The new normal

Doing normal people stuff in the midst of abnormality.

It’s been on my list of things to do for a while now to write an update on Trystian, and yet I have always seemed to be able to find some reason why I don’t have time to write. Funny how easy that is to do. I mean, don’t get me wrong — we’re busy. But if I’m being totally honest, there’s probably a bit more to it than that.

When I started this thing just a few days after Trystian’s diagnosis, everything was happening so rapidly. Within a few hours of the bad news, he was getting his first blood transfusion. The next day, he had a PICC line inserted, underwent his first spinal tap, and later, received his first chemo drip.

This was in the first 24 hours. As a parent, it was like trying to get a drink from a fire hose.

Because we’re so blessed to have so many people who care about us and our son, it was a little overwhelming trying to keep everyone up to date in those first few days. It felt like everything was changing by the hour, so we needed a reasonably efficient way to pass along information. I suppose we could have just used Facebook … but again, if I’m being honest, I really needed a place to be able to process my own roller coaster of emotions. At the time, I felt like I could talk to everyone and no one about how I was feeling, so I did what I do. I wrote, very publicly sharing all the things that I was having such difficulty talking about privately.

But at some point — and it’s really hard to figure out exactly when it was (I’ve actually thought about this) — doing these updates became less integral. At some point, we shifted from crisis mode to living-at-home-with-a-kid-with-cancer-OH-MY-GOSH-WHAT-DOES-THAT-EVEN-LOOK-LIKE???? mode to yeah-another-appointment-with-the-oncologist-yeah-he’s-doing-fine mode.

We (mostly) stopped worrying about death and (mostly) just tried to figure out how we were all going to live.

That meant living with cancer, which, of course, is super crappy. But you’d probably be surprised at how quickly that becomes rather mundane. It obviously has its awful moments*, and I do sometimes pause and reflect on the conceptual craziness of cancer, my son’s mortality, etc. But all in all, it just sort of is what it is. It’s our new normal.

*Holding your son while he goes limp after being sedated is one; giving your son an injection of chemo at home — in which you’re asked to put something into his body that is so awful they actually give you a haz-mat cleanup kit just in case you spill some on your floor — stands out as another; shaving your son’s head because his hair is falling out in clumps is yet another.

I’m actually really thankful for that, believe it or not. A person can only handle so much crisis, and because Trystian’s treatments have gone more or less as expected over the past 11 months, we’ve had the relative luxury of living in a way that is much more normal than the way many other cancer patients’ families are forced to live. We know others aren’t so fortunate.

This also has a lot to do with Trystian himself. He’s an amazing kid who faces every challenge thrown at him like a champ. Sarah has documented a lot of that stuff in previous posts, but the big takeaway is simply that whenever we ask him to do another stupid cancer-related thing, he usually smiles. Sometimes, when he takes his chemo pills at night, he’ll eat the pill and the dab of yogurt off the spoon, grimace as he swallows, then smile and say, “That was DEEEEEE-LICIOUS, dad!” Seriously, who does that? And his hair is growing back so beautifully. My head knows that’s just a silly cosmetic thing, but my heart appreciates it.

Lately, things have been slightly less normal. Trystian has been fighting some kind of virus for a while now, and it’s been screwing with his blood counts. (At least they think that’s what’s doing it. We can never be sure.) They’re getting close to normal, which surprisingly is a bad thing right now. The chemo pills he’s taking at home actually are designed to suppress his blood cell production — the idea is that if his body goes into full-blown blood cell making mode, it might start making the cancer cells again, too. So his oncologist has increased his home chemo doses to try and bring them back down. Please pray that this does the trick.

I’ll leave you with one more thing. This is a great story about a college basketball player who was diagnosed with A.L.L. (the same kind of cancer Trystian has) when he was 16, and is nearing the end of his treatment. He played with leukemia this past season as a freshman. It’s a tremendously powerful story, and provided some much-needed perspective for me. Although Trystian speaks well for a 3-year-old, he’s still 3, which means he doesn’t always express how he’s feeling very well — sometimes he says he doesn’t feel so good, other times shrieks in my face, other times he just punches his brothers. (Shrug.) Trystian also doesn’t really have any frame of reference for what things were like before cancer. Ray King can speak to that, though, and I have to imagine that the only real difference between him and Trystian is the ability to articulate the experience.

Although some of the details are different (Trystian wasn’t in as near as bad of shape as King at the initial diagnosis), the story paints a pretty similar picture to what Tystian has endured — it was completely bizarre to me to read King’s treatment protocol and know exactly what each of the drugs he takes are and what they do. So if you’re curious about the details that we might or might not have covered on the blog, this story is a good place to get a general idea.

The afternoon after, Ray has to miss practice to go to the UNC Pediatric Center for a checkup and his monthly injections of the chemotherapy agent vincristine. Every two months they add a spinal tap to check his bone marrow and shoot some chemo into it. In addition, Ray takes anywhere from 24 to 40 pills per night—methotrexate, 6-MP, prednisone, scepter. It’s maintenance chemo, not the stuff that made him throw up 100 times last year, but it’s still poison. On top of aerating his immune system, the chemo messes up his brain. He’s doing OK in school—three Bs and three Cs this semester—but Ray has trouble remembering his team’s plays.

Trystian takes far fewer pills (presumably because he’s smaller), but the protocol is the same. I hope you read the whole story. It’s long, but well worth your time.

Oh, and I dare you not to cry when you get to the story of his Make-A-Wish. I just read the story again. I knew what was coming and I still couldn’t do it.

Until next time (which hopefully won’t be another four months), here’s a video from this week as he plays with some toy tools that he got at the doctor’s office this week. You can see the band-aid on his back from where he got the spinal tap, as well as the port on the right hand side of his chest. He said he wants to build a bird house, and he really gets into character with the positioning of his jeans: