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.