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