Phirephlies

It wasn't long ago that Dustin asked if I thought it was time to relinquish the use of "ph" in place of "f" in our blog posts or titles. I said maybe it wasn't necessary anymore, but here I am, keeping it alive, unintentionally.

We've arrived in Atlanta. We're settled into the Ronald McDonald House and we've been pivoting as the need arises. Just days before we left, my dad (Pepop) came down with a cold. We couldn't take him with us because the risk to Phin and us was too great. A cold is not much to think about when it comes to any of us, but for Pepop, who is still regularly treated for his own cancer, it can take longer for it to resolve. For Phin, it could be catastrophic. For us in our life right now, it would mean Phin would have no caretaker to stay with him. We had to bid Pepop farewell and walk the path alone until he's better.

Phin and I went ahead, arriving in time for me to teach an evening class and for us to check out the Ronald McDonald House and the many sources of relief it has to offer. There is almost no way to describe what they've created here--this haven surrounded by woods--something I never stopped to think much about as I rounded up my change to be donated as we drove through a McDonald's for a Coke (my guilty pleasure because, let's face it, no one's Coke holds a candle to the one from the fountains at McDonald's) or to pacify the pleas from our kids. When I used cash, I'd stick some into the slots in the restaurant itself, again, never thinking much about it. "If you have enough to give, you give" has always been my motto. Now that we are the recipients of the immense care this facility offers, I cannot urge you enough to round up, shove some money in those slots; what we are experiencing is nothing short of the greatest peace of mind after a long day or many at the hospital. The only ache I feel is that Phin cannot get such reprieve from the hospital. There is always food--breakfast items, leftover dinners, hot meals at night. There are warm beds and laundry facilities; there are playrooms for the kids. There is solace. What I didn't expect was that there are also fireflies.

On Friday, we got news that our beloved Aunt Bev--Dustin's Mom's sister--had died quite suddenly and unexpectedly. It was impossible to stop the tears. Aunt Bev welcomed people into her life with her whole heart and devotion. She was kind and generous and it is impossible to think of a world existing without her. We carry this sorrow, unable to push the 'pause' button on life and all its whim throws at us, into our journey, shouldering it as we go.

Phin is starting to feel the effects of the Busulfan he's taken. This is a chemo with strength we haven't experienced with his prior chemos before. It is designed to kill his stems cells, clear out the old to make room for the new. It, like all the others, has side effects, and one of those is nausea. When I left Phin Saturday, he became nauseous and has remained that way ever since. He's a tiny guy, not much more than 44-46 pounds on a good day. When we started this relapse journey he was only 47-48. It's hard to see him this way--alternating between resting and vomiting, knowing how little he already weighs and worrying about how much more he can lose and maintain the strength he needs to fight through what's coming. It's hard to know that this might be the easiest part of the even harder side effects that are yet to come. 

Back at the Ronald McDonald House, I worried. I'm still worrying, really. I carried that worry and all the others that lie ahead as I went down to the car to bring up a care basket our dear friend Stephanie had dropped off for us. Worried about his strength, his body, his side effects, the ones yet to come, mourning Aunt Bev, knowing only one of us can go to her memorial, and neither of us can be with our girls to comfort them. As I carried the basket back to the elevator, looking into the woodsy abyss before me, I asked the universe, God, any force that has influence, to help my sweet boy, to heal him forever here with us, to hear us, and suddenly, there was a blink of light in the darkness. I stopped in my tracks, blinked a few times myself, took a few more steps and there it was again, and again, and again. Fireflies. 

Fireflies are going extinct. As a child, we'd see them all over, catch them in jars and watch their magic, then release them back into the night. As an adult, I've often wanted to share this magic with my children, but never seemed to find many around, causing me to research and discover they're dying off. Fireflies are symbols of hope--a light in the dark abyss when it seems there is none. I needed those blinks of hope at just that moment and I stood out there a long time just watching them blink golden in the dark, as if I were collecting them again in a jar in my heart to light the darkness when it comes, to remind me that even in the abyss of despair, there is hope, no matter how exhausting it may be.

Today is day -2. We count down to day zero, which is transplant day, then begin to count up again. Phin's birthday is day 1, the first day of his new bone marrow--a more fitting date could not have been chosen.

Today is also the internment of our dear Aunt Bev in Missouri. Dustin has joined his family there and will return tomorrow. He will quarantine for several days to make sure he's not unwell and doesn't unintentionally bring some ailment back to Phin. Please pray and send good vibes for all of us, including Phin's donor who will give her donation tomorrow. Every one you send out is like a firefly of light in the dark unknown that lies ahead.

-N

The Plans

The Treatment Plan

Neesha and Phin walk between units at CHOA

Somewhere across the Atlantic Ocean, far away in Italy, a 26-year-old woman with 0+ blood type is preparing to be put under anesthesia to undergo a thirty-minute or so procedure where surgeons will extract liquid marrow from the back of her pelvic bone. 

There's a good chance she may have to fly or take a train to a different city to give this donation. She might have to take off from work, and to leave all that's familiar to her--family and friends--to offer up this gift to a little six-year-old boy who lives across the ocean in the United States, a little boy who bravely battled leukemia when he was four-years-old, only to have it return again almost two years later. A little boy whose best chance at survival is her--a 26-year-old stranger across the ocean. 

Having studied abroad in Italy as a young twenty-something myself, I (Neesha) can almost smell the cornetto cioccolatto (flaky chocolate croissants) fresh out of the oven, wafting through the air as she passes over cobblestone streets in her ballet slipper shoes on her way to a train station somewhere on the edge of town. I can almost see her reflection in the windowpane transposing her face against the Italian countryside as the train rolls along to its destination. Feelings of anxiety, determination, conviction swirling inside as she moves further from home, closer to her donation site.

European donor laws dictate that we cannot know this woman, this willing savior, nor her identity in any way but through anonymous letters sent through the NMDP over the course of the next two years. Once those two years are up, if she chooses, we can discover her identity and attempt to thank her properly for her selflessness, no matter the outcome. Although really, what thanks could ever be enough? 

Until then, we are confined to anonymity, our letters subject to NMDP readers who will censor any identifying information that cannot yet be shared. This means we have approximately two years to learn Italian. I have already started Phin on "Ciao." I am brushing up on my Italian (it's been 23 years since I studied abroad in Italy). I propose we all learn so we can visit her together when Phin is 9 years old to show her how grateful we are!

By the way (interjects Dustin), we fully understand the need for anonymity in this process. We applaud that feature. Consider what might happen without that measure of anonymity. It isn't hard to imagine the terrible possibilities if the bone marrow donors and the recipients (and their families) all knew who each other were beforehand. Keeping secret the identities of the parties involved helps safeguard this beautiful, selfless, miraculous act against corruption, extortion, and violence. 

Phin prepares for more scans at CHOA

As so many of you know through following Phin's journey, we were in Atlanta for a good portion of this past week where Phin underwent a variety of tests: lung, heart, kidney function, psych evals, social worker evals, financial evals (for us)...etc. He had three pokes (needles), three IVs, and about 6 blood draws. He spent at least 5+ hours in various hospital rooms for two days in a row. As per usual, he was a rockstar. There were moments of fear; there will be lost of adjusting, but a few things were familiar: the warmth, care, and love for patients that we have grown accustomed to, and Aries, dog of war, who will be a furry friend to Phin during his stay. 

So here's the plan, as I know many of you have asked and been waiting for updates. Thank you for your patience and grace, Phin phans. It means so much to us that you care and that you're following along. It's easy to feel lonely in this childhood cancer world, but because of you all, we have never felt truly alone. 

Tuesday, May 21: Dustin, Neesha, Pepop (Neesha's Dad), and Phin move to Atlanta to settle in for Phin's transplant

Wednesday, May 22: Phin has his first official clinic visit (all his testing was in the hospital specifically, so we have yet to see the pediatric oncology clinic, which is also in the hospital)

Thursday, May 23: Phin admitted to hospital; central venous catheter line (aka Hickman or CVL line) placed, chemo begins*

Thursday, May 30: DONOR DAY! Our hero in Italy will donate her marrow today; the courier will await the completion of her procedure, then immediately take the donation, jump on a plane and fly back to Atlanta where they will bring the donation to Phin at the hospital

Friday, May 31 (aka Day 0 aka Phin's "rebirthday"): Phin will be given the new marrow from his donor. This is received by him just like a blood product transfusion via his CVL. The procedure is definitely more invasive for his donor than it is for Phin

Phin and Pepop have lunch 
after a busy morning at CHOA

Saturday, June 1: Phin and Pepop will celebrate their birthday. Phin will turn 7; Pepop will turn 82**

At this point, our biggest prayer is that the marrow will then make its way into Phin's bones and start setting up shop and churning out some new bone marrow. If this works, it's called "engraftment" and usually takes place about 2-4 weeks following his receiving of the new marrow. If it works, Phin's blood type will also change to reflect the blood type of his donor. He will go from AB+ to O+. 

There will likely be graft versus host disease (GVHD). They will be monitoring Phin's vitals, weight, blood work, and organ functions very closely for infection and diseases that can flare up or occur as a result of his marrow being wiped completely out. Some expectation of GVHD could result in the killing off of any leukemia cells inside of Phin that may have survived or hidden themselves well enough as to not be detected. 

(This reminds me: the results of Phin's most recent biopsy tell us that he is STILL in remission as we head into transplant (we were in Atlanta when we got this news, so it may have been overshadowed by all the new info we were getting, but was still HIGHLY celebrated when we learned of it.) 

For the weeks following, there will be many potential dangers and the three of us will be diligently taking turns at his bedside (two at a time) keeping him positive, active, and engaged as much as he is able...and watching for any dangers that may be on the horizon.

We will be in Atlanta, at the bare minimum, for at least 100 days following transplant.

The Home Plan

So what about our girls, right? 

The girls are finishing up school this coming week, then Obelia will begin theater camp and continue through most of June while Avonlie joins the fray of theater camp in two weeks. That means three shows in June. Once they finish theater camp, Av has one more theater camp in mid-July and both girls will attend soccer camp (maybe a volleyball one for Av, too) during July, as well. 

They will likely also be in Florida for a week or so visiting cousins and celebrating my sister's birthday. Granny will be the main touchpoint holding down the fort during this time, although it is our biggest hope that once we are confident the worst has past and Phin is stable, Dustin and I can begin rotating back and forth in Savannah and Atlanta every week or every other week so each of our children will see at least one parent on a daily basis. The twenty-minute commute from our house to the Children's Hospital of Savannah (CHOS) was way more convenient for swapping back and forth every day than the Savannah to CHOA commute (approximately 4-5 hours, depending on traffic).

A Word of Recognition

While we were in Atlanta, one comment I made again and again to various evaluators was that we are extremely fortunate. 

I know that sounds weird given what we're living and what lies ahead, still--and we have a lot of emotions about that we can share in another post--but we have the privilege of having very hands-on, supportive family. My brother Kiran was here taking care of our girls and keeping things on track for at least a month or more since Phin's relapse. My mom has been in our house doing the same and will continue on as long as we need her. My brother Amit, sister-in-law Seale, niece Genevieve, and nephew Jacob, have visited, picked-up, attended events and housed our girls multiple times across these last few months. My sister Sara, brother-in-law Coire, and mother-in-law Vicki all have plans for devoting their time to the care and keeping of our kids over the course of the next few months. 

We have an employer who rearranged scheduling to allow us to continue teaching (which, btw, we do both really love so I hesitate to even call it a job because it feels like so much more than that) and who provides us with excellent healthcare insurance. We have administrative healthcare professionals and organizations who have guided us through this journey, helping us secure secondary critical care insurance for Phin, making the phone calls and sending the necessary documents to the necessary places. We have friends who are willing to jump in at a moment's notice--to mow our lawn, to take care of our pets, to offer a set of watchful eyes, to pull in packages, give advice and lists on tips for navigating Phin's transplant. 

There is no doubt that having a child with cancer is a crummy hand to be dealt, but of all the terrible things about this phase of life, we are incredibly fortunate. Dustin says he's come to think of it like there are different kinds of good fortune. While were were extremely unfortunate in that our son got cancer, we are keenly aware of how fortunate we are. We have good health insurance, plentiful resources and numerous people who can help us, excellent healthcare options for Phin (locally and within a driving distance). We are going into this terrifyingly hopeful part of Phin's cure in a better position than so many other families. Being asked so many questions by our folks at CHOA that revealed the many deficits at work against cancer families really humbled us because even in the face of the worst, we are still blessed a million times over and we are so SO grateful. 

By Request

These are not needs. We talk a lot about "needs vs. wants" with our children so I want to be clear when I say that the following information is offered not out of need, but out of request from so many of you who want to do or give something. We have an Amazon wish list for Phin. It is tentatively titled his "Birthday and Rebirthday" list since from now on, he will forever have a two-day celebration of birth and rebirth. I can vouch for the fact that Phin is content and doesn't really want much of anything. The items on this list are items he's said he likes/wants, that we think he'd like or want; they may be items we see him enjoy regularly (Thin Mint cookies, hot chocolate, cooling pillows/pillowcases) or that he has a similar version of at home but will not have access to in the hospital. A few are things we will have use of while in Atlanta.

Phin’s’ Birthday and Rebirthday List

The Bonfire link is to Phin Phan merch! Our dear friends Betty and Paula and Heather really did a lot of footwork to get our first round of items created and dispatched. We are so grateful for all the time and effort we know that must have taken (although they humbly deny it). Phin does love to see people wearing his logo (courtesy of Marcus Dove at Kustom Hustle) and a portion of the proceeds from these items does still come back to us. In case anyone forgot to order or missed the ordering deadline, these items are "on demand" so you can get them as you think of them or if you decide you want something. 

Phin Phan Merch

Please do not feel obligated to do any of the above. Once we arrive in Atlanta and have a mailing address or room number for Phin, we will share that info, as well.

For now, we are spending the rest of the time we have together packing for the trip and loving one another. Monday we will have a small family celebration for Phin's birthday; Tuesday we leave for Atlanta. Wish us luck and keep those prayers, good vibes, manifestations...all of it...coming our way.

Thank you, Phin pham. You have no idea how cherished you are.

*Chemo in the days leading up to Phin's transplant will be harder than previous rounds he's endured, largely, because this chemo is meant to truly wipe his marrow down to nothing. We've seen his numbers low before, but this will not only wipe him out, but serve as an ablation to opening up his bones for the new marrow.

**If you are new to this journey, Pepop and Phin are birthday twins. Phin was born 75 years to the day of his grandfather's birthday. My dad--Pepop--was present for his birth and very nearly had to deliver his grandson because he was coming so fast. Both of these warriors have been battling cancer simultaneously. Pepop was diagnosed with multiple myeloma one year before Phin was diagnosed with acute myeloid leukemia. Pepop's plan is to stay with Phin throughout treatment. He is a retired physician and we are grateful to have his expertise and devotion in Atlanta.

Bridging Chemo: Complete

Hey there, Phin phans. Dustin here with a quick update as Phin prepares to head to the Children's Hospital of Atlanta (CHOA) for the preliminary and preparatory procedures before his scheduled bone marrow transplant (BMT) at the end of the month. 

As you all know, Phin completed the bridging chemo segment of the treatment last week after a harrowing scrape with e.coli that threatened to push back or derail the BMT. But it could have been even worse than that. As we've mentioned before (although not in a while), once people with leukemia start chemotherapy, it usually isn't the cancer that gets them. It's regular old infections--germs that normally wouldn't stand a chance against a functioning immune system. Phin's scrape with e.coli the week before last was the closest we've come to losing him since this whole thing started back in March of 2022, but his physicians made excellent decisions, the antibiotics worked, and Phin recovered. A few days later, he packed up his room, got one last spinal tap and bone marrow biopsy, said goodbye to his nurse squad, and headed home. 

Since it's also been a while since we did a photo essay, here's a quick recap of Phin's time at home so far, on the eve of his first on-ground CHOA appointment. 

Neesha and Phin look back as they exit the Children's Hospital of Savannah. Between his first rounds in 2022 and the treatment after his relapse in 2024, Phin has spent roughly eight months of his life inpatient at this facility. Phin crosses this physical and symbolic threshold with a measure of ambivalence--glad to be going home but apprehensive about leaving behind familiar faces. 

Requests from Phin are few and far between, but one thing he's said he wanted since early in his initial leukemia experience when he was four was to plant a tree--and not just any tree, but a sycamore, which can grow to be so massive that we weren't sure how to realize this dream in our own little yard. The neighborhood HOA made it happen for him, though. Phin's sycamore stands at the edge of the neighborhood playground overlooking the lake. He loved making its acquaintance.

Phin and his big sister Av play on tablets together in Av's room. Phin had missed his sisters tremendously during this latest round. Unlike his hospital stay in February and early March, when his sisters could come visit and even have sleepovers, Phin spent much of the bridging chemo phase in lockdown. Even with those precautions, infection found him anyway...which is why, when Av suddenly came down with a fever mere hours after this photo was taken, the house instant went to DEFCON 2 and Phin was evacuated to his grandparents' house. He'd barely even been home for a day. 

Phin's grandfather takes his temperature as Phin watches TV at his grandparents' house. The orders we received from the oncology team at the hospital upon discharge were clear: Bring him back the minute his temperature exceeds 100.4 degrees Fahrenheit. After we arrived and all that night and the next morning, Phin's temp would repeatedly approach 100 degrees, but it always came back down. His sister recovered the following day. 

Phin and his grandmother play the card game war. Tablet-less for the first time in weeks, Phin rediscovers the excitement of playing games face-to-face with his grandparents.  

The town where Phin's grandparents' live has lots of ponds inhabited by alligators, and a tradition of ours hearkening back to when we had to flee germs when he was immuno-compromised last time is the self-guided gator safari. It's basically just us driving around looking for gators or swooping through parks that have ponds and seeing what kind of reptiles we can find lying around without getting too close. We found three this day. 

His grandparents' town also has a playground that looks like a pirate ship. The last time we were there, he was in remission, and he played there with his sisters and cousins. As he played, we remembered that time, and we talked about how he'll get there again, only this time we'll do it in a way that makes it so his cancer can never come back.

"But it'll take so long," he said.

He's right, but he'll get there. He's on his way. He's made it across the bridge. 

When it cooled down in the evening, Phin, Uncle Kiran, and I went mini golfing. No particularly amazing shots, no holes in one, but Phin lasted all 18 holes. That in itself was a win. 

Last but not least, Phin did finally get to come back home, the sickness there having cleared, and even better because it was Mother's Day. Here he is celebrating with his cousin, G, and his mom. Cousin G embroidered his logo for him. Very awesome. 

That's all for now. On to Atlanta for a few days of appointments, consultations, and examinations at CHOA. Wish us luck, and we'll catch up when we return home at the end of the week. 

Phragility

The summer Phin turned four, Av came home not feeling well after camp. We figured it was a virus; pediatrician and urgent care suspected the same. She tested negative for everything: strep, flu, mono, covid, but her symptoms worsened. I remember her pale, her quiet moans. 

Av, Phin, and Obie, summer 2021

"It's hard to even breathe, Mama," she'd croaked out, clutching her throat, tears tipping out from her eyes, fast-moving, leaving dark wet tracks on her white face. 

Her fever stayed high following antibiotics and Tylenol, nothing touched the pain or temperature. It took days and two ER visits ending with an admission to the hospital before figuring out what was wrong. Despite having been rapid-tested twice for mono with negative results, she ended up being hospitalized for mono--not your usual kind where you might be super tired for a long time and weak, but the kind that does all the rare things that only happen occasionally: enlarged spleen, anemia, swollen lymph nodes so big they pressed against her airway, making it difficult to breathe. She needed strong steroids, could barely walk (for weeks) for more than a few minutes, couldn't sleep for months for fear of her airway closing, remembering the terror and pain she felt when it nearly did.

Another time, just after we moved to our house, Dustin ran a tiny, three-year-old Obelia into the kitchen bawling, her hand covering her mouth. As he set her on the kitchen counter yelling for me to come look at her, she moved her hand to reveal a face full of blood; it poured out of her from a gash just below her lip where she'd nearly bitten through her mouth after tripping on the porch stair and falling. Even now, I feel woozy to think of it. In the ER that same day, she begged me not to make her do it. "It" meaning endure a numbing needle to her face, followed by stitches sewn close together to close the fabric of her skin. 

If you're responsible for a child on a regular basis, you know the desperation and pleading in their voices, the ache of having to force something onto them for their own good despite having spent years teaching them to advocate for their own bodies and to never accept anything by force. It is painful to live out this juxtaposition, to feel like a hypocrite as you become the enforcer of the unwanted because you know it is needed. Maybe we comfort ourselves knowing that it's "for the best" and that "one day they'll understand", but when a child is battling cancer and you face this limbo several times a day with no certainty of healing in sight, this pain is a sustained one, the uncertainty of "one day" making your role harder to accept. What if we don't make it to that day of understanding? Will they carry this indignation at your betrayal? Will it be what they recall at the end?

And, at the time, I was traumatized by every one of those instances. I still feel a sort of helpless anguish remembering Av's fear of falling asleep and Obelia's desperate pleas. There are other experiences, surely, that I'm forgetting now in the wake of the life we are living, but each time a medical emergency happened, my heart pumped, my mind struggled to keep from panicking, I worried and waited for the worst possible news. When it didn't arrive, we went blissfully on our way, tucking our biggest fears aside for bigger medical emergencies, secretly believing that they would never come.

Until they did.

Phin's AML diagnosis came a mere nine months after Av's stint with mono, the effects of which would linger long after she left the hospital. At the time of Av's mono diagnosis, I (and friends whose children had faced down cancer) had feared they would tell us she had cancer. We even asked and the attending doctor assured us her blood count numbers would look far more frightening than what they were seeing then. Relieved, we celebrated having a clear diagnosis, others celebrated with us. We knew in our hearts that what we were really celebrating was the curability, the commonness of what she had and the reassurance she'd conquer it and be back on the streets in no time riding her bike, skateboarding with friends. We celebrated that it wasn't cancer.

How innocent we were of the foreshadowing that came with that experience--how, less than a year later, we'd come to learn exactly what a cancer patient's blood counts looked like, exactly what it felt like to live in that sustained state of terror.

You may have noticed we have our finger on the pulse of Phin by the numbers. We know exactly how many nights he's slept in a hospital away from his bed, our home, his siblings; we know exactly how many blood draws, clinic visits, infusions he's had. It's not because we're numbers people--if you've been around long enough, you know we are not numbers people (ELA all the way!); it's because of Phin's beads. One of the things Phin enjoys and is most proud of are his Beads of Courage. When Dustin and I swap out, I usually ask Phin if they've updated his booklet. He tells me no (even if they did) and we talk through it together. 

Phin and his beads

"I had a bandage change. That's a bead. And the thing here," he says to me pointing at the NG tube woven through his nostril and taped to the side of his face. "Is that a bead?" "That's a bead."

Phin gets a bead of courage to mark the challenges he overcomes during his cancer journey. He gets a different colored bead for things like bandage changes, overnight stays in the hospital, pokes/blood draws, IV infusions, chemotherapy, medicated mouthwash and eyedrops, all sorts of tests (echocardiograms, CT, Xray...etc.) and on and on. His booklet fills up by the day and once we complete one, we move onto another. This is how I'm able to quantify these experiences, to tell you that in the last few days Phin has had one bandage change, two fevers, constant IV infusions, at least 14 blood draws, light sedation, five CT/Xray exams, and two NG tube placements and an eventual removal. In total, I think it's safe to say he has collected more than 1,000 beads over the course of his treatment, and having now grown more familiar with what they're all for, I can assure you there are many I forgot or didn't realize he should be receiving. Some days--like the last few--there are many beads; other days there are just a few. Each time we look at his beads, I am thrown into something of a montage-daze, recalling each event that took place on that day and the series of days that might follow, remembering the ache of each memory. All the moments of begging and reluctant acceptance we go through in one week with Phin amount to more than I experienced as a parent with three children combined across six years before Phin's original diagnosis.

When I think of trauma now, I envision  holding Phin's hands for comfort while he willingly lies on his back and endures the removal of a sticky bandage that tugs painfully at the sensitive skin on his chest, over his heart, and beneath his armpit no matter how careful the nurse is that removes it. His tears stream; he screams about it hurting, about him hating it, about how he wants them to move slower or faster. He leaves his body open and still for his nurses despite this pain, never protesting against what they do with anything more than his words, knowing it's an essential act that must be accomplished no matter how much he hates it. We all--a parent, nurses, Phin--go through this at least once every seven days.

I think of Phin's eyes welling up with tears as I lie him in the cradle of a CT scan machine, promising him I will be right there, I will hold his hand the whole time, begging him not to cry hard, to stay calm so we don't have to repeat the scan again. The tears stream as they shift him into the mouth of the machine, his tiny hand squeezing mine as he goes, his muffled sobs as he tries to stay calm. 

Phin prepping for another CT

I hear doctors explain that they want to run tests to make sure there's "no bacteria around his heart" or that he doesn't have symptoms of "typhlitis"--a life threatening inflammation for a patient like Phin. Every treatment asks for us to compromise, to bargain, to potentially sacrifice some part of what should be a normal part of life for Phin for just a chance for him to live. Imagine being asked, not hypothetically, but with very real likelihood, on a daily basis questions like: "Would you trade your hearing for a chance to live? What about your ability to pay attention? How about a few inches of height? Your ability to have children of your own in the future? Would you be willing to potentially come to the oncology clinic regularly for the rest of your life to treat long term effects of all the blood product transfusions you had? Hip replacement sound OK, even if it happens late in your teens and you'll need both? What about your major organs--are you OK with damaging your major organs in exchange for being allowed to keep living?"

These questions remind me of the futile bargaining I have done and am regularly tempted to do with God or any unseen force who might hold reign over divine interventions. Because, as I know you have experienced at least once in your life, there is nothing I wouldn't give, nothing I wouldn't trade to have Phin back home, healthy and driving his sisters crazy, running out the front door to play with friends, swimming in our neighborhood pool all summer long, slipping quietly into our bed in the middle of the night. The difference is that my bargaining is wishful; the repercussions we bargain with for Phin during treatment are very, very real.

Phin on the mend

For Phin, there has almost always been trauma; his life is a series of unending traumas that he has accepted, that we cannot take away, cannot stop and that I can hardly bear, stopping myself a million times a day from breaking down in the face of his bravery. And every day we face a new onslaught of trauma on his behalf, secondary to the constant trauma he has come to know as the definition of life.

Yet he laughs on, plays on, endures each unimaginable request, each monstrous fear placed before him, slaying them all each day in quick succession in ways most of us will never have to understand.

And, my God, does he do it all with so much grace.

Phevers

Hi Phin phans. It's Dustin, popping in with an update on Phin. Here goes.

So much about Phin's current experience with leukemia resembles his first. A lot of the same people are caring for him. He's staying in the same rooms at the same hospital. His habits and routines have resumed--the way he races through the corridors when he's feeling well or tiptoes around looking for nurse friends to prank. And Neesha and I have readjusted to the alternating one-night-at-home, one-night-at-the-hospital tag team act that we did the first time. 

Mostly.

Occasionally, I wake up in the flickering monitor darkness of Phin's hospital room and become briefly disoriented in time the way people who travel become disoriented in place. I blink and know exactly where I am, but not exactly when. Is the chemo-ravaged little boy sleeping next to me expecting to complete his remaining treatments and go home soon, or has he just relapsed and come back? What kind of stone sits in my chest, the raked kind that tumbles into the fire, or the thrown kind that sinks into the depths? Was everything we did with him over the 18 months he was in remission just a dream? Did we ever leave here at all? Sometimes it's hard to tell. The resemblances between this time and last time are too numerous and too great. 

But there are also differences. Last time, as his nurses will all attest, Phin sailed through the rounds of chemo and count recovery without major incident. There were setbacks and delays, yes, as well as moments of real terror, pain, sadness, and dread. For the most part, though, last time Phin avoided the complications that can happen to people when they have key components of their immune systems taken down to zero--serious infections, high fevers, racing heartbeats, tubes that go up the nose and down the throat. 

No more. The past 36 hours were originally scheduled to represent a kind of home stretch to the bridging chemo phase as he completed his oral chemo and his blood counts flickered back to a level resembling normal. Instead, Phin has danced on the edge of a cliff, his pulse never dropping below intensive cardio workout levels, his fevers spiking regularly and rarely dropping below 103 degrees for long. He picked up an infection from e.coli, most likely the result of the bacteria leeching into his bloodstream from his constipated bowels and multiplying rapidly there in the absence of any immune response. 

Last night marked the crossing of a threshold for us--one that many other kids with cancer have already crossed--and it was truly a study in anguish, one in which the unwavering vigilance and heroism of Phin's nurse Alexa cannot be overstated. 

Medical Updates

Things are not great right now, but we're cautiously optimistic they're getting better. Today, Phin's care team made some changes, and we're seeing little signs of improvement like lower fevers with more time between them and a heartbeat that hovers around 140 bpm instead of 200. Progress. 

Priority number one is to stabilize Phin. After that, we can determine what havoc this infection incident will play regarding his bone marrow transplant. Remember, this phase of Phin's treatment was called "bridging" because it was supposed to be like a bridge from his return to remission from his initial relapse to the inevitable BMT--his only option--at CHOA. 

And here, buried many paragraphs down in this update, is the feel-good lede that we had previously hoped to put front and center: A bone marrow donor for Phin has been located who has confirmed a donation date of May 30. Since bone marrow cells have an extremely short shelf life at the temperatures they're subject to during transit, Phin's transplant date is scheduled for May 31. A lot of things have to line up and go right for him to receive those cells. He needs to recover his counts and be discharged. And he needs to appear at his preliminary BMT evaluation appointments at CHOA on May 7. 

But first he needs to beat this infection, so we'll cross that bridge when we come to it.  

[April, 2024]

The Phindex

Units Phin received of blood: 2

Of platelets: 3

Days of consecutive IV chemotherapy: 4

Number of oral chemotherapy pills swallowed: 88

Length of inpatient hospital stay in days: 20

Bandage changes: 4

CT scans: 1

X-rays: 4

NG tube placements: 2

Number of times Phin achieved uncontested victory over his nurses and father at UNO: <5

Likelihood Phin plays +4 card while laughing maniacally: 100%

One Phoot In Phront of the Other

A dear friend wrote me the other day, reaching out to offer support and love in that ever-present way you--our village--keeps showing up for us. She wrote that our posts: "make it seem like you and Dustin have it all together and things are going smoothly, but I know in my heart there's so much more behind the images and the updates."

This is true. You probably all know this in your hearts. 

And I know it looks like we're strong; people say this a lot, but we are no stronger than anyone else. The way I see it is this: when your child is diagnosed with cancer or another potentially deadly disease, you have two options after you allow yourself a complete and utter meltdown: fight or paralysis. You put one foot in front of the other; you figure out how to navigate this new life; you keep moving forward because to give into the alternative is a paralysis of movement toward saving your child—time is not a luxury you have; paralysis is absolute destruction to the family life you've carefully curated and nurtured since its inception, a potential destruction to the child you desperately cannot imagine living without. And, make no mistake, some people have little choice but to choose that option. Some people live in countries that can't offer the treatment Phin is receiving here or they can't afford it if they do; places where there is no option for support. They are desperate, but limited. Some people carry crosses much bigger than our own: war-torn countries where they have to flee just to receive medical help for their child, more than one child with a potentially fatal diagnosis or more medically complex situation.

But I didn't start this post here today to make you sad. I am inspired to write to verify what my friend said because she is 100% correct. As I’m sure so many have thought and I know some have expressed, I can confirm: this life is hard. Dustin and I are both still working full time. Our girls are still going to school full time across the city from where we live. Dustin and I are both teaching from the hospital some mornings and sleeping at the hospital every other evening so we can see all of our children. During the workweek, we only see our girls every other day. By the time we get home at night, they're already in bed. This also means that if they need help with homework and don't want to (or can't) work with the adult who is home, we are FaceTiming to study spelling or vocab, social studies, math; we are talking through essay-writing as if I'm teaching another Zoom class. Every one of these situations is, in some way, representative of a gift we’ve been given by the people in our lives. We are fortunate to be able to continue our lives, to reshape them—however hard it may be—to continue our life in these ways.

FaceTime HW with my Girls

Any given workday for me or Dustin might look like this:

• Wake up in the hospital between 6-7 a.m.
• Get ready for work
• Grab laptop and teaching materials, set up "class" in a quiet space of the hospital
• Teach at 8 a.m. for 2.5 hours on Zoom with a brief break to check in on Phin (who is usually sleeping, but also currently monitored by Uncle Kiran who has been showing up before class to stay with him when he wakes)
• Struggle to find foods Phin will eat, try to keep stuffing him with those foods
• Spend the rest of the day trying to engage him with activities while also responding to emails
• Spend the rest of the day trying to keep Phin from hurting himself because he has unusually high energy for a child with almost no platelets, red blood, wbc or hemoglobin; his brain does not recognize that his body should be too tired to race through the halls on a tricycle, so he does it. A lot
• Collect, measure, and record Phin's urine and poop
• Help administer medications and prophylactic treatments (mouth washing with a sponge-stick doodad) throughout the day from the moment he wakes until bedtime

  

  Phin's bath

  
  
• Give Phin a bath (this is not your ordinary bath; Phin cannot get wet, so we use a bag of 6 sterile wipes--one for each limb, front torso and back--to wipe him down thoroughly)
• Wipe down and set up a fresh bed with clean linens (Phin must bathe and have clean sheets every 24 hours to help prevent infection and maintain a sterile environment)
• Get Phin to bed (ha; this boy does not want to sleep)
• Grade and prep for classes while he sleeps OR while lying beside him trying to get him to go to sleep
• Either sleep in the hospital crammed into the bed with Phin who prefers not to sleep alone here, potentially (if you're a light sleeper like me) waking whenever a nurse comes in to take vitals or draw blood, or sleep on the parent bed, which feels perfectly comfortable because we're too exhausted to notice if it's not OR
• Swap out around 10:30 p.m. when the spouse who has been home teaching an evening class is done teaching and travels back to the hospital to relieve you 

D (preparing his lesson)
and me (teaching over Zoom)
on separate occasions from the hospital

So while this life is hard, no doubt about it, it is as smooth as it can be, given the circumstances, and it's smooth because my brother and my parents have been able to take turns moving into our house to help take care of our girls. It's smooth because our employer agreed to put our classes fully online this quarter, allowing us to make this life as livable as possible without losing our ability to pay our bills. It's smooth because our children's friend's parents are the best friend-parents around; their school is compassionate and concerned and invested in doing what they can for our children. It's smooth because we have an army of people ready to take shifts when needed, because we have so many people rallying and doing for us what we ourselves don't even know we need. Most importantly,  it’s smooth because Phin's care team is incredible; they make him feel safe and loved. because Phin is doing relatively well--and I attribute this to science and allllll the prayers and love his Phin Phan Tribe and, even strangers, are constantly sending. 

My friend was right, though, there is so much more behind the images and updates. 

There are the very physical responses Phin has, the uncertainty of how all the chemotherapy is affecting his internal organs and functions. No matter how many videos or photos we take, we can’t know those consequences just yet.

Phin has nausea some days and unexpected side effects others. Just this week, he kept shaking his head like he had water in his ears; we worried this could be tinnitus, a potential chemo side effect that has no cure. A constant ringing in his ears for the rest of his life. Most days he lacks an appetite. He's lost almost four pounds again. When he does find something he likes, we stock enough to have available whenever the mood strikes. Right now, it's homemade pancakes. When I was home yesterday, I made three batches.

There’s the anxiety. So much of it. A burden you don’t see but that each of us carries.

Obelia had a big birthday (10!!!) and it was a hard one because we couldn't all be together on the actual day. She didn't want to celebrate. She expressed her sorrow, her anger at just wanting everything to be normal again, for Phin to be home.

Obelia's early celebration so
Phin could be home

There’s the fear of what this is doing to our girls. It’s hard to keep them on track academically because we're not consistently home to continue helping them in ways we know work for them, ways we’ve been perfecting for years. It's hard to not know--and fear--how all this is affecting them, the damage this trauma may be wreaking.

There’s the difficulty of not having consistent interaction with the only other person as attuned to the impact of this life as you, the ability to connect over this crisis we are living through. Dustin and I are barely in the same room at the same time for more than 10-20 minutes . The majority of our conversations happen in snippets or via texts. We are like an estranged couple sharing a house but never living in it at the same time. 

 

There is exhaustion. So. Much. Exhaustion. The emotional, mental, and physical toll, the incredible weight of it all. My soul is exhausted in ways I’ve never known possible. There is hope but, as Dustin has said, even hope is exhausting. Perhaps the most.

And I would be a liar if I said there weren't moments at the end of the day when I'm walking back to the house, glancing down at the grass, that I don't consider giving in, collapsing onto the ground, lying against the earth in the prickling blades, stars, clouds spread out above me like the dark, distant abyss I see ahead of us, and sighing long and deep with the relief of not having to hold the weight--the sheer magnitude of it all--of myself up anymore, just for a few minutes. Not having to conjure up the strength to keep myself in motion--the motion of our lives, putting one foot in front of the other--anymore, heading toward that mysterious, fate-filled darkness of the terrifying unknown that lies ahead. 

Of the choices we get to make, and we don't really have many, not to mention every one of the ones we have are hard, we choose to celebrate every moment Phin feels good, every moment we're all in the same city and we get to see our girls for even 45 minutes every other day (which is what we were doing last quarter when Phin first relapsed), every moment of normalcy we can snatch--a few hours at the pool with the girls splashing in the water, chatting with our neighbors, soaking up the Vitamin D that

makes us happier; chasing Phin around the unit, the squealing laughter and tires of the tricycle he rides as he goes; walking in on late night games of UNO, Phin and his nurses huddled around as if at a poker table, slapping down cards and sharing stories; late night rom-coms with our girls, buttered popcorn passed between us as we burrow further into minky blankets. We are keenly aware these are precious moments. 

We cannot live any other way but to relish in and be grateful for every one of them. We keep it together because we have to. The alternative is unthinkable.

The future is too uncertain to do anything else.

-N

Phinally, Some Good News

Hey there Phin phans! Dustin here with an update. This one’s pretty good! I love it when I get to deliver good news, and I’m sure if you’re reading this, you’re probably ready for some, so let’s get into it.

Phin’s in remission again! The results of the bone marrow aspiration he got before he left the hospital on March 20 show that there’s no detectable disease in his bone marrow, which is where this kind of cancer lives. 

Here’s what it means: 

• The cancer responded to the chemotherapy like it did the first time. Over the past four weeks, we’d seen the withering effects of the chemo on Phin’s body, but we had no way of knowing for sure what it was doing to the disease itself. Among our greatest fears since Phin relapsed was that the drugs wouldn’t work on it a second time because his cancer had “learned” or mutated or developed a resistance to it. According to the lab report, it doesn’t seem like this has happened. 
• Phin can advance to the next phase of treatment–bridging chemotherapy, or BT. My understanding of this phase is that it’s like a “bridge” from the reinduction phase he just completed to the bone marrow transplant phase that comes next. It will involve more chemotherapy to maintain his current state of having no detectable sign of disease. Again, I’m not a medical professional and my comprehension of this stuff relies almost entirely on metaphors, so when I tell you I think this is the part of the MMA match right after a fighter falls, when the other one immediately climbs on top and starts pummeling their head into the mat, take it for what it is; the cancer just took a devastating hit and went down, but it will almost certainly pop right back up unless Phin and his doctors keep hitting it. 
• Reaching the bone marrow transplant phase is more likely now. For relapsed AML patients like Phin, there’s only one treatment option–get into remission again and do a bone marrow transplant. However, the patient can’t get a bone marrow transplant unless they have organ function above a certain threshold, and the longer it takes to get back into remission, and the more chemo it takes to do it, the lower the patient’s organ function drops, and the more unlikely it is they ever make it to the bone marrow transplant. Without the bone marrow transplant, it’s game over. That’s why it’s extremely good news that Phin went back into remission so quickly. 

Phin’s enjoying a few days at home between rounds right now. He entered the children’s hospital on February 15 and left on March 20. If all goes well, he’ll have another week home before he goes back in. He spent his first couple days of freedom running around outside, going out for ice cream with his sisters after they got out of school, riding his bike, and hanging out with Sundae, our family dog. Today–March 23–is the second anniversary of the day Phin entered the hospital in 2022, and Phin, Neesha, and I spent it with two of our favorite organizations: Camp Sunshine and Oatland Island Wildlife Center. We all had an amazing time today.

   

You can expect another update soon with some more info, but for now, let's just enjoy the win. I'll wrap this one up with a thing I used to do last time Phin was inpatient for chemo and recovery–a kind of roundup of each phase by the numbers, heavily inspired by the Harper's Index. So I'll leave you with that. Thanks as always for being a part of this.

[February-March, 2024]

The Phindex

Units Phin received of blood: 4

Of platelets: 6

Consecutive days of chemotherapy: 6

Length of inpatient hospital stay in days: 34

Bandage changes: 7

Sedations: 3

Bone marrow aspirations: 2

Spinal taps: 1

X-rays: 1

CT Scans: 1

MRIs: 1

Hospital leprechauns caught in St. Patrick’s Day leprechaun trap: 1

Factor by which visits from leprechauns outnumbered visits from the tooth fairy: 2

Completed laps around the pediatric specialties unit floor in ride-on SUV: >20

Friends’ end-of-treatment bell ringing ceremonies attended: 2

Ratio of visits from ponies to visits from dogs: 1:4

Ratio of visits from martial arts senseis to visits from magicians: 1:1

Hospital room sleepover parties with his sisters while they were on their spring break: 5

Percent increase from 2022 in visits from his sisters now that hospital COVID restrictions have lifted: 100%

Approximate percentage of Phin's total lifespan spent in the hospital: 6.7%