Snow Day!

 

Phin was only half a year old the last time our coastal Georgia town saw snow,
and few could remember a time it had snowed before then. When Phin told us
at Christmas that what he wanted most was to see snow, we assumed we'd have
to plan some big trip to the mountains at an indeterminate future time, provided
that he was well enough to go. Then, suddenly, a winter storm arrived and dumped
 a slick layer of sleet and a couple inches of powder overnight. Phin's wish to play
 in the snow came true. Here, he and his sisters explore the frozen neighborhood
 before their snow day online schoolwork begins.   

So many things in life attack from behind, like a little
brother with a snowball. You're minding your own

business, living your life, and next thing you know...

...splat!

What captivates Phin and his sisters here are
the icicles clinging like spiky teeth to the bottom 
of the sign, highlighting the novelty of the
naturally occurring ice for these kids through an
object that was equally novel to us when we first
moved to the area. Not an alligator to be found today!  

At the playground, a snowball disintegrates
in Phin's hands as one of his sisters tries an
extra-slippery slide and the other plays it safe.
The sycamore the community planted in Phin's
honor stands in the background, its limbs bare
except for a few tenacious leaves.   

Anticipating Spring

Spring is coming--the season of renewal and rebirth, blossoming flowers and trees, greenness springing
back into our lawns, just waiting to soak in the golden rays of sun. It's the season of jasmine floating  like an aphrodisiac in the air around us, tempting our nostrils to lead us to its origin. Bees buzzing, birds flocking, the geese returning to the lake outside our house where Phin will inevitably shout "The geese are home!" as they honk their arrival, their feet skimming across the shimmering water, their bodies a chorus of shhhhhooooshhhhing into the lake as they come to a rest atop it for the next few months, delighting us with their cackling nighttime honking. Spring is the season of hope and rebirth.

For us, Spring is also the season of trauma. The season Phin was first diagnosed and treated for cancer in 2022, and the season he relapsed in 2024. That first Spring, Phin had begun soccer season--running up and down the field, laughing and kicking, before withering as the season really got started until he could do nothing but stand in the goal, clutching onto the net, halfheartedly trying to block the ball. Soon after, he spent that first Spring in the hospital, hunting Easter eggs, celebrating his sister's First Communion from the inside of the hospital playground, hugging her in her lacy white dress through the iron bars of the newly painted black gate. He spent last Spring in the hospital, too, only this time, unable to attend preparation for his own First Communion--a setback that would deny him his own communion a year later, still hunting Easter eggs in the hallways, watching the newest addition to the Children's Hospital be built in what was once the parking lot, eventually fighting E. Coli before moving onto Atlanta for his bone marrow transplant.

When Spring comes, Dustin and I pull our collars a little tighter against the chill of our anxiety, watch Phin a little closer--are his lymph nodes swollen, are the symptoms he's displaying common for the kind of virus he seems to have caught, is he paler, eating enough, sleeping too much? We inspect his body for bruises or bumps. We wince at parallels: the baby Phin found in the King Cake on Epiphany this year, just as he did in 2022; his request to return to Mathnasium. It has been almost a year since I sat outside Mathnasium in my car, watching him through the window as he bounced up and down in his seat, excitedly earning more tickets toward a giant parrot stuffie he'd been saving for for months. I watched him through tears, holding the phone in my hand having just learned that our fears of his relapse were confirmed despite how healthy he looked, how full of life he was there before me.

If we seem distracted, on edge, snappy, cold, or aloof, just know: Spring is the season of trauma for us.

While the transplant he had is curative in nature, a transplant isn't a guaranteed cure and spring is closing in.

Medical Updates
Phin's liver enzymes continue to improve, leading his medical team to believe it was a viral spike that caused them to rise so drastically.

However, he has also been working through a virus for the last two weeks. The first week started with a sore throat, followed by a fever. The fever seemed to dissipate. He was tested for strep (negative) and we were told not to give him any OTC meds unless it climbed to above 102.5. It did rear up again and brought with it a cough, but never broached the 102.5 degree threshold. After a full week of varied temps, he was finally better, but the cough persists. His bloodwork this Friday (Jan. 17), despite the cough, looked great and Phin was given full clearance to return to school (I'll get back to that part).

His Atlanta team has also suggested weaning us down to once-a-month visits with one visit being in Savannah and then the next being in Atlanta. This would put Phin's first Savannah visit in February--a triggering scenario since he was diagnosed with relapse here in Savannah in February of last year. Dustin says he has prepared his spirit for this, and that he will do that which needs to be done; simultaneously sparing me and gifting me time to get ready to eventually do the same.

Phin on the Daily
Phin made his triumphant return to the ice skating rink this year (he was taking lessons when he relapsed last year; it's also probably where he caught whatever virus he's (hopefully) nearing the end of), AND he got to spend three glorious hours playing with his friends, lovingly referred to in our home as The Playground Six. The Playground Six is the group of friends from school last year who Phin used to play with every day at recess. He'd often come home and tell me about the group and their antics--what they'd played, who agreed to play, who broke off to play something else. One friend has truly been a touchstone for Phin this entire last year--FaceTiming him and playing video games whenever they both were able. I once asked him if he wanted to call other friends to talk with them as well, and he responded "I don't know if you know this, Mama, but not all first graders are good at conversation." We have been grateful for the friend who FaceTimes, plays video games, and offers "great conversation" all year, and are grateful for his mom for setting up the three-hour playdate.

Phin has also been given medical clearance to return to school this week. Yes, you read that correctly: THIS WEEK. As in, the possible Snowmageddon in the Lowcountry Week! His return date will be determined by the weather, but if it's good--he'll be back in the classroom on Tuesday, just in time for the 101st Day Celebration! He noted the irony of this--"It's their one-hundred-and-first day and my FIRST day at the SAME TIME!" He will begin with half days—some mornings, some afternoons—as he builds his stamina back up. He returns armed with a flu vaccination. The rest of his childhood vaccines will be repeated in the coming months.

I would be remiss not to give CHOA's Education Advocate (and hospital teacher), along with Phin's team at Tybee Island Maritime Academy (TIMA) a LOT of credit here for navigating an impossible situation. CHOA is phenomenal. They are practiced, precise, and incredibly organized. They sent medical clearance, suggested re-entry information, and accommodations that made planning for his transition almost like following a blueprint. TIMA--who does not require the same kind of expertise in transitioning medically fragile children back to the classroom--has been equally proficient. One of the most endearing parts of Phin's plan this year has been TIMA's determination to find a way to connect Phin to his new classmates (he will enter back into school as a first grader, which is also where he left off; it is my hope that this decision allows him to enter back in as a high-achieving first grader rather than a struggling second grader) by FaceTiming him twice a week in small groups to establish a social-emotional connection. Special shout out and thanks to the principal, assistant principal, counselor, and--most importantly--his first grade teacher for bending over backwards to include him and make sure he had everything he needed--from an academic, social, and emotional standpoint. 

Winter was beginning to transition to Spring when Phin was abruptly removed last year, and will be preparing for Spring again when he returns. Phin's re-entry doesn't just mark his transition back to school, but his return to his actual classroom with the same teacher who, when asked what supplies I should send when he comes back, responded by telling me: "I have his seat sack on his chair still and a morning journal, supply pouch..." While the underline and bold on the word "still" are mine, with that word emerged a vision of her first grade classroom, his chair untouched through the end of last school year; her classroom dark and emptied out over the summer save for his lone chair with a blue seat sack still heavy with the nubs of Phin's half-used crayons, stale pencils shaved and blunt, once-pink erasers smeared dull by lead--reminders of the unfinished year; I envisioned that same room filling up again in July with bright new faces, unwrapped seat sacks stretched over all the empty chairs, the smell of fresh wax from unused crayons wafting from their boxes, children bustling around the one desk that remained, that empty seat waiting vigilantly almost an entire year for Phin to return and rummage through its pouch yet again.

And this week, he finally will.

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.

Thankful

Hi Phin phans! Dustin here with a quick update on Phin.

This is the end of Thanksgiving week, and we have a lot to be thankful for this year: Our boy went into remission again, matched with a willing bone marrow donor, underwent transplant, survived the initial post-transplant period, and got to return home and cautiously, hopefully, tiptoe back toward resuming some of the activities he liked to do before he relapsed in February. He was--is--fortunate to have made it this far, and so are we. And even if he continues improving at the same rate and enjoys the same incredible good fortune he's already had, he'll still have a long and difficult road ahead. 

But this isn't the time to speculate about the perils to come, or to dwell on the unpleasant parts of the past year. It's a time to give thanks, and to say that we are very thankful that Phin is still here and that you all have chosen to walk this road with us.     

Medical Updates
At his most recent visit to Atlanta a week ago, Phin got five teeth extracted by the dental team that did the extractions he got over the summer. Then, he went to CHOA for his clinic checkup. 

Luckily, all of the teeth he got taken out were baby teeth. He also got two fillings and four caps. The reason for this frightful amount of dental work, as some of you who've had chemo before can probably attest, is that the human body, like the planet itself, is a series of connected systems. Toxins introduced into a river, for instance, can infiltrate the various biomes it nourishes and affect the organisms living there, and such is the case with chemotherapy, the bloodstream, and, in this case, the mouth. Upsetting the balance even a little bit with a shift in the pH of the saliva, or its amount, and the conditions that allow harmful microbes to thrive and helpful ones to perish could have disastrous consequences. That's what appears to have happened with Phin. But aside from a sore mouth and a few stitches, he came out of it with no complaints. 

At his clinic checkup, we were told that his counts look good and that things still appear to be going according to plan. Still, we've found that it can be difficult to get definite answers, particularly about what he's allowed to (safely) do and when he'll be able to do things like go back to school or gather with larger groups of family and friends. This makes it very frustrating to plan. But on the plus side, he came through a relapse and a bone marrow transplant this year, and we've arrived at a spot where resuming those things I mentioned are even conceivable. I remind myself of that anytime I feel frustrated. That we're even talking about it is a blessing.

Also, a couple days after Neesha and Phin returned from Atlanta last time, Phin started sleeping in later and telling us he wasn't hungry at mealtimes. Those were some of the first signs, both times Phin was sick. Sick sick, I mean. This happened around the same time his new chimerism results showed up. To refresh everyone's memories about chimerism, it's the percentage of cells in Phin that came from the marrow he received from his donor--two kinds, both ideally at 100% from the donor. Alarmingly (to us), one of those results which had been at 100% had fallen to 98%. We're told this is within the margin of error on the test, and that sometimes these percentages wobble a little as his donated cells try to annihilate the remnants of his old immune system in what's called Graft vs. Host Disease, or GVHD. But that lower chimerism result, coupled with the sleepiness and loss of appetite, was too much for us. So even though he'd just had his blood drawn for labs in Atlanta, back he went (to the clinic here, thankfully) for additional labs. And of course he was a trooper for that blood draw, too. 

And, thankfully, his counts were good. Again. 

"Probably just a bug," the physician said upon seeing the results. 

"Probably just a bug," we repeated. 

Phin On the Daily 
I'll mix it up for a change on this part and pass the mic to Neesha, who posted the following on the Phin Phans social media accounts a couple of days ago. It's about sharing Thanksgiving day with Aspen and her family. 

I know that many of you have been thinking about Aspen and holding her close in your hearts, and I would encourage you to continue to do that as she prepares for her bone marrow transplant. I can report that a matching bone marrow donor has been identified for her, and that Aspen's donor, like Phin's, is someone unknown to the family--a person willing to put themself on the bone marrow registry to save the life of a child they don't even know. So now, at the end of Thanksgiving week, to everyone out there who has joined the bone marrow registry just in the hope that maybe someday you'll be the one that matches up and gets to save a life, thank you. I type the words with tears in my eyes. Thank you so, so much.  

Okay. Here's Neesha:

Thankful.

There are so many things to be thankful for if you take the time to look. You have to choose that, though, instead of giving in to the dark or disappointing parts of life that tempt you toward despair, lurking around every corner. Choosing thankfulness in the darkest, most difficult seasons of life is so hard, but even then, they’re there.

Today on Thanksgiving, we couldn’t be with our blood relatives—the risks were just too high—and the Shaw family, who is prepping to head to Atlanta this weekend for Aspen’s transplant next month, couldn’t be with theirs either. I like to think this was no mistake, to believe there’s a God out there who gave us to each other two years ago, who, again, gave us this time to be together today, on the eve of their departure, because every day since we’ve known them, no matter how hard some of those days have been, it’s always been easy to know how lucky and grateful we are to have them, to have the friendship between Phin and Aspen.

They share such a special closeness with one another—a familiarity and comfort, having weathered storms side-by-side that none of us will ever comprehend. They run off hand-in-hand, sit beside one another, look out for one another, “thick as thieves”. An unexplainable bond. It is a salve to my heart to see these two together.

We love and will be thinking and praying daily for the Shaws—the family cancer has given us—as they move onto this next part of Aspen’s journey. It was an honor—and felt so fitting—to have them with us today, on a day when we talk and think openly about all we are so thankful for. Please keep them in your hearts and prayers as they forge onward to Atlanta, as well.

And, before this day is over, we want to say “thank you” to you, too. We are thankful every, single day for each one of you: the strength, love, compassion, support, and countless ways you show up for us. There will never be enough days or ways to express how thankful we are. Happy Thanksgiving, Pham.

Our New Routine

Standing in front of a motion-activated display
at the new Arthur M. Blank Children's Hospital
in Atlanta, Phin interacts with a digital creature.

Hi Phin phans! Dustin here with a quick post at the end of October. I'll cut out the suspense about how Phin is doing: He's doing well! We really appreciate everyone who's reached out to ask about him, or everyone who's been checking back for updates. That means so much to us. Thank you. Sorry for the delay. Let's get into it! 

Medical Updates
Every two weeks on a Thursday, Phin and I make the trek to Atlanta. We hit the road after my class lets out, arrive around dinnertime, stay overnight in the Ronald McDonald House, wake up early and go to his clinic checkup on Friday, swing by the pharmacy to refill his meds, grab Indian takeout for the girls on our way out of town, and head back home. We're developing a routine. While it's a lot of driving and I feel kind of wiped out by the time we roll back onto our street, it's such a relief to see those labs come in and to know that, for now, his blood still looks normal, which means his donor's marrow must still be doing what it's supposed to do, which means he's still okay. 

At the lab at CHOA, Phin prepares
to have blood drawn for his labs

When we tell friends about our clinic visits at CHOA, they usually ask how long we'll have to do this, and honestly, we have no idea. As long as they tell us to? Okay. As long as we must. It's been suggested that the frequency of these trips, which almost always end up taking about five and a half hours one-way, will decrease if Phin's progress continues to improve, eventually dropping from twice per month to once per month for a while, then to once every two months, every four months, every six... But we haven't really allowed ourselves to think about that yet.

We only know that we are driving Phin to Atlanta whenever we are told he should go there, and that we will be doing it for the foreseeable future if everything goes well. It's all good, though, because the best part of these trips by far is when we drive back home and he's there, too.  

Phin On the Daily
It's both Halloween and Diwali tonight, and while Phin had to miss his uncles' annual Diwali party this year due to his extremely immunocompromised state (remember, he's not only still taking meds that suppress his immune system to allow his new bone marrow to thrive, but the bone marrow transplant itself hit the reset button on his body's hard drive of antibodies and erased all his vaccinations, so he's basically got the immune system of a newborn baby all over again...and even a brand new blood type!) he was able to do some cautious trick-or-treating. He dressed up as a sloth this year. 

Phin bobs for a donut at the
neighborhood Halloween party

Sloths are his favorite animal, but he lives kind of like a sloth these days, too. Some days he spends hours curled up motionless with his iPad while Neesha or I teach our online classes. He can't be outside in the sun too much (meds again), and he can't really go inside where there are other people (immune system again). So he's living his best sloth life at home, slothing it up while we either teach, grade, or ferry his sisters hither and yon. He's got to be bored and lonely, being seven years old and living this way, doing schoolwork with his new study pod a couple hours a week and with his tutor from hospital homebound for a couple more, but not really ever getting to run around and play with other kids. Time must absolutely crawl for him, slothy hour after slothy hour, one slothy day after another. He never complains. He's just happy to be home.   

Are sloths resilient? Relegated to just watching the world whoosh past, I bet they'd have to be. 

Phin sure is. 

Home Again

Home.

Phin outside a photography studio
after getting his school picture taken

I think we can all agree that “home” is not a place, but a state of being: comfort, ease, the knowledge that you belong, perhaps, surrounded by those you love most or, at the least, knowing they are safe, potentially, beneath the same roof as you when you lie your head down to sleep each night. The trauma of separation—especially the kind our children have recently endured—is challenging. 

When I drove off to Atlanta with Phin nearly four months ago, his sisters didn’t know when they’d see him again. If they’d see him again. In the months that followed, they didn’t ask when he would come home. They soldiered forward, shouldering the all-too-mature knowledge of how dangerous his treatment was going to be. They told themselves, “this is temporary.” Although we spoke to our girls every night and began to rotate each week so one parent was home with them while the other stayed with Phin in Atlanta, they spent approximately two months under the care of loving family with no physical contact with their parents. In the absence of their parents, our girls relied on one another for comfort, protection, and guidance. Some of you may remember how quickly after Phin was discharged from the hospital, we began to first isolate from crowds, then mobilize our girls to Atlanta to remain until summer’s end. All three together in one place. For our children, being together again--even just the simple act of working on different crafts in the same room without even talking--felt like home.

If you have a sibling, you know the bond is a unique and sacred one. They are the only people who have known you through every stage of life—the screaming, frantic baby who doesn’t want to stay in their crib, the sidekick who helps hide the evidence of the dropped roll of toilet paper into the toilet, the loyal fan at every sporting event or performance, the confidante who understands how deeply unfair your parents are being when they ask you to clean your room, the comfort sought when beloved lives pass on, the person who feels the same deep sense of fear when your only brother is scurried off to a faraway place leaving behind his empty room, abandoned toys, and you to wonder when—if—he’ll ever be back to play with them. Siblings are the only people who you can look to for verification of the life you’ve lived, the person you’ve been, the experiences you’ve had, evidence that there is a third sibling, even though they’re far away. One catchphrase or raised eyebrow of understanding across a room and you fall to stitches. One knowing look, and you are wrapped in warmth. Each morning when our girls come downstairs bleary-eyed and sleepy for breakfast, they sit beside one another, pull one another close with an arm around a shoulder, and rest their heads together. They are touchstones. Gifts. Home.

Only twice this summer did we have the luxury of feeling at home. Once was when the girls finished school and camps and joined us in Atlanta, the other was last Wednesday when we brought Phin home after spending 107 days in Atlanta.

As we pulled into our neighborhood at 9:45 p.m. after a long day of testing and procedures that began with an early morning wake-up and move out, we were greeted by neighbors waving from their porches, “Welcome Home” signs hanging from fences, and a huge crowd of Phin Phans outside of our house (family and friends included) awaiting his return with the most incredible surprise we could imagine. It. Was. Epic.

Medical Updates
The test results from the day Phin left for home began to trickle into the medical tracking app while we were still on the highway, and they were all good, regarding his chemistry and his counts. But the two results we were most anxious to see--the one about evidence of disease, and the one about chimerism--didn't arrive until just a couple days ago. 

Phin examines the site where his CVL used to be

Good news on the first one. No evidence of disease. No blasts. Everything looks really good.

So-so news on the second one. Chimerism in the myeloid line is 100% donor-originated, but in the T cell line, it's 90% donor-originated. That one needs to be 100%, too. What does it mean that it wasn't at 100% at a hundred days post-transplant? Does that mean it didn't work? That relapse is more likely? We've done a lot of Internet digging and asking other survivors and the team why it's not 100% yet. The team is telling us not to worry, that sometimes those cells take longer to come in and get to 100%. So, that's what we're going with. 

It's hard for us not to worry, though.   

And we're really happy about the rest of the results. 

Phin On the Daily
Each day Phin adjusts a little more to his environment at the house and in the neighborhood. It was Valentine's day when he last spent any meaningful amount of time here, and today, a week and a half after he returned, we started putting up Halloween decorations. He and I went on a walk a few mornings ago (this is Dustin writing now--hi Phin phans!), and he noticed all the things that had changed while he was gone--a stump in a neighbor's yard where a tree had been, the repairs that had been made to equipment at the playground, a row of saplings where before there was only grass. He had come home, but home wasn't the same as he left it. 

Phin reads to Sundae

"Everything's different," Phin said. 

I nodded. He was riding on my shoulders, noticing these changes. We set out on our walk side by side, but a hundred feet or so from our door Phin began to wilt, and it became clear what three months of staying mostly sedentary indoors had done to him. Yes, the place changed, but so did he. 

But he's venturing out more and more, gradually rediscovering his stamina and his strength, reintroducing himself to the places he knew before. A half a year is an eon in the memory of a child. It's like the continents of Phin's community have shifted in the time he's been away, right under the feet of the people who live there, creating a world that looks different to him now. He'll have to explore it all again, only now with new bone marrow, a new blood type, new fingernails and toenails, and the stubble of new hair.

And new stories and new scars. 

And a new chance. 

Phin, Pheeding, and Philosophical Reconsideration

The Ronald McDonald House where Phin has spent the past two months rests on the edge of Lullwater Preserve, a wood so old, quiet, and deep that it is easy to forget its proximity to the roaring heart of Atlanta. The conversations of owls in the darkened distance and the rustle of the wind twirling the fringe of the forest through its fingers are the sole sounds that punctuate the silence. An occasional orange leaf drops the hundred or so feet from the towering treetops into the glade behind the Ronald McDonald House. Every morning, a few more leaves have gathered there. 

Autumn is close now. Phin’s sisters have been back in school for almost a month. Phin attends the same school, so he has now been absent for that long. He’s met his classmates over Zoom, though, where he patiently answered their initial questions like “Why are you bald?” and “What’s that thing in your nose?”, as well as the more important questions that came later, like “Do you have a dog?” and “What kind of Lego Star Wars do you have?” Each day, he works through the assignments his teacher emails him and does his best to keep up, although another season will pass before he’s cleared to rejoin his class in-person, if all goes well. Neesha and I are also preparing our fall quarter courses, which will begin in a couple of weeks. Gradually, we have already begun bringing things home from Atlanta. 

Still, each step we take toward leaving feels cautious, tentative, like crossing a frozen pond. That is how a lot of it has felt from the start–like the ice could split underfoot at any moment–but the feeling is worse now, and it never goes away, maybe because even though we’ve made it this far, we know better than to trust this ice. We’ve seen what it can do.

Medical Updates

For the first time since May, Phin isn’t scheduled to be in a hospital for a whole week. No clinic visit. No scans. No procedures. Nothing. He gets (fingers crossed) a week off. The oncologist described Phin’s counts as “stone cold normal” at his clinic visit last week, which was Day 80 (post BMT). If all goes well, Phin’s next big day at the hospital will be just before Day 100, when they’ll do another bone marrow aspiration, remove his CVL, and (hopefully) discharge him back to Savannah, where he’ll resume regular clinic visits again and make the trek back to Atlanta for check-ups with the BMT team only once or twice a month. Hopefully. 

His team did give him some homework, however. He needs to gain weight. That means eating more food. Otherwise, they’ll have to hook him back up to the pump that pushes nutrition through his NG tube overnight, and since they’re preparing to wean him off treatment-related things, feeding him through a tube every night is kind of the opposite of what they want to happen.

But the problem is complicated. Phin has never been a particularly good eater even in the best of times, and it’s gotten worse since chemo scrambled his sense of taste (again) and rendered many of his former favorite foods unpalatable to him. The NG tube, which runs up his nose and down his throat, also causes him to avoid foods that have certain textures. Still, there’s probably nothing that limits the food that goes into Phin more than the restrictions of the BMT diet. 

Since bone marrow transplant patients are extremely immunocompromised, they are vulnerable to all kinds of pathogens, and if you’re bacteria, virus, protozoa, or fungi trying to get into the human body, the mouth is a massive door. The BMT diet is a set of precautions presented in an attempt to protect patients recovering from bone marrow transplants from food-borne pathogens until their immune systems recover enough to defend against them. 

So when we feed Phin, we follow CHOA’s recommendations regarding food safety for BMT patients. It’s a lot. It can also be tough because getting food down Phin’s gullet often means finding a way to quickly produce whatever item he requests before his craving vanishes, except that now, with the BMT dietary restrictions in place, even if the food Phin wants actually exists and can be obtained, it might not be allowed under the BMT diet’s rubric.  

Or it may come from a restaurant that isn’t great, or one that maybe just didn’t have its act together on the day the health inspector stopped by. At his current stage in treatment, Phin can have food from restaurants if whatever it is meets all the BMT diet criteria, and if it’s made fresh, and if we don’t dine in, and also if it’s from a restaurant with a 90% or above from the Georgia Department of Public Health. Turns out, not every restaurant is pulling an A.

Here’s an example. Before Neesha swapped me out, I thought about grabbing us lunch from a place with a sign that read “Killer Burgers.” I popped the name in the GDPH search field and hit submit. The results returned instantly–an 89% health inspection score. One point shy of “safe” for Phin. Thus, Killer Burgers was denied an opportunity to live up to its name. 

So every restaurant where we order food for Phin first has to get background checked using the GDPH searchable inspections page. The process is arduous, but very enlightening. Next time you find yourself at an impasse with someone over where to eat, start popping the names of restaurants into your state’s department of public health search page. 

You might decide it would be a better idea to just go with whatever’s in the fridge.   

Phin On the Daily

Before Neesha tagged me out to return to Savannah last week, we had an interesting configuration of teams going on, with Phin, Neesha’s father, and me in Atlanta, and the girls, my mom, and Neesha in Savannah. Scripted narratives often do things like that, shuffling the established characters into different groupings and scattering them all over the map. It makes for good storytelling. The Savannah gang dealt with a COVID subplot, while the boys and I knocked out another ER visit and a couple more doctor appointments in Atlanta, and along the way everybody learned to overcome their differences, trust each other, and believe in themselves. Or at least that’s how it’ll go in the movie version. Hopefully, the production team will cut a lot of the stuff where Phin mainlines videos of YouTube bros playing Minecraft, not that it diminishes his main character energy or anything. 

Actually, there’s been an unexpected twist on that. About a month ago, Phin’s favorite Minecraft-playing YouTube bro announced that he had cancer. 

My thoughts on the phenomenon of these YouTube gamers and their popularity, influence, and wealth are far too numerous to discuss here. I suspect, ultimately, that my opinions on them are part of an ancient cycle in which old people tend to think the things kids like are dumb. But for months, as he’s binged these channels, I have listened. This is what I have heard:

“Bro!”
“Bro!”
“Bro! Where are you?”
“Bro! I'm over here! Let’s go!”

Endlessly. 

Maybe the problem exists in me. Perhaps, instead of looking at these Youtube gamer bros and lamenting my son’s glorification of their absolutely staggering mediocrity, I should instead cast my gaze inward. Could the annoyance I feel simply be the lameness in me acknowledging the lameness in them? How long has the universe whispered, “Bro! Where are you?” to me?

Perhaps it merely awaits my reply: “Bro! I'm over here! Let’s go!” 

Anyway, this YouTube gamer getting cancer–of the tongue, no less–hit Phin hard. This is a little kid who knows a lot about people getting cancer. Both his grandmothers are cancer survivors. His grandfather is fighting cancer right now. Many of his closest friends either have cancer or have beaten it. He’s played with kids who have been killed by cancer. He knows that cancer may kill him. But in Phin’s world, this Youtuber is the first celebrity* who’s gotten cancer. The announcement he posted rattled us both. Phin went on a kind of cancer update vigil because he admires this person, despite my constant grumbling reminders that this shrieking man-child is contributing nothing of value to society and in fact is probably making it even worse. 

And I, on the other hand, had to reverse my stance. Previously, having been subjected to this individual and his brother and friend yelling at each other while playing video games for multiple hours a day for months like a man trapped in an apartment with three roommates who are all slightly different cloned versions of the same dumbass, I had wished wholeheartedly to never–never–have to hear his bro-y voice again. 

But now my son saw in this person’s misfortune a reflection of his own, which opened up, unexpectedly, a new reason to hope, and an opportunity to empathize. So where before I had wanted this gamer bro to disappear from our lives forever, I now found myself publicly rooting for him. 

And he beat it. 

A few days ago, the gamer bro posted a video of himself triumphantly celebrating his victory over cancer and thanking his fans for their outpouring of support. Phin called me so we could watch it together. He played the YouTube video for me. Then he played it again. And again. And then it occurred to me that instead of Minecraft, Phin was watching him do a walkthrough of beating cancer and all the things you feel: kindness, relief, gratitude, joy.

The gamer bro was demonstrating what it looks like when you win.