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.