Phincoming Part 2 (Aka: Close Encounters of the Phlu Kind)

Phin is home! Well, kind of.

Dr. P. found Phinny in the hall  before his discharge
because she was having a hard day and "needed a hug."

On Wednesday, the doctors gave us the go-ahead to bring Phin home on Thursday! His counts had recovered enough to bring him safely home. By Wednesday night, directly following the graduation ceremony for my beloved SVA students, I had received word that at least three of Avonlie's (our oldest daughter) circle of friends at school had now tested positive for Influenza A. Standing outside of the church where the graduation ceremony had been held, in the midst of rejoicing students in their white caps and gowns and parents snapping photos, I googled the closest, most well-reviewed Urgent Care and rushed all three of us Michael Family women to it for an immediate flu test. (If you ever find yourself in need of an Urgent Care in downtown Savannah, it's the one at 818 Abercorn you want to find your way to. They were tops!)

Despite being negative when we tested (probably too soon because she started coughing the second we left the Urgent Care), it became clear by Thursday morning that Av had all the symptoms: low-grade fever, stomachache, headache, cough, misery. So, we did what any other CK (cancer kid--I'm learning the lingo here still) parents would do and asked his doctors to keep Phin one more night while we figured out if any of the rest of us had the flu or symptoms of it, where we could safely take him and, most importantly, whether one of us had inadvertently carried the flu to Phin.

Living la vida flu life

By Friday--after almost 24 hours of constant anxiety and stress pulsing through my veins, inciting my watch to suggest several times that maybe I needed to take some deep breaths because my blood pressure was "higher than usual"--, Phin had also tested negative, none of the rest of us had symptoms and Av had successfully been confined to her room for 24 hours where she remains even now (Saturday morning fever-free, so fingers crossed we are near the end).

So, Phin came home--to Hilton Head where my parents (who are currently visiting my sister and her family in Fla.) live. My parents bought a home on the island in 1997 and fully retired there years later. Their home has been a spiritual sanctuary for me my whole life--a place to escape, near enough to the beach to hear and smell the ocean and walk a path to its sands--but right now it's providing a literal sanctuary for Phin and Dustin where he can be free to run around and play without fear for his health. We are blessed to have this option. I have spent a lot of time wondering what we would do if we didn't: leave him in the hospital? Take him to a hotel? I cannot help but see these small blessings all around us: Av's flu presenting before we brought Phin home; my parents living close enough to provide safe haven while I fumigate Av and the House of Flu; having friends who will drive to the hospital to pick me up at a moment's notice (love you, Bev!); having a husband who has proven he can do anything--flush lines, spend weeks in the hospital on end, convince our son to take his gross-tasting oral medication and keep an infinitely active almost-five year old entertained with creature adventures everywhere they go.

Phin's first and last day of school. 

Thus marks the conclusion of Phin's second round of chemotherapy and the start of a much-needed break from the hospital to enjoy his last few days as a four-year-old. Phight on, Phin!

Dustin's Phindex, Month Two

Units Phin received of blood: 2

Of platelets: 1

Consecutive days of chemotherapy: 8

Sedations: 1

Spinal taps: 1

Biopsies: 1 Bone marrow aspirations: 1

Bandage changes: 5

Ratio of bandage changes requested/assisted by Phin to unrequested/unassisted: 2:3

Days since Phin began announcing that he wants to grow up to be a zookeeper and a nurse: 25 Factor by which Phin's arsenal of "snake prank snakes" has increased since Round One: 2

Phin's victories to losses in his Orange Juice Challenge, where he must swallow all of his medicine before his opponent can drink one serving of orange juice from the hospital cafeteria: 17-1

Phin's nurses' OJ Challenge victories to losses: 1-17

Number of times Neesha or Dustin has defeated either Phin or any nurse in this challenge: 0

Number of times Dustin probably would have won had he not started laughing and had orange juice spurt out of his nose: 1

Number of days since Phin was readmitted to Savannah Children's Hospital's pediatric specialties unit without workplace phincident: 0

Minutes between Phin picking up a Flamin’ Hot Nacho Dorito chip, taking one small bite, and deciding he didn't want it: 16

Average heart rate reading on Dustin's watch when Phin is zooming around the hallways of the Children’s Hospital of Savannah: 105 bpm

Portion of fights between Dustin and Phin that involve safety, listening, and following directions: 2/3

Portion of fights that involve Blippi: 1/3

Approximate number of minutes each week that Phin spends watching Paw Patrol: 66

Approximate number of minutes per Paw Patrol episode that Dustin spends wondering whether outfitting a small team of puppies with military grade vehicles and equipment would be more cost effective on a municipal budget than staffing various emergency services departments and paying dozens of employees’ insurances and pensions, and also wondering whatever happened to the people who used to do those jobs before the puppies arrived: 2

Number of visits to the playground consumed by Phin's favorite game--riding around and screaming while his visitors throw foam or rubber balls at him: 12

Number of occasions when someone from the Children's Hospital has come out and said "Stop throwing balls at that cancer kid, you monsters": 0

Factor by which playground sightings of house finches outnumbered those of northern cardinals: 5

Factor by which playground sightings of Carolina anoles outnumbered those of green tree frogs: 6

Number of Carolina anoles that Phin discovered while they were in flagrante delicto: 2

Incidents in which Dustin evoked "The Circle of Life" to explain something that was never even mentioned by a character in The Lion King: >1

Percentage of internet logins in which Dustin reflexively thought that the man pictured on the hospital guest access landing page looks like he is in the midst of reconsidering all his life choices because whatever he's dealing with is far beyond anything medical school prepared him for: 100%

Percent increase in Dustin's texts dunking on Neesha for not updating the Phin blog enough: 1000% 

Percentage of leukemia in Phin's bone marrow after initial chemotherapy induction: < 1%

Probability that Phin will still need to complete all of his scheduled rounds of chemotherapy and count recovery: 100%

Phrequently Asked Questions

Hey there, Phin phans! Dustin here, ready to knock out a quick Q&A. Let's do this!

Q: How did we know that Phin was sick?
A: First it was bruises. Lots of bruises. We thought that maybe his sisters might be getting a little too aggressive with him, or that maybe there was a bully on the playground, or that maybe he was taking a few hits we didn't see at soccer. Then we noticed his skin looked pale all the time. He started acting really whiny. Then he lost his appetite. His lunches started coming home from school uneaten. He started asking for ice cubes to chew--apparently something common to people who have anemia. The last thing to go was his energy. Phin went to school the same morning he got admitted to the hospital, but in the days right before that he started crashing out way earlier than his normal bedtime and he was hard to get up in the morning, which was very unlike him.  

Q: What stage is Phin's leukemia?
A: Phin has acute myeloid leukemia, which doesn't really have stages in the same way as other kinds of cancer. It isn't like, for instance, when my mom was diagnosed with stage 3 breast cancer in 2004, she could say "stage 3" and people would automatically understand something about her disease and her chances (way to keep beating those odds, Mom!). The stages are a kind of shorthand. But if you want to know about AML and its subtypes, prepare to go into the weeds and learn about chromosonal inversions and translocations and several tables' worth of factors that help to classify people with AML based on what the disease is doing in their body, the kind of genetic makeup it has, and how likely it is to respond to treatment. 

Please know that my attempts at science-y medical explanations are both dubious and clumsily made. Like when the kids pile together a bunch of junk and blankets and cardboard boxes and call it a castle. It's cute, but it's never going to withstand any kind of serious bombardment. It can barely even stand up on its own. But if you're serious about wanting accurate information on AML, try here and here and here. 

Q: Can they operate on Phin to take the cancer out? 
A: So for me to understand the kind of cancer that Phin has, I had to unlearn a lot of what I thought I knew about cancer in general. Phin's cancer is in his bone marrow and blood, so there's no tumor to chop out. It's like sometime earlier this year (probably) a switch got flipped in Phin's bone marrow, and suddenly instead of making normal white blood cells like usual, it started spitting out these goblin white blood cells instead that took up all the space in his marrow and blood where healthy blood cells would normally go. So instead of hacking into him or firing radiation at him, he gets intensive doses of chemo, again and again and again, twice a day, 8-10 days at a time, recovers in the hospital for weeks, goes home for a week, repeats. 

Q: Does the chemo cause Phin pain or make him tired?
A: So far, it doesn't seem to. I ask the doctors and nurses about this a lot. I remember various family members' experiences with chemotherapy, how painful it was for them, how bone-achingly tired it made them. "Different cancers, different chemos," was the response that made it make sense. For instance, when Phin gets chemo, he revs up. I don't know if it's because chemo annihilates the thing in his body that made him weak or if there's some other explanation, but he's nothing like what I expected a cancer patient getting chemo to be like. I expected lots of naps. Like he'd crash out and I'd get my final grades in early. But no. He came off of eight straight days of chemo bouncing off the walls and hasn't really slowed down since.    

Q: How long does he ... I mean ... what's his prognosis?
A: While AML relapse occurs within five years for 50% of kids who have what he has and who are in his age range, Phin is so far responding very well to treatment and is succeeding in avoiding infections that would endanger him in his immunocompromised state and/or interfere with his recovery.

Q: Do you think the cancer in his blood is spreading all over his body and seeding tumors all over his organs?
A: As an act of self care, I'm going to pretend you didn't ask me that. 

Q: How long will Phin have to stay in the hospital?
A: It depends. And we've gotten this timeline wrong before. Right now, if everything goes to plan and his counts recover like they're supposed to and he doesn't pick up any infections, he is on track to do two more rounds of chemo-and-recovery, each one requiring 4-6 weeks in the hospital, with maybe up to a week at home between each one. But that's if everything goes just right. At the minimum, it will still be months longer. The arm of the trial he's in requires a minimum of four of those 4- to 6-week rounds, and we're in the middle of round 2 right now. So we aren't halfway done yet.  

Q: At least the weeks that he's home are pretty relaxing, right?
A: Dude, they are not. We've done one of those so far. It involved one ER visit and one harrowing night of calls up to the hospital after *somebody* botched a line flush. Aside from that, remember that country song where the guy sings about living like he's dying, except now imagine that guy is 4 and can't drive himself anywhere or make his own food, and what he wants to do is devour waffles and popsicles all day, ride his bike like a maniac, go back to school even though he knows he can't, do parkour on the furniture, have water balloon fights, and hike from dawn until dusk, and he gets super pissed off whenever you try to tell him he can't do one of those things, or whenever you try to pay a bill or send an email or take a shower. Somebody write a country song about that.   

Q: How are his sisters?
A: I don't want to speak for them. Honestly, I haven't seen them in a week. Obi got sent home sick from school last week and I was already here at the hospital with Phin, which meant it was lockdown mode for the two of us, as far as the family went. Before that happened, I'd really only see them every other day, with Neesha and me always on alternating shifts at the hospital and home. I really don't know how Av and Obi are holding up. I've talked to them on the phone. I've seen them on FaceTime. My appraisal is that this is all really hard for them and that they're doing the best they can.  

Q: How are you and Neesha holding up?
A: Just like with the girls, I don't want to speak for Neesha. Besides, it's been a week since I've seen her. She'll have to do another post herself to talk about how she's doing. 

(We did go on a date several weeks ago. We had a quiet dinner where we looked at each other from across the table with wide, curious eyes, like two people who hadn't seen one another for many years. We held hands in a way that I don't remember us ever doing before and we tried to stay upbeat and not to talk about any cancer stuff, with minimal success.) 

As for me...

Have you ever been to an enclosed swimming pool that's in a bubble? My first job ever was at a pool like that. To get into the bubble to swim, you had to exchange one atmosphere for another. Because the air pressure in the bathhouse was different from the air pressure in the bubble, you had to go through this airlock vestibule where only one door could be open at a time. If you opened a door before the other one closed, the pressure differential would slam both doors open and blow you backward into the wall. 

That's kind of how this feels, but with emotions instead of air. When I'm at the hospital with Phin, it's like being in that vestibule. There's a kind of balance. It doesn't feel exactly normal, but most of the time it's comfortable enough, and since Phin (mostly) doesn't look or act like he's sick, except for some drastically thinning hair, it's easy to forget where I am. But anytime I leave that airlock, or when something from the my life outside pushes open one of the doors, there's an ear-popping rush of feelings, and I'm suddenly reminded that this is just an in-between place, that we aren't meant to stay here. 

And other times, both the doors blast open at once and I'm tossed down by gales of contradictory emotions. Like a pair of mischievous pool kids, Despair and Gratitude have a habit of swinging open both the doors at once. This is a constant problem that I have to deal with.  

Q: What should we pray for?
A: Just like with the science-y medical stuff above, I'm not really in my element with this one. Prayer for me has always tended to be more of a quiet, personal thing than something I tell other people how they should do. But I can tell you that the medicine Phin is receiving appears to be doing exactly what it's supposed to do, and I can attest that the care he's receiving from his team is outstanding, in case you want to pray for those things to continue. If you wanted to offer prayers of thanksgiving, it might be good to thank the many medical professionals and hospital workers who attend to Phin, bring him food, and clean and resupply his room each day, or the people who donated the blood and platelets that keep him alive. Or you could send up an even more general prayer of thanksgiving for the people and organizations in our lives who are helping us, for they are many (another post). 

In my travels in this children's hospital, I have met several of my friends whose children were undergoing treatment. You could pray for them and their children. There is another family here that we like very much, and they have a child who has the same kind of leukemia that Phin has. You could pray for that family as well. 

And there are families here that I do not know, but whom you could also pray for, if you are so inclined. One of the most difficult parts of being here is meeting other parents who would gladly trade places with me if they could. Talking to these parents makes me feel like Phin's condition is a real blessing. Maybe Phin's long-term survival is a coin flip? Consider how terrifying that is. Now consider that there are parents here who would give anything for a coin flip. I meet them in the parent lounge sometimes when I go for coffee. Always different parents. They tell me that this is their child's last chance, that later in the day they'll either be taking their child home or following their child's body to the funeral home. When I go back to the parent lounge for more coffee later, they're gone, and I never know which of the two things they did. 

So I tell myself they took their kid home, and I carry my coffee back down the hall to Phin's room, and I try to smile so that he can be happy until the next unpleasant thing has to happen to him, and so that I can remind myself that we're really quite fortunate.  

If you pray, please pray for all the families here, and pray that we remain as fortunate as we are. 

A Rephlection

I took Phin to the Jacksonville Zoo a few days before he went into the hospital back in March. 

His sisters were both sleeping over at their grandparents' house, and Neesha wanted to go to Jacksonville anyway so that she could look for a new couch at IKEA. Wanting no part of that and eager to compensate Phin for his having gotten left behind on the grandparents sleepover thing his sisters were doing, I suggested that Neesha drop us off at the zoo for a few hours. She agreed. She waved goodbye to us in the parking lot and reset her directions for the furniture store. We wished her luck with the couch, smeared on some sunscreen, and headed off to visit the animals. 

We did not know at the time that Phin was in mortal danger, that he was dying in front of our eyes, that he was very close to death. There were signs. We missed them. We told ourselves that his paleness and bruising was the result of a run-of-the-mill iron deficiency. We told ourselves it was probably no big deal. Less than a week after our zoo adventure, we would visit his pediatrician and learn that it was not a run-of-the-mill iron deficiency. Shortly after that, we would learn that more than a third of the white blood cells in Phin's body had already been replaced by blasts. That was the moment we learned that the emperor of all maladies had come for our little boy. 

Phin and I took many photographs during our trip to the Jacksonville Zoo. Occasionally, one will pop up in the screensaver app when the television in his hospital room is inactive. I always get a chill. In one photo, Phin rides atop my shoulders to get a better look at a capybara, his face bathed in white light, his outline slightly blurred and gauzy. Surely, I must have accidentally slid the camera into portrait mode, and this is a trick of aperture, I tell myself. This is merely an out-of-focus picture, not a snapshot of Phin fading away. 

In another photo, flanking Phin in the negative space where his mother or sisters would usually appear, I can almost make out the form of the silent companion who accompanied the two of us to the zoo. Our complacency paid its admission, and for every moment that my son and I shared that day, it was there, too, the interloper whose name is so dreadful and terrifying that even Phin's pediatrician could not bring herself to speak it aloud as she wept and sent him to the hospital. Where there are wrinkles in the fabric of the t-shirt stretching across his shoulder, I see the phantom hand of a shadowy figure gliding at his side, waiting for its moment to quietly guide him away. In my mind, I hear it whisper, Soon...soon....

I must have sensed a looming threat that day, even though it remained unidentified. I was on high alert. Never before had Phin and I ventured anywhere so crowded and so far from home, just the two of us. Child of the pandemic, he had spent most of the time since he learned how to walk charging down less populated and more familiar trails. At the entrance, we received our wristbands and our map, and I knelt down beside him. 

"Listen buddy," I said, "if we get separated, I want you to meet me here, okay?" I pointed to a giant metal statue of a giraffe. "Come back to this place and wait for me, and I will find you." 

Phin looked unsure about this--possibly a reflection of my own skepticism of my plan. I quietly slid the tracking device my brother gave me for Christmas out of my wallet and slipped it into his pocket. 

We walked around looking at animals for a while. Eventually. the topic of being lost came back up. 

"I don't know how to go back to where we're supposed to meet," Phin said. 

"Oh," I said. "Yeah, I didn't really think that part through. You'll probably need to find someone who can help you get back there. There are lots of people like that here. Do you know how to recognize them?"

Phin nodded and pointed to a gift shop worker, a sanitation worker, a zookeeper. 

"Good job!" I said. "Those are people who can help you if you get lost here. There are probably way more of them, but those are the obvious ones. And don't worry because at the same time you're looking for me, I'll be looking for you, and I'll never stop looking for you until I find you." 

Phin smiled at that, and we high-fived, and down the path we went once more. It turned out that we didn't really need to have the "if we get separated" talk that day. He never went very far from my side. After a half an hour or so the fatigue seized him and he wanted to be carried. A little bit after that we stopped for a snack and he fell down and instantly got an enormous bruise. I helped him get up, got him dusted off, and sat him back on my shoulders. And so we headed out to see as many more animals as we could--me walking, Phin riding, and the shadow of death gliding silently along behind. 

Writing this now in the darkness of Phin's hospital room, with him sleeping peacefully just a couple of feet away, it is hard for me to imagine being separated from him. We spend most of each day and every other night in the same space together. But he is once again entering that perilous time that follows the chemo infusions. His white blood cell and platelet counts will crater, and he will be at his weakest and most vulnerable. It is the period when he must be watched the most closely, lest some pathogen take hold of him and spirit him away. Who knew that we should fear this--that the cancer retreats but the danger increases? Or perhaps we knew but did not understand? There is so much in leukemia land to learn and to relearn, and there is so much to fear.

But I think of that last trip to the zoo almost every day, not only when the pictures pop up, because to me it feels like I am exploring this disease with Phin, that we are exploring it together, that we are still only very close to the entrance, that we are once again not alone.  

I feel like I am saying to him every day, "Yes, Phin, yes, this place is strange and scary, but look at all the people who want to help you! Can you recognize them? Look at everyone who has followed you in here! They all want to keep you safe. They have come so that you know that you are not alone. Some of them you already know very well, and some of them you haven't met yet. Some come from close by and some come from afar and some pray in ways you recognize and some speak your name with prayers in languages that you do not understand and some do not pray except for you and some do not pray at all but stand shoulder to shoulder with those who do in your name. You will know them by what they have carried into this place for you--money, mercy, toys, time, food, coffee, equipment, clothes, work, sweat, blood. Yes, some have given away their own blood, my son. Their own blood. Because they thought you might need it." 

And I discovered a place near the entrance of leukemia land that we can meet. 

It happened by chance. I was lying next to him in his hospital bed one morning just after he was diagnosed. Phin was asleep. I hadn't slept. I was watching the early light splash the room in dishwater shadows, listening to the clicking percolation of his IV machine, and trying to distract myself from the ache in my heart by imagining all possible futures where my son was still alive. 

He was sleeping curled up against my chest like a baby. He coughed and his breathing quickened, and I remembered a tip I'd read in some parenting book long ago about how to get your newborn to bond with you through synchronized breathing. I'd tried it on all three of my kids when I used to put them to bed when they were babies and I never noticed any results whatsoever.

But for some reason I tried it again with Phin.     

     

I closed my eyes, sped my breaths up and made them shallow like his. Then I gradually slowed them down. To my surprise, his breaths slowed down in pace with mine. 

Suddenly, the IV machine noise was gone. The light in the room, the shadows, the room itself--everything vanished. We drifted in a place without color or smell, without texture or taste, without blood or bone. All that remained was a song played on air above the soft metronome of breath. 

Only that, and one thought: 

Phin, if we ever get separated, I want you to meet me here, okay? Come back to this place and wait for me, and I will find you.

 

The Phabulous Mr. Phin: Round Two

Aaaaand...we're back. Phin will complete his second full round of intensive chemotherapy at 4 a.m., which means, by the time many of you read this, he'll be done receiving chemo for this round and we will be watching his healthy numbers plummet until they hit bottom and start to climb again. The climb can take a while and this plummet period is where the greater fear factor resides; it's when he is most susceptible to infection, when his ability to fight any little thing that tests his system is most fragile. These are the scary times when fevers abound, transfusions are given, hair is lost, fatigue pulls him down and nights spent with Phin are even more restless because we don't want to miss a thing that might try to creep over him while he sleeps. 

Phin on the Daily 

Phin performs magic!

Despite the chemo, Phin has continued to terrorize the nursing staff with snake pranks and bouncy ball madness. He has come up with a game where you (or his nurse) stands at the closed door of his room and he fires bouncy balls at you (or the nurse) at high speeds and in multiple quantities. He doesn't tell you how many and, (even though they're tiny balls and he's a tiny guy so how hard could they really come?), it's terrifying to not know how many will emerge from his tiny fists and come bouncing at you at once. Nurses scream and cover their heads; I try to dodge and hope I've jumped the right way to miss being hit; Phin laughs hysterically and chases after the balls as they roll beneath his bed or a couch or Henry. It's kind of fun once you realize the balls don't actually hurt and (spoiler alert) he never has more than 2 at a time since he lost his neon green one. He also has regular playtime at the "boring" playground outside, a sanitary hour in the playroom and visits from magicians and musicians alike.

Phin has also changed his aspirations in life. Rest-assured, he still wants to be a zookeeper, but he's thinking that he may like to part-time as a nurse. He's been getting in some practice time, too, by learning how to take vitals, how to measure height and weight and how to flush his lines. If you haven't guessed already, the nursing staff has more patience than a roster of saints. They bring him gifts and visit just for a hug (he's a pretty snuggly little guy); they indulge his use of the hallway as a track for speedracing on his bike and requests to measure how tall his lemur "Tail-er" is ("Tail-er because he has a long tail", of course). They've nodded solemnly when he's told them his daily goal is to fill the urine-measuring-device that looks like a hat to the "very top"; they've advocated to let him off of Henry during the day so he can be wild and free, like the four-year-old boy that he is, even though they know this means he's coming for them with snake pranks and bouncy balls.

Phin flushes his lines

We are soaking up the energy before the inevitable downtime strikes.

Looking Ahead and Child Life 

Phin's birthday is coming up. It's June 1st. We don't yet know where he'll be--whether he'll be home between chemo rounds, still in the hospital awaiting his counts to recover or already back for his third round of intensive chemo--so we can't plan ahead for what we might do to celebrate him (once we know, I promise to share), but we do know Phin is blessed a million times over and doesn't need anything more than the prayers, good thoughts and love he (and his medical team are) being covered in by so many of you. (Please keep them all coming because it is my firmest belief they are what's lifting both him and us.) 

One thing we know for sure, though: Phin has quite a bit more time to put in here at the hospital while he faces down AML and works toward his triumphant return to home and school (which he so desperately misses). Lots of time in the hospital means lots of time in the Child Life Playroom--a magical little place where children from all walks of the Children's Hospital come to play and draw with washable markers on the windows. For now, he and his AML-fighting friend (a little girl I've mentioned, in person, to many of you who is a round of chemo ahead of Phin fighting the same dastardly AML he is) get an hour of sanitized time in the playroom--where Child Life staff members meticulously wipe down all the toys and surfaces, and block off an hour of scheduled playtime a day for each of them in order to limit their contact with children who may have something contagious we're trying to protect them from. This means the Child Life staff spends countless timing wiping down the entire room two separate times a day before our AML-fighters come for their scheduled playtime.

They are another breed of saint in the hospital ecosystem. 

Phin and "Batman with a Monkey Head"

The playroom is accessible to everyone and Child Life's reach extends well-beyond its walls. They bring crafts and toys to patients in their rooms, run interference when bandages need to be changed and children need to be distracted, help keep up with Beads of Courage, block off "safe, sanitized" time in the playroom for immuno-compromised patients, wipe and clean everything, bring holiday decorations or tape to pin up cards, bring resources for Phin and his sisters to help them cope with these great changes and big feelings in their lives, or meet any number of random requests a four-year-old may have; they make life in the hospital more livable. Child Life doesn't ask for anything in return, but in honor of Phin's birthday, we thought we might be able to help bolster their supply of crafts and toys by sharing their Wish List. We hoped to help give something in return that will benefit Phin, his AML-friend and all the patients in the children's hospital long after we get our AML warriors healed and home. If you'd like to join us in sharing this list or purchasing an item off of it, I can promise you at least one little boy already spent an hour playing with a "new" train another patient donated before his discharge. Every new item that shows up is deeply loved, especially, by patients like Phin who spend long bouts of time in the hospital for inpatient treatment and spend countless hours playing in it.

What to Pray and Hope For

Of course, we want to pray and hope for total remission and a permanent cure for Phin, but the most immediate needs for him to take steps toward  getting there are the following:

No infection or illness

Phin's medical team

Steady and strong count recovery so he can come home and then get to the next round of his chemotherapy

Continued good spirits and energy

As Always...

Please know we are bolstered by each of you--your kind, generous words and deeds are carrying us through this dark time. We could never have fathomed, and are so deeply humbled by, the love and support we're receiving every day; "thank you" is just not nearly enough.

Love--N

Phin's "one last thing to do" before being
readmitted to the hospital last Tuesday.

Phreedom

Hey there, Phin phans. Dustin here to report on what Phin's first trip back home was like.

At some point during the hospital stay that just ended, when I was mired in one of my grimmer moods, I asked Phin if there was anything he really wanted to do when he got discharged between chemo rounds. 

"Imagine you could do anything you wanted," I said. "What would you do?" 

Phin rattled off a list of things he wanted to do once he was out, and it included many things he was already doing: watching cartoons, eating snacks, and playing with animal toys. He said he wanted to see his sisters, puppy, and parakeet. He said he wanted to sleep in his bed again. 

(There was also something on his list about going into a cave, but that got revised after he considered that the cave might be populated by vampire bats, which he respects as part of Nature but finds unnerving nonetheless. So I don't think the cave thing is still a go.)

Anyway, Phin knocked out most of his week-at-home to-do list within the first two hours. 

He reunited with his sisters and introduced them to his new animal toys and showed them his new books and puzzles. He received lots of hugs and snuggles from Av. He also received some hugs and snuggles from Obi, as well as one swift punch to the mouth because apparently a month in the hospital was all it took to make him forget that it's best never to mess around with Obi, and that just because he has leukemia doesn't mean he gets to hog all the good Legos.

The pet reunion went okay. Lunaberry the parakeet greeted Phin with a barrage of tweets that either meant "Welcome home, Phin!" or "Seeds! Seeds! Seeds!" Probably the former, I would think. Sundae the puppy was kind of lukewarm about Phin's sudden reappearance. Neesha thinks it's because I put too much pressure on them both beforehand, hyping the moment when they were going to be reunited to the point that they could never possibly live up to the expectations. I suggested that Sundae probably feels like  Watson felt in that Sherlock episode when Sherlock comes back home after faking his death and expects everyone to pretend like it was no big deal. Other people suggested that Phin probably smells like straight up toxic waste to Sundae now, with the scent of chemo seeping out of his pores and what's left of his hair, so she's probably confused about that. Anyway, it was weird at first, but they're mostly cool now.  

He got to sleep in his own bed again. 

Phin also played with my mom, Gran, who came from Missouri to help us, tagging in for Neesha's parents and brother, who helped us for the first month. He played in the hammock in the backyard. He and his sisters had a water balloon fight where he had "water balloon immunity" due to his need to keep his bandages dry, so he couldn't get hit but he could throw, which is basically the best water balloon situation imaginable. They all made s'mores over the fire pit. He attended a popsicle stand fundraiser and played at the playground with Jamie, his friend who set it up. He got to hang out with his friend Toussaint. He got to see his sister's final soccer practice (and the final practice of the soccer team from which he had to resign back in March). He slid down the steps on those foam nugget pads and rode his bike around the neighborhood looking for frogs and bugs and made little boats out of sticks and leaves and set them adrift in the lake like the admiral of a tiny sylvan fleet in the dappled spring light under the magnolia that grows by the southern bank.  

Aside from going back to school (which he desperately wanted to do but couldn't, due to his severely immuno-compromised state), he spent his week at home doing things he would normally be doing if none of this cancer stuff had happened to him at all. 

But the main thing Phin wanted to do when he got out of the hospital was to go back to his favorite hangout, Oatland Island Wildlife Center, which sits a mere eight miles from his hospital room, but remained as unreachable as the moon to someone who is tethered to an IV pole and who constantly has to sit still for vitals checks. 

This week, Phin returned at last to Oatland Island Wildlife Center. Multiple times. With multiple relatives in tow. We packed him into his old BOB stroller because his hiking game isn't quite as strong as it used to be yet. He remembered all the animals (and many of the trees) from his untold dozens of previous visits, but he was amazed at some of the changes since he last went there in February, particularly in the cougar cubs, Rainier and Olympia, whom he says have "gotten big" since he last saw them. 

Phin made many observations as we walked the trails through the marshland and forest. I'll return to those in another post. My main takeaway was that this four-year-old cancer patient, who spent the previous 36 days mostly indoors in the same room, was delighted to be back outside in this special place where he feels comfortable, safe, and free, playing and spending time in the company of animals, many of whose voices and names he knows. 

He used this place to process his experience and to help him locate himself in it. 

"Do Wahoohoo's voice," Phin said when we reached the enclosure of the center's famous barred owl, whose name is Wahoohoo. 

I cleared my throat and prepared to do the voice. "The voice" is always just my regular voice with whatever that animal's sound is, repeated twice at the beginning and the end of their dialogue line, like quotation marks--a speech tag system that works great except for when it's an animal without a recognizable sound, like a bunny or a gopher tortoise. 

"Hoo! Hoo! Phin, it's so nice to see you! Where've you been? I haven't seen you in a really long time. Hoo! Hoo!" I said.

"It's nice to see you, too, Wahoohoo," Phin said. "I've been in the hospital. I'm really sick." 

"Hoo! Hoo! Oh no, I'm sorry to hear that, Phin, but you must be feeling better because you came to see me. Hoo! Hoo!" 

 "Yeah, I'm feeling better, but I have to go back to the hospital soon. Wahoohoo, did you know there's an opossum living next to you now?" 

"Hoo! Hoo! An opossum? I thought it was a pair of screech owls! Hoo! Hoo!"

"Nope," said Phin. "There's an opossum in there now. Bye, Wahoohoo. We have to go see the alligators."

"Hoo! Hoo! Get well soon, Phin! Will come to see me again next time you're out of the hospital? Hoo! Hoo!"

 "Okay! I will!" Phin called over his shoulder.

And down the path we went, stopping at each enclosure to have these conversations, with Phin telling each creature about his sickness and each one offering him comfort and reassurance in a voice that sounds exactly like mine (but bracketed by Old MacDonald-style animal noises), with Phin explaining his new life in the hospital and the animals listening and asking him questions, and with Phin eventually telling them all goodbye, and with them all making him promise to come back and see them again soon.