Despite It All

Chapter 38

Day +21

Dazed, unfocused eyes follow the bright red path that courses through the large dialysis machine—each turn of the black cogs mesmerizing and despondent. The sizable apparatus works to filter the blood of the excesses that dwell inside it, effectively extracting burdensome electrolytes, fluid, and waste products that would normally be excreted through healthy kidneys.

Another ventilator derides me with its steady whooshing, huffing as it mechanically lifts Mia's chest up and down—its ability to provide lifesaving breaths its only redeemable quality.

Veno-occlusive Hepatic Disease, also known as Sinusoidal Obstruction Syndrome (SOS)—which sounds more appropriate—is responsible for Mia's current state. The liver, burdened by intense chemotherapy and epithelial injury, suffered at the cellular level to cause liver cell death and hardening of the vessels leading to and from the vital organ. This damage obstructs blood flow to other vital organs, essentially causing multi-organ failure. Her liver, her kidneys, her lungs... they've all... failed.

The signs were all there.

Her elevated liver enzymes, her elevated direct bilirubin, her low platelet count, these labs were all indicative of this disease. The prolonged use of TPN—notoriously harsh on the liver—her weight gain, abdominal pain, her eventual jaundice, her rounded belly... it all makes sense—now. Suspicions were confirmed with an ultrasound and doppler, showing an enlarged liver and impacted blood flow of the liver's veins, respectively.

The beauty and the pitfall of the human body is that everything is connected, intricately intertwined. Each vital organ depends on the other to do its job. Like dominoes perched to fall, the failure of one organ quickly incites failure of another.

Mia's desire to be kept in the dark—the one thing she could have control over—kept everyone else in the dark about her rapidly changing condition. The subtle nuances were not enough to piece together what was happening inside her tiny, fragile body.

Defibrotide pulses through an IV pump and into her central line, and I stare in wonderous awe at the 34.7 mL of medication in a tiny syringe, recognizing that this is our only actual hope. Besides supportive measures, like dialysis and mechanical ventilation, this medication is the only current treatment for this disease process—short of a liver transplant, which her body would not be able to recover from in its current state.

Ashley stands besides a sedated Mia, her arms pulled tightly across her chest. Greasy hair is pulled back into a haphazard ponytail, the ends of her hair resting lightly upon a three-day-old red t-shirt. Her face is sullen and dull, dark circles permanently painted under tired, red eyes. Jack stands next to her, also looking worse for wear. He steals glances at Ashley, his expression full of worry for the person he loves—consumed by a desire to help patch the gaping hole in her heart.

I feel your pain, Jack.

Logan sits beside me on the couch with his elbows on his knees, his hands threaded in his disheveled hair. Despair has wrapped around our ankles and it yanks at us a little more everyday, unrelenting and unbiased. We've been able to hold one another up, but as the days pass, the task becomes more and more challenging. We're losing ourselves in this small PICU room. The air hangs heavily around us, and I form a newfound understanding and appreciation for the nickname the PICU nurses have given this small row of rooms—'heme/onc hell.'

The steady hum and dings of Mia's monitor and pumps are the only constant in our lives, each beep a promise of another breath, another heartbeat.

This past week has been filled with excruciatingly loud silence, intense and deafening. Logan and I wordlessly hold one another each night, mildly subdued by tender caresses and soothing kisses. There are no words of comfort that can be bestowed upon the uncertainty, the limbo in which we linger.