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Looking Back

Looking back it’s safe to say I had no idea what was going on. Bobby was first diagnosed at age five with Stage IV Neuroblastoma. Andrew was twelve, I was ten, and Jake was seven.

I didn’t know then and I still don’t know now any of the specifics about that cancer. I remember Bobby complaining about pain in his hip and limping around, but he was terribly unathletic so to me his limp was easily mistaken for bad running form. I remember tearing up when my mom told us the news in the kitchen but what those tears were for or where they came from is beyond me. At that point cancer didn’t mean all that much. Somehow I knew Neuroblastoma was rare, and I knew it was abnormal for a five year old to get that specific type, but all other relevant information never found its way to me. We were clean slates taking it all in as it came.

And looking back, I suppose I should applaud my parents. While I have no experience in the matter, having a child with cancer must have been an absolute nightmare. It most certainly could have disrupted the normal functioning of our six-party family unit, strained each relationship - parent to child, sibling to sibling - and it would have been completely understandable if the stressors they were facing trickled down into the consciousness of the three healthy kids standing (not so idly) by. But while I cannot fully speak for Jake and Andrew, and I sure can’t speak for Bobby, as far as I was aware none of those things happened. Through all the years Bobby was sick or plagued with some weird thing or another - years that spanned the majority of our childhood and into adulthood - in and out of surgeries and hospitals, undergoing all sorts of treatments, pins stuck in strange places, swallowing one unidentified medication after another - this mosh pit into which my parents were unceremoniously thrown registered in my ten-year-old brain as nothing more than snap shots of various adventures and some vividly funny memories.

Since becoming an adult, my mom has let me in on a couple of their parenting secrets: 1. Treat each child equally (Perhaps not a huge secret but one not easily accomplished when one child requires a disproportionate amount of emotion and attention), and 2. Always allow the parents to be the enemy. If the four of us fought between ourselves, they would seclude us together, usually in the basement, with the hopes that, incensed or annoyed with one another, we would instead eventually rally into a collective front against the grown-ups who had barricaded us down there. If the parents were the enemy, or more accurately the “absurd adults”, then the kids would become allies. This principle worked so well I didn’t even know it was happening.

I include their philosophy for context and give them credit because I must now proceed to lay bare their insanity for the rest of this short essay. Because of them, the four of us were allies through it all, and to us they were indeed the absurd adults.

Having a little brother with cancer was like being dragged around on a lot of errands, except those errands were hospitals, and they included play rooms, games, and fresh places to explore. And for the science-enthusiasts among you, having a little brother with cancer multiple times throughout the span of 15 years effectively exhibits a short historical journey through advances in technology and cancer research, but at each moment along the way it was just our normal life.

Bobby was diagnosed just before my eleventh birthday and he started treatment immediately. I only remember the timing of it because I had to make the decision to either have my birthday dinner without Bobby and Dad, or to have it in the hospital. Bobby had only been there for two days when we shlepped bags and bags of take-out Mexican food up to the pediatric floor, spread it all out, put on our sombreros, and had ourselves a feast. The Menges’s had arrived.

In the early years, chemo was in-patient only. My dad slept on the plastic couch in the hospital during chemo weeks, and every day after school my mom would bring the three of us to visit. We’d do our homework, play cards, or perch on the window ledge and count all the water towers we could see from his room. I liked this game because my eyes were the best. Bobby received much of his treatment at the local hospital down the road and pretty much immediately, he was the Eloise of the pediatric floor - he ran the show. He had nightly water gun (syringe-gun) fights with the night nurse Steve. He zoomed around using his IV pole as a scooter. He reigned over the playroom and knew everyone by name. And everyone knew him. The three of us slid easily into this environment of chaos and novelty. One day we ditched our homework and the ped floor and rolled Bobby out to the courtyard to play kickball. Andrew pitched, Bobby kicked and hopped on his IV pole, and I sped him off to first base. The nurses, likely tasked with chaperoning the whole affair or just out for a smoke, huddled by the wall nervously.

In the early years, to save the chronically ill kids from daily needle pricks, chemo, blood transfusions, platelets, and other medication were all administered via a central line. This line was a surgically inserted tube that hung about a foot long just off center of the chest. One day a nurse took me aside and handed me a naked doll with a tube sticking out of its chest and asked me if I could be a good big sister and show the doll to Bobby and explain to him what the tube was and that it wasn’t scary. Now, as a brand new eleven year old, and self-identified “good big sister” who also liked a task, I brought the doll to Bobby knowing full well how unnecessary this particular task was. We all knew the tube was a central line and Bobby particularly - as the one who had it sticking out of his own chest - didn’t need the doll to explain anything. He had his own. What we didn’t know at the time was how much stress this central line would bring my dad, and in turn, how much enjoyment his stress would bring us. During the weeks between chemo, Bobby came home and normal sibling activity resumed - wrestling, swimming, beanie-baby wars. The central line annoyed the three of us insofar that it had to be cleaned and dressed nightly, a task Bobby insisted he do himself, which seriously cut into our reading time. But my dad, whose biggest fear in those days was that one of us would inevitably yank that central line right out of Bobby’s chest, stood by anxiously and not so passively, to which we reemed him relentlessly and called him an overprotective psycho. For what it’s worth, the central line remained safely inserted in Bobby’s chest, but there were a few times it got a little inadvertent tug.

Every summer, we went up to the lake with our cousins. There we found a cliff just a short trek up through the woods that presented the perfect landing to fling ourselves into the water 40 feet below. The pack of cousins would all climb up, launch ourselves off one by one, swim a bit out of the way to make room for the next jumper, and tread water until everyone was off the cliff, before starting the swim back to the dock together. Bobby was sick and weak and an absolutely miserable swimmer - then and his entire life - but he trekked and jumped and swam with the rest of us and since he never actually drowned none of us thought much of it. My dad on the other hand stood on the dock or hovered nearby in his kayak having mild panic attacks every time the feeble little Bobby threw himself from the cliff. We didn’t notice. We were already trekking back up to the top.

Quickly after Bobby started chemo, his hair started to loosen and thin. One day we thought it would be fun to pull it all out. We stood outside on the back porch, excited at the novelty of chunks of hair slipping easily into our fists. My dad draped a towel over his shoulders like a barber, my mom anxiously hurried to collect some of the hair in a ziplock. We ignored them both and pulled out every single hair within five minutes. What excitement! He was bald as a cue ball!

Every night Bobby had some medicine that he had to take for something or other. My mom would dose out the liquid into a syringe (his method of choice) and Bobby would pace around the kitchen drumming up the courage to squirt the gross white consistency down his throat. He was particularly dramatic about one medicine called Bactrim. The three of us would sit around the dinner table and count down from 20 or 30 or whatever number Bobby chose that night so by the time we got to zero, it had to be gone. Sometimes we had to start over or extend the time and we thought he was being very unreasonable until my mom tricked us into drinking some of the Bactrim out of a water glass. We spluttered and spit out what we quickly realized was not a pina colada as much as it smelled like one. My mom stood by as if to say, “See? How do you like it?” We thought she was absolutely crazy.

At some point along the way, Bobby got his Stem Cell transplant at some hospital in New York City. He was in the hospital for weeks and weeks, which meant daily adventures for the three of us. When stuck inside, we ventured to the gift shop for gum or cards, the cafeteria for a soda or a snack, read the donor wall and found the names we knew or thought were funny, roamed the halls and explored our new domain. This hospital room had a sprawling view with a fresh array of water towers to count, but suddenly we also had video games! We had previously been a videogame-free household, until some well-intentioned family friend dropped one off for Bobby. And due to the six-member democracy my parents had established - treat all children equally - those games were accessible to the three lucky ducks hovering around the hospital bed as well. When Bobby had to wear a mask when his counts were low, we all had to wear masks. When Bobby had a doctor’s appointment, we all piled into the minivan. When Bobby got gifts, we all got gifts, more or less. The Gamecube was our Gamecube, admittedly the handheld Gameboy was Bobby’s, but if we were all killing time in some waiting room somewhere, we each got equal turns. Mario quickly became more entertaining than water towers.

Every so often, my dad, or some various relative who came to help take the load off my parents, ditched my mom and Bobby and led the three of us out of the hospital and onto the bustling streets of New York City to do nothing more than wreak havoc elsewhere. We meandered not so quietly through St. Patrick’s Cathedral, ran through the Egyptian tombs in the Met, ate chicken parm in Little Italy, and gauped at the strange unidentified forms hanging in the shops of ChinaTown. We had cab-hailing contests, fought off the foreign invaders at the Cloisters Museum, went ice-skating at some sketchy rink above a garbage dump, pretended to be immigrants crouching under tables in the Tenement museum, and found a delicious hole in the wall Portuguese restaurant in Harlem - one we could never find again.

We thought it was weird and hilarious when Bobby turned black from his stem cell transplant, and again when he turned orange from his radiation. Funnier still as we imagined some government agency coming to inspect the biohazardous material being flushed down our toilet only to realize it was his pee. He was so radioactive that my dad had a geiger counter that would beep if he got too close.

As the lemon of the family, Bobby had a number of medical issues including a spiral fracture down his femur and then a fused growth plate which led to one leg slowly lengthening beyond the broken one. The doctors said the chemo and radiation he had received a few months before had nothing to do with it, but none of us really believed that. At some appointment or another in New York City we met with a world renowned surgeon who would, or had already, performed a leg lengthening surgery on Bobby. This humanitarian of a surgeon spent part of his year in Africa, performing surgery on babies born with cleft palates and hunchbacks. As a family who quoted ad nauseam from books and movies including all the lines by Igor from Young Frankenstein, no one should have been surprised when - while we huddled around the doctor looking at the pictures of the deformed children - Jake, in a deadpan expression, looked intently at the screen and said, “What Hump?” Naturally, we lost it. My dad stood fuming behind us. We all desperately held in our laughter during the lecture we received on the car ride home. In all fairness, looking back my dad admits it was very well timed.

This leg debacle meant Bobby was bound to an excessively heavy wheelchair that had to be heaved around everywhere we went. We were given a handicapped sticker for the car but my mom said those spots were for people who really needed it. We found this completely unreasonable; the wheelchair weighed a ton. I don’t quite believe in magic, but we quickly discovered that if we all played “Light as a feather, stiff as a board” with the wheelchair, it became a manageable load for three small kids to lift in and out of the trunk. During a birthday party at a laser tag arcade, Bobby wore the vest and I hurtled him through the dark tunnels while he shot at all his friends. We zoomed him, and ourselves, around the driveway and up and down the street as my dad yelled cautions at our fleeing backs, and inevitably had a full fledged conniption when sure enough, I screeched the chair to a halt and Bobby flew out. My dad was being dramatic, Bobby was fine.

Looking back, it occurs to me now that while my parents were slowly slipping into stress induced hysteria, the four of us were becoming increasingly amused by their antics. One night while sitting at dinner, my mom started frantically spraying us all with Holy water. We weren’t the kind of family that generally kept vials of blessed liquid scattered about the house, but she may have just been covering her bases in terms of drawing upon every single entity within her control that just might grant Bobby a miraculous recovery, and we - sitting at the dinner table, eyebrows raised at each other, wet and amused - thought it was hilarious…and that she was losing her goddamn mind.

As we all got older, the whole situation got a lot less funny and then not funny at all in the last few months. But at that point our roles were set. Even as adults, it was still our duty to try our very best to make light of it all.

We thought it was a fantastic idea to sneak beers into the pediatric floor of the Duke hospital, but the rule follower in Bobby was not amused. We thought it was ingenious to cut up the cardboard boxes in the basement - boxes my mom specifically asked us not to destroy - in order to create a basketball retrieval system so the couch-ridden Bobby could shoot hoops while watching Duke in March Madness. We thought it was a great idea to get drunk at a Jets game while Bobby was mid-chemo, and laughed our butts off watching him strut around the parking lot pawning off some shrimp cocktail to other tailgaters, less funny when he puked up his chemo outside the New Jersey transit, but funny again when he rallied on the train ride home.

We thought it was wild that after years of in-patient chemo, we were now in and out with enough time to grab a slice of pizza on the way home, and even crazier when Bobby dressed up in a surgical gown and mask and mixed his own chemo right in the doctor’s office while I sat on the old window ledge counting the same water towers for the millionth time. To my dad’s relief and our complete indifference, the central line was replaced by a creepy looking port that looked like a cyst above his collar bone. Unfortunately 101.4 fever still meant an overnight stay, but still, technology was advancing right before our eyes!

We heard weed was a miracle drug for pain and discomfort, and we thought my mom was nuts for not letting Bobby take some - in her defense it was illegal in New York, but still we knew a guy. I secretly shipped Bobby a gummy my friend had made but hadn’t been approved for sale yet. I told Bobby to take a tenth but he took the whole thing all at once and slept for an entire 36 hours straight while my parents were away for the night. He texted the three of us a wildly funny message when he woke up - pain free for 36 hours I should add. We thought we were clever when, during Jake’s terribly boring and sweaty college graduation ceremony, Bobby lied and said he didn’t feel well so we were allowed to sit “right outside” and instructed to “listen from the door.” We found free drinks and sat on picnic tables in the sun, and we sure did not listen from the door. We thought it was weird and ridiculous when Bobby texted us that he pooped out part of his tumor. And Bobby thought it was hilarious when he innocently asked me if I could help him clean out his colostomy bag, during which I almost immediately puked on the couch as he laughed his bald head off.

We even laughed and sang when Bobby’s band played a concert in our backyard - the concert that would end up being their very last. The cops came after receiving a noise complaint. We nodded and apologized and then ignored them and carried on.

Bobby was nineteen when he died on September 8, 2017. Andrew was twenty-seven, I was twenty-five, Jake was twenty-one.

Everyone who has experienced death of any kind finds comfort in different ways, and I have found that looking back after losing someone is always easier than looking forward. We lost a brother and an ally in life, but we also lost years of memories that won’t happen because he isn’t here. And that is a terribly sad reality about death. So for the lack of a better alternative, we carry on - our slates slightly less clean than they started - and as we have become accustomed to doing for 25 years, we take it all in as it comes.

So one last time we look back on those years and how there was always some adult standing off to the side frantically yelling warnings or nervously watching the four of us recklessly proceed through life, but we didn’t seem to notice or care. Perhaps it fueled us. Perhaps it helped Bobby. And I know now that my parents did it all on purpose; they did it so we wouldn’t have to. Siblings don’t exist to provide gentle sympathy, and we sure aren’t brought into this world to nag or croon. After all, we were allies and the parents were absurd. What were we supposed to do, take it all seriously?

By Emily Menges


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