A very angry thank you

To the doctors, nurses, techs and child life specialists who choose to work with pediatric cancer patients, I have one quick question: What the %*&@ is wrong with you???

You know there are easier ways to make a living. In fact, I would be hard pressed to find a more demanding way to earn a paycheck.

Sure, there are other professions with long hours and stressful conditions. Not one includes telling parents their children might die.

Perhaps no one mentioned this in medical or nursing school, but there are fields where the chances of watching an infant vomit and defecate blood are next to none. Podiatry comes to mind. Urology, perhaps.

Or, hey, you know what? F—k medicine altogether. As far as I know, investment bankers don’t have to repeatedly stick a needle into a shrieking toddler to start an IV in impossibly small veins.

Yes, other people deal with anger on the job. (Does anyone like a telemarketer?) But in no other profession is the vitriol as relentless and undeserved as it is for you.

Sometimes it comes in the heat of the moment: a parent snaps after weeks, months, even years of watching their child suffer, and turns on those trying to help.

Other times, it comes from the realm of the Perpetually Righteously Indignant, those terminally wise fools who enjoy spouting off to anyone who will listen about how oncologists love nothing more than a new diagnosis or a relapse because it means more money in their bank accounts.

There is a special place for people like this. I’ve heard it’s very warm.

And then there are those who believe doctors are part of a conspiracy to keep the cure for cancer under wraps because, as the logic goes, if you cured cancer, the medical industry would lose out on a valuable source of revenue.

Look, I love me a good conspiracy theory. Is it possible that pharmaceutical company execs are conspiring with each other to keep a failsafe cure for cancer from coming to the market? I dunno. I have some serious reservations about this theory but then I didn’t spend all those years watching The X Files and not learn a little something about the possibility of the implausible.

But if this is the case, do I believe the doctors and nurses working with pediatric cancer patients are “in” on it?

Oh hell no.

Because it would take one hell of a monster to subject children to the misery and uncertainty of chemotherapy and radiation if there was a magic pill that could quickly and painlessly make all the bad stuff go away.

What I would suggest for those who think caregivers are in on the Great Cancer Caper is to spend 24 hours on the job with a pediatric oncology doctor or nurse.

Change the sheets of a toddler who has just thrown up for the tenth time in an hour. Listen to the screams of a 5-month-old whose chronic chemo-induced diarrhea has left his bottom covered in sores. Comfort the parents whose child just died in their arms.

Then come back and tell me if you think there is any amount of financial compensation that could make this worth it.

But back to you, oncology types.

What gets me about you people, is that you choose to live the way most people can’t.

Most people get to exist quite happily outside of the pediatric cancer bubble. Before my daughter was diagnosed, I was one of them. Like everyone else, I thought of kids with cancer only when an ad for St. Jude’s came on the TV, or when watching old episodes of Highway to Heaven. (I don’t get out much.)

These often saccharine depictions, which are still too overwhelming for some, don’t even begin to capture the horror of pediatric cancer.

You live the reality.

You spend your work hours in the trenches with these children, witnessing more pain and suffering than any human should have to. You spend your down time walking or hiking or mud-running to raise money for cancer charities. You celebrate the victories. You cry at the funerals. You honor the birthdays of those who will never grow up.

It takes one hell of a person to do that. I mean, the words “bat” and “s—t” come to mind but that doesn’t really capture the high regard in which I hold you maniacs.

All I can say is, on behalf of all the families that have been or will be affected by pediatric cancer, thank you. Thank you for choosing to do what you do, to put up with what you put up with.

Because your lunacy makes it possible for cancer families to keep going.

Y’frigging nut jobs.

No more scans

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?

Duh.

Does the patient have a penile implant?

Giggle.

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.