cancer

Keller vs. Sullivan, Part II: Is there an Annie Sullivan in the house?

Me, the momLeave a comment

The appointment starts with great promise.

The neurologist, young and eccentric, says he knows exactly how to help my daughter. Follow his recommendations, he says, and she’ll be talking, using the toilet and behaving like a typical five-year-old in no time.

I am giddy with relief.

It’s a feeling all special needs parents know well. In a world where no one “gets” our kids — and some just get them flat-out wrong — when you encounter someone who not only gets them but knows how to help them, it’s like Christmas, your birthday and the season premiere of The Walking Dead all in one.

I call it the Annie Sullivan Effect, for the woman who taught a blind and deaf Helen Keller how to communicate. Like Sullivan, these women and men come into your child’s life and flip a switch you didn’t even know where to look for.

We have been lucky enough to know several Annie Sullivans. They hold a special place in our hearts and prime real estate in our prayers.

But as much as I adore these people, there is a massive drawback to meeting a real life Annie Sullivan. It makes the disappointment that much greater when someone who appears to have Sullivan potential turns out to be a JAGBA, (Just Another Giver of Bad Advice).

If there is one thing special needs parents have in abundance it’s JAGBAs. They leap out at us whenever we venture forth in public with our children or post about them on social media.

“Do you speak with him?” one woman asked when I explained that my then-3-year-old son couldn’t talk. “I mean, maybe if you modeled speech it would help.”

I was beyond tempted to reply, “No, we communicate entirely in mime. Look! He’s doing the ‘I’m-trapped-in-a-giant-invisible-box’ routine! Haha. Good one, buddy!”

While JAGBAs exist for all moms and dads, they can be particularly vexing for special needs parents because, unless the person speaking has a degree in neurologically atypical development, he or she has about as much chance of giving appropriate advice as I do of being crowned Miss Argentina. (It could happen but the circumstances would be very suspicious.)

Even once you do explain your child’s condition, some JAGBAs refuse to accept that this negates their words of wisdom. That some kids are wired differently challenges, well, apparently everything they believe about the universe.

Having seen up close and personal how differently some children develop, I can very comfortably say it is more bizarre to believe the “one-size-fits-all” line of thinking than it is to reject it.

Take my son and speech. Everything that helped typical kids learn how to speak, such as modeling speech, didn’t work for him. And trust me, we modeled out the wazoo. At his pediatrician’s request I narrated everything we did, much to the concern of people who found themselves near us in public. “Here we go up the stairs,” I’d say, as people inched away from the crazy lady. “Up, up, up the stairs.”

Even things that helped the majority of atypical kids learn how to speak, such as speech therapy and sign language, didn’t work. (And no, despite what some JAGBAs argue, learning sign language does not discourage kids from speaking. It’s not like they have the keys to the kingdom being able to sign “milk” and “potty.”)

So what did the trick? A new neurologist and an occupational therapist who determined the problem was with my son’s vestibular system. (Essentially, his sense of balance.) Instead of trying to get him speak, this therapist focused on movement. She pushed him on platform swings and swung him in circles. Within a week, he said his first words. Probably to get her to stop.

When you witness something like this, you don’t just drink the neurologically atypical Kool-Aid, you chug it.

That’s why I am ready to follow every recommendation this young neurologist gives. He has already built a reputation within the local special needs community for “thinking outside the box” and getting results.

His first suggestion is to take a stool sample so he can prescribe a course of probiotics and supplements for my daughter. Sounds good.

He then sends us across the hall so his nutritionist can devise a special diet for her. I am THRILLED. Eating has been a major issue for my daughter ever since she started chemotherapy and the constant nausea and vomiting turned her off food.

Toward the end of her cancer treatment she was fed entirely through a tube. When she began her recovery, her doctors recommended a liquid meal replacement drink to help her gain weight and grow as we gradually reintroduced solid foods. It has helped us tremendously but we would love nothing more than for her to enjoy eating again.

Unfortunately, the nutritionist is no Annie Sullivan.

The trouble starts when this woman — let’s call her Twiggy — enters the room, turns sideways and disappears. Okay, I’m exaggerating but she was worryingly skinny. I know it’s not nice to be prejudiced against anyone for their weight but I have a really hard time trusting anyone who doesn’t seem to enjoy food. Especially a nutritionist. I mean, what was she going to teach my daughter to eat? Altoids and laxatives?

She asks for a list of foods that my daughter consumes on a regular basis. It’s a short list and when I mention the name of the supplement beverage, her head snaps up and her eyes grow wide over protruding cheek bones.

“That stuff is poison,” she says. “It’s full of sugar and sugar feeds cancer.”

“Her oncologist recommended it,” I reply. “Her tumors have been steadily shrinking the entire time she has consumed it.”

She looks surprised.

“Ok, well, let’s get her off that,” she says and then lists on her bony fingers several nutrient-dense foods I would be thrilled for my daughter to eat but I’d be lucky to get my husband to try.

“Great!” I chirp. “How do I get her to eat all this?”

She looks at me blankly.

“We have a lot of trouble getting her to try new foods,” I explain. “Do you have any suggestions?”

“Just put it in front of her,” she replies, pulling out her phone because apparently we’re boring. “She’ll eat if she’s hungry enough.”

That’s when I knew it was all over. Because yes, most children will eat foods they don’t particularly like if the alternative is going hungry. But kids with sensory issues or oral aversions won’t, especially if they are too young or developmentally delayed to make the connection between hunger and food.

Her advice was the equivalent of Annie Sullivan telling the Kellers, “Just force Helen to develop a concept of language and a method of communicating.” Great in theory, but how do you get there?

In that instant it became apparent that, although this woman was well-versed in nutrition (she could correctly pronounce “quinoa”), she was pure JAGBA when it came to eating and the neurologically atypical.

I wasn’t alone in this assessment. A few months later, the neurologist added a feeding therapist to his staff so children could learn to eat these incredible diets being created for them.

And once again I was reminded that they can’t all be Sullivans.

In the grand scheme of things, it’s not that big a deal. Two years on and my daughter has almost caught up developmentally, even without the help of kale. Some people have asked why I even bothered with all the therapists and doctors if she would eventually get there on her own. The truth is, we had no idea if she would.

Also, as a parent you see your kid struggling with the basics and you want to help. You want your child to enjoy everything other children her age do: giggling with friends; the sweet, sunshiny taste of an orange; the pride of not crapping her pants.

Although there is far less call for Annie Sullivans around our house these days, I will probably always be on the look out for them. This is largely because I feel so out of my depth as a parent to the two unique, fabulous people that are my children.

So to any and all the Annies out there, thank you for what you do.

And call me if you have any suggestions.

This entry is dedicated to the miracle-working Ms. Lee. Thanks for being our first Annie Sullivan.

 

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In this corner, we have Annie Sullivan.

A very angry thank you

Me, the mom7 Comments

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

Me, the momLeave a comment

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.