanders who are too guilty to say no to me.
And hopefully, some answers. Please go back here to remember exactly what to wish for. Being in a state of limbo has been, as you might imagine, exhausting. But I stand by the fact that if the news is bad, I’d rather it be delayed as long as possible. I mean, think about what limbo actually means: you’re stuck between heaven and hell, not sure yet which one you’ll be condemned to for eternity. I’ll take limbo over being condemned to hell, that’s for sure.
But if the news is good, bring it. I’m ready for that.
Didn’t expect to hear from me so quickly, huh?
Have I ever told you that Austin is a snorer? Like a hear-him-from downstairs-snorer? He’s loud, all night long, snargling and snuffling and waking anyone around him. This is relevant because sedation can be dangerous for those at risk of respiratory failure. We’ve run into this problem before over the years, but he usually needs to be sedated for only a short period of time. For radiation or CTs with contrast, it’s a half hour maximum that he’s actually sedated and only a few minutes in the machine and out of the range of the doctor’s watchful eyes. MRIs can take up to two hours.
We went to sedation today around 12:30, after steering Austin away from food all morning. We had packed a good “lunch” for him to eat around 4pm when he would finally wake up. The nurse went through her procedures and then the doctor arrived. He looked in Austin’s mouth and quickly left the room, returning a minute later with a tongue depressor. He called me over to show me Austin’s huge and swollen tonsils, explaining how this is a problem, and all along I’m thinking he’s just pointing them out, advising me kindly to see an ENT, sharing tangential information. But no. Then he drops the bomb. “We can’t sedate him; it’s too dangerous.”
He has to go through anesthesia instead, which doesn’t hold these same respiratory risks (although is a bigger deal in other ways that I can’t quite explain). Of course, anesthesia couldn’t fit us in today and the MRI has now been rescheduled for next Wednesday. In the afternoon. On a day when his class is going on an end-of-the-year field trip to Beachwood playground that will inevitably include many delicious snacks. Uuuuuuugggggghhhhhhhhh. I will bring him anyway that day, convince the class to hold off as long as possible on putting out the food, offer more popsicles and leave early.
I guess we weren’t quite specific enough with our wishes. Next time, we have to include the date.
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.
We returned home bright and early yesterday morning and things have been remarkably normal. So normal in fact, that I find myself wondering if it was really chemo that came in those double-wrapped “Danger” packages that have to be checked by two nurses against Austin’s hospital name band (which he’s never ever wearing and, if we’re lucky, can be found hanging from his IV pole) to make extra sure they’re giving it to the right kid. This boy has lost not one hair off his head and only the tiniest amount of energy from his body. Not that I’m complaining — if he wants to be asymptomatic, I’m all for it!
We do expect his blood counts to plummet this week (7-10 days post-chemo) which ought to make him irritable and tired and at risk for infection (and therefore sequestered from his usual activities). He’ll have labs drawn tomorrow when we go for radiation (I have two alarms set!) so we’ll use those as a guide for what we’re able to do this week. I’m really eager for him to return to school, albeit on a limited basis, just to maintain some sense of normalcy in his life (and mine). But we’ll just have to play this by ear.
One good piece of news: He’s supposed to get an injection of a drug that stimulates the growth of white blood cells each day for a week after chemo. This is a shot that I’m supposed to give him at home, usually in his thigh (his only slightly chubby part) once a day. He got his first one last night administered by a nurse in the hospital in case he had a rare but serious allergic reaction to it, and then we were planning to start today. You know, I know a few things about injections having had diabetes for almost twenty-four years now. But still, the idea of doing that to my child was not something I was looking forward to. Well, upon the suggestion of a friend, I asked the attending doctor yesterday (who happened to be the chief of oncology) if we might be able to delay the second shot from tonight until tomorrow morning when Austin’ll be sedated for radiation and do it then. He thought this was a brilliant idea! So I’ll bring all the gear with me and inject him while he’s totally out, oblivious to everything. It’s only going to get us through this first week and then I’ll obviously have to figure out how to do it on a squirming screaming child for the rest of chemo, but at least I should feel like a pro by then. Such a relief.
Speaking of reliefs, this whole past week has been a relief. Such a huge weight off our shoulders to know we can do it; to have made it through with such flying colors. I know it will get worse; in fact the next round includes a new drug that I’ve heard is a little rougher in terms of nausea and vomiting, but at least this first week is behind us. This lets us stand tall and move forward with confidence instead of cowering in fear and dread.
You’d think I wouldn’t need reminding by now, but Little A sure is tough to keep down.
So, it’s that time of year again. We head into the hospital tonight after dinner to hydrate Austin for another CT scan tomorrow. His last was in the end of June and if this one comes back clear, we’ll be able to wait six months until the next (a welcome break to be sure).
We’re going to try this one unsedated, now that he’s three, which I think will be fine. The real reason we’ve been sedating him is so they can run a tube down his throat and give him the contrast he needs to “drink” for the abdominal scan (not easy to do on an unsedated child, I can tell you from experience). But this time they’ll mix it with Gatorade and let him sip away for a few hours, which I imagine he’ll enjoy since it’s the only thing he’ll be allowed to eat or drink all morning. Then Mark will stand on one end of the machine and I’ll stand on the other and we can even hold his hands while he moves through it. He’s done that part unsedated once before when he just needed a chest CT (which doesn’t require drinking the contrast). He’s also scheduled for an ECHO in the morning to check for possible heart damage from one of his chemo drugs.
We’ll hang out in the hospital for six hours after the scan to continue IV hydration and should be home tomorrow evening. The boys have both been promised a hospital cafeteria corn dog for dinner tomorrow, so they are plenty excited!
This afternoon, Braedan and I will make another glittery wishing star to hang from Austin’s ceiling and then it’s back to the old routine: wish, worry, wait . . . and exhale with relief when the good news is announced. Thanks for doing the same.
Who knew the hospital could be such a good time? All afternoon yesterday Austin was asking when it would be time for us to go, and then throughout dinner, he was pestering me and Mark, “When go hop-a-bul? Awtin reeeeeaaaaddddy.” He was fabulous all through last night, complaining only briefly when the IV line was inserted and then delightedly playing with the buttons on his bed. A bed he slept in all by himself (a far cry from the early days when Mark or I were forced to hold him, standing up, all night long) until 7 this morning when someone came in to draw blood–not a very nice way to wake up, mind you, but he toughed it out.
My dad relieved me long enough this morning so I could eat breakfast and take a shower at home before heading back. Then we were off to sedation, where I learned that once Austin turns three and can be trusted to drink the oral contrast himself instead of having it pushed through an NG tube down his nose to his belly, he won’t need to be sedated anymore. So that will take away one long and unpleasant step in this process for us.
The scan was fast and simple and after he managed to shake off his grogginess and eat some lunch, things were back to normal. Jeff found us mid-afternoon to report that the scan was clear, news that was expected but of course very welcome. So we make it through another milestone, one more thing to check off on the road to recovery. We know, as always as always, that this clear scan does not guarantee that there is no cancer growing inside him, but it’s still a good sign and one we’ll happily take. We’ll do another in three months, after Austin’s third birthday and two years since the beginning of the journey. If that one is also clear, we’ll wait until March, which will be two years since the official end of treatment and one year since this last “episode.”
I’ve just returned home (and straight to the computer) after Mark came from work to the hospital . . . with a corndog in tow (Austin’s special request from the hospital cafeteria!). Austin has one more hour of IV hydration and then they too will be home. I’m about to go pick up two important things: Braedan from my parents’ house and our favorite pizza.
And then we’ll be home together, a happy healthy family of four, cancer-free.