Twice a year, we don’t get to pretend life is normal.
On these days, I drive my daughter to the hospital still in her PJs, usually fussy, sometimes crying because she is hungry and thirsty but can’t eat or drink before the tests she is about to have.
She is the youngest patient in the waiting room by decades. The nurses give her Disney princess stickers or abbreviated coloring books titled — I kid you not — “My Trip to Radiology.”
Every single time, I fill out the same form:
Has the patient had surgery?
Are you kidding?
If so, give the dates.
I list months and years because the actual dates have blurred together.
Has the patient ever had cancer?
Does the patient have a penile implant?
We wait for an hour, sometimes two, once for three. When they finally call her name and lead us to the procedure area, I give her long and extensive medical history to the anesthesiologist and beg him (it’s always a him) to please, please, please put anti-nausea medicine in her IV. It will mean the difference between her vomiting once or twice when she wakes up or for the rest of the day.
The doctor always present a syringe filled with the pink liquid sedative Versed. Since I’m not allowed to walk her into the treatment room due to the completely safe levels of radiation, they want her calm when they take her from me.
When she was a baby she took the medicine easily. In her toddler years she pushed it away, or took it and then promptly threw it up. Now that she’s a mature child of 6, we have an agreement, one that many — but not all — anesthesiologists can’t get their heads around. I don’t make her drink the medicine, she goes bravely into the treatment room without melting down.
Many — but not all — anesthesiologists don’t believe she can do it, so I have to bust out my own medical credentials, namely an advanced degree in She’s My Kid, This Isn’t Our First Rodeo, So Kindly Step Off. The nurses always come to my aid, although from the way they shake their heads I can tell they are used to being ignored by Those Who Must Be Obeyed. (If it sounds like I have contempt for doctors, I don’t. I adore them, especially pediatric oncologists, who are g-d—n unsung heroes in my opinion. For some reason, though, most — but not all — anesthesiologists drive me crazy, probably because I disagree with their assessment that God wears a name tag and Crocs.)
They take her from me, weeping but not bawling, and I wave good bye smiling. Inside I am screaming.
The hospital has a chapel. I don’t know if God exists but I go into that room, get on my knees and beg. Please let her sleep soundly, please comfort her when she wakes up, please ease her pain. It feels hypocritical to pray when I’m not even sure what I believe but a parent in this position will do anything.
It’s a sentiment perhaps best summed up by the protagonist of one of the greatest novels of our time, Peter Benchley’s Jaws. At one point, when the beleaguered police chief is powerless to stop attacks on swimmers he declares, “If someone came in here and said he was Superman and could piss the shark away from here, I’d say fine and dandy. I’d even hold his d—k for him.”
Man is this is ever true. Except for the pee and d—k parts. Gross. But if someone told me standing on my head and coloring my face green would ease her pain, I’d flip over and grab the paint. It someone told me the universe is being presided over by a cosmic Elmer Fudd, I’d tell him which way the Wascally Wabbit went and ask him to grant my child mercy.
After the praying comes the waiting. At least four hours, sometimes more than six. For some reason, without fail, there is a band playing Irish music in the hospital lobby, and I don’t mean U2 or the Pogues.
Now, I love Irish folk music as much as the average person. Probably more since I have a few albums. But when this band’s music bounces off the cold marble floors off the hospital lobby, it sounds discordant and irritating, like a 3-year-old sawing at a violin or an accordion being dropped down a flight of stairs.
It’s a huge relief when the call comes in that they have finished the tests.
Upstairs in the recovery room, my daughter is a tiny body in a room full of giants. Groggy and quiet she clings to me as she slowly wakes up, while other patients groan or even rant in alarm because they don’t know where they are. If they shout I cover her ears. The nurses are remarkable at settling the patients down. They must be great with drunks.
On the drive home my daughter usually vomits, a surprised look on her face as the bile erupts from her mouth and nostrils. At home we cuddle and wait for the doctor’s phone call.
With a few exceptions it has been good news: the tumors are the same size, or they’ve shrunk the tiniest bit. We all exhale with relief. I say a prayer of thanks. We are officially granted leave to live in denial for the next six months, which is how we roll in this house.
But last week, when I steeled myself to schedule her next set of scans, I was given a pleasant shock by her oncologist. It’s been three years since she stopped chemotherapy, something I hadn’t realized in the daily chaos of life.
At this point, it is so unlikely the cancer will start growing again that the scans to check their size are considered more harmful than useful. Instead they will check her urine and test her blood once a year.
It’s a joy and a relief. She is no longer the ghostly pale baby who practically lived in a hospital bed. She’ll never again be the bald toddler with track marks in her arms. And now she won’t be the kid who is dragged out of school for debilitating tests and assessments.
She’s not completely out of the woods. She probably never will be, a thought that hangs over our heads when we let it, usually on Christmas and her birthday.
But for now, her life has gotten that little bit better. And for that, we are grateful.