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. 

The Bell’s Toll

 

Two years ago the other day, August 17, Phin and Aspen rang the Bell. The Bell is traditionally rang to mark the end of treatment, end of cancer, the beginning of a new life as a survivor, the end of one phase of treatment and the start of the next...etc. But the Bell is controversial, too. Some patients never ring the Bell; others ring it again and again. To date, Phin has rung the cancer Bell twice: once on August 17, 2022, when we hoped his battle with cancer had been won; the second time on June 28, 2024, when he was discharged from the Children's Hospital of Atlanta with his new bone marrow engrafted and getting to work.

This image is a conglomeration of posts from August 17, 2022 and August 17, 2023: images of Phin ringing the Bell, of us celebrating his one-year anniversary of ringing that Bell, and of Phin on a field trip with me one year after ringing that Bell where we wandered downtown on a field trip with other first graders who knew nothing of Phin's battle, who knew nothing of his cancer. We were blissful, enjoying his cancer-free life of normalcy where the biggest things we had to worry about on a daily basis were whether he'd mastered his addition facts or knew all his sight words. 

I'd be lying if I said I didn't worry that day two years ago, when Phin and Aspen rang the Bell. In the furthest most reaches of my mind, I dreaded that Bell, how it felt like a temptress of Fates to be ringing it, and walking out those doors. As if Cancer stood like a vapor in the background of those cheering faces and celebratory scraps of fluttering confetti, watching us depart from the Pediatric Specialty Unit where Phin and Aspen had spent most of that year, lurking vengefully by as the doors closed behind us, watching our silhouettes grow smaller in the distance, thinking, "They'll be back."

Cancer doesn't care.

People often say that Cancer is the worst club to join with the best people. This is true. No one will ever understand Childhood Cancer, especially, like those who have walked or are walking through that trauma themselves. We've known people who came before us and people who have come after; people who have fought for months and those who have fought for years. We've heard the cries of infants who couldn't yet walk, screams of toddlers and children; angry protests of teenagers from behind closed hospital doors. We've met desperate parents in communal kitchens where we shared a tissue, bad coffee, and our fears. We've attended Bell-ringings and memorials; we've cried at both.

Today we cry for Leo. 

Eleven-years old, oldest of three siblings, neighbor to Phin on the BMT unit; ALL warrior, and so much more. When Leo moved into the room beside us, his mother and I had hoped one day the boys might play together: Roblox or Minecraft, walk a few laps around the unit, meet up "on the other side" at the Ronald McDonald House but, despite our fervent prayers, these plans will not come to fruition. Leo had fully engrafted. His transplant had worked but cancer treatment is harsh. Chemotherapy, radiation--they wreak havoc on little bodies, overwork and weaken major organs, leave our children fragile and vulnerable. We followed Leo's journey, just a few paces behind Phin, on Instagram, occasionally running into his parents in the hospital kitchen or the Ronald McDonald House, offering each other encouragement as we did. We prayed for Leo every day--every. single. day--right alongside our Phin. Fervently, desperately, just as we do for Phin.

When your child has cancer and you meet another child battling cancer, they become a symbol of hope, a symbol of possibilities; they become another source of empowerment and motivation; they inspire us to draw on reserves we didn’t know we had. When people talk about the strength cancer parents exhibit, it comes from these families, our warrior children who inspire us to forge ahead, these small people who bravely, boldly lead the way forward into that great, terrifying unknown while we trail anxiously behind. Nothing is in our control. Despite the weight of devastation you bear like the heaviest of rocks as you stagger up the hill you would willingly climb forever if it meant not having to lose your child, you offer to shoulder their weight, too, as much as you can, as much as they'll let you, and gladly. You think: we are in this together; we will climb up together; we are not alone. You can't stop yourself from loving them. All of them. Even when you think you have more than enough already, can't hold onto or spare another ounce of love, you love them anyway. 

And you mourn them in equal amounts, with a grief you've never known before and one you never want to know again. A grief that springs up like a well from your soul, burns hot like poison seething from your eyes, unstoppable and devastating in the pickup line as the dismissal bell rings and you await your own smiling 10-year-old daughter bouncing toward you after school. You think: he was 11.

Cancer doesn't care who rings the Bell or doesn't.

As a lifelong rule-follower, a person who thrives on lists and organization and schedules and plans and honoring guidelines to perfection, it's hard for me to accept that Cancer does none of those things, cares nothing of plans or how true to the letter we live our lives. Each day, we give Phin the medicines, encourage him to eat, try to keep his body limber and active in preparation for when he can enjoy his freedom again. Each week, his transplant doctor tells us what a thing of beauty it is when parents do "all the right things"; each week, I think "but Cancer doesn't care." And I worry.

The weight of cancer is heavy. Almost unbearably so. It's so burdensome our girls cannot whisper its name, perk up only when their brother is mentioned to excitedly ask if he's "coming home soon". They do not talk to their friends and confidantes about their brother's battle or their fears. They can barely admit them to themselves. But Phin throws it around like that same reckless abandon of the confetti that rained down on he and Aspen at their Bell-ringing. So much of what he says begins with "When I'm done with cancer."

"When I'm done with cancer, I'll visit all the animal hotels", places you can watch animals roam by your hotel balcony as you lie in bed at night. 

"When I am done with cancer, I will visit Santa Claus at the North Pole, see his reindeer, meet his elves."

"When I am done with cancer, I will get a small black dog like Sundae, only smaller. I will name her Shadow." 

"One day, when I am done with cancer..."

As these days creep quietly forward and the number of days post transplant increases, the heft of concern does not have an inverse reaction for me. It remains, vigilant, as if to say: you won't catch me unprepared this time.

Medical Updates

In just under three weeks, Phin will, hopefully, be coming home. This will mark his 100th day post-bone marrow transplant. No one has actually mentioned or talked about this milestone, but little changes abound. His medical team is trying to wean him off his NG tube. While Phin doesn't get feeds from it any longer, it has become the Charon that ferries his liquid medicines into his belly so he doesn't have to take syringe after syringe of poison-tasting medicines by mouth. They have weaned him off of other medications that were no longer essential. 

A week and a half ago, he spent 15 hours grand total over the course of two separate visits in the ER at CHOA. The first time, we checked for blood clots in his chest since he complained of minor chest pain. While there, he downed three bags of chips and a bottle of sweet tea. He had approximately four tests conducted on him. Three days later, he was back with pain and swelling in his knee, more tests, more chips, more sweet tea. None yielded clear reasons for his discomfort and follow-up appointments cleared him of any further need for follow-up. The highlight for us was no indication of cancer, potentially just mild infections. 

This week, he followed-up with the CHOA Pediatric Dentistry doctor to determine the state of his teeth post-operation last month and to check that any other concerns are stable. They are discussing the removal of 2-3 more baby teeth, though no plans have been made as of yet.

On the home front, Phin's oldest sister Av tested positive for Covid on Friday--the traditional day for Dustin and I to swap each week. For the last month, we have divided our time between Savannah and Atlanta--one parent per grouping of child or children. Our goal has been consistency for all of them. The positive Covid test rendered it impossible for us to swap. I have been quarantining in Savannah for for the last five days. Our Covid patient seems to have turned a corner as of this writing, but cannot return to school until tomorrow--five days after her positive test. Meanwhile, Obelia had Covid symptoms, then lost them, but never tested positive despite five negative Covid tests. Both girls were quarantined to their rooms where, like prisoners, they received their meals and drinks; they each have a designated bathroom. Cancer has taught us how to play it safe. Five Covid tests might seem excessive, but the clock for me to return to Atlanta and swap out with Dustin begins all over again as soon as she tests positive. The sooner she tests positive (if she's going to), the better. 

Days in Atlanta are long. 

But as of this writing, Phin has about twenty of them left.

What happens then? How do we keep Phin safe among the viruses and sicknesses that run rampant in the fall and winter months? With two sisters in-person at school? When can he get vaccines again since the ones he had as a baby are now void with his new bone marrow? When can he safely be in crowds? Will there be another Bell?

Those and many other questions are ones we hope to learn the answers to in the next twenty days.

Please offer prayers and warmth for Leo's family. Even the greatest blanket of love cannot comfort the coldness of grief they are cloaked in.

"Each man's death diminishes me,

For I am involved in mankind.

Therefore, send not to know

For whom the bell tolls.

It tolls for thee."

-John Donne

Phearful Symmetry

When Phin went to his 45-day post-bone marrow transplant checkup recently, his counts were great. The oncologist said that his blood was more or less indistinguishable from the blood of a person who had never had leukemia. Everything in his lab report looked wonderful. 

Everything except for one note very far down the report that indicated the presence of some atypical cells: “large, mononuclear cells with prominent nucleoli and fine chromatin.” 

Neesha and I both heard the same voice when we read those words, like a cold hiss in the darkness.

“Blasts.” 

Blasts are the ill-formed cells leukemia spits into the bloodstream. They are what a physician scans for in order to diagnose a patient with leukemia in the first place. Way back in 2022 when all of this began, when we took a jaundiced, frail, bruise-bespotted Phin to the doctor and then to the ER, it was the presence of blasts that ruled out simple anemia and scrambled the oncology team to assist us. The lab report we received that day also reflected the occurrence of these atypical cells. Now, after all of the chemo and remission and a bone marrow transplant and engraftment, there we were, yet again, with blasts.

I was at the hospital with Phin after his checkup when the lab report appeared. He was sleeping off the anesthesia from his latest bone marrow aspiration procedure. The oncologist sat me down in a private room. I called Neesha and put her on speaker. 

“We think these are recovery blasts,” the oncologist said, “where the new bone marrow is still setting itself up and not all the cells it makes are perfect yet. But there’s a chance it’s the AML again.”

The oncologist explained that when Phin got his bone marrow transplant, they shocked his immune system down to the lowest point it had ever been in order to give the donor marrow a chance to take hold without his existing cells trying to kill it off. But if there were any surviving leukemia cells in Phin at that moment, they could have exploited the weakness in his defenses and reestablished themselves. 

“So the blasts might indicate the bone marrow transplant worked,” the oncologist said, “or they might indicate the cancer’s back.” 

No one said anything for a long time. 

“When will we know?” Neesha's voice crackled through the speaker. 

The oncologist said the bone marrow sample collected from Phin that morning would provide the answers we needed about the blasts, but–and we knew this, having already been through it twice –the sample had to be processed in a lab in a distant state, and it would take days to get the results. 

“Hopefully, we’ll know something by the weekend,” he said. 

That was last week Monday. The oncologist was very kind. He told us to try not to worry. Then he departed to continue his rounds, leaving me to wait in a hospital room with my son and a feeling of infinite smallness from having become aware, in an instant, of two diverging universes, each exactly identical to the other except that in one of them his leukemia has returned. 

Just like when Phin was first diagnosed, and just like when he relapsed, it would be days before word would arrive about which of these two universes we now live in. 

And just like before, Neesha and I did what most cancer parents do, which is to try to buck up our spirits during the day to complete our individual tasks, to smile for the sake of our kids, and to project normalcy, sanity, and calm. Hope for the best and prepare for the worst! Like we’ve always done. While there’s daylight, anyway. But in the forests of the night where insomnia invariably deposits us, we were ensnared by the vines and brambles of what could have been and stalked relentlessly by the terror of what might be. 

Finally, at the end of the week, the oncologist called. I stared at my phone. 

Perhaps, I thought, I could make a new life for myself here in this moment. 

This was, after all, the vestibule of the future. What was stopping me from unrolling my sleeping bag and making this the place where I stayed from now on? And who would blame me? Twice before I’d burst through the door of an oncologist’s call about my son and on the other side found only anguish. I remembered that we’re 0-2 for hearing anything good when a health professional calls to talk to us about blasts.

If I could stay here forever, I thought, both universes could always still be possible, but as soon as I answer this call, one universe will disappear, and we’ll be trapped in the other.    

“Hello?” I heard myself say.

“Good news!” the oncologist said. 

Medical Updates

The large, mononuclear cells with prominent nucleoli and fine chromatin that appeared in Phin’s 45-day post-BMT lab report have been confirmed to be recovery blasts. We didn’t even know that was a thing. We’ll take it, though. 

When we asked about the likelihood that those blasts could have been the product of Phin relapsing again, the oncologist said he’d been cautiously hopeful that that wasn’t the case, but he added that AML isn’t the kind of disease you underestimate. 

Throughout the week as we’ve tried not to panic and to act like the worst thing imaginable wasn’t possibly about to happen to us again, Phin had an additional follow-up appointment, and everything else looks pretty good. He’s a little more than halfway through his 100 days of observation following his transplant now. One of his lines got clogged, but that’s resolved now as well. 

Phin On the Daily

Phin’s had his mom and sisters with him at the Ronald McDonald House for more than a week now. They’ve done crafts, played soccer, had movie nights, and explored some of the parts of the Atlanta area where it’s cool enough and isolated enough for Phin to safely go. His sisters will depart to go back to school when Neesha and I swap out tomorrow. A tearful farewell is expected. 

But sometimes farewells precede reunions. I stopped by Phin's classroom at back-to-school this afternoon, and his teacher is very excited to see him back this year. We don't know when that will be. It certainly won't be when classes start at his school on Monday. It might not even be this fall. 

Nonetheless, Phin's teacher is excited to see him, whenever it is that he is able to return. 

The Storm

Phin and Aspen, Christmas 2023

Back in February, when we knew that Phin had relapsed, I looked for solace anywhere I might find some. One of the places I turned to for comfort was a dichotomy of sorts and well outside of my field of expertise: statistics. While I was never a true scholar in math and had been told time and time again that each case is different, the statistics seemed to paint a clear, unbiased picture of what we may face on our journey. Statistics wouldn't sugarcoat the grim possibilities. They'd "give it to me straight" in ways that people--complete with our compassion, love, and empathy--might not. They initially provided hope (for Phin's specific genetics, only about 20% of patients relapse after complete remission) and, also, fear (statistics had always suggested a 25-50% overall relapse rate for pediatric AML). I liked to believe that some of those numbers were big enough for Phin to fall into them; after all, someone had help make up that other percentage--the side we wanted to be on.

After the initial shock and devastation of his relapse wore off, I looked to our friends whose children had not relapsed, our friends who'd fallen into the percentages I'd hoped Phin had been in. I reasoned that we could muster up the strength to fight this battle again, to trudge through the trenches of trauma, despite the relentless torrents barraging down on us, holding onto whatever support and strength we could find, if it meant the others who'd walked beside us could stay put safely on the other side, waiting to help us back out when we finally returned to the light.

 

And how they've cheered at each victory, cried at each blow, prayed at every uncertainty. I've said in many ways and many times that throughout this stormy season of heartbreak, we've been able to keep our heads high and our walk steady, our spirits and lives afloat because of the endless, gentle sea of love and support our village has rocked us on, sheltering us from so many hard things, like so many steadying hands holding fast to our boat despite the storm battering us around.

Phin and Aspen, Pediatric Specialty Unit, 2022

If you followed Phin's story through the first part of his journey beginning in March 2022 when he was just four years old, then you know another one of the sources I sought solace: one of his--and our--closest friends Aspen Shaw and her family. Aspen had been diagnosed with AML a mere two months before Phin so when we arrived, full of fear and overwhelmed by the monstrous enemy we found ourselves facing, Brandi and Michael enveloped us in hope, certainty that despite the enormity of the Goliath before us, our 3 and 4 year old Davids would overcome. During those dark early days after Phin's initial diagnosis and again when he relapsed, I could hear Brandi's words echo in my mind: "One day this will all just be a blip in the story of their lives". I found comfort, renewed energy in her optimistic perspective that each new cycle took us closer to the end. 

And then, after months of isolation, we finally reached the end, at opposite corners of the Pediatric Special Unit where Phin and Aspen counted down to the day they would ring the bell--together. One right after the next, they walked alongside their Beads of Courage, a chronologically organized chain of beads Brandi and I had helped them string together that told the story of their fight against cancer. The entire unit celebrated--residents and attending doctors, nurses, environmental services, nutritionists, other patients, family and friends. How the confetti showered down! The world--all of you--celebrated with us. Tears of joy and relief, our babies came home to their waiting families and we waded quietly back into our lives--gratefully, cautiously. 

Phin and Aspen after they rang the bell, Aug. 17, 2022

For the last two years, we've relished in their health, each new milestone, each clean complete blood count (CBC). In some way, during the terrible season we'd weathered together, Phin and Aspen had become all of ours--the Michaels, the Shaws--united. It was hard to envision any medical victory without both of them winning together, hard to even say one's name without the other in the context of clinic or cancer. With each visit to the hospital, we'd text to update one another. When Phin relapsed, the Shaws were some of the first to know. They mourned, prayed desperately, cried along with us. Our pain has been theirs. Despite this, we knew--and were glad--that this part of Phin's journey we'd have to go alone. The path has been lonelier, harder this time, but the Shaws have been here cheering, waiting to help pull us back into the light behind the storm.

Phin and Aspen, Dec. 2023

Two weeks ago, Obelia came to Atlanta to be with Phin, two of our three children had reunited, and it really felt like the storm around us had begun to subside; we basked in our children's joyous laughter, piercing like rays of sunshine through the darkened clouds. I remembered Phin's words, what seemed like ages ago as we drove away from his school for the last time before he was admitted to the hospital, a tempest raging around us as we crossed the bridge leaving Tybee and his little voice--full of so much hope and innocence saying: "Mama, look! Behind the storm there is light!" And it really felt, for the first time in a long time, like I could see that golden aura ahead, peeking like a halo around the edges of those blackened clouds that hung over us for months.

Oct. 2023, LLS Heroes

But the text message on my phone, like a flash of lightning, said: "Relapse."

The bolt of a text message said: "Aspen."

And the thunder rumbled darker around us.

And the tears, like torrents of rain, began to pour down again.

And, just when we thought it might end, the storm picked up speed, and fury, and treachery with a vengeance.

And we start this journey again, the light still there, just farther.

Aspen needs us. All of us. Phin said, at his worst, he felt "scared and weak". He does not want any of this for Aspen. He knows, we must now be their hope, be their strength, inch back into the blackness and shine our light for her to follow through this storm where we will stand waiting to guide her out of the trenches, out of the darkness, to pull her back into the light where they will emerge. Phin and Aspen: together.

Phin and Aspen, Dec. 2022

I publish this on the eve of a big day for both of our families. Tomorrow, Monday, April 16, Aspen's twin siblings will be HLA tested in their search for a bone marrow match. In the morning, Phin will undergo his day +45 bone marrow biopsy to determine how much percentage of his marrow is his donor's. We are hoping--praying--in both cases, the statistics stack in their favor; we are hoping for nothing but 100% from here on out.