A few weeks ago, I wrote something titled,
If I’m being honest, though, it felt weird to write that. Mostly because it’s only semi-accurate. A more accurate title would have been something like,
Not quite as catchy!
You’ll notice the second version omits the word “beat.” I guess I put it in there the first time because that’s the easiest and most concise way to communicate that Trystian has finally – FINALLY – finished his prescribed treatment for Acute Lymphoblastic Leukemia. He’s still alive, and there’s no trace of the cancer, so … yeah, he “beat” it.
But the word implies some finality. And since we’re being honest here, it needs to be said: There’s very little that’s final about where Trystian is at.
Don’t mistake my tone; I’m so grateful that we’ve made it this far, and am excited for what the future holds, especially as the poison that’s been pumped into his body for all this time works its way out of his system. (I’ll come back to this in a few minutes.)
But, being a realist, I’m also nervous for what lies ahead.
One of the challenges we’ve had is communicating the unique issues that come along with A.L.L. to people around us. One issue has simply been getting people to understand how long and grueling the initial treatment is; I can’t tell you how many times over the last two years that someone said, “Isn’t he already in remission?” or “Wait, he’s not done with that yet?” since most people who know something about cancer know that the treatment course for most cancers is measured in weeks or months and not years.
Beyond that, there are lingering issues that have to be worked through. Foremost, of course, is the chance that Trystian could relapse. He’ll be checked monthly for the next year for the presence of cancer, and while all signs are positive – he didn’t relapse at all during treatment, and actually had relatively few hospital stays – the odds of relapse are significant enough that the surgically inserted port through which he received his chemo infusions won’t be removed for six months.
Then, there’s the collateral damage to his body.
Trystian is suffering from neuropathy, a condition brought on by taking the chemotherapy drug vincristine. There’s some leg pain associated with it, but most significantly, his muscles are weak and underdeveloped. He’s receiving physical and occupational therapy once a week to combat the effects, such as learning again how to walk heel-toe like the rest of us (he wants to walk on his toes):
He also can’t hold a pencil properly because his grip just isn’t strong enough. The condition is reversible. But it’s going to take some time.
Thankfully, we haven’t yet seen any significant developmental delays – heading into kindergarten this fall, he knows his letters and numbers, his vocabulary is excellent, and his capacity for creativity sometimes leaves me in awe. But there’s still the possibility that “chemo brain” crops up as he begins to study more rigorously.
Long-term, treatment for A.L.L. has been known to cause heart damage, sterility and other problems. One study has found “that the health problems of these survivors increased steadily over time, even 30 years after their treatment.”
Of course, there’s also the emotional toll this has taken on myself, Sarah, and Trystian’s brothers. I worry about his older brother, whose occasional demonstrative outbursts reveal just how much he’s carrying around in his little heart that he doesn’t really talk about. I worry about his younger brother, who has so often been left to fend for himself.
As a parent, these were the things that were on my mind when I wrote that my son “beat cancer.” (And I’ve talked to enough parents of cancer survivors to know that I’m not unique in this regard.) As Sarah puts it, “I don’t feel done – I feel like we checked that part of fighting cancer off our list.” Or, to make a sports analogy, I feel like the game’s not over – we’re actually getting ready to start the fourth quarter with a two-touchdown lead. We’re in an awesome spot, but there’s still a ways to go to see this thing through.
I don’t bring all this up to diminish Trystian’s accomplishment. In fact, it’s actually quite the opposite: These future challenges underscore and emphasize the need for us to stop and celebrate this milestone!
For three and a half years, Trystian has had needles stuck into his chest and been pumped full of chemo and steroids and antibiotics. As you can imagine, there were plenty of shitty days – particularly early on (during delayed intensification) when his hair fell out, and in the last year, as he has reached an age where he can express in no uncertain terms that he is very, very over of all of this crap. But most of the time, he graciously complied with everyone’s requests. And through it all, he continued to laugh and smile and just be the sweetest boy you’d ever want to meet.
And that means something. A lot, actually.
So, here’s what we’re going to do!
Thanks to the incredible generosity of 30 or so people who donated to GoFundMe – seriously, words can’t express how humbled I am by their gestures – we’re going to be able to take a real family vacation that doesn’t involve cancer. This actually will be the first time with the five of us; our youngest was three months old when Trystian was diagnosed, and he was just over a year old when the rest of us visited Disneyland for Trystian’s Make-A-Wish trip, so he didn’t go. And even on that trip, the effects of cancer were palpable as we pushed our 4-year-old around in a stroller. (Don’t think I didn’t want to punch every person who gave me a funny look right in the face.)
We’re going to pack up the car and take a road trip. First, we’re going to visit Coeur d’Alene, Idaho, and stay in a cabin on the Spokane River for a few days (again, thanks to the tremendous generosity of a friend) where we’re going to play in the water and take the kids to Silverwood Theme Park. Next, we’re going to drive to Missoula, Montana, and visit some friends from Camp Agape while doing some hiking and whatever else strikes our fancy. (There have been unconfirmed reports that a visit to Big Sky Brewing will be involved.) After that, we’re going to drive down to Yellowstone National Park and camp for a couple of days while taking in as much of what that park has to offer as we can. Then we’re going to finish it up by going back through Coeur d’Alene to spend some quality time with an aunt and uncle of mine we haven’t seen in a long time.
We are incredibly excited to be able to spend this time together as a family. There also will be a celebration with family and friends so that those who have been closest with us during this time can also share in our joy. We’re blessed to have made it this far, and we count it an undeniable victory that Trystian is still here and we’re all still standing.
Thank you for whatever part you played in the journey of the last three years, and please pray for continued healing for Trystian. We’re believing that the best is yet to come!