Ben says “It’s ‘Oh, Really?’ Day”

Yep. You heard correctly. The Bean has stated that today is “Oh, Really?” Day. You should feel free to pose this question, dripping with sarcasm, to anyone you want throughout the day.

Cashier #1: “Would you like to open a ____ charge card today? You’ll save 10% on today’s purchase.”

You: (with raised eyebrow and slightly ‘smirky’ upturn on your lips) “Oh, really?”

As I typed this, I was surprised to learn that “smirky” isn’t recognized as a word. Oh, really?

So. What’s going on here in Central Colorado? Well, Madeline is taking singing lessons, gymnastics, a tap/ballet combo class and karate. She didn’t know what she truly wanted to do (her ultimate goal is to be an actress) so she’s getting a taste of a few things in order to make an informed decision. I think she’s going to hang on to gymnastics and singing, and mom will just have to understand – although it will be with a broken heart – that she is not going to hang on to tap. That’s okay. (Oh, really?)

Ben is taking swimming lessons and karate. The goal here is to build up his strength. He’s such a tiny little guy. Being 20 pounds heavier than he currently is would only put him in the bottom 1/2 of what he should be at this age. In other words, he’s not even on the growth chart at this phase of his sweet little life. He wants to go back to school as soon as possible and while there are some real reservations to allowing this (his having ADD being the biggest concern) I’m really concerned that all the boys will harass him for being tiny and having so many physical limitations. I can’t help it. I’m his mom. And I’d hate to have to go beat up a bunch of 4th graders for making fun of my kid. Just kidding. They could probably beat me up, too.

So, Ben and I are sitting in bed at 1 PM on a sunny Thursday afternoon. Despite all the school and extra curricular activities going on, we had nothing major on the calendar for today. Ben did his schoolwork already and Madeline gets out in a couple of hours, so I caught up on some sleep and now Ben and I are  just hanging out in bed playing on our respective laptops. We occasionally look at one another and say “Oh, Really?” for no apparent reason. Yoshi is eating something off the floor, probably a Lego or a Polly Pocket, and looking at me as if to say “are you going to take this from me or what?” All I can give him is my “Oh, Really” look. It sounds like we’re completely content. For now, we are.

As far as Ben’s treatment stuff goes, we just had his blood draw yesterday at Denver Children’s to send off to MSKCC to see if he’s HAMA positive or negative. We want negative at this point so he can continue to receive the antibodies. If he’s negative, we’ll go to NYC mid-October. This will be his 4th round. He’ll have the whole workup of scans after he’s done with his week of treatment so our stay in NYC will be extended for several days after he’s done with antibodies. Hopefully we can squeeze in a bit of fun over the weekend while he’s feeling well.

Oh yeah! That reminds me! On Saturday, October 16th, Ben and I will be participating in an event called “Extra Life”. It is a 24 hour marathon of playing video games and the money we raise will go to our local Children’s Miracle Network. Ben is REALLY excited about this because, well, he LOVES to play video games (Oh, Really?) and 24 hours of gaming will not be difficult for him. I’m playing, too. I’ve got my Chuzzle and Bejeweled Blitz to keep me occupied. I might even try to play some old school Pac Man or Space Invaders. We have set our fundraising goal at $1,000 and we’re already 1/2 way there. We’re asking our donors to pledge a dollar an hour ($24.00) but any amount would be great. Please follow the link below and show us some LOVE!

https://www.hospitalshelpingkids.org/ExtraLife/m.aspx?i=198893F5AB7DA77C4

This is Ben’s personalized donation page. Chances are very high that we’ll be playing from the Ronald McDonald House in NYC. I’ve called ahead to see if we can play in the living room at the house for the entirety of the marathon. That way we can invite actual miracle children to join in the fun. So, you won’t be just supporting us, you’ll be supporting ALL the kids staying at the Ronald.

That being said, today is the last day of September, which means today is the last day of Childhood Cancer Awareness month. I hope you told all your friends about a wonderful young man you know and how he’s fighting very hard for his life. It’s hard to not get disgruntled that the Gold Ribbon doesn’t get the love and support that the Pink Ribbon does. I’m not saying that breast cancer is not important, it is. I want to see it eradicated completely along with every other cancer. But people don’t want to think about kids getting cancer. I’ve actually heard from others that it’s just too sad to think about. YES! It is! But ignoring it won’t make it go away. Don’t look away, people. Don’t forget about these children. They are fighting so hard. Living less-than-satisfactory lives. Filled with pain. Ignoring it just hurts them more.

Yes. Really.

Sunday morning. Madeline had a sleepover at a friend’s house and Ben is curled up next to me still sleeping. His head is snuggled up against me and his contented breathing is tickling the fine hair on my arm. So peaceful. I hope he’s dreaming of something lovely.

It seems I can’t sleep peacefully anymore. I’m plagued with nightmares and restlessness. This morning I fell out of bed after thrashing about. I have one of those four poster beds that has a much longer drop than the standard sleeping arrangement so falling out of my bed gives me the ability to “catch air” rather than just rolling out and onto the floor. Add to that the fact that I have a small two-step “ladder” that really is more of an aesthetic piece of furniture rather than a functional one. And, yes, I fell right on top of that before hitting the floor. Maybe my next bed should be a Japanese Zen model? Sleeping closer to the floor might serve me a  lot better.

You might be thinking that I should try Ambien? The answer is no. I’ve tried it before with less-than-satisfactory results. While I did sleep like the dead it also encouraged me to eat an entire box of Little Debbie’s Swiss Cake Rolls. I don’t remember eating them at all. All that was left was the carnage of plastic wrappers and the little white “beds” the cakes rest on while in their packaging. That was strike one. Then there was the night that Ben had to go to the emergency room due to chemotherapy-related fevers. Matt tried to wake me without success. I woke up the next morning not knowing where Matt and Ben were only to learn that Ben had been admitted to the hospital with neutropenia. Strike two. I didn’t give Ambien the opportunity to earn a third strike. Solid sleep is just not worth the extra padding to my hips and thighs. Oh, okay, I’m not that shallow (well, maybe just a little). But it certainly isn’t worth sleeping through emergency situations. That’s the kind of stuff that ends up in obituaries.

Sarah D Phillips Washburn Bone Brewer died unexpectedly last Sunday. She was 42 years old. Firefighters broke into her home after it was set ablaze by an unknown arsonist (her ex-husband is being held for questioning). When the firefighters arrived at her address, the fire was contained to the porch. They broke in and tried to wake her up but she just rolled over onto a box of Twinkies and mumbled “No, you can’t have one.” After attempting a sternum rub and sticking straight pins into her feet, the firefighters decided to carry her out. She grabbed onto one of the four posters of her bed and refused to go with them, believing the poster was a giant ho-ho. By then, the blaze had grown to massive proportions and the firefighters had no choice but to leave her there. Her last words were something about a barbeque. She leaves behind two lovely children, a lot of abandoned pets, several ex-husbands (all being sought for questioning), a massive supply of Ambien, a smattering of anti-depressants, and a horrifically large student loan for an unused Master’s degree. No services since she’s already been cremated and carried off in the twister that came through southeast Aurora shortly after her house burned down. Donations can be made to her account through Sallie Mae.

Ambien is going to have to add “possible death in a house fire” to their already lengthy list of potential side-effects. Aren’t those commercials for new drugs getting crazy? We just recently got cable at our house and I think there’s a channel that is dedicated solely to advertising for new medications. At least, I’m seeing a lot more of these ads than I used to, so I’m assuming that there’s an actual drug channel. Watching cable may dull your senses, encourage you to eat more, cause your child to want EVERY toy from every single ad, get sucked into the Lifetime Television for Women, or lend to thoughts of getting away with murder thanks to “Snapped” on the Oxygen channel (I do love that show). We are such a litigious society that EVERYTHING has to come with a warning label these days. It’s kinda crazy.

I was sitting my doctor’s office on Friday morning doing some serious people watching. I ended up waiting for an hour to see my doctor. While that might set most people off, I honestly didn’t mind. Waiting is what I seem to do very well. I wonder if i could get paid to be an official wait person? Not in the service industry, mind you, but at Christmas time or when the new iPhone comes out… I can wait all day long. It’s not that I’m patient, it’s just that my life has been reduced to waiting. I’m conditioned just like one of Pavlov’s dogs. I smell the antiseptic of a hospital or a doctor’s office and I’m automatically stunned into “wait” mode. So, next time you’re anticipating something coming out, perhaps the latest DVD of the Twilight installment, you’ll call me up, supply me with a truckload of alcohol wipes to sniff while I’m in line, and pay me minimum wage to wait in line for you. Please. I implore you. I need a job.

Okay, back to waiting at the doctor’s office. While sitting in the waiting room, I read through all the leaflets encouraging me to “ask your doctor if ______ is right for you”. After discarding the leaflets for Singulair and Viagra, I turned to people watching. There were TONS of pharmaceutical reps coming into the office and heading back to the examination area, which led me to believe that whatever they had in their little black rolling cases were the reason that I was being put off for an entire hour. Using my time well, I decided to study these reps in great detail. My observations led me to believe that these reps are all the same. They were dressed well, usually in a black suit. The women wore high heels. They were physically fit. Attractive. Smiling. Friendly. In fact, they (eerily) had the same voice. If I didn’t know better, I would have thought that it was the same person coming in over and over again. They asked the same questions. They had the same black bag on rollers. It was like a new version of Hitler Youth. Or maybe they all just take the same drug? I then began to wonder what that drug would be called and what the side effects might be.

Ask your doctor if “Sunshine” is right for you. Sunshine may cause you to be unnaturally cheery, have a strong desire to blow sunshine up other people’s nether regions, buy black rolling bags in which to carry your Sunshine, and talk in a lyrical sunshiny voice. Tell your doctor if you experience shortness of breath, have BM’s that mysteriously smell like Skittles, or have thoughts of driving the heel of your black patent leather pump into the forehead of anyone who refuses you more “Sunshine”.

And this, my friends, is what I do with the time I spend waiting. My brain is flooded with odd, yet entertaining, thoughts. It’s not uncommon for me to burst out with a staccato of laughter that emulates a machine gun (to which I pretend that I’m on my cell phone talking with someone else and have a reason for bursting out into laughter). I hope I’ve brought a smile to you on this beautiful Sunday. If you didn’t find this at least mildly entertaining you might want to ask your doctor if “Sarah” is right for you.

MSKCC – round three

We’re checked in at the hospital and waiting for round three of Ben’s 3F8 antibody therapy to start. His port has been accessed. He’s laying on the bed playing his DSi and trying to tune out what he knows the day will be bringing him.

I am more than a little tense, myself. I hate the first day of 3F8. The last two cycles have proven that Monday is absolutely horrendous so I’m not looking forward to this. The pain. The screaming. The tears. And that’s just me. Ben will be doing these things, too. Times two. Or ten.

HermeyArriving on the 9th floor of Memorial Sloan Kettering Cancer Center breaks my heart. When I walk onto this unit I’m overwhelmed with how many children are suffering. Kids without hair. Kids without limbs. Missing eyes. Ports. Stents. Wigs. Prosthetics. Honestly, it’s a lot like the land of Misfit Toys (you know what I’m talking about if you’ve ever seen the stop animation special “Rudolph the Red Nose Reindeer”).

Look! There’s Missing Toe Sally (she’s supposed to be a Twinkle Toes Sally)! Or Sammy Stitched-A-Lot (he’s supposed to be Sammy Kicks-A-Lot)! I wonder what happens if you pull the string on that one? Oh, wait. That’s an IV. Nevermind.

The Abominable Snowmonster ('Bumble')These kids just want to be normal. Instead, they’ve been banished to the Land of Cancerous Kids. And instead of the Abominable Snowman who tormented Rudolph, Hermey, and Yukon Cornelius, these kids are tortured by a beast named Cancer. It’s not fair. Ridiculously unfair.

In my mind, though, I’m hopeful that these kids go on to live out their lives and fulfill every dream they’ve ever imagined. May One-Legged Stevie go on to be a soccer star and Missing-Eye Molly go on to be crowned a beauty queen.  And to the kids who make fun of them for being different in any way, well, there’s just no stopping that, I suppose. Kids are cruel. But may the adults in their lives encourage an understanding that just because my kid is different from their “normal” kid it doesn’t mean it’s okay to make fun of them. My kid is battling for his life. He’s got enough to deal with without someone calling him “shorty” or making fun of all his scars.

Some people might see him as a “misfit” but I see a true hero. He’s endured ridiculous pain and summoned the strength to take down this nasty beast. Twice. This floor at MSKCC is full of heroes. I pray that they all skate through adolescence with their self-esteem intact.

And someday, these special kiddos will be the boss of all those bullies they’ve had to put up with. I have no doubt about that.

National Childhood Cancer Awareness Month

I was wearing a pink turtleneck and tan pants on the day that my world was ripped out from under me.

It was February 19, 2004. A Thursday. I was at work doing what I like to call “employee relations”, which was really just a lengthy run of “cube-hopping” to chat with my co-workers (one of the few joys of being in Human Resources). People kept asking about my two-and-a-half year old son, Ben, because he had been through the wringer recently with a variety of bugs. We also chatted about the very soon-to-be-born child I was carrying. There was speculation as to if my baby was a boy or a girl since I was not one to find out the gender before birth. I like surprises. At least “good” surprises.

I remember walking back to the office and being greeted with “you need to call Matt right away”. I knew immediately that something was wrong with Ben. We had been averaging two visits a week to Urgent Care or to his pediatrician for the past several months with no real answers. He had been misdiagnosed repeatedly with everything from a simple virus to constipation to a hip infection. In their defense, he was exhibiting very basic symptoms like a runny nose, chronic low grade fever, and general lethargy. He was two-and-a-half. His vocabulary wasn’t much beyond “owie” and “mommy”. He couldn’t exactly tell us what was going on.

When we were at church the previous Sunday, Ben was running around with some other children. They were running up the steps to the stage. Ben stopped at the bottom of the steps and collapsed. His little legs just stopped working. Matt and I saw the entire thing play out. We looked at each other and we both knew that something was really wrong.

The next week was spent seeking out specialists. Matt took Ben to a bone specialist near Children’s Hospital that Thursday morning. The bone specialist told Matt to take Ben to the emergency room at Children’s right away. That’s when Matt called me. Unfortunately, I was out cube-hopping. And when I was greeted with “call Matt right away”, it was like someone scratched a needle across a record. Everything stopped. My world was silent. I grabbed my bag and coat as the tears started to fall. I walked through the lobby of my workplace knowing that I would never be returning as an employee. I just knew in my heart that it was over. I knew that the next phase of my life was going to be horrendous.

My hands gripped the wheel of my beloved blue Subaru as I drove toward the hospital downtown. I had stopped off at the house to grab some clothes, diapers and toys. I assumed we’d be staying overnight but since Ben hadn’t been formally seen by an ER doc yet I didn’t know what to expect. My mind kept drifting toward my Ben dying. I begged it not to go there. I tried drowning out my thoughts to mind-numbing loud music but nothing helped. I kept seeing my son. So small. So sweet. His beautiful red hair against a white silk pillow. Everything so quiet. A toy train placed in his hands that were folded across his chest. Dressed in pajamas as if he were just going to sleep. Saying goodnight to him as the funeral director closed the lid on my son’s life. On my life. He doesn’t like the dark! He doesn’t like to sleep alone! You can’t take him away from me!

I couldn’t stop until I walked into the emergency room and saw him lying on Matt’s chest. So small. So sweet. His broken fever surrounding him in a large circle of sweat on Matt’s shirt. He’s okay. For now, he’s okay. I all but ran to him. Scooping my sleeping baby off Matt’s chest and snuggling him against my pink turtleneck. Holding him. Kissing him. Praying that he was going to make it through whatever this craziness was.

We were in that terribly crowded waiting room for hours. We watched as children with broken bones were fixed and kids with gashes were stitched. Then the rest of us were helped. The children with fevers and coughs were finally called into triage rooms. We told the intake nurse of all of his current issues. The leg issue was the most pressing, we thought. Of course, when the doctor came to visit us Ben was not limping at all. In fact, he was quite chipper by that point. And while I was glad to see him responding well and not in obvious pain, I was concerned that they were just going to send us home again.

More time passed. The one benefit of being stuck in that triage room was having our own personal tv. And Thursday night meant “The Apprentice”. It was the first (and best) season, after all. That Omarosa was one evil troll! Matt and I delved into watching the cat fights on tv as Ben played with his toy trains.

Hours later, a radiology tech came for us. They were going to do an ultrasound on Ben’s pelvis to see if there was something going on that would be causing him to limp. We tried to cope with the stress of the testing – even going as far as to ask if she could tell us the gender of the baby. She wasn’t really up for jokes. We had no idea at the time, but what she was seeing on Ben’s ultrasound was very disturbing. She couldn’t tell us since she didn’t have the authority, but she must have known that the two ding-dongs who were trying to make jokes with her were getting ready to receive the shock of their lives.

Ben was admitted right away. They placed him on the infectious disease unit, which gave me cause to think it was still some sort of bone infection. I was feeling a bit more secure since I was able to see Ben laugh and play with his toys. When we got to our room, a nurse instructed me to put him in a little yellow hospital gown and place him in this gigantic cage that they considered to be a “crib”. It wasn’t like any crib I’d ever seen. I understand the high metal bars were for safety reasons, but it was a hideous looking contraption. I was reluctant to place him in this gizmo, and he wasn’t too happy to be in it himself. The nurses started an IV on him, which broke my heart. He cried and screamed at being poked and there was nothing I could do to stop the pain. They placed a splint on his arm to keep him from ripping the IV out and then left the room. Once I got Ben to calm down a bit, I placed him in the “crib” and started to change into my night gown. Right as I was stripping off my pink turtleneck, a doctor burst into the room and started asking questions. I tried desperately to cover my eight-month-pregnant self as he began his barrage of questions, apparently oblivious to my 1/2 dressed state. As I pulled my nightgown over my head, I answered his questions. I asked some of my own. It appeared that Ben had some slight bruising on his eyelids that I had never noticed before. The doctor made note of it in his chart. Then he asked, “How long has he been this pale?” I was stupefied. See, we are redheads. Freckles and everything. We burst into flames when we’re out in the sun. I stammered a bit and told him “He’s always been this pale. We’re pale people.” Is paleness some exotic disease? I had no idea. I would have totally used that excuse to skip school had I known that it was a symptom of something terrible. He noted “pale” in Ben’s chart and left the room.

So, Ben and I were left to fend for ourselves in our plastic lined room on the infectious disease unit. I walked over to check on my sleeping baby in the giant cage and noticed that he was surrounded by a pool of blood. I frantically pressed the nurses button screaming that there was blood everywhere and within seconds a team of nurses were surrounding his bed. His IV had come out and blood had leaked everywhere. It was a terrifying sight. After they reinserted his IV I scooped him up and held him close. The nurses changed his sheets and then motioned that I could place Ben back in the crib. I refused. I sat in a chair holding Ben all night long as he tried to sleep between the all-too frequent blood draws and blood pressure checks they kept inflicting on him. It was a long night.

I can’t even begin to tell you how many tests were run on my son over the next couple of days. When I saw Ben’s pediatrician in the hallway at the hospital I knew we were about to get some terrible news. I had no idea just how bad it was going to be.

It was very official. They came in and sat down. Matt and I were standing. My parents were in the room, too. My mom was holding Ben. He was asleep in her arms. Then they told us. Horrible. Hateful. Evil words.

Neuroblastoma. Stage IV. Unfavorable tumor. High risk for relapse. Disease has invaded every bit of his body. It was in his bones. In his bone marrow. In his skull. His little pelvis had holes in it from where the cancer had eaten through. We finally had the answer as to why he was having trouble walking.

Then the doctors told us that we’d be moving to the oncology floor later that day. Ben would start chemo very soon. He’d have six rounds of high dose chemo, surgeries to remove his primary tumor, a bone marrow transplant, 12 rounds of radiation therapy, and six months of oral chemo/antibody therapy. The next fifteen months of our lives were written out for us. We were on a mission to save our Ben from the beast named Neuroblastoma.

I’ve heard people ask a couple of times if doing all of that to him was worth it. Should we put him through all that we’ve been putting him through? Shouldn’t we let him go and give him to God? Well, call me selfish, but I kinda want to keep my son. He made it through that first leg of treatment and, yes, unfortunately he relapsed last year, so we’re back in the fight. But there is no way in hell that I’m giving up. There is hope. I have hope. Ben has hope. Yes, we are tired. But I believe that fighting for his life is the right thing to do. So, there.

Along the way we’ve met so many others. All of them battled. Some won. Others didn’t. But they have all changed our lives in some way. I hate cancer. I especially hate how it has tried to destroy my son’s life. Twice. But while I truly hate this disease it has made me a better person. A stronger person. A compassionate friend. And one heck of a mother.

I do wish that cancer would get cancer and die. But since that doesn’t seem to be on cancer’s “to-do” list any time soon, I’m asking you to wear a gold ribbon this month in support of all the brave kiddos who have battled cancer. And please pray that my Bean wins his fight.