Phin Phights Cancer Part II

Hey Phin phans. It's Dustin. We wanted to get this update out sooner, but the last few days have been really busy arranging everything for Phin's care and our living arrangements, jobs, and home. All these moving parts that had to fit together. It felt a little bit like trying to restart a machine that's been out in the garage for a long time--one we'd hoped we'd never have to use again. But now, after a couple of good cranks, our family's leukemia vehicle has whirred to life once more.

I'll ask for your patience up front because this post will probably feel disjointed. Neesha started writing it, but she had to leave it off to attend to something else. I've been such a wreck this time around that I haven't managed to contribute much of anything here yet. Nevertheless, I'm going to try to Frankenstein together some of what she started writing about how this started with some new info about what's happening right now to provide a clear view of the situation. I've added some dialogue tags to help keep things sorted. Here goes. 

Neesha: We learned Phin's cancer had returned on a Thursday and by the following Thursday, he was checking into Memorial Children's Hospital of Savannah (CHOS) for pre-chemo major function testing and central venous heart placement. 

Dustin: It was 4:45 p.m. on Thursday, February 8. I had just walked into the classroom to set up for my 5 p.m. class. "Hey everyone!" I said. Then my phone buzzed. It was Neesha. I knew she would never call at that time unless it was urgent. I excused myself, stepped into the hallway, and picked up. Neesha had Phin's oncologist already on the line. For ten minutes, the oncologist explained that our son had leukemia again, how he would have to undergo everything he had already undergone the last time and more, and how we would all have to move very quickly. The call ended. I stared at my phone. Then I walked back into the classroom and, owing much to the immeasurable compassion and grace of my students, I managed to make it through both of that night's classes.  

Neesha: From the time we talked to his doctor at 1:30 an exact week from the day we learned he'd relapsed until he was checked in at 4:45 p.m. that same day was very fast, but the painstaking days that ticked from the time we learned definitively that his cancer had returned the previous week seven days earlier were excruciating. During that time, we agonized over what would be best for Phin, for his treatment, what would help us get him to remission again and where this could and should all happen.

                                                    

We want what's best for Phin, a treatment plan that's flawless, which, of course, doesn't exist, so we did the next best thing and reached out to every single expert whose email was publicly available anywhere online. I wrote doctors in Seattle, doctors in Memphis, doctors in Atlanta and Philly and Boston. Anywhere there was a specialist, I sent an email. In less than twenty-four hours after Phin's diagnosis of relapse, I had written at least fifteen emails. If you've ever tried to contact your own doctor after closing hours, you know what this feels like: grabbing a bullhorn, standing at the edge of a black hole as it folds in on itself for all eternity and screaming directly into it, knowing the void is a vacuum swallowing every sound you echo, but doing it anyway because you are helpless to do absolutely anything else;  it's your Hail Mary pass when it seems like actual Hail Marys aren't being heard. As I hit "send" on each of those emails, the weight of despair pressed heavy on my chest.

Then something extraordinary happened: They wrote back.

By Sunday morning, I was sitting outside of our church while the kids finished Sunday School, FaceTiming with Dr. Meshinchi of Seattle Children's Hospital, who was in Italy for a conference. He and I had been writing emails all weekend. He highly recommended a colleague at CHOA, who our Savannah team had already been in consultation with. He regarded her as a force in treating AML, and assured us we'd be in good hands. Phin had his LP and BMB on Monday; although he was stable, he needed more platelets; by Wednesday we were on a consult call with CHOA--Dr. Meshinchi's well-regarded colleague--who also recommended we stay in Savannah for chemo treatment before transplant, by Thursday, our oncology team assured us they'd be accessible, gave us ways to ensure we could make that happen when needed, and we were packing Phin up for admission.

Dustin: Here's some highly questionable, unscientific, back-of-the-envelope math that can maybe put into perspective the swiftness with which the particular cancer that Phin has advances. In the 5k race of diseases, not all cancers run in pace. AML sprints the whole thing, unlike, say, the skin cancer the dermatologist carved out of my chest several years ago, which had probably been plodding along at a slow, wheezing stumble ever since I was a knuckle-headed, sunscreen-averse teenage lifeguard. When Phin first got diagnosed with leukemia, we really had no idea when it started. We could only guess from photos of when he started looking pale and when we saw bruises. This time, however, we had three blood draws in a week with no chemo to smudge his platelet counts. Platelets, remember, are among the first cellular victims of acute myeloid leukemia. From the three samples, we can do some (again, very rough) arithmetic. 

2/5:   64 K/uL
2/7:   61 K/uL

2/12: 47 K/uL

(The measurement abbreviation "K/uL" stands for "thousands per cubic milliliters of blood.")

So using those numbers, we can calculate that Phin's platelet count dropped at a rate of 2.43 K/uL per day, assuming that the rate of decrease was constant--which again, who knows. 

When Phin was first admitted to the ER in 2022, his platelets were at 7 K/uL and he was pretty much on death's door. At the rate his platelets were falling at the time those three blood draws were performed two weeks ago, Phin would have been at that level of platelets again in 16.46 days. So with this disease, the lines "Your child looks great so we'll see you  back here at the clinic in another four months" and "Take him straight to the ER immediately and don't go home first" might be just a little more than two weeks apart. In other words, he would have been approaching that same level of danger by now. 

We also can go the other direction and determine the last date at which Phin had platelets in the normal range, the lower threshold of which is 150 K/uL, if his platelets had dropped steadily at a rate of 2.43 K/uL per day ever since. That would have been 42 days prior to the February 12 count: January 1, 2024. 

Neesha: Suffice it to say, Phin's cancer is not a slow moving one. At admission, his oncologist revealed there were approximately 2.7% leukemic blasts in his bloodwork, about 18-19% in his marrow biopsy from Monday. This is much stabler than Phin was when he was admitted to the hospital almost two years ago, but because his cancer is in his marrow, there's no staging that tells us how far along it is or how well it will respond to treatment.

Medical Updates: If you're just tuning in, Phin has relapsed. He's been inpatient at the Savannah Children's Hospital since last Thursday and is currently on day 4 of his first round of chemotherapy. This chemo hits harder than the stuff he got last time. He's got two more days of chemo this round, followed by three to four weeks of living full-time in the hospital while his counts recover. Then, he'll come home for a few days. After that, he'll come back and do it all again, as many times as it takes to get him back in remission. Once he's in remission again, if he has a bone marrow donor match, he'll go to the Children's Hospital of Atlanta for a bone marrow transplant, and he'll stay there for many months while he is monitored to see if it worked. 

However, that's not a bridge we're ready to talk about crossing yet. A lot of things have to go exactly right first in order just to arrive at that bridge. 

Anyway, right now he's sleeping while he waits for a bag of AB+ platelets to arrive. His appetite has crumbled to dust. He's starting to droop. On the whole, though, his spirits are high. Just like last time, he misses his classmates and his teacher, misses his sisters, friends, pets, and toys. He's never complained once about being here or having to do all of this again, though. Last week, as we waited while one of his sisters was preparing to get her blood sampled to see if she's a bone marrow match for him, I asked him what he thought of all of this. 

"I don't like it," Phin said, "but I still do it."

Phin On the Daily: Since most of the time he's got to stay in bed hooked up to Henry, his IV pole, he's been playing Roblox with his cousins, watching a lot of Wild Kratts and Sonic Prime, and FaceTiming with his cousins, sisters, and grandparents. He gets to visit the playroom for an hour once per day since he's immunocompromised again (the Child Life specialists have to wipe everything down before he gets there to reduce the chances he'll get an infection), and when he's there, he plays Foosball and shoots free throws in the basketball game. He consistently beats me at Foosball, mostly by disqualifying about 90% of my goals. At shooting free throws, Phin and I are evenly matched. 

 

We've received a lot of extremely generous offers of assistance, and we just want to say, thank you all. Thank you so much. Thank you. This time, it's going to be a lot harder than it was before. If everything goes right, it's going to last a lot longer, too. What we really want to tell you all is that we appreciate your kindness and your compassion. Right now, we have everything we need already in place. The dusty old leukemia land machine started back up, and it's carrying us along. Eventually, we're going to arrive at some terrain that we can't cross without you, and we'll definitely let you know when we get there. Thank you for coming back into this nightmare with us.

For right now, if you want to help or do something kind, or if you feel powerless and need to do something, (trust us, we get it. We know how you feel.), here are some ways you can use that energy to do something positive. Consider donating platelets to the American Red Cross if you're eligible. Also, if you're younger than 40, please join the bone marrow registry. Even if you aren't Phin's match, you might be someone else's. You might save someone's life. Lastly, if you'd like to send toys or games or supplies that Phin and the other kids staying in the Children's Hospital of Savannah can play with, here's a QR code to Child Life's gift registry. 

Neesha: I also wanted to take just a moment to recognize something that's been sitting with me since Phin's first diagnosis when the outpouring of support from our enormous, cross-continental village started and Phin began living in so many of your hearts and prayers and minds rent-free for the last two years. Phin is not just ours. He has been pulled away from a classroom full of friends who love him, from games of tag that are now short one player, from Sunday school class where, his teacher tells me weekly that, he knows the prayers better than everyone else. He's been abruptly taken from so many teachers who worked diligently to catch him up and support and celebrate his every victory, big kids who want nothing more than to pick him up and carry him around as their "king", neighbors and friends we know everywhere who have quietly watched his journey and looked to Phin as a symbol of courage and bravery and hope, a small little boy who prevailed against a Goliath of a disease: a miracle. This devastation at his cancer returning is a collective despair; it has shaken us all to our cores, and the trauma and fear you harbor for him are akin to the ones we as his family share. We see you walking alongside us on this journey, hurting but holding out your hands to help at the slightest hint of need, to offer your strength when we weaken; we know it's hard and unfathomable to you, too, but you choose to be here with us. Thank you for your care, your investment and your love for us, for our family, for our son. We see you. We feel you. We are so grateful to have you.

                                            Thanks, Phin phans. Stay encouraged. More soon.  

Saving Phin

Dear Phin Phamily,

For the last eighteen months, we have done our best to allay our fears that Phin would relapse, comforting ourselves with his oncologists telling us that Phin's cancer type--AML T8;21--was one of the most low risk treatable kinds of AML to have. Each time he'd not be hungry, the anxiety would rise, but I'd remind myself children go through ebbs and flows with food. Each time he'd look pale, I'd position him next to a sister to see if their tones were comparable. Each time he had a bruise, I watched its shelf life to see how long it took to fade, examine his little body for new ones, ones in places that weren't typical. I knew I couldn't force feed him into not relapsing, get him enough sun to stop his cancer returning. We had faith; we believed; we gave each day a chance to be filled with everything he and his sisters wanted to do: school, activities, friends, ice cream. I have no regrets for how we've lived this life in the last eighteen months: cautiously hopeful with mists of fear coating everything once the cloud of worry had passed.

This is where we tell you that Phin's cancer has returned. He is relapsing and no longer in remission.

This is new. We only learned in the last two days that he'd relapsed. We don't have a treatment plan yet. We don't know if we'll stay in Savannah or take Phin to Atlanta. We know he will go through some tests on Monday and chemo--either here or in Atlanta--will start, potentially, by the end of the week. We know he will need a bone marrow transplant--it is the only way to save him--and, therefore, a matching bone marrow donor--but we also know that we need him in remission first. We know this could prove much harder this time. We know once they get him admitted and begin treatment, his sisters will be tested to see if they are a good match. We have not told them what this means, only that we'll test their blood to see if there's anything in it that can be helpful to Phin's treatment. I am fearful of the guilt they might feel if they are not a match for their brother. They might not be. 

The five of us after pickup on Friday, moments before we told them.

We are sharing this now because our children know and they need us all. Avonlie has cloistered her emotions away, feeling the need to be strong and composed. She has told no one. I recognize this as it is my default, as well. Obelia has fallen completely apart and wants to tell everyone what's happening. She can't contain the tears or the oversharing. There's a good chance if you're reading this as a parent of a child she is friends with, it confirms what she has already told your child. I'm sorry we didn't get to you first so you could prepare. Phin is in denial. We are currently spoiling him and, for now, he's stable, but we know on the inside, the cancer is at work. All of their health--mental and otherwise--is paramount to us. We will make sure they all have the treatment they need to process and move forward in this new part of the journey.

In the last few years, when I've learned of someone's cancer diagnosis or other trauma or hardship, I have been anxious to help in some way, any way. I recognize that desire to help and I am grateful to you for reading this and for feeling that, if you do. As with his first diagnosis, we just don't know what we need. He has changed and so has the treatment plan. We are considering how to schedule his days in the hospital, because a schedule he can anticipate made things much easier the first time and he has things now he didn't have then. If it's feasible, this might include Hospital Homebound, playground or playroom time, TV time, Nintendo Switch time, and a Tonie story at bedtime just as we do here. As we figure these things out, we will share. What I know we need right now is your prayers, your good vibes, whatever you do to manifest--and all of your friends' and families' good vibes and prayers and manifestations, as well. If you want something specific to be keeping in mind as you do this: the best possible treatment plan for reinduction and remission and strength for Phin and his body without any kind of complications or issues. 

We are going to fill these next few days with all the things Phin wants to do, all the experiences he wants to have before these days are not his own. After we told our kids, we asked what they wanted to do this weekend and we are in pursuit of all they have requested. If you happen to see us out and about--me anxiously watching that he doesn't hurt himself with the low platelet count I know he has while still also wanting him to act like he can do anything--please proceed with caution on this topic. We'd like to keep these experiences positive and happy.

You would never guess by looking at Phin. You could see me--eyes rimmed red and puffed--and know instantly that something is wrong, but to look at Phin, you would never guess. Last night we attended the TIMA Night at the Ghost Pirates ice hockey game. He ran so fast all around the playground, occasionally stopping to be raised into the air by his "Seventh Grade Gang" and declared their king.

He ran like he was on fire--leaping over grates, climbing concrete obstacles, ducking unexpectedly between playground walking planks, disappearing from sight. It was hard to keep my eyes on him, even though he was the only person I had to really keep my eyes on. He just didn't stop until his sister's band went on to play. 

As I watched Phin, I felt all of those emotions we feel when we're grieving: anger and sadness and fear and despair and nascent hope growing out of the despair and so much guilt. If you've ever been in a situation like this, I'm sure you know that guilt: all my sins have come back to haunt me, this is atonement for all I've done wrong, I am being punished. I remind myself this is not about me, none of it. It's about Phin and his body and what it's producing. I remind myself there is nothing I could have done in my lifetime to stop this, nothing I can do going forward to prevent it or take it away. This is the greatest guilt.

Last night, in the darkness of the growing night sky, stars beginning to venture into view murky in the distance outside in the stadium light, I watched him run and run and run, free on that playground like nothing could stop him, like nothing will stop him, and I let myself believe this is true.

-Neesha