Pharewell, 2024

Hi Phin phans! Dustin here. Neesha will take over a few paragraphs down. She and I walked the dog together yesterday afternoon and discussed the kind of update we should make for this entry. It was one of the few times we've both been in the same place and alone this year. We talked quietly and walked slowly. I had gone for a short jog the day before, and as we walked my legs ached miserably--another lingering consequence of the long months of inactivity watching Phin while he recovered after his bone marrow transplant. I've never been in great shape, but hobbling along after only a moderate workout is something new and also fitting. It feels like, physically and emotionally, Neesha and I are both limping to the end of 2024. 

"Why does it feel like this?" Neesha asked during this walk. 

What I think she means is, why, after we've just celebrated a Christmas when our child is not only still alive but apparently cancer-free--again!--despite so many moments during the year when that seemed unlikely, why do we not feel absolutely overjoyed? 

It's a complicated question.

"I think we're really tired," I said. 

And it's true that I feel exhausted, beyond just being so out of shape. I know my wife well enough to know she's tired, too. We've been on winter break from teaching for weeks, but being off work and resting are not the same. We've still had Phin at home, and as most home schooling parents can attest (or as many remember from early in the pandemic), it's both a privilege and a challenge. It's hard. 

It isn't just that, though.

It's also the weight of remembering what we were doing this time last year, which was Phin's second Christmas in remission. A year ago, we had just returned from a fantastic family trip to India. I still have the picture of Phin in his Savannah Bananas shirt in front of the Taj Mahal in rotation on my phone's lock screen, and now every time I see it, I scan his features and complexion for signs of the leukemia that would officially announce its return in his blood work two short months later. Additionally, here at home, Phin and Aspen were serving as dual mascots for the Leukemia and Lymphoma Society. We were making speeches about them at fundraisers. They were honored heroes. 

Such was our sense of triumph. And our hubris. 

Yet, despite the year we've had, with Phin's relapse and the return to hospital living and the bridging chemo and the relocation to a different hospital far from our home and the anxiety of finding a donor and the transplant itself and the prolonged recovery and confinement and the shuffling of the girls between relatives again, and then Aspen's relapse and all that followed...here we are again, with clean scans for Phin once more as the year closes, and Aspen already more than two weeks post-BMT and following a recovery trajectory that looks even better than Phin's did so far. (Keep. Praying.) 

Which leads back to Neesha's question of why we've felt a little rundown and battered this holiday season, and the answer is...I don't know. She and I teach English, and I'm the first to admit that psychology is not my lane. I am better equipped instead to look to literature to help me make sense of the world. So many times this year, I've thought of Stephen Crane's short story, "The Open Boat," and its haunting line, "If I am going to be drowned--if I am going to be drowned--if I am going to be drowned, why, in the name of the seven mad gods who rule the sea, was I allowed to come this far and contemplate sand and trees?" Why should we, like the shipwreck survivors in that story, have been spared from one disaster only to fall victim to another that arrives just behind it? Why, when we are so close? 

Readers familiar with Crane's story will remember that salvation eventually arrives, but at a terrible cost, and not for everyone. Our spirits groan beneath the weight of this truth. We have been allowed to watch our child laughing and opening presents while parents with whom we rode the hospital elevator mere months ago lay flowers on a patch of earth. A portrait of their family from one year ago would look very similar to a portrait of ours. Their child's prognosis had been favorable. Low-risk and highly treatable, they'd been told. And now we and many others carry the torch of this child's memory, and the weight of many memories unmade, and the guilt of survival.   

Phin's Christmas tree in all its slothy glory

This is all to say that yes, this is a season of celebration and hope, but after a year like this one, even hope can sting. After all, we thought we were more or less in the clear with Phin and AML before. Perhaps that is what hope really is--a light that burns the eyes even as it reveals the way forward. I think that for as long as Phin lives, Neesha and I will always squint at hope, and we will do it with hearts full of gratitude, knowing that to do so is a privilege. 

When people tell us, as they often do, that they can't imagine what we're going through, caring for a child with cancer, it is this very thing that I think about--the complex emotion of feeling thankful for the privilege of conditional hope and perpetual dread, the trade off of feeling the constant fear of losing a child over the grief of having lost one. All parents surely feel this, but, as with so many things, cancer becomes a kind of magnifying glass for it. We have reshaped our hearts with the awareness that we're lucky we still get to hope and dread at all.  

Medical Updates
The good news is Phin's most recent chimerism test showed him at 100% on both the T-cell and myeloid lines, meaning that his blood cells are all coming from the bone marrow he received from his donor on May 31. That's exactly what we all wanted to happen. Phin's cancer lived in his bone marrow. The original plan was to kill the cancer and hope that his bone marrow would never make any more of it. After he relapsed this year, the plan was to kill the cancer, then kill all of his bone marrow and replace it with a benevolent stranger's bone marrow in a miracle of science, logistics, coincidence, and raw kindness that surpasses human understanding. So that's looking good.  

Phin's liver enzymes on 12/23

Phin's liver enzymes on 12/18

What we think is happening now is that the other foot is starting to come down, where the effects of the medicines that allowed this miracle to happen are beginning to announce themselves. We've seen some of this already with his damaged teeth. What we started to see in the middle of this month was something happening to his liver. 

There are a few things that could cause his liver enzymes to be this high, including viral infection or graft vs. host disease, but the culprit his physicians have zeroed in on seems to be a medicine Phin took for the past six months called posaconazole. In a fortuitous turn, Phin's doctor took him off of this medicine at his last appointment, before he even saw those elevated numbers. Also reassuring are the numbers that came back from the follow-up appointment five days later. A few days off of the medicine and his liver enzymes had come down several hundred points. 

Of course, we're really hoping that they continue to decrease, and that his liver returns to normal on its own now that he's not taking this drug anymore. But one thing we've learned about CHOA (and we truly love this about them) is that they don't play around when it comes to their patients' wellbeing. They've scheduled Phin for additional tests on NYE and told us that, while he could be discharged immediately if his liver numbers have improved significantly, we should plan for him to be admitted and to stay inpatient there for some time. 

Phin On the Daily
Another day has passed since I began this post, and it seems that my early promise that Neesha would eventually appear in it will go unkept. Alas, she could not be coaxed onto the stage. She puts in her time making our regular Phin-related social media updates, though. The fact that I almost never appear in them, or only fleetingly at the margins of an occasional photograph is, I think, more evidence that we are barely ever in the same place doing the same thing at the same time--that our lives, even several months after Phin's triumphant post-BMT return home, remain fractured and fragmentary. 

I have just returned from another little jog. It was difficult and painful. The whole thing felt very stupid and pointless. I'm sure Phin feels like this all the time. Things can feel futile when they're hard, and if he doesn't register this, he's about to, assuming he gets cleared to return to in-person school soon. It will be tough for him. He wants so badly to go back, but it will be tough. I bet everyone who's ever suffered a huge shock in their life can relate. And rebuilding a whole life even after it's been saved is so slow and tentative, because it's not like the hits just stop coming. Every time it feels like you're making progress, down it all comes like a sand castle when the tide rises. Maybe as soon as tomorrow, when we return to CHOA for more liver tests--another wave will roll onto our little beach and wipe all of our little barely rebuilt sand castles away again. 

Oh hey! Neesha's here! 

(This is a lot like how it went the moment when Neesha and I first met, by the way! There I was, writing away by myself, and suddenly I looked up and there she stood, wreathed in light. That's a story for another time, though.)

What Dustin says about running is so true, though. Back in 2022, when Phin first returned home from the hospital in remission, he was home for two months regaining his strength and stamina before finally returning to school. I remember that day so vividly. There was a sort of a nervous release in dropping him off back into the world with his peers and returning back to our home to begin planning anew. I, too, am something of a runner, but it had been months since I'd had a chance to really commit to doing so during his treatment. I'd run a mile here and there, but nothing consistent. That day in 2022, when I returned home, I decided to begin again. After all, it was a season of new beginnings. The lake in front of our house is exactly half a mile. I made it halfway around that lake before my phone rang. It was his school asking me to come pick Phin up. He didn't have the stamina to last the full day.

Premonition or mere paranoia whispered in my head that this moment of interrupted plans was no longer the exception to our life, but the rule. My partially-used planners from the last three years are a testament to this. This is the truest metaphor. Two years later, like Dustin, I am unpracticed after ten months of being sedentary. It has been nearly an entire year since I've been able to run. I recall arriving at the start of a 10k I’d signed up and trained for last February, less than two days after hearing the words that Phin had relapsed. I wanted so badly to rise above the crippling terror I felt, to run that race in a symbolic gesture of the triumph I prayed Phin would eventually have. Instead, I collected my number, turned to pin it to my clothes, and found myself blurry-eyed back in the driver’s seat of my car. Moments later, I’d return home and write—through that same curtain of tears—a blog post sharing the news of Phin’s relapse with the world. Committing it to the page of reality, preparing for the new fight that stretched, unknown and terrifyingly, before us. Before that race is the last time I ran with conviction and ease. Now, both age and emotional heft and trauma of the last few years weigh so heavy on my tread I sometimes wonder if I want to begin at all, knowing the once unexpected pauses will come again to stop me in my tracks, to push me back once more.

It has been ten months since Phin began treatment again. He is off all medications and building his strength daily. This morning, he went running when he saw Dustin making his way slowly and steadily around the lake. He took off, sprinting out the door; ran halfway around the lake to the exact spot I had been stopped by that phone call two years ago, and continued on foot for at least a mile with his dad. Phin always begins again. Slowly, at first, steadily. Anew with only the promise of the next step, not thinking of or planning for anything beyond it. Just that next step. No hesitation.

Because of Phin, because of his sisters who are watching as they continue the race without stopping, we lace up our shoes, face the wind, and begin. Again.

But this year, without a planner.