It’s not contagious

I’ve always been a people watcher. My real-life persona is to be more of a wallflower than the Life of the Party. I know. This is shocking. How can someone as vibrant and adorable and fun like me be so shy? It’s true. I can put on my game face and be outgoing most of the time, but my true identity holds a shocking amount of introversion. Anyone who knew me before the age of 25 can verify this. I was SUPER shy in high school, a little less shy in college, a bit more outgoing when I was a young adult, but then I branched out in epic proportions when I was 25. Of course, I had a very brief boxing match with thyroid cancer at that point in my life, which seemed to be a game changer for me. I decided to throw out my rule book and start enjoying life. I should also mention that my confidence boost coincides with the first time I ever ate mustard. Maybe it was a condiment that changed my life instead of cancer? Nah.

Anyway, I love to watch people interact. I enjoy watching a conversation where people one-up each other and constantly try to talk over one another. I think that’s why I stopped talking in public at a young age. No one ever heard me. I just listened and collected and watched and (sometimes) learned. I can recall and imitate how my grandmother drank her coffee. I remember conversations that no one else recalls. If there ever needed to be a family historian on useless information, I’d be your girl. Things that might seem mundane to others were fascinating to me. And I think this little nugget of my personality is why I love to write so much – there’s no one to dispute me or one-up me as I’m letting my thoughts and feelings flow. There’s no one to make me feel like I need to edit who I am.

So, now that Ben is missing the aggregate of cylindrical, keratinous filaments covering his noggin (AKA hair), I’ve intensified my people watching while we’re out in public. Some people look at him and smile with a bit of sadness in their eyes. I can get on board with this scenario because cancer is pretty flipping sad, especially when it happens to a kid. Some children point and stare. I’m okay with this, too, because he looks different and they’re kids. How else are they going to learn? I just hope their parents aren’t telling them some made up crap. But most people look at him, then look at me to see if I’m looking, then look away. In many cases, they’ll steer completely clear of our path. And I just want to say to these people: “He’s not contagious.”

I realize that most people just aren’t prepared to see a boy his age without hair. It can be shocking. But if we can get used to people with offensive tattoos and the bejeesus pierced out of their faces and those gauges that stretch ears to the point of being able to tie them above your head in a bow, or ANY myriad of differences, then why do we have trouble looking at a kid without hair? Or in a wheelchair? Or with Tourette’s? Or with Down’s Syndrome? Aren’t we supposed to appreciate and celebrate our differences? Aren’t we supposed to learn from one another? Is the issue the fact that Ben’s illness isn’t self-inflicted? He had no choice in the matter, he’s hairless because of cancer, not because he’s making a statement or owning a belief. I don’t care if someone wants to wear their ear lobes as garter belts. That’s up to them what they do with their body. But I’m gonna look. I might even ask questions. I want to understand. I guess I just want people to understand what my kid is going through, too. It’s okay to ask. Heck. I’ll even direct you to my blog so you can read more about it.

As I step off my miniature soapbox, I’ll admit that not all people are afraid. Last night at Walmart, a young man in line behind us offered to pay for our order, which consisted of a package of AAA batteries and a copy of “Shaun of the Dead.” I’d already paid but thanked him anyway. It would have been odd for him to buy me that movie. The batteries? Sure. They were for Ben. But the movie was solely for me, and not a classic like “To Kill a Mockingbird” or something worthy of a benefactor paying for it. “Shaun of the Dead” is a classic, but probably only to me. 🙂 Then, another kind person at Panera bought us some cookies and told us she’d be praying for Ben. That’s always nice to hear. I’m sure if I were to strike up conversation with either of them, they’d probably divulge that they had been intimate with cancer – and it had most likely attacked a loved one.

The funny thing is, I don’t know a single person who hasn’t been affected by this dastardly disease in some way or form. And with those odds, I would think that the majority of the world would realize that it’s simply not contagious.

 

 

Unicorns

I’ve entered a new dimension where I feel like a million life-altering things have happened but I can’t remember any of it and I think it’s still 2004 and somewhere along the way I was riding a unicorn. It all seems like a bad – yet oddly comforting – dream. Or perhaps I’m just hallucinating due to all the stress. I truly need to write daily so I can keep on top of all the weird stuff that happens. As it stands, I’m barely keeping up.

Two weeks of life have vanished while watching Ben battle neutropenia and pneumonia. We were stuck in the hospital for two weeks. This certainly isn’t the longest we’ve been inpatient, but I wasn’t expecting such a lengthy stay. And the kicker is that Ben’s 12th birthday just happened to coincide with this overdrawn visit. Out of all the days that cancer could potentially ruin, it just wasn’t satisfied until it held him hostage on the coolest day of the year. Granted, I’ve had to make due on holidays before. In 2009, he lost Halloween, Thanksgiving AND Christmas. I bought a miniature Christmas tree for his room and decorated his IV pole with colorful lights and garland to make the best of Christmas. He was so doped up though, that he didn’t remember it. In 2010, he spent his 9th birthday in NYC undergoing radiation therapy. But at least he was well enough to be out and about in the big city and have a party at the Ronald McDonald House after his treatment was finished. Cancer is a big ding-dong for trying to ruin so many important pieces of Ben’s childhood.

It wasn’t all horrible this time, though. My dad came from Ohio. My sister and nephew came from Pennsylvania at the last minute for a surprise visit. And Ben had lots of visitors – from Wapiyapi peeps, to the wonderful school teachers from Canyon Creek, to the awesome ladies who hooked Ben up with his hearing aids… it’s clear that many people care for Ben. And, oh! The cards that Jackie Sharp collected… I tried to count and I believe that in addition to what she collected and what was mailed directly to me, there were around 400 cards. I taped some of them up in his room. So many wonderful sentiments from so many people (and even some stars of the Country music scene sent Ben their well wishes!) One of Ben’s biggest supporters, Joyce Webster, made sure Ben had a super awesome Superman cake since I didn’t have time to make one myself. I think that despite the circumstances, Ben had a pretty good day. Seriously, his cousin, Anthony, was probably the best gift. They had a blast together.

But here’s where I have to complain: I went down to the cafeteria for about 15 minutes to get Madeline some lunch. As I was coming back upstairs, the doctors and nurses were all standing around Ben’s room clapping. Then they dispersed. In the 15 freaking minutes that I was gone, they came and sang happy birthday to Ben. I was heartbroken that I missed it. If any of you have ever spent any time in the hospital, you know that the doctors always do their rounds at the most inconvenient time for you. You’ve gotta run to the bathroom, or you’ve just taken off the top that recently got puked on (and they don’t knock), or you’re starving… but you know the minute you leave they’ll show up. And that’s what happened this time, too. I pouted for a good 20 minutes, left the room for a few to call my girlfriend so I could cry my eyes out. Silly, I know. But with everything that’s been less than satisfactory lately, the last thing I needed was to miss a bunch of doctors and nurses singing off-key to my newly minted 12-year-old.

Not to mention that I have other stressors occurring. My thyroid is all out of whack so my hormones are unhappy. My sleep is suffering. Certain people have made me really, really angry. I missed Peter Frampton in Columbus on June 20 (bought a ticket when I thought we’d be in Ohio over Ben’s birthday.) And my beautiful daughter is having some major self-esteem issues. It IS often times more than I can handle. I’m constantly putting things on the back burner. And, for the first time in ages, Peter Frampton will just have to take a back seat. I’m going to see him in August anyway. At least, as long as cancer doesn’t ruin that concert, too.

Yesterday morning, I woke up after having a sleepover with my sister. I don’t know that we’ve ever truly done that in our lives. We’re six-and-a-half years apart and I’ve always been that pesky little sister. I wouldn’t say that we have a tremendous amount in common – she’s always seemed like an adult where I live as a chronic adolescent. Anyway, we watched tv together and laughed with each other as we sighed with relief from being out of the hospital. The kids were playing well together in the next room so we had some time to just be sisters. It was really nice. Anyway, the next morning when I woke up, we started chatting and I moved closer to give her a hug. As soon as her arm slid around my shoulders I started to cry. She was actually in mid-sentence when she realized that I was doing that freaky silent sobbing shake. I couldn’t control it. For the first time in a long time I felt like I was safe. I could cry and it would be okay. All the other times I’ve cried it hasn’t been okay. I don’t know how I came up with the categories of okay to cry versus not okay to cry, but at last I felt like I could finally break down. I think at first she was taken off guard, like, “Oh, shit. What do I do now?” But she performed perfectly. She said quietly, “I’m sorry you’ve had to be so strong for so long.” She rubbed my back for at least 15 minutes, not saying anything else. And when my sinuses couldn’t take any more, I stopped. And I felt better.

Sometimes I’m ashamed of who I am. I KNOW I’m an excellent mother but I often feel like I’ve failed in every other aspect of my life. I haven’t been a good sister. Or a good daughter. I’ve failed twice at being a wife. I’m highly educated but I’m unemployed and broke as hell. It’s not like I’m just some slack-ass sitting around smoking pot, eating Doritos and watching “Arrested Development” on a constant loop. I know that taking care of my son is priority and I’ll proudly continue to do that. But I feel like everyone says, “Oh, crap. Here comes Sarah. What is she going to need this time?” Logically, I understand that it’s a bunch of baloney. But emotionally, I just can’t wrap my mind around the fact that I’m NOT a failure. It does often suck to be me. And I wish it didn’t. Trust me. I’d love something entirely different.

I don’t want a world of cancer. I want to go back to 2004 when my son wasn’t sick. I wish I could have used my degree long enough to pay for it. I want my daughter to understand that she is beautiful just as she is. And I want to be able to take care of myself and my children by my own means.

And I’d really love to ride on that unicorn.

Pneumonia

I’m kinda sick of my almost-12-year-old kid having all these old people problems: cancer, hearing aids, balding and now pneumonia. I’m waiting for dementia and Alzheimer’s to set in, too, and perhaps a side of gout. Why not turn up the fun to eleven? If you get that reference, well, you rock. Seriously, though. I’m considering getting him a Rascal to cruise around on, complete with a slot in which to carry a bottle of oxygen. If his hair wouldn’t have fallen out so freaking fast, I would have styled it into a comb-over to complete the look.

I really really want to write but I keep jumping the line between being absolutely filled with anger to having the emotional capabilities of someone who’s smoked a big bowl of weed. All I can eek out is a half-hearted “meh.” Then I start all over again with the anger. It’s a hellish merry-go-round. I’m furious that my kid can’t catch a break. But there’s nothing I can do about it so what good will bitching do? Grrrr. Meh. Grrrr. Meh. It’s a freaky kind of bi-polar.

So, here’s what’s been happening. Ben has been inpatient for over a week. He originally came in for neutropenia (low blood counts) which is totally normal after a round of chemo. It happened a little faster than expected, but we knew it would happen. So, he battled some fevers and had a bunch of nausea. A few days later we focused on pulling out his hair, another messed up milestone on this cancer journey. Then a day or two later he couldn’t seem to beat those fevers and his counts just weren’t pulling up. It was apparent that his bone marrow had taken a pretty brutal beating during the course of chemo. The goal all along was to get him out before his birthday, which is Saturday, June 22. We were on track for that. Then, he had to have his port needle changed because it had been in for a whole week. This caused a big fiasco because no one could get a new needle placed. He was poked and re-poked and poked some more, to the point where he was an emotional mess. X-rays showed that there was no plausible reason why the port wasn’t working – it wasn’t cracked. It wasn’t broken. It wasn’t clotted. It just wasn’t cooperating.

Matt was pushing for surgical removal/replacement and I was on board with that plan, too, if they couldn’t get it accessed. My main problem with simply replacing the port was that Ben’s ability to fight infection was super low. If anything happened to cause infection, it could kill Ben. Dr. Greffe felt that giving it one more try would be the best thing to do. I trust him with my whole heart. So, Ben got lots of Ativan (an anti-anxiety drug) and lots of numbing cream before the the final try to access. Rebecca (my new hero) came in and TA-DA! Accessed his port without issue. Turns out that Ben’s port tilts up slightly and they had been trying to put the needle in the wrong place. Rebecca figured it out and she’s now written into my will. Unfortunately, I have nothing of value to give her, but I am totally grateful for her expertise.

Ben was totally traumatized though. He’s usually extremely brave about everything but this event did a number on him. After Rebecca accessed it on the first try he broke down in tears of relief. He’s just been through too much.

So, as the sun does its rotation and pulls us closer to the 22nd, it becomes more and more apparent that we will not be out of here for his birthday. And with today’s development of freaking pneumonia, there’s no way we’ll reach that goal. So, we’ll just do the best we can with what we have. Pop Pop (my step-dad) is here from Ohio, which is awesome. I’m sure we can set up a virtual Mine Craft party and I’ll bring in a cake, so we’ll celebrate to some degree. We’ll make it happen.

As for next week, who knows. He’s supposed to start chemo again on Monday but I have a feeling we’ll still be inpatient. His counts aren’t recovering fast enough to hit him again with another dose of chemo anyway. So, we’ll just play that by ear.

For now, Ben is lying in his hospital bed, one thin leg crossed over the other as he intermittently coughs into a paper towel. He is like a little old man. And if he’s that old, how old does that make me? I’m nothing more than a skeleton. A shell of my former self propped against the wall watching my son suffer through a bunch of bogus crap that cancer keeps throwing at him.

I feel helpless. I’m ready to help my son fight it but it’s so hard to battle such a sneaky adversary. I just never know what that underhanded bastard is going to attack next.

 

Bad Mood Mom

I’m focusing on the wrong things right now. I thinking about a “friend” who let me down – this cancer business was just too much for her so she “gracefully” bowed out of my life. I’m thinking about another person who doesn’t want to subject her children to my son because she doesn’t think they deserve to have their happiness interrupted by knowing someone who might die. These people are so self absorbed. And I want to punch them in the face.

But I have to remember that there are people who don’t even know us who care. People who show up out of nowhere to love us. These other idiots, I just have to let them go. Doesn’t mean that it doesn’t hurt a whole real lot.

And I have to understand that those people willingly cutting themselves off from knowing Ben are the real losers. Ben is so precious. He always has something wonderful to say – except for the occasional tantrum directed at his sister 🙂 He’s a wonderful and loving child. And I truly believe that he could teach those poopy heads a lesson or two about how to treat people. It’s going to be hard to teach him that there are just some people out there who cannot navigate life as well as he can. He would never willingly hurt another person.

I think what pisses me off most is the fact that he probably won’t live as long as these other assholes. This hideous world needs beautiful people like him. And you can tell me all day long about Heaven and what a beautiful place it is and how happy he’ll be and blah, blah, blah. It doesn’t make me feel better. I want to keep him. I can’t do without him. I shouldn’t have to do without him. I don’t want him to leave and I have to wait on this earth with all these assholes until it’s time for me to meet him again in Heaven. If I get to go, that is. And if it exists.

I am so mad today. I am so angry. I hate watching Ben lying there, unable to get out of bed. He’s so tired. So pale. So weak. And knowing that he’s set for another round of chemo in six days that is going to make this all harder for him. He doesn’t deserve this. WHERE ARE YOU, GOD??? WHERE ARE YOU?

Where the hell are You?

 

 

 

 

Dads

Happy Father’s Day to all the good dads out there. Hope you got a burnt waffle in bed, or a macaroni portrait, or a coupon book with certificates “good for…” something you’ll never redeem because you want to keep it forever.

In the third grade, I was running top speed from a boy who was trying to kiss me on the playground. As I was looking over my shoulder to see if he was gaining on me, I tripped over a cement border and went flying through the air. My arms outstretched and air flowing against my toothless grimace as I thought about all the dirty words I wasn’t allowed to verbalize fly through my head in slo-mo. It’s the closest I’ve ever come to being a superhero. A foul-mouthed superhero, but hey. I’ve always thought we haven’t had enough foul-mouthed superheroes. Anyway, I did my best impersonation of Pete Rose (and this was the 70’s, Pete and the Big Red Machine ROCKED!) and slid head first into a truckload of gravel. My first thought was to check and see if the kissy-boy had gained much ground, because after taking a header like that, no WAY was I going to get kissed, too. Apparently, my suitor had stopped in his tracks, along with the rest of the kids on the playground, jaws hanging open with a sole playmate stating something like, “THAT was AWESOME!”

I dusted off my dress and bravely made my way to the teacher on playground duty. She saw me coming, blood trickling down my brow, skinned knees, and a gash in my hand that was full of pebbles and was already bruising. “Oh my GOD! Are you OKAY?” I shook my dazed head yes as she led me into the nurse’s station. Once I was behind closed doors I completely broke down. I’m not sure if it was my injuries or because our school nurse sucked. What I remember of our school nurse leads me to believe that she was just someone’s mom who had extra time to volunteer at the school. I don’t think she had a nursing degree. In fact, my grade school BFF’s brother, Roy, went to her once after a playground accident. He was playing basketball with some friends and someone had a pencil on the court. The pencil ended up entering Roy’s forearm and breaking off. The school nurse had the idea of slapping a bandaid on it and sending him on his way. A day or so later, Roy had emergency surgery to remove what ended up being at least two inches of pencil from his forearm. Yeah, this lady had questionable skills.

Anyway, she dug the rocks out of my hand and sent me home. The cool part about it was that my mom took me to the Dr after the event, and he used butterflies and an entire roll of gauze to cover up my injuries. I felt like a burn victim with my big gauzy hand. It was a delightful bit of attention.

The next day at school we were decorating father’s day cards. The design of the card was made to resemble a suit complete with a tie. I found this funny because living in a rural community like Kirkersville, OH, there were probably very few dads who wore a suit and tie to work. I bet many of them were farmers. Or in the military. Or held jobs like plumber or HVAC or auto mechanic. The suit and tie gig wasn’t really Kirkersville’s scene. As I was making this card, my teacher came over to see if I needed any help. My hand was still heavily bandaged and I was having trouble navigating my crayola to make the color tie that I thought my father might wear to someone’s funeral. My card was more like “Happy Father’s Day. I hope someone you love doesn’t die and you have to buy a tie for the funeral.” I’ve always been a little warped. But I turned down Mrs. Smith’s offer for help because I knew I wouldn’t be giving my dad this card. My dad wasn’t dead. But there was no reason to give him that card. So I colored it knowing that while other kids’ dad’s would be excited, mine would look at me with his dead eyes and just not give a shit. My creative effort was going to land in the trash.

Somewhere along the course of my young life he gave up. I don’t know him that well but I used to REALLY WANT to know him. And, then, somewhere along the course of my life, I’ve given up, too. He has never met my kids. He knows he’s a grandpa and he knows that his grandson has been fighting for his life for nearly 10 years, but for whatever reason, he can’t deal with it. And at this point in my life, he doesn’t deserve to deal with it. I can only imagine how relieved he must be that I’ve finally given up.

My children are now older than I was when my dad left. And I’m always floored by all the things my dad missed out on in my life. I know I’m a pretty cool cat and have some mad parenting skills despite my less-than-stellar role model. And as I laid next to my son in his hospital bed, watching his pulse keep time in his delicate neck, I was overwhelmed with what a gift I have in my children. How much they’ve taught me to feel and to love. And how my life would be nothing without them. And how they’re going to start pulling away from that “embarrassing woman” they call mother because I’m just too weird. But they KNOW I love them. They KNOW they can always depend on me. It won’t always be easy and there will be (and have been) many disappointments along the way. But my priority is to take care of them. To love them no matter how hard it gets. To build them up when everyone else seems to want to tear them down.

They’ll never doubt my love for them. I simply won’t have any part of that.

I do have some great role models in my life, but I’ve found them on my own. I wasn’t born into their families but they accept me as if I were. And somewhere along the way, I’ve learned that family is what you make it. You don’t have to have a pedigree or title to belong. Love is accepting. And sometimes certain blood relatives just can’t do that.

And that’s not my fault.

 

 

 

the meter’s running…

It’s amazing how quickly my butt has adapted to life back in the hospital. I feel completely comfortable in the plastic, semi-reclining chair they’ve outfitted Ben’s room with. It’s almost as if these chairs are filled with memory foam. Seriously. I sat down and it pulled up the files from 2009 and said, “Ah, I remember that butt. That’s the female parental unit of kid #122502.” And then the chair goes on to lament that I’ll be leaving copious amounts of potato chip crumbs littered about. Because that’s what I do in the hospital… sit on my butt and eat potato chips.

So, last you heard from me, I was reveling in a post-17 hour nap while the kids were enjoying some time in Estes Park at Camp Wapiyapi. Yeah. Glad I got my 15 minutes to brag about all the rest I was getting, because later that day, around 5 PM, I received a call from Dr. Bruce at camp. He said that Ben had a fever and I needed to come get him. Actually, he told me to meet him at the hospital in Estes Park, which was a good hour and 45 minutes away from where I was currently sitting on my butt in Aurora. Dr. Bruce said that while Ben was smiling and chatting normally, he seemed to feel a little run down. His companion, Tanna, took him to the nurse’s station where they discovered him to have a temp of 101. That calls for automatic expulsion from camp. ANY fever exhibited and the kid gets kicked out because there are many kids on active therapy at camp. They have low counts, too. It wouldn’t be fair for Ben to spread his potential bugs to anyone else, even though his fever was most likely due to neutropenia (low blood counts).

So, I jumped in the car and took off for Estes Park. I rolled down the windows. I rolled them back up. I adjusted my seat a hundred times. I couldn’t get comfortable. I tried whatever radio station I could land on. Everything grated my nerves. Dear Lord! Where’s a freaking helicopter when you need one? It was going to take me FOREVER to get to my son. So, I went to my fall-back time-passer in the car: The Interview. Here’s how it goes: I pretend like I’m on a talk show. Usually it’s something like Ellen, or Jon Stewart, or Craig Ferguson, or any old talk show host. I rarely make an appearance on Springer or Maury, unless I’m really mad about something. Then, I ask myself questions. Usually the questions revolve around my newly published best-seller and where I found the inspiration for my characters. This time, however, I asked myself a different type of question, like how did I ever find the strength to help my son through his third round with neuroblastoma. So, that’s what I did for nearly two hours.

When I pulled into the parking lot of the teeny Estes Park hospital, it was about 7 PM. I rushed inside to find my kiddo, hoping that I’d just be able to scoop him up and take him back to Aurora. I even brought his dog, Yoshi, along so he could have some company on the way home. But I walked into the ER to find my sweet little boy with a complete look of horror on his face. Apparently, a nurse had just tried to access his port and had been unsuccessful. Now, I’m not a nurse, but these mediports are placed to take away the pain of being constantly poked and prodded. From my understanding, they are pretty user friendly. This nurse had no idea what she was doing. As soon as Ben saw me, the tears started flowing. He reached out to me to grab my hand and kinda whispered that “this nurse doesn’t know what she’s doing.” Now, in her defense, I’m sure she doesn’t see many cancer patients in such a small community, nor are they well equipped to deal with children. If you happen to hit an elk at a high speed on a rural road while not wearing your seatbelt, I bet she’d be your girl. But a pediatric cancer nurse she wasn’t. It was at that point that I was willing to bundle him in a blanket and just take him down the mountain myself. When I voiced this opinion to the ER doc, he said, “No, no, no, no… no.” I hadn’t heard that many no’s in a while. He informed me that Children’s in Denver said to give him some antibiotics, watch him for an hour, then send him down. In an ambulance. Shit. My overactive imagination immediately flew to an oversized meter in the front of the ambulance that was planning to charge $1000 a mile… and we were MANY miles away from Denver. I can drive and hold an emesis basin at the same time. I can even do that on a mountain road. Are you sure I can’t take him myself?

No, no, no, no… no.

Ben continued to throw up a bunch. They tried different drugs. They hooked up some oxygen in case the nausea was exacerbated by the higher altitude. They tried to push fluids. I even sang to him a bit. Nothing helped. He couldn’t rest because he was in pain. His sweet brow furrowed at even the tiniest bit of light or sound, like it was piercing his skull and shooting laser beams into the soft tissue of his brain. The ambulance drivers eventually came and gently loaded him up. By that point, Ben was ignoring everyone. He just wanted to be left alone. I got in my car, allowed Yoshi to sit on my lap, and drove the very expensive route to Denver Children’s.

SPECIAL PROPS: I posted a shout-out about Yoshi on Facebook, and through my friend, Sean, in North Carolina, he found someone in Colorado to watch my dog. Sometimes Facebook makes me cranky, but in times like this, it was such a help. Sean’s Denver friend, Nora, came to rescue Yoshi from an evening of my intermittent checks. I had no idea the evening was going to turn out the way it did or I would have never brought him along for the ride. Thanks, Nora, for meeting me at the ER and thanks, Sean, for helping out from about 2K miles away. Awesome!

Once Yoshi was squared away, I chilled with Bean in the ER. He had a fever. He kept vomiting. He had a headache. He couldn’t sleep. It was clear that his counts had dropped really really fast and was already neutropenic. We weren’t expecting that for at least a week. That’s why we felt okay with sending him to camp. Regardless, Ben was pretty darn sick and would have to be admitted. Around 2 AM, we moved to the oncology floor. We still couldn’t sleep. At one point, Ben was holding my hand and started singing to me. It was one of our special tunes that we sing back and forth to each other, Bob Marley’s “Three Little Birds.” Tears softly rolled down my cheeks as I listened to his sweet but tired voice tell me:

“Don’t worry, about a thing. ‘Cuz every little thing is gonna be alright.”

And he’s right. It will be. None of this was in our plans and it makes for a really crappy entry for next school year’s “What I did over the Summer” essay. But we just have to keep in mind that every little thing is going to be alright. Sometimes it sucks big time though. But soon enough we’ll be on that talk show explaining just how we got through this trial, too.

And I bet it’ll be a hell of a story.

 

Off at camp…

Since learning of Ben’s relapse three weeks ago, it’s been a whirlwind of activity. Surgery. End of school. Chemo. Throwing up. Trips to the hospital. Co-pays. Learning just how bad Matt’s new insurance coverage is. Home nurses reminding us how to administer IV fluids and slow pushes of benadryl. And, of course, the incessant worry. Is Ben okay? Is Madeline okay? Will we be okay? It’s been just a little stressful.

Two days ago, Ben and Madeline left for Camp Wapiyapi. This camp is specifically for cancer kids and their siblings near Estes Park, Colorado. It’s been the goal since Ben relapsed to make sure that he gets to go to camp. It’s something that he truly enjoys and looks forward to every year. During Friday’s chemo infusion, Flori (his nurse practitioner) came in to state her concerns about Ben going to camp. She was worried about his dehydration and the fact that the Topotecan and Cytoxin (or, “Topless Cyclone” as one neuroblastoma family long ago had called it) had made him pretty darn sick. Truly. This chemo cocktail hit him like a ton of bricks. He vomited every ounce of bile available – even depleting his reserves. It was a very long week. Anyway, Flori said that she wanted to get him on IV fluids to boost him up in preparation for camp. His blood counts still looked pretty good so she wasn’t concerned that he’d need platelets or red blood cell transfusions while he was away.

So, Friday night, the Home/Hospital nurse came to show us how to hook Ben up to the pump. He got two bags of IV fluid, which helped quite a bit. Then, his dad took him to the hospital on Saturday morning to get his Neulasta shot that helps stimulate his white blood counts. While at the hospital, Ben broke out in a rash of hives. It was determined that he had become allergic to one of his new meds. After some Benadryl, the hives subsided. He had a restful night and felt strong enough to go to camp Sunday morning. Madeline was nearly manic in counting down what time it was and alerting me to what time we needed to leave in order to make it on time. She was a little like Rain Man wanting to watch Wapner. She was so excited.

When we arrived at camp, everyone was genuinely happy to see that Ben had made it after all. I expressed my concern that Ben still had hives but the nurses seemed to be okay with giving him oral benadryl as needed. Ben’s companion, Tanna, is awesome. I told her that I was slightly concerned with leaving him because he’d just had a really tough week and he was probably going to start losing his hair at any moment. She reassured me that she would be there for whatever he needed and would call me daily with a short update. So far, she’s sent me a couple of pictures reassuring me that Ben is, indeed, having a great time and isn’t feeling poorly at all.

Before the campers paired up with their companions, the leader of the Ben’s team, Austin, gave me a quilt. On that quilt, they had embroidered the lyrics of “Blackbird,” which is the song I always sing to Ben when he’s not feeling well. Of course, I started crying. How did they know the significance of this song? How did they know the comfort it brought both of us over these past nine years of cancer invading our lives? How did these precious people understand that this beautiful act of kindness would put me at ease in leaving my amazing children in their care, even after a trying week of chemo? It was a priceless moment.

Both children seemed thrilled with their companions. Madeline was more than ready for me to leave. Ben was his wonderful self, worrying about how I was doing, because he knew I was having a hard time with leaving them. He said, “Don’t worry, mom. We’re okay.” And, with his advice close to my heart, I left them there.

After spending a little peaceful time in Estes Park (hey, have to drive through Rocky Mountain National Park as long as I’m up there) I came home and slept. And slept. And slept. In fact, I’m still in bed. Two dogs surrounding me and my laptop propped against my legs as I type away. I’ll have to get up eventually, but for now, I’m going to sleep while I’m actually excelling at it. Stay in the groove, right?

Through Tanna’s pictures, I’m reassured that they are, indeed, doing just fine at camp. They look happy. Ben looks healthy. This experience is priceless for them and I’m so grateful they have it. For once, the ever-robbing cancer didn’t alter our perfect plan. Ben gets to be a normal boy. Madeline gets to see that there are other siblings dealing with cancer, too.

And mom gets to sleep.

Other Duties as Assigned

I woke up to the sound of thunder. I wasn’t sure if it was a dream or if it really happened. All I knew was that it was still dark outside, which meant I was being cheated out of some precious sleep. In moving myself from the bed to the couch to watch all the wonderful choices that 3 am television offers I decided to let the dogs out. A soft rain pelted me as I was standing in the doorway in my nightshirt. I live in an apartment complex and usually do not go outside in my night clothes, but I figured if anyone else was up at that hour they’d be as bleary eyed as me and not be too terribly offended by my oversized t-shirt. Fortunately, I saw no one. I just stood there, silently crying, and let the rain hit me as the dogs did their business.

As I came upstairs I heard Ben retching. Again. We’re only two days into this chemo business and it’s hitting him like a ton of bricks. I’ve had several people ask what his treatment plan is, so I guess somewhere along the way I haven’t described this process out loud. I feel like I’ve told everyone so please forgive me if you’ve already heard this information. Ben is receiving chemotherapy every day this week. We go to Children’s in the morning where he receives an infusion of Topotecan and Cytoxin along with lots of hydration and anti-nausea meds. We’ve done two days and have three more to go. This process is outpatient so we go home once his infusion is complete. Puking in the comfort of your own home is more tolerable than the hospital, I guess. Once this week of chemo is finished, he’ll go back to the hospital on Saturday to receive a shot of neupogen, which stimulates his white blood cells to grow. Chemo is famous for knocking down all blood cells – red, white and platelets. You can receive a transfusion of red blood cells and platelets, but white blood cells are another story. And, if you remember your high school science at all, white blood cells are what fights off infection and all that jazz. He needs them. With a compromised immune system, any little bug can make him super sick. So, the neupogen shot is necessary.

Then, on Sunday, he’ll be off to Camp Wapiyapi. This is a camp specifically for cancer kiddos and their siblings. Ben has gone every year since he was six with the exception of the summer of 2009, when he relapsed the first time. He LOVES camp. The doctors feel it’s important to not take this away from him and I agree. Each child has their very own companion and there’s a full medical staff there, who all know about cancer, so I feel okay in letting him go. I’ll be worried the entire time, but I want him to try to have fun. The bummer is that I’ll have to pick him up mid-week to get blood work done here in Denver. The camp is two hours from here, so Wednesday is going to be a loooooong day. Hopefully he won’t need any transfusions so we can get him back to camp as quickly as possible. I’ll do whatever it takes to make him a happy camper.

After this round of chemo, he’ll have 12 days of rest. Then, another round of chemo – same stuff – for another week. Once he’s done with that round of chemo, we’ll harvest some of his stem cells in case the MIBG therapy in Cincinnati becomes an option again. They will also re-scan him after that second round of chemo, so we’ll see if there’s any cancer activity at that time. The outcome of those scans will dictate what we do next.

So, How am I feeling? It’s like I’m sitting in one of those 1950’s scary movies. The type that buzzes your chair when you least expect it or rattles your bones as the monster sneaks closer. There’s no warning when bad things are approaching and it totally catches you by surprise. I wish I could say that there’s an element of fun to the shocks, but there’s not. This sucks. Plain and simple. None of this was in the job description. But some human resources person somewhere is laughing and pointing at the last line of the job description that states: Other Duties as Assigned. Suck it up, mom. This is part of the job whether you want to do it or not.

I’ll do whatever I need to do to care for my children. I will rub Ben’s back as he dry heaves. I will wipe his sweet face afterward. I will carry him through the halls of the hospital when he’s too weak to walk and no one can seem to find a wheelchair. I will snuggle closer when he says “I can do this as long as I have you by my side.” I will cry with frustration when I am rendered helpless in helping the nausea pass. I will comb his hair as the clumps start to fall out. And I will find the strength to calm Madeline from her fears: the fear that her brother might die and the fear that she’s not as important to us as Ben is. But I will not give up. I will not surrender. It’s all part of the job. None of these extra duties are listed. But I’m learning that I possess a talent in getting the messy parts done. I should be awarded a higher rank. I’m thinking I’m at least a Three-Star General at this point.

So, how am I doing? I’m tired already. But I know this is about endurance. I need to pace myself to win this race. Getting over the shock of it all will come soon enough and I’ll be ready to keep on going. I’ll be ready. I have to.

Because this is going to be for the rest of Ben’s life.

Chee-mo

Ben was diagnosed with Stage IV Neuroblastoma when he was 2 1/2. Most kids that age are working on their vocabulary and honing in on those fine motor skills; running, jumping, wreaking havoc, etc. My Ben was not eating, battling chronic fevers, and occasionally limping and collapsing because cancer had eaten multiple holes through his pelvis. Seeing those initial images of what resembled a piece of fabric a moth had gnawed through was probably one of the worst moments for me. That evil lurking in my son and destroying him from the inside out. I was mad that the “monster under the bed” was actually living inside my son and there wasn’t a darn thing I could do about it. Except allow doctors to nearly kill him with copious amounts of chemotherapy.

When we were initially admitted to the hospital, that first week was mostly tests: biopsies, scans, and surgeries. Ben seemed to get sicker that first week as the doctors planned their course of treatment. I want to know who labeled it “treatment?” There’s no “treat” to this. Chemo doesn’t know what it’s killing, it just goes in and kills everything. And from the explanation the doctors gave me, they were getting ready to load my toddler up with an extremely toxic cocktail of multiple types of chemo. I was scared to death. We had no idea how he was going to feel – the “cocktail” that he was going to get was so severe that most adults wouldn’t be able to tolerate it. Try explaining this to a toddler. I wasn’t sure what he’d be able to comprehend and what would simply fly over his head. But, he seemed to grasp it better than I expected. And he nicknamed his harsh treatment “chee-mo.” It somehow made it seem less toxic.

Lots of things have to happen before chemo can be administered. Since Ben hadn’t had it before, he needed lots of pre-meds (for nausea, etc) and lots of hydration. By the time everything was finally put in place and he was ready to receive his cocktail, happy hour was long over. It was midnight on a Friday. All the familiar faces on his treatment team had gone home for the weekend. I was just getting used to the idea that my son was going to be pumped full of poison and here we are – all alone – with a whole new group of people who didn’t know Ben. I didn’t know what to expect. So, as they hooked him up to an ominous looking bag, the nurses went through a lengthy checklist before starting the IV, ensuring that they were administering the right toxins to the correct child. Then, they pushed the button, smiled at me, and left the room. I sat forward in my chair, ready for the fallout. Bedpan beside me. Wet washcloths standing by. Trigger finger on the nurse’s call button, ready for the slightest sign of anything gone awry.

I have no idea how long I sat tensed up like that. All I know is that I woke up later when the beeping machine alerted everyone to the fact that the infusion was complete. Ben was resting peacefully. I heaved a sigh of relief as the nurses unhooked him and changed his chemically loaded diaper. Having chemo sit against a delicate toddler butt is NOT a good idea. He ended up getting the worst rash I’d ever seen. Little did I know that I’d be learning all sorts of crazy things over the next 15 months of Ben’s treatment. Things that simply don’t exist in any parenting book out there.

So, imagine my surprise when my toddler was acting like an actual TODDLER the next morning. Ben had felt so bad for so long that it had become his normal. He learned to live with the pain. He accommodated the cancer because he didn’t understand that living wasn’t supposed to feel that way. He adapted. He dealt with it. He didn’t know life to be any other way. So, when the chemo started killing the bad cells, he felt GREAT! And as the chemo drastically altered how he looked on the outside, it was making his insides all better. Yes, it took away his hair. It made him look really sick to all who would now see him. But, for the first time in his little world, he actually felt good despite his outward appearance. It ended up being a good thing. It ended up saving his life.

So, in three hours he’ll be starting again. And while he doesn’t call it “chee-mo” anymore, hopefully it will still do the same thing it’s supposed to: kill those effing cancer cells. My heart breaks that he’s nearly 12 and still at this. He’s had a normal childhood ripped from him. And now, cancer is threatening to rip his adolescence from him, too. I know I still see him as a toddler sometimes. I’m sure most mothers have those moments from time to time. But this child has spent too much of his life tethered to a bag of chee-mo, grasping for the normalcy that most children are freely given. It pisses me off that he hasn’t been afforded that same luxury. I’m sick of being rendered helpless and having no choice. He deserves so much more.

Keep Ben close to your heart today as he starts his third battle against a relentless beast. A bully who does more than jab at his self-esteem. A habitual criminal hell-bent on taking his sweet, young life. He’s ready to fight and I’m standing right beside him, you stupid jackass. And he’s got an entire army behind him now.

We’ll beat you again.

Case #122502

So, the night before Ben’s surgery I couldn’t sleep. I made a bunch of cinnamon muffins and took them to Ben’s school as soon as they opened just to have something to keep myself occupied. It’s such an odd feeling to look forward to and dread something all at the same time. Of course I don’t want some person slicing into my Ben. But I also don’t want cancer lurking around in there either. So, choose the lesser of two evils, I suppose. Let the slicing begin.

Matt picked me up around 10 so we could check in at 10:45. We were running a little behind but I figured that the surgeons were famous for running behind themselves, what difference would it make? Turns out I was right. Ben’s surgery was scheduled for 12:45 and he went back right around 2:30 ish. It wasn’t our surgeon’s fault, some other doctor was hogging up the OR.

So, the time before surgery, Ben was in fairly good spirits. He played on his phone and harassed his sister (nearly as much as she harassed him). I met a new friend, Talia, who brought flowers and coloring books to the hospital (Thank you!) and talked with a lot of doctors. My friend, Rhonda, came to pick up Madeline so she could have a sleepover with Rhonda’s daughter, Savannah. I knew Mad would be more comfortable hanging out with a friend instead of hanging around a boring old hospital. Rhonda stayed for a little while, which turned out to be so incredibly helpful, because we got a real turd resident who didn’t do a very good job with his bedside manner.

First of all, he kept calling Ben a “case.” I was immediately turned off. He’s my son, NOT a “case,” you piece of pretentious sh*t. Then he came over and started poking on Ben’s neck. Matt and I looked at each other like “What the Hell are you doing?” because it was our understanding that the tumor was behind the collarbone and not palpable. But, sure enough, the insensitive resident was poking at the tumor that was protruding from Ben’s neck. Ben started poking at it and asking “what is that?” The doctor wouldn’t answer. I felt it. Matt felt it. Ben became obsessed with it. We DIDN’T KNOW!! And instead of thinking it was lurking behind something that we couldn’t feel, there it was, on the surface and totally laughing at us. We started asking the resident questions and Matt showed him the copy of the scan we had, which didn’t necessarily dictate that the tumor was in his neck.

I cannot tell you the feeling of failure I had. Here was my poor son, already stressed out as it was, and now this seemed to be a brand new development that we had been kept in the dark about. He was crying. He was scared. All the things I was supposed to be helping him with completely down the drain. And the resident? All he had was “sorry.” I was thinking of punching him in the throat. It probably wouldn’t have hurt him because I punch like a girl, but I so wanted to.

Ben’s surgeon, Dr. Partrick, came in and explained things in a much nicer fashion. And didn’t call Ben a “case.” Matt and I were both able to walk Ben down to the OR because Rhonda was there with Madeline (thank you, thank you, thank you, Rhonda!). Ben cried the whole way back. He held our hands. The brightly lit room was waiting for him and his team of doctors all seemed ready to get on with the procedure. I lifted him up on the table. They gave him some gas and he started to drift off. It took him a while. A small tear rolled down his sweet cheek. I touched his smooth skin, his soft hair, and prayed that they all knew what they were doing with this wonderful boy who was clearly more than a case. I didn’t see that asshole in the OR, which was lucky for him because there were lots of sharp instruments to which I could have done some serious damage.

We kissed Ben goodbye and left. I started bawling as soon as we reached the door. Matt was kind enough to reach out and pat me on the back… the awkwardness of divorce at its finest. I went to the bathroom to try and pull myself together before seeing Madeline again. Rhonda followed me into the bathroom and just held me for a while. It was so hard to see Ben so upset. It was so scary to see a tumor poking out of his neck. This is SO HARD! I cannot explain how freaking hard this is. And how every emotion shoots through me at the speed of light. I can barely keep myself together but when I fail to do it for my son – which is my job – well, I failed. I won’t be getting a bonus this year.

Rhonda and Madeline left. Madeline seemed fine. As soon as they exited the floor, I went back into weepy mode. I cried until Dr. Greffe came and explained that the tumor had always been in that spot. Somewhere along the way Matt and I heard something completely different. Dr. Neville in Kansas City told me that she could not feel the tumor at all. I understand that this was two weeks ago and that cancer is famous for growing, so maybe it had just grown to the size where it was palpable. That explains it, but it certainly doesn’t make me feel better.

So, we retreated to the waiting room to watch for Case #122502’s progress on the gigantic monitor. As other numbers turned from green (intra-op) to pink (post-op), families left the waiting room to collect their children. Matt and I waited and waited. He found something funny on the internet. I stared into space while trying not to fixate on 122502 changing from green to pink. The lights in the waiting room went out. We were the last ones left. Then, Dr. Partrick came out.

He said that the frozen section of Ben’s tumor definitely states there to be cancerous activity. Duh, we knew that already. But, we’ll know more about the specifics of that outcome on Monday. The bone marrow biopsy was also easily completed and the mediport was placed. While Dr. Partrick was just taking out some of the tumor to biopsy, the rest of it just decided to come out.  So, he was able to excise the entire mass. I’m glad of that. The last thing Ben needs is to have something poking out of his neck that he can’t leave alone. And, honestly, I don’t want to see it either. Dr. Partrick said that overall, Ben did well. He’s a great surgeon. I hope that turd resident learns something from him.

Ben woke up quickly from his procedure. He was totally ready to go home. He had some sprite and a slushy without any issue so they let us go home.

Matt dropped me off at the apartment and after kissing Ben goodnight (he was staying with his dad) I truly don’t remember what came next. I know I called a couple of people and ate some doritos. Then I fell asleep. The lights were still on when I woke up this morning. I slept through the entire night for the first time in months.

Matt, Ben and I went to breakfast this morning. Ben looks good. He’s guarded in turning his head and his arm kinda hurts but otherwise he feels really good. He has refused all pain meds (he hates how they make him feel, he’d rather hurt a little than be all whacked out) and seems to be doing fine.

I love that little man. I need that little man. He is such an amazingly wonderful boy. And anyone who refers to him as a case is missing the boat. I understand why they do it. You can’t get attached to everyone. It would make losing them unbearable. But call them a case in private, dipshit. Not to their mom and dad’s face.

I am sincerely grateful to everyone who said prayers for my little #122502. Thank you for the love and support. Thank you for trying to make me laugh. Thank you for caring about my sweet Ben. Thanks for spreading the word and everything else you’ve done. I can feel your love surrounding us, which is so comforting.

Chemo starts bright and early Monday morning… we’ll update then.