An Informative Infographic c/o St. Baldrick’s

Robot Boy & The Intrusive Interloper

September is the month designated for Childhood Cancer Awareness, but for the patients and their parents, it isn’t confined to a month. It is a lifetime.

This is a very informative infographic from St. Baldrick’s Foundation concerning childhood cancer stats, money allocated by the government (very little) to the cause, and where your donations may go when you donate to a cancer foundation.

I also urge you to click the graphic to visit St. Baldrick’s website. Thank you.

St. Baldrick's Foundation – About Childhood Cancer

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Chemotherapy and Stubborn Little Boys (And Moms and Dads)

I never thought I’d say the words, “Thankfully my son started chemo today.” Because no one should be happy that her child is receiving chemotherapy. Because in that case obviously something is very wrong. Something has gone awry, and bad. But I say that I am thankful because for the last month and a half we’ve been waiting to know if chemotherapy was even an option.

See there was a time when the doctors thought Doodles wouldn’t even make it this far. He was “neurologically devastated” and they weren’t sure if he was “salvageable”-because he’s a car or sunken shipwreck. We were told he “wasn’t going to get better” and that they were just planning to sustain him and “keep him stable.” We were even told they might have to “just let nature take its course”, to which we replied, “That is not an option.”

Because we knew what they didn’t know, and although they were reluctant to believe us, we refused to let Doodles go down without a fight. We saw what the doctors didn’t see. We saw that he was “salvageable”, and that he was conscious, responsive, and aware. We knew he was there.

Me and Doodles, in grayscale

I’m sure we were regarded as over-optimistic parents refusing to accept reality. I’m sure there are sadly many parents who might have taken the doctors’ words as testament and went along with whatever their plans were. But we’re stubborn and very hard-headed. And so is Doodles.

We had a long discussion, he and I.  I told him it was very important that he start showing the doctors that he was a strong man and that he was getting better. I told him it was the most important thing in the world. Whether he understood me or not, I don’t know, but he did what I asked. When the neurologist came to asses him she spent less than five minutes before she decided he was, in fact, not “neurologically devastated”, and that he was very much aware and alert.

Doodles finally got his tracheostomy and his g-tube (something that was delayed because the oncologists who originally looked over his case decided there wasn’t much they could do), and although he is still on the ventilator, he is breathing over the machine at almost twenty breaths a minute. They are now weaning him off the ventilator, something we were told just weeks ago wouldn’t happen.

The hem/onc team wasn’t sure if they could or would start chemotherapy simply for the mere fact that they assumed Doodles wouldn’t recover and that it wasn’t feasible. To them it seemed more feasible to let him expire, I suppose. But it wasn’t feasible to us, and certainly not to Doodles.

So today I say that I am thankful that my son started his chemotherapy because it sure beats the hell out of the alternative.

I want to add that not all of Doodles’s doctors were so fatalistic about his condition, and I’m very grateful to those who voiced their opinions and were his advocates in opposition of those doctors who were ready to close the book on him. I also want to acknowledge the many great nurses, physical therapists, respiratory techs, and other staff here who have taken to Doodles so much so that they check in on him and ask about his progress even when he’s not their patient for the day.

I Was Still There

“Damn it!” Leo said as we were seated. He was searching his pockets, putting his hands in the same ones over and over.

“What’s the matter?” I asked.

“I took my inhaler out at the security thing, and I didn’t pick it up.”

“Aw man,” I groaned. “Do you have another one? In your bags?”

“No,” he said covering his face with both hands. “It was brand new, and I didn’t think I’d need another one.”

I inhaled then exhaled, trying to think of a solution. “Do you know your prescription number? Maybe you can call a drug store when we get to Seattle. Do they have a Med-Aid there?”

“I don’t know it,” he said.

I sighed and turned back around in my seat.

“I know,” he said. “You told me a million times to bring a spare.”

“In case-”

“In case I lose it,” he said.

“Maybe we can contact the airline and see if anyone turned it in,” I suggested.

“Yeah,” he replied, despondent.

I’d been on him about the damn thing ever since we were kids. He forgot it at home when we went to camp in the summer of 1987. Tommy Kepper used the same kind and gave his to Leo. His mom had packed a spare. Leo’s mom likely also packed a spare, but we’d never know since Leo forgot not only his inhaler but the entire bag at home. As I recall, he also borrowed a pair of swim trunks, goggles, sun block, and my handheld electronic football game. During Spring Break of 2000, he lost his inhaler and spent the weekend in the hospital.

“I’m sorry, guys,” he moaned from beneath the clear plastic oxygen mask.

“Don’t apologize, honey,” said Gloria. Her blonde hair lingered on her tanned shoulders then fell away when she leaned forward to touch his hand. We shared a hotel room that trip. I guess it wasn’t all bad.

Leo was wheezing when we landed in Seattle. We ran across the tarmac in the rain to the limo. My shirt was damp, and my hair was sticking to my neck. Leo was coughing.

“Jason,” I said on the phone to our tour manager. “Cancel the smoke machines.”

I had Spencer try the airline, but to no avail. Leo tried his doctor’s office and was told to make an appointment.

“But I’m in Seattle,” he said, his cell phone on speaker as we situated our luggage in our suite.

“I’m sorry, sir,” replied the receptionist, emphasizing the last word with an air of condescension.

“What’s your name?” I said taking the phone from Leo.

“Frankie!” he whispered; it was the same voice he’d used when we’d sneak into his dad’s closet to snatch his Hustlers.

“Excuse me?” she breathed heavy into the phone.

“I asked your name,” I said.

“Marleen,” she answered in the same disdainful tone.

“Well, Marleen, don’t you think you can ask the nurse or doctor about it? I’m sure you’d rather not be responsible if my friend needs his medication and doesn’t have it.”

“Let me take your name and number and somebody can call you, I guess,” said Marleen with more heavy, annoyed breathing.

I handed the phone back to Leo.

By rehearsal time, the doctor had not called back.

“Here’s Leo’s cell phone,” I told Spencer. “If the doctor’s office calls, let us know. I don’t care if you have to interrupt me during the middle of a goddamned aria.”

“Yes sir, boss,” he said taking the phone from me.

“What the hell is this?” I asked as two members of the road crew rolled a massive smoke machine up a ramp toward the stage.

“It’s the smoke machine,” one of them said.

“No,” I said. “Where’s Jason?”

“Over there,” one of them said motioning with his head toward Jason who stood just off to the side talking on the phone.

“What is that doing here?” I asked Jason.

“I’m on the phone with Chris,” he said.

“I don’t give a shit if you’re on the phone with Christ High Almighty. I want to know why that is here.” I pointed to the machine.

“It’s paid for,” he shrugged.

“Well so are you, but if my drummer dies mid-solo, you and it will be in the dumpster before tomorrow,” I said.

“He’s walking away,” I heard Jason say on the phone with our lawyer. “All right. Hey guys!” Jason waved his arms as if he were landing a plane on the stage. “You can get that thing out of here. We’re not using it.”

Sometimes you got to be a bitch to get things done. Francesca taught me that. She’d know, having been a bitch since adolescence.

“Hey look it’s Faggot Frankie and his sidekick Lady Leo,” shouted Tim Blappert, a big fat sweaty kid that smelled like he smoked a pack of Camels on the way to school because of his mom who drove with the windows up and her cigarette hanging out a tiny crack on the driver’s side.

“I’m gonna kick that kid’s ass,” Leo said, huffing and puffing, overwhelmed by adrenaline.

“No you’re not,” I said.

“Yeah I am,” he said taking off his backpack.

“And what? Die right before you pile drive him into the concrete?”

“Hey fat ass!” I heard Francesca shouting from across the street. “Yeah you. That’s my brother you’re talking about.”

“Whatever,” Tim said. He turned around and lumbered down the street toward his mom’s faded gold Ford Escort.

“Yeah, walk off!” Francesca shouted.

“Thanks, Francesca,” I said as Leo and I walked across the street.

“God. Grow a pair, Frankie,” she said.

She was the abrasive twin. It took some time before I learned the benefits of assertiveness. But I was much wiser by the time my career with Devil May Care became a viable ambition. Leo too. It didn’t come easy, spending all night on the local music scene, passing out flyers in bar after bar, trying to land gigs, and otherwise showing face after spending all morning in classes and all evening at our real jobs – ones that paid just enough to cover the costs of flyers, gigs, and cover charges to clubs where we hoped to play. Mistakes were made, but we took a lot less crap from everybody.

Like the first time we broke up the band, emphasis on the words first time. Before Devil May Care there was By Proxy, a band created by Leo and I with Leo on drums and myself on guitar. I hardly remember our bassist except he was a scraggly character that I’m pretty sure was homeless. He always had good weed, though. Our singer was a guy named Stanley Reynolds. Called himself Stan Rey. It was his stage name, and I wanted to pound him in his face every night at band practice.

“He’s late again,” said Leo while we sat in the cold empty storage unit we rented waiting on Stan Rey.

We weren’t supposed to practice in there, but everybody did it. We paid the rent so the landlord didn’t care. There was a whole row of storage units with bands playing in them. Sometimes the cops got called. Most of the time they just passed by then left.

We played a lot of shows with the guys who rented the unit next to ours. Their singer’s name was Godwin Francis, and he was the funniest person I ever met.

“Hey kids,” said Godwin walking into the storage unit with us. “Waiting on Stan Rey?” His laugh was so genuine it made us all laugh.

“I hate that guy, dude,” I said lighting a cigarette. “I swear to God.”

“Don’t take my name in vain, son,” Godwin replied, holding his hand up to my forehead like the pope blessing somebody.

“You shouldn’t joke like that, man,” Leo said “You’re going to end up with some incurable disease or some shit.”

We all laughed.

“Thanks for laughing at that, guys,” said Godwin. “‘Godwin’s gonna die of an incurable illness. Ha Ha Ha Ha!’” He said mocking us.

Was depression that claimed Godwin. A member of the road crew found him backstage in his dressing room.

“Remember, down the path not across the street,” Godwin would say as if in jest. He remembered.

The person who first used the term douche-bag in reference to a person and not a thing must have known Stanley Reynolds. We canned him one night right before a gig we played at a place I worked called The Pit. I was a bouncer there, and on the weekends they had live bands. It was an important show. A writer from NOLA Harmony was in the audience, and we all knew their reviews were far reaching. We all knew. Even the great Stan Rey knew it. But still he showed up unprepared and late as usual.

“Are you kidding me, Stanley?” I said when he walked in. “We’re on in like five minutes.”

“So? It’s not like I forgot what to do,” he scoffed.

Thwack! Badoom!

“God that felt good,” I said rubbing my knuckles.

“Who’s gonna sing now?” asked our bass player.

“Frankie,” said Leo.

“Uh,” I hesitated to accept the position. I knew I was capable. “Okay. Yeah. We don’t need Stan Rey.”

“Guys, it’s almost time to- Oh my goodness,” gasped Gloria. “What happened?”

“I punched Stan Rey,” I said.

“Is he conscious?” she asked.

“I dunno,” I shrugged.

She shook her head and walked out. “Guess I’ll be icing that hand

again tonight,” she said as she went back behind the bar.

“Gloria!” I called from backstage. “Is Harry still here?”

Harry sat in for me a couple of times when I injured my hand after a scuffle with an unruly customer who wouldn’t leave the girls alone, well, one of the girls. Harry knew our songs, and he was a better guitarist than me, anyway.

It was the best decision we could’ve made. We got a favorable review – with many mentions about the charismatic front man. Of course Leo might recall differently, if he were here to. But the band didn’t get serious attention until after we lost homeless guy and found a replacement. Pete left his band, The Pogos, to join the newly formed Devil May Care, and none too soon either. Shortly after The Pogos’ singer, Jeff, followed Godwin’s example.

Leo was overly tired after rehearsal. I insisted he go to the hotel and rest. Spencer called the pharmacy but there was no prescription there in Leo’s name.

“If he isn’t better, we’re not going on tonight. Period,” I said to Jason.

I went to check on Leo. He was lying in bed watching television, coughing, and sneezing.

“I think I just got a cold, Frank,” he said. “I took some medicine.”

“You should call the doctor’s office again,” I suggested as I examined the box of Sinucaps on the nightstand.

“I did. They called in the prescription. But the pharmacy just hasn’t filled it yet,” he answered in a nasally, congested voice.

I sighed. I knew he would go on even if I pleaded with him not to. But I did anyway.

“Why don’t we cancel tonight? It’s okay. Shit happens, right?”

His expression answered my question.

“I’m sending Spencer to the pharmacy to wait for that prescription to be filled,” I said.

Leo claimed to feel better after his nap. Spencer had returned with the inhaler, and the wheezing had stopped. It seemed a positive sign, but Leo’s irritable mood made it apparent he was not much better.

“What happened to all my stuff?” he griped in the dressing room.

“I don’t know. What stuff?” I asked.

“All the stuff I always have before a show,” he snapped.

“Man, your rag started or something?” asked Harry.

“Fuck off, Harry,” said Leo.

“All right,” I said. “Let’s just get through this show, please.”

Leo was quiet for a while then he called me over. “Hey Frank, you think you can sing On The Rebound for me? I just don’t think my throat is up to it.”

“You mean your lungs?”


“You’re not fooling me, Leo. You can trick those guys. But I know you too well,” I said.

“Just can you?”

“Yeah, sure. You know it,” I said.

We went on. Nothing seemed out of the ordinary. Still I felt something ominous in the atmosphere. During Harry’s solo we ran to the men’s room. I urged Leo to get a quick check by the E.M.T.’s that were standing by.

“We go back on in a second,” he said.

I spread my hands in a supplicating gesture. He shook his head and jogged back onto the stage. I followed him, and we went on with the show for a bit.

Then came Leo’s turn. I was leading up to the part in the song where Leo was to take over, but instead of drums I heard the cacophonous sound of metal crashing. Everything paused around us. I threw the microphone and ran to Leo who was already surrounded by Harry and Pete and some other guys. I pushed them out of the way and started CPR. We’d worked as lifeguards one summer at the country club where Leo’s dad was a member. I stupidly sang Staying Alive in my head to keep the rhythm of the chest compressions. Within seconds the E.M.T.’s were there and took over.

“We got to intubate him,” one of them said.

“Shit, Leo,” I said. “Oh shit. Oh shit.”

“The mic’s still on!” Harry shouted.

“Cut the fucking mic!” I shouted.

Silence in the arena. Behind a lightless curtain, we could see out, but they couldn’t see in. The crowd heard everything.

Police and security cleared a path as I ran behind the E.M.T.’s who rolled the gurney carrying Leo down the long corridor toward the exit. A loud humming fire truck was parked beside the ambulance that was pulled up to the doors. The strobes on top a dozen police cars illuminated the scene with red and blue pulses. I breathed in time with their pattern. Red in. Blue out. Red in. Blue out. I envisioned the network of veins and arteries I saw on a diagram in anatomy class once. I thought of Leo’s lungs, the blood circulating through them. Or not circulating through them.

“We’re working a code,” one of the E.M.T.’s said into his radio as he closed the doors of the ambulance.

They weren’t leaving. I wondered why they were waiting. I could see them moving around in the ambulance.

Just go, I thought. Just get him to the damn hospital!

A policeman came to us, Harry, Pete, and I. He asked us to step to the side so he could speak with us. I didn’t move.

“Can you come over here with me, please?” he asked again.

Still I didn’t move. Everything was going to be all right. Leo was going to the hospital. He would come out, and next time he wouldn’t forget his inhaler. I would make sure. And if he did, we wouldn’t go on. I would make sure. As long as I stayed in my spot, the policeman couldn’t talk to us on the side. Because I was still there.

I was still there. And so was the ambulance. And so was Leo.

Copyright Donnell Jeansonne. All rights reserved. Reproduction or duplication whole or in part not permitted without permission and credit to the author.