Don’t tell Josiah, but we’re headed to Disney World with Make-A-Wish.
Many of you know that our son has been in a fight with brain cancer since turning six months old. Now, at four and a half years old, we’ve been extremely blessed that his cancer has been stable for two years.
See, Josiah’s type of cancer doesn’t go in to remission. Here’s how the American Cancer Society defines the term:
This weekend was a big one.
My day job is running the IT/AV/Multimedia/Design department for a faith-based non-profit that just opened a 104,000 square-foot community center. I’ve been on board with this project for three years, and seeing it open was the realization of lots of dreaming and even more hard work.
While we enjoy a good amount of autonomy, this weekend, loads of people from our divisional and territorial offices were in town for the opening events.
Most people have a mix of natural abilities, but the gifts we call superpowers often are tempered through training and experience. That is the case for me. My superpowers come as the result of a disease. I am legally blind. […] When it comes to superpowers I am gifted. I have three. LHON might have taken some of my vision, but in return it left me with heightened abilities I would easily trade for the chance to drive a car, or read a classroom blackboard.
Viticci:
Last Monday, 445 days after my first scan, my PET scan came back negative. This doesn’t mean my journey is over: it means the treatments I have received, chemotherapy and radiotherapy, have been very effective. I will likely get more treatments to “consolidate” – e.g. “wrap up” – everything, but, overall, this is great news. It means I have kicked cancer’s ass.
This is not a post about the lessons I’ve learned. I am still learning. There’s an old saying in Italy that goes like this: “life is a continuous exam”. I believe that’s true. How can I write about life when I’m still learning how to deal with it?
Viticci, this morning on Twitter:
PET scan came back negative. Like I said, cancer:
I kicked your ass.
When I read Viticci’s tweet this morning, I teared up. He and my buddy PJ spent most of 2012 fighting back against their cancer, and for now at least, they are victorious over it.
However awesome these guys are, they are in the minority. Not everyone gets a second chance. While I’m overjoyed that my buddies are doing so well, it breaks my heart to think about all the little friends we’ve seen succumb to cancer of the course of my son’s treatment.
Kyle Baxter’s written a must-read piece on life and death. Blockquoting any of it would do the rest an injustice.
Pardon the self-link, but this was me, back in July:
This website isn’t my full-time job, but it likes to think that it is.
Currently, I’m under the gun with some pretty big pressures at work. So much so, that 512 has been collecting dust for a couple of weeks. It’s frustrating being so busy I don’t have time to read what’s clogging up my RSS and Instapaper accounts or write what’s bouncing around my head. I have to remember that my day job pays the bills, not this, so if things are little quiet for the coming weeks, please forgive me.
Editor’s Note: This appeared in the Read and Trust newsletter exactly one year ago today.
By the time you’re reading this essay, it’s been re-written twice.
Most of the time, I don’t re-write pieces. I edit and re-arrange them often, but rarely do I open a new text document and just start over.
Needless to say, it was discouraging. The handful of people who read the earlier versions of this all said the same thing:
This past week marked a very unusual anniversary in my life.
It was just three years ago, which is hard to believe. I was sitting at home with my wife and son, when my iPhone starts going crazy. I walk over to the desk to pick it up, assuming that some client was having an emergency, as help tickets usually would spawn several emails in just a few moments.
At that time, I was working as the Service Manager for an Apple-Authorized Service Provider here in Memphis. I helped start the Apple business, and we ran in parallel to the company’s other departments, which handled everything from VOIP services to banking network security.
This holiday season, give something that really matters — life.
My buddy PJ just got some good news:
So, the cancer seems to be gone. For now, at least, it looks like we’ve won the battle. It caught us off-guard with its first sneak attack, and took a part of my body as a trophy, but we fought back hard.
PJ — like my son — will undergo regular scans and blood work for the rest of his life. Once cancer is present, it can come back meaner and uglier than before. We’ve had many of Josiah’s “little friends” lose the second or third round to the disease.
Sam Biddle:
The web is great for volume, but for the deep touch, you still need to act like an actual human being. You need to actually hear someone’s voice—or at least pull a long, private email out of them. We’re all insecure, finite monkeys who don’t want to admit weakness and fragility in a place where thousands of people can read it. That’s normal. It’s not normal to expect someone to put forth their panic, storm anxiety, fear, and general angst on Facebook. We put the people we want to be on Facebook, not the people we are. And sometimes those people are generally terrified of a storm—or something else—and not doing fine. You’ll never know unless you truly ask.