Bad News Room

“Why are we in this room?” Ben’s wary voice wavered. He froze solid as his big brown eyes scanned the perimeter of his surroundings – as if he were searching the room for secret ninjas. He slowly tucked his trusty DS under his arm as he looked around, his head absolutely still but his eyes pivoting as his brain reeled. His expression was heartbreaking. It was suspicion mixed with dread mixed with “Oh, Crap. Here we go again.”

We were in a bad news room.

It’s no secret that the oncology floor is seeing increased traffic these days. More children are getting diagnosed with cancers and undergoing wicked treatments in order to save their lives. The waiting room is nearly always crammed full of children trying to be children despite their circumstances, while their families sit on plastic chairs in various stages of mental anguish. It’s hard to say why there’s such an influx of childhood cancer. Maybe it’s our environment (which is what I believe.) Maybe it’s the food the FDA has wrongfully approved. Maybe it’s solely genetic and we should stop breeding immediately. Maybe it’s God’s punishment. He said He’d never flood the earth again but He never promised He wouldn’t wipe us out with cancer. I don’t know the answer. Heck. I don’t even know how I’m going to make it through today.

But I knew we weren’t getting bad news. At least, not today. It was simply an unfortunate fact that all the other rooms were being used. We had to wait somewhere. Even though I explained it to Ben, he wasn’t convinced. As his body tensed with mistrust, he continued to search for those secret ninjas as he slowly perched on yet another piece of plastic furniture. He gave the room one last dubious scan as he slowly opened his DS to free his mind. Within seconds, he had delved into whatever world was flashing across the screen of his DS, forgetting all about the bad news room.

We’ve been conditioned like Pavlov’s dogs. Certain sounds, smells, locales, will throw us into tail spins, making us salivate for the lives we thought we signed up for. Oh, a “normal life” makes our hearts ache for places where bad news rooms don’t exist. I know that everyone has to spend a little time in a bad news room once in a while, but it’s simply not acceptable to sign a lease on one of these joints. The rent is too high and the amenities suck.

People have said that we’re lucky we get to meet sports heroes and go on a wish trip and get all sorts of swag. But if you’ve spent extended amounts of time in a bad news room, then you’d understand that there’s no luck to it at all. It’s simply a distraction from reality. “Sorry you’re getting all this bad news but LOOK OVER HERE! I’ll give you a present in exchange for this hellish experience.”

No, I’ll take the world where bad news rooms are an occasional risk and regular life resumes shortly thereafter. Bad news rooms should be the length of a commercial, not a long-running series. I’ll opt for the environment that doesn’t make my adrenaline flow with the dread of “Oh, shit.” I’ll trade places with my son if it means he gets to move out of this bad news room and live happily ever after.

Did you hear that, God? I’ll take his place. I will. Willingly. If it means he can grow up and bless this world with his wonderfulness, I’ll do it without a shred of reluctance. He has so much to offer this world. And it’s clear that my job was to get him here so he can spread his wonderfulness, so my job is done. And I’m not insured so my battle will be short-lived. I cannot afford the treatment. I’ll go quietly.

I know my pleas reverberate off the stark walls of a bad news room. I know the echoes bounce around and fall on ears that aren’t able to hear. I feel the knowing hand on my shoulder of those who are sorry but can’t do anything more to help. And it breaks my heart that I’m put in the position of doing the same thing to my son. My sorry hand rubbing his back, knowing how much it hurts but completely unable to do anything about it.

I wish I could pull a “Hunger Games” and volunteer as tribute. Let me navigate this bad news room.

I’ll do anything to spare my son.

 

 

 

Silver lining

Ten years ago this week, we were on the hunt for the perfect Christmas tree. The search party consisted of Matt, a two-and-a-half-year-old Ben, and a five-months-pregnant me. We weren’t trekking through the Wilderness on our search – kinda hard to do in Dublin, Ohio – but it was a pretty popular tree lot, laden with rows and rows of trees. The day was overcast and the chill in the air was a definite harbinger of snow. Matt was off on his own while Ben and I half-heartedly looked at the trees. He was more interested in weaving in and out of the rows, and I was following along to make sure he didn’t wander off or slip on the icy snow pack.

“Ooooh! Smell the trees, Ben!” We put our noses toward the sky and inhaled sharply, trying to strip the balsam out of the air. I don’t think Ben appreciated it as much as I did, but it was cute to see him emulate my sniffing. This age was my favorite yet. I went into this parenting gig without any indication of how these little people-thingies worked. The newborn phase was freaky. The first year of reaching milestones, like rolling over and sitting up, was pretty cool. But this phase of all-encompassing wonder was just so awesome. I loved watching my little Bean discover things. I had to admit that I was really nervous about starting over with a whole new little person, but if he or she (I like the surprise aspect of hearing the gender upon birth) would be anything like Ben, then I was up for doing it again.

Ben limped back to me and raised his arms up high. “Hold me, mommy.” There’s that damn limp again. Of course, he never exhibits said limp when we’re at the pediatrician. I grunted as I hoisted him up, groaning at the beginnings of back pain. He snuggled into me as he laid his head on my shoulder. Instinctively, I swayed back and forth, attempting to comfort my son. But while some things – like swaying – came naturally, so many other things didn’t. I had reached the point where I was taking him to Urgent Care for all the weird symptoms. The easily dismissed indicators of a common virus. A case of constipation. A possible hip infection. No real tests were being run because the evidence just didn’t seem that damning. And, of course, I was an overly protective first-time mom with hormonal issues caused by this second pregnancy. Everyone thought I was just being a nervous, first-time parent.

I knew Ben was hurting and I took him to the doctor all the time. Why won’t this runny nose go away? Why does he have this constant low-grade fever? Why doesn’t he want to eat anything? We had tried everything to get him to eat. He liked spaghetti. He liked bread. But even presenting him with his favorites was not a guarantee that he would eat. “He’ll eat when he gets hungry. Don’t make special allowances. You’re doing it wrong.” Everyone had an opinion on how to solve it. Everyone had an opinion based on their expertise. I regret that I turned to everyone else for advice and didn’t follow my own instincts.

I knew deep in my heart that something was really wrong.

And, of course, when he was diagnosed with a very horrible cancer, the variety of ailments all made sense. He was misdiagnosed for a long time, though. And I feel very guilty about that. Would he still be battling 10 years later if I had been more persistent? Maybe they would have caught it earlier. Maybe he would have lost his hair only one time. Maybe he would have forgotten all of that initial therapy – 15 months of hell – because he was just a toddler. I know I shouldn’t play the “what if” game because it’s a game that nobody wins. It happened and nothing on this earth can change that. “You should sue the pediatrician. Why didn’t you make them do more tests? You’re doing it wrong.” Everyone had an opinion on how to solve it. And this time, I told them all to piss off. Well, not really verbally, but I just quit sharing my feelings with all of them.

But the time leading up to it, before we knew about a horrible disease named Neuroblastoma, things were kinda normal. Here we were looking for a tree. Playing amongst the rows of sweet-smelling pine. Watching him toddle about, cautiously reaching out to touch things with his curious fingers. And then retreating to his mommy when he just didn’t feel good.

I’m mad at cancer for hiding in my son that Christmas 10 years ago. I’m mad that all the Thomas the Tank Engine toys were opened but not played with because cancer had exhausted him – even though we thought he was just overwhelmed with all the excitement that Christmas morning brings.

I guess looking for that tree was really my first realization that something was really and truly wrong with Ben. I let it slide for two more months because I listened to everyone else. And I’m sitting here ten years later dreading putting up my freaking tree because somehow I link the two together. I can usually deflect these emotions with a healthy dose of cynicism but this anniversary is getting the better of me.

Ten years. A decade. Nearly a quarter of my life. Nearly 5/6 of Ben’s life. And the entirety of Madeline’s life. It’s taken too much. But, it hasn’t taken everything. My sweet Ben is still here.

And there’s my silver lining. Right?

 

 

Happy!

She stepped into the elevator directly after we did, a bible in one hand and a cell phone in the other. Her bright blue t-shirt shouting HAPPY! HAPPY! HAPPY! in multi-colored letters. I wasn’t sure if her shirt’s message was meant for me or a reminder for her. We were in a children’s hospital, after all, and this could be a damning place in which to be happy.

My daughter was laughing over the names we had just made up for ourselves, names that couldn’t be spelled with letters – they were simply sounds. How do you spell that farting noise that you make with your mouth? Or the loud, popping noise that emanates from your lips? We giggled as we “called” each other by our new noisy names as I watched the HAPPY! HAPPY! HAPPY! lady from the corner of my eye. Her breath kept catching as she attempted to squelch her tears. She was holding it together pretty well, as I think I was the only one in the crowded elevator who noticed she was struggling. She anxiously tapped her long, manicured nail against her bible as she tried to distract herself from breaking down entirely.

I make it a habit to note which floor people are going to so I can know a little bit about their backstory. Understand this: I’m just nosy when it comes down to it. Anyway, the second floor is the surgical unit. Seventh floor is the Center for Cancer and Blood Disorders (AKA Ben’s floor.) HAPPY! was headed to the eighth floor, which is generally dedicated to patients with a variety of ailments but usually have a shorter stay. This woman’s story could be anything. I didn’t know what to do about her threatening tears, so I did nothing at all. We bailed out at the seventh floor to tend to our own sad story, leaving HAPPY! on her own.

We were heading to clinic for blood work and then we were going to visit our good friend, Justin, who was inpatient. After we finished our business in the clinic, we headed down the hall to see Ben’s good buddy. There are two wings on the seventh floor for patients. One side is like most other floors but the side Justin was on was for the bone marrow transplant kids. You have to wash your hands for an hour before heading in. Oh, okay, maybe not that long, but there are more steps to take before entering this unit. Ben hid his phone in his pants while Madeline and I put our stuff in a locker. Really, you’re not supposed to take anything in that isn’t scrubbed down and I didn’t know that Ben was sneaking in contraband until we got to Justin’s room.

Before knocking on his door, I put on my “HEY! LIFE IS AWESOME!” face, while Madeline was secretly wondering if she was going to have to go back to school and Ben was frozen like a rock. The soft knock on the door prompted Lori to tell us to come in. At first glance, Justin looked great. He was laying in bed with all sorts of monitors attached to him. At some point, he was going to be receiving an infusion of precious stem cells to help his body heal from all the treatment he’s had to endure over the last eight years. But I could tell despite physically looking okay he wasn’t emotionally thrilled to be stuck in the hospital again.

Justin and Ben chatted for a few minutes while Madeline stuck to me like glue. This poor child has been raised in a hospital setting, so I don’t think it’s an uncomfortable feeling she had about the environment. I believe she has an innate ability to understand when things aren’t quite right. And I believe she understood that our dear friend is fighting his biggest battle yet. Usually, Ben and Justin will chat for a while about Legos and video games – the two things that our kids are experts at because that’s all they can do in the hospital. But today, Justin wasn’t up to it. He seemed cranky. He seemed mad. Actually, I believe the better word is “pissed.” He didn’t want to chat much. He didn’t want visitors. He just wanted to be left alone. Ben retreated to a corner to play on his phone.

We didn’t stay long. Lori swore she didn’t need anything, but at that moment I just wanted to give her something. The fifty-seven cents I had in my pocket. The ability to browbeat a doctor into finding a cure immediately while holding him over a toilet bowl threatening to give him another swirly. To whisk her away to a private island I bought for her… a place where cancer couldn’t get to her son. Or, more realistically, to hold her as she simply broke down. But I knew she wouldn’t do that. Not in front of Justin, anyway.

As we were walking down the hall toward the elevators, I dared Madeline to press her nose against the glass of a door where a bunch of important people were having a meeting. She considered it but didn’t take me up on it. I started to cry a little because I thought that her silliness would somehow make my heart not break. Oh, dear God! When will this end? And can it please end without another child having to die?

I don’t know how to stop the hurt.

And as we pushed the button and laid our bets on which of the four elevators would arrive first, I wondered about “Happy.” I hoped that this was just a brief encounter for her, that her child would get out soon and they’d never have to come back. And even though I wished that normalcy for her, I couldn’t help but be just a little bit jealous.

We’ve been dealt an impossible task. And I’ve spent almost the last year of my life doing two things: taking care of my children and hiding from the rest of the world. My computer gives me an outlet to share my feelings or to be “social” but the reality of it is that I’m hiding here, wishing for something that will never come.

I haven’t lost hope but I understand that we have already lost so much.