Tag Archives: cystic fibrosis

Child’s Play 2006

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This year, the Children’s Hospital of Philadelphia finally finally finally got involved in Child’s Play and while I don’t honestly expect anyone to give me anything in exchange for this scrawly comic and whine-fest that I host, with the holidays coming and much stuff going on, the best present you-the-reader could give to me would be to give to them.

Why, you ask?

Well, as has been mentioned before, my husband has Cystic Fibrosis. (As does Lila’s husband Cole in the comic. Coincidence?) Nighthawk’s been treated at CHoP. He’s been hospitalized at CHoP. He’s become healthy again within their halls. And he’s been bored senseless in between.

Hospitals look scary when you first get there, especially where emergency rooms and stuff are involved, but really most of the time they are boring. Sometimes you’re so sick you don’t care. Other times, you’re so healthy that you can get up and wander around and make trouble scaring the nurses by drinking apple juice out of the plastic urinal bottles. In between, you’re too tired to get up (or not allowed because of IVs or tests or whatever), and you’ve already seen everything on TV (or can’t afford to have it on) and you filled up your coloring book and you can’t even hang out with the other kids because you’re contagious or they are or maybe they’re too sick to play. And when it’s over the holidays and your folks are strapped for cash because you’re in the hospital and they have to miss work and they have to pay ridiculous co-pays on the insurance and Philly isn’t anywhere close to where you actually live, and gas isn’t cheap, well, it sucks big time.

So if all you do this winter is buy one book, or one video game, or one movie that’s going to keep a bored and sick kid a little happier, well, you’ve done something that looks little but is actually very big.

(And you don’t have to give to CHoP — you could give to any Child’s Play hospital. Or to any other hospital that’s put a wish list up on Amazon. Or just to your local hospital. You know, whatever works for you.)

As for me, I have some money I’ve saved up for charity that I have to go spend now. Thanks!

An Update: He Lives!

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Monday:
Arrived at the hospital at 7:30. Pre-op started around 9. I read all of Dragonsblood between 7:30 and around 1. It’s worth the read, and is especially good when coupled with an iPod to drown out the soap operas in the waiting room.

(Side tangent:
Seriously, I swear that hospitals ought to be banned from being allowed to show soaps in waiting rooms. It was bad enough that I was subjected to a couple horrible morning shows and a portion of the New York Columbus Day parade when I was in Philadelphia. But it was followed by absolute horrors on the soaps.

  • First, lots of bawling from this grown man whose daughter was in a hospital bed for Lord knows what fabricated reason. Also: some woman lost a baby, and I don’t mean she misplaced it.
  • Then, the next show takes us into the middle of some dead guy’s funeral. Because what we all really need to see when we’re in the surgery/ICU waiting room, with our own personal levels of drama and trauma to deal with, is a bunch of people mourning with the melodrama dial set on “high”.
  • As if that wasn’t enough, the next show started with some guy being drug to his feet by his daughter after having his head all but bashed in by some unknown assailant, and ended with a nice-looking guy who was just trying to ruin someone else’s relationship collapsing on a porch. Sort of like the woman who’d had the stroke, whose kids were sitting a few chairs away from me.
  • And then there was Oprah, who felt it necessary to tell me things about the human body I didn’t want to know.

NOT HELPFUL.)

The TV update-you-on-your-spouse-in-surgery thing in the hospital indicated Nighthawk was in recovery (post-op) by 1:15, which coincidentally was just a little before his mom and brother arrived. I popped out of the waiting room just long enough to greet them, get some yogurt, and totally miss Nighthawk’s doctor, who instead called me and let me know everything went incredibly well and he should be placed in a room soon.

By 4:00 we were hearing rumors that there were no beds available, so I finally cornered a nurse who invited me back to Recovery to see Nighthawk. He was understandably grouchy that he’d been counting holes in the ceiling for three hours. Since he wouldn’t waste energy being grouchy if he was in serious trouble, I took that as a good sign.

Nighthawk didn’t get a room until 6:30. It made for a long day, and he hadn’t even met his nurses yet.

On the other hand, once he was finally upstairs everything was great. I cannot say enough positive things about Presbyterian Hospital or the staff that we dealt with. They had a lot to manage, between the thyroid removal, the cystic fibrosis treatments, the diabetes treatments, and the fact that Nighthawk was running about 4 hours later than anyone’d expected just to arrive, but they did a great job of making him comfortable, making sure he had everything that he needed, and setting our expectations for the night. Nighthawk’s nurse even hunted down a recliner for me to sleep in, so I could stay there with him overnight.

Tuesday:
We both caught some frequently-interrupted sleep between the end of Monday Night Football and 6:45, when the first doctor arrived to scope him out (literally) and remove the drain in his neck. After some blood work, a healthy breakfast, another check-in by the docs, and the usual rounds of meds they declared him healthy enough to leave, and he was given his discharge papers before I could even finish my (admittedly late) breakfast.

We were in the car and on the way home by 10:30 yesterday morning. Nighthawk was comfy in his recliner by noon, and I was off fighting with an idiot pharmacy where nobody can count until around 3.

Today:
So how is he? He still hasn’t gotten his whole voice back yet but he hasn’t been in any significant pain the whole time (hasn’t even been on pain meds for most of the last two days) and is in a good mood. He’s still pretty damn tired, which I pretty much expect.

To be clear, having the thyroid removed is not in and of itself a cure for thyroid cancer. There’s still much to be done, including treatments with radioactive iodine and scans and balancing of new medications. Whee. But the first hurdle has been surpassed, and we get a short break before the festivities continue.

And how am I? Relieved. And exhausted. Possibly as exhausted as he is. My day today consisted of calling back various doctors to schedule various follow-up appointments, and then visiting my own doctor for another round of battle-the-sinus-infection. (My in-laws, who had awesomely taken JessieDog for the overnight, also stopped by to return her today.) It’s currently just after 11:00, a time I could easily stay awake past two weeks ago, and I’m barely awake enough to write this post.

Tomorrow I go back to work. Tomorrow night I might get working on Saturday’s comic. With luck everything goes back to on schedule from this point forward.

Every day is a new adventure. This week has been a set of adventures I’m glad to say I had overestimated. Thanks to everyone who’d sent their prayers, positive vibes, or whatever, in our general direction.

So. Um. Yeah.

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Nighthawk’s been diagnosed with thyroid cancer. He’s having surgery to have his entire thyroid removed on Monday.

So now that you’ve picked yourself up off the floor, here are the details. Thyroid cancer itself is rare but very treatable. It was caught very early. From all indications this should be a case of cutting out the thing that went bad, probably doing some radiation treatments that are standard to the disease, and moving on. He’ll be on drugs the rest of his life, obviously, but he already is (obviously), just for other stuff. The CF and the diabetes certainly complicate matters, but outside of the constant challenge of making sure that each doctor understands the pieces the other doctors specialize in, in this case neither issue directly affects the cancer surgery or recovery.

He’ll likely spend about 24 hours in the hospital. He’ll be home for a total of about 2 weeks if everything goes according to plan.

Obviously this is not minor surgery and we’re both very concerned. On the other hand, there are thousands of people who’ve come through this with nothing more than a new thyroid drug or two to add to their regimen. We’re freaking out in controlled bursts instead of constantly.

So why am I telling you all of this? Well, for one, the comic is half imagination and half journal comic, and as today’s edition illustrates some aspects of this new turn of events are going to bleed through.

In addition, it should be obvious to everyone that he is by far the highest priority in my life, so there’s a chance the comic will be delayed or skipped for medical events. (Right now I give no guarantees for a Tuesday comic.)

And there is a piece of me that, as an author, thinks y’all are going to think it’s over the top to have the character with cystic fibrosis also get diagnosed with thyroid cancer. Believe you me, I’d’ve never planned it this way. It is over the top.

Thanks for reading.

Up and down the rollercoaster

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So much to tell you, so tired, this’ll be quick.

On the plus side:

There are comics in the queue, and more on the way, and lots of ideas firing off in the brain cabinet.

Also, everyone is healthy, the diabetes thing is progressing without major incidents, we’re all good.

Plus, I’ve been coding again (more on that in next post) which makes me happy. Tired, but happy. The project itself looked like it was going to be a lot rockier than it turned out to be, and success is iminient.

On the minus side:

I’m on Day 2 of a headache that may be sinus, may be migraine, but is definitely HURT. It’s much better than it was thanks to the care provided by my totally awesome husband, but still lots of hurt.

The coding and the headache have set me way behind on a knitting project for which I was way behind anyway.

I haven’t heard from my sister on what’s going on this weekend yet. (HINT HINT!!)

And, oddest of all, we found out today that Nighthawk’s primary specialist passed away suddenly on the 23rd. He was a good doctor, and a good man, and it’s going to be very strange to go to the office and see someone else after over five years of care.

So, as always, we’re riding the rollercoaster of human existance. But you knew that.