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I just ate two slices of Kraft American Cheese and am considering having one more but that would require me to get up and go downstairs to retrieve another piece from the refrigerator. Plus, on my journey to the fridge, I would want to check on the mouse that our cat, Cricket, brought up to the house about an hour ago.

Cricket was playing that horrible “game” that cats engage in to torture mice. She had the mouse cornered and was clearly enjoying the panic the little guy was exhibiting. We wrangled Cricket back into the house and gave the mouse some room to move. While I’m hoping it escaped back into the “wild” of Suburban Aurora, I’m concerned that it dropped some mouse pellets and gave up, which means I’m going to have to dispose of it, which really puts me off getting that third slice of cheese.

However, if the mouse is still alive, I could share a piece of Kraft American cheese with the little fella. After all, I own the cat that brought him great misery, the least I could do would be to give him a bit of cheese. Do they even like American cheese? Cuz the only other sort I have is pepper jack and gruyere. And I’m not giving him the expensive stuff. I don’t care if he is dying. Oh, okay. I do care. And if he asks for it, I’ll give it to him.

I’m stalling. I really don’t want to go down and face a dead mouse by my front porch. Oh, okay. I’m going. I’M GOING!

Dammit. He’s dead. Now I’m feeling very guilty that I didn’t go down for that cheese a bit earlier. Maybe he just needed a teeny-tiny bit of cheese to gain enough strength to keep on going. Make it back to his family and friends. Spin his yarn about his ordeal with the big scary cat named Cricket. He’d move up in the ranks of bravery within his community. Maybe even earn a medal. But instead, he’s found his final resting place here in Southeast Aurora. I fashioned a casket out of a USPS Priority Mail flat rate box cushioned with some paper towels and placed him (gently) in the dumpster.

I’m trying really hard to not feel guilty about it.

Guilt is such a wasteful emotion, isn’t it? I spend so much time feeling bad about things that just are not in my control. And I’m feeling horrible about that little mouse. I know Cricket was just doing her job. Bringing her “present” back to her home shows that she loves us, right? At least, that’s what some crazy New-Age cat whisperer has decided. Until cats can speak for themselves, we have to depend on the experts to decipher the feline’s odd behavior. Meanwhile, I’m going to sulk that I have yet another dirty task added to my list of chores. I am so NOT doing laundry after burying a dead mouse. I will only participate in one grueling chore per day and I’ve reached my limit. So there.

On top of the mouse drama, I’m waiting for Sloan-Kettering to call. Today is the weekly Tuesday Blood Run to see if Ben has maintained his eligibility to receive antibodies. We missed last week’s testing cut off by one hour (thanks to a FedEx flight delay) so we are not in New York this week. There is really no issue with being a week behind, I’m just hoping they have enough beds open so Ben can get the next round over with. I’m anxious. He’s anxious. We’re all anxious and hanging on as best as we can.

It reminds me of a grasshopper I picked up a few days ago while at Sam’s Club. I came out with my treasure trove of bulk items, packed them in the van and buckled in to go pick up Yoshi from his play date. As I was backing out of my parking spot I noticed a giant grass hopper hanging on to my windshield. He was definitely in the way — smack dab in the middle of my line of sight. I briefly considered turning on the wipers to shoo him away but quickly discarded that as cruel. So, I decided to go with it. If he was game, I’d give him a ride.

I was only going a couple of miles down the road but the journey would take us to a different town in a different county. The grasshopper was going to have to change his voting district. Then I wondered what my little green friend was running from? As I accelerated from 30 to 35, he kept hanging on. Was he leaving behind a nagging wife? Reeling from a recent job loss? It was hard to ask through the thick plate glass of the windshield, so I just kept driving. The speedometer crept from 35 to 40. An occasional flap of his leg had me questioning his endurance but I kept climbing nonetheless. 40 to 45. I had reached the speed limit of the new town in the next county and still the little booger hung on. When I came to a stoplight, my new friend flew off to experience his new life.

I admit that I’m a little jealous that he flitted away so breezily. No “thank you” for the ride or even a tip of the hat. Heck, I would have taken a half-hearted salute from my little green buddy. But no. Off he went to find happiness. I really do hope he finds it. And someday comes back to tell me all about it.

Ben and I got back from New York late Saturday evening. It had been a very long and arduous week of antibody therapy so we were both beyond exhausted. Nothing more than sleep was on our immediate agenda.

Sunday morning, Matt loaded up the canoe while the rest of us slept like a bag of rocks. We were eventually coerced into leaving the safe haven of a nice, warm bed by the fact that we’d be going up to Summit County to canoe with our good friend, Gil. Oh, and stop by Krispy Kreme to get some doughnuts before heading to the mountains.

It’s always nice to see Gil. I’ve known him for many years. He and his wife, Susan, retired to Frisco, Colorado in the mid-90’s. They have a beautiful home that offers stupendous views of Buffalo Mountain and the first two peaks of the 10 Mile Range. It’s absolutely breathtaking.

Sure, they have a beautiful home in a prime spot that affords easy access to skiing in the winter and hiking in the summer. That, in itself, is a rare jewel. But to know Gil, well, he is simply an incredible man. He loves having people visit. He loves teaching children (he taught Ben how to ski). He loves nature. He just loves.

And, 30 years ago today, he died.

He was struck by lightning in Ohio 30 years ago while out on a golf course. On the 17th hole. Right in the head. His body was thrown from the golf cart and his clothes were nearly blown off of him. He was dead for about four minutes. Fortunately, the other members of his party were able to perform CPR until help arrived. Gil woke up several days later in the hospital. Once he learned what had happened he figured he had the best excuse in the world to do some crazy, off-the-wall stuff.

His idea of crazy and off-the-wall is to embrace life and all that comes with it. He is no stranger to the trials that life has to offer but he sorts through it with a peace that I sincerely admire. I absolutely love being “grasshopper” to his “Master Po”. I look forward to learning how to love as greatly as he does. I certainly couldn’t have a better earthly teacher.

So, Sunday, Gil showed us an eagle’s nest while we were out canoeing. That, in itself, was pretty darn cool. But when we saw two eagles soaring majestically against the backdrop of mountains, well, that was pretty flippin’ awesome. In all my years of loving nature I’ve never seen eagles in the wild until Sunday. It’s a memory that I will treasure for the rest of my life. At least until I develop Alzheimer’s and lose all my precious memories. 😛

I have quite a lot a precious memories that involve my dear friend, Gil. And had he died 30 years ago it would have been a tragedy for me. Sure, I wouldn’t know what I was missing out on – I was only 12-years-old 30 years ago and didn’t meet Gil until I was 30 – but knowing what I know now my life is “much more better” because Gil has been a part of it. He is such a blessing.

We left a nice day with a dear friend to head back to Denver. When we arrived there was a message waiting for me from a high school friend relaying some horrible information: one of our beloved classmates had died Saturday while on vacation with his family in Michigan. He drowned while swimming.

Andy, or “Andyman” as he was known in Columbus, had died. He was 42. A graduate of WMHS class of ’86. Voted “Most Talkative”, which certainly fit since he was a popular disc jockey for CD 101 in Columbus. He was married to Molly and had three sons, one who was born within this past year. It was shocking and absolutely unbelievable that Andy was gone.

I met Andy when we were six-year-old first graders at Kirkersville Elementary. When I think back on those early memories of Andy I always think of the size disparity between the two of us. I was really short and he was really tall. But once kids move past comparing the physical attributes of one another and learning about what makes a person who they are, well, the word that comes to mind to describe Andy would be “kind”. He was a gentle giant. A kind-hearted soul. He loved the Beatles. He loved to sing. I’m pretty sure he performed at King’s Island one summer as Elvis. Music was his thing. And he made it his life’s work. I’m sure he was living a life he absolutely loved when it was cut short this past Saturday. While I’m terribly sad that Andy is gone I can take some comfort knowing that he loved his life. He lived it to the fullest. Andy made such an incredible impression on his community and he will be sorely missed.

I’m having a hard time finding balance. I know my immediate job is to get Ben through this cancer hooey and Madeline through living in the shadow of Ben’s cancer hooey. Other than that I feel pretty darn unhappy. I’m not a fan of the life I’ve been living and am pretty upset in general with the “Big Man Upstairs”. I am not skating through my quagmire of a life with the grace that I’d like to be showing. Maybe I’m doing okay from an external standpoint, but internally, I’m a big old mess. Like a Seurat painting. Up close it doesn’t look like much but from far away it looks okay. Just don’t get too close to me. I won’t let you anyway.

Grief is getting the best of me. I’m tired of loss. It seems like every celebration is counterattacked by a tremendous setback. And I just can’t find the grace right now to get me through.

Yes, I’m celebrating the fact that my good friend Gil didn’t die 30 years ago today. But I’m stupefied by why Andy, a man that personified love – for his family, his friends, and his life – had to leave so early.

It’s a crazy world. Someone oughta sell tickets.

I’m not feeling overly clever today so nothing is coming to mind as to what I should write about. Hmmm. Let’s look through my “files” and see what we have. Ben is always a sturdy topic. My childhood has always proven to be a treasure trove of crazy antics. And my mind goes at warp speed 24/7 and almost always offers something of interest to talk about. But today?

I got nothin’.

I always loved my creative writing classes. Some days there would be a preassigned topic to write about and other days would be free-form. I usually felt comfortable with either exercise. But today without a preassigned subject to discuss…

I got nothin’.

I’m a bit depressed. Ben is sleeping off his cocktail of dilaudid and fentanyl that he has been getting throughout his antibody infusions. Occasionally he’ll bust out with some random statement, nearly always having to do with a video game. The first day he was pain-med-induced he talked at great length about the video game “Little Big Planet”. I wish I had a recorder to catch his musings. I’m sure he’d get a kick out of what he says when he’s (as he likes to call it) “confused”.

Man. You know what? I got nothin’. I’m tired. Cranky. Pouting. Agitated. Oh! Wait! That reminds me. I have something to talk about but it involves some foul language. So if you’re easily offended or just don’t want to wreck your pristine image of me, stop reading now.

I mean it. Stop now.

Are you sure? Okay, here goes. But understand that I warned you. And you cannot hold it against me. If I had a waiver available I’d make you sign it.

I had my first “verbal exchange” with one of the “Natives” last night. I was pushing Ben along in a wheelchair (it was our very first outing since starting all this antibody hooey) and had entered into a crosswalk. We, as pedestrians, had the white “walking guy” light so I was not jaywalking or trying to squeeze in a quick jaunt across the street while the “red hand” was flashing. I was well within the boundaries of crosswalk etiquette.

About half way into our journey, a fancy black car pulled into the crosswalk. He stopped. There was no one in front of him blocking his way but he stopped. Right in the middle of the crosswalk. He did not have the light. And while I would usually maneuver around such an inconsiderate ding-dong, I had no choice but to say “Hey! You’re blocking the ramp!” The man in the fancy black car gave me a nasty look while he waited for his friend to cross the street and get into the car. Mind you, he could have pulled up a bit. But he refused. He just sat there, staring me down. He could see that I had a wee little man in the wheelchair. A boy without hair. A boy fixated on his Nintendo game. And the jerk in the fancy black car didn’t give a sh*t. I stood in the middle of the crosswalk with an incredulous look on my face. At least I think that’s how I looked. I can’t be sure. So, I wheeled around El Jerko and popped a wheelie to get Ben up on the sidewalk.

I should have let it go but I couldn’t. “Jerk!” I blurted out as I gave him my best look of disgust.

“Yeah? Well, F*CK YOU!” El Jerko screamed at me as I wheeled my cancer-stricken nine-year-old down the street.

That was all it took. I snapped. And I yelled it right back at him. After about five exchanges of the same two words I turned my attention back to pushing Ben down the street. Ben, apparently oblivious (thankfully) to the verbal gunfire between El Jerko and his delicate flower of a mother, didn’t seem to be any worse for wear. I sincerely believe he was too fixated on his game to hear my foul-mouthed shenanigans.

But that Jerk started it.

I shouldn’t have let him draw me in. But I guess I just get upset when a situation that should impart a bit of compassion and a simple act of moving your car a couple of feet in order to get out of the way – I guess I’m just blown away by some people. Rude. Jerk. Whatever that man is so mad about in life, well, he should do some serious reevaluation. And perhaps a bit of yoga.

Personally, I hope he has to spend some time in a wheelchair. If only temporarily.

But here’s the pot calling the kettle black. I’m angry. I want to take it out on someone. I am usually a lot more reserved than what my actions showed last night but that was the final straw. Maybe my calling that man a jerk was his last straw? I have no way of knowing. Maybe he just got dumped. Or his mother never loved him. Or he just lost his job. Or, maybe he was truly just being a jerkasaurus. I will never know.

Regardless, my two words that I yelled at him should have been “LOVE YOU!” instead of my paltry comeback. I’m sure we looked like two idiots on the streets of NY, yelling F*ck you at each other. But maybe we just looked like two Natives. I mean, really. “Eff-you” is probably considered a completely acceptable greeting here in NYC.

And had I been yelling “LOVE YOU” as a retort to his “EFF-YOU”, I may have been taken in for drug activity. Who on earth responds like that except the drug-infused weirdo from Colorado? I guess I shouldn’t beat myself up over it. After all, “When in Rome…” . Ben still loves me and thinks I’m a delicate flower.

But when someone blocks my path and refuses to move, watch the “eff” out.

Having been born in North Carolina I am not a true native of Central Ohio, but since I spent the majority of my formative years 22 miles east of Ohio’s Capital, I know a bit about cows. The family of one of my very best friends in grade school ran a dairy farm. I experienced my first kiss playing spin-the-bottle in a barn where cows were present (and I’m not talking about any of my former classmates). We accidentally set some cows free at an infamous middle-school slumber party. And while I personally cannot cop to any cow-tipping adventures, I’m sure many of my schoolmates could.

Did you realize that millions of dollars are being spent to study the emissions from burping cows? It’s said that a herd of 200 cows turns out the annual equivalent amount of methane to the energy produced by a family car being driven 111,850 miles. And you thought their piles of poo were enormous! Cows are leaving a carbon footprint the size of Texas. But at least we’re figuring this stuff out, right? I’m so glad to know that all these research dollars are being spent so wisely. I mean, cows burping. Who woulda thought THAT was contributing to the destruction of our world as we know it?

Really, though. I don’t give a pile of cow poop.

I’m stunned by what people care about these days. I know we all have our “causes” and things that we’re passionate about. And before my son was diagnosed with neuroblastoma I cared about things like cows. And animal testing. I was against it. I used to be a member of PETA back in my idealistic days as a social worker. I just wanted the world to be a happy place. I wanted to take care of all the schizophrenics AND stop P&G from shaving the eyeballs of bunnies to ensure their razors worked. (I know! Gross!)

The irony of it all is the simple fact that my son is lying on a bed in a world renowned cancer center receiving a by-product of a mouse. These mouse antibodies hopefully hold the key to what will save my son’s life. It’s painful. It’s horrible. It’s hell. And I’m sure his screaming puts out more emissions than a herd of 200 camels (this is worse than 200 cows because camels have two stomachs). So, sorry about your luck, little mouse. We need your antibodies to save my son. I do believe I would have been against this back in my idealistic phase (and before I had children), but now? Screw it. I’ll kill the mouse myself in order to save my son. I mean, if I can drive a hypodermic needle into my son’s leg over and over again I can certainly kill a mouse. I’ve really grown in my ability to perform ridiculously disgusting feats.

So, I think that we should drop all funding for figuring out emissions from cows belching because, as I type this, I am listening to room after room of children screaming in pain. Crying for relief. Pleading for God to help them. And before my son was put into a pain-med-induced sleep, he was one of the children who was screaming. Let’s focus our research money on getting these kids WELL! We know that it can be done. It takes determination and some strong support of people with BIG money. We saw it happen with AIDS research. Billions of dollars and tons of testing later, people can live normal lives with an HIV diagnosis. Aren’t these kids worth the same dedication? Isn’t my son worth it? There is nothing as heart wrenching as watching what I’ve seen over the past week. Trying to comfort my son as he screamed “STOP THE PAIN!” and “WHY, GOD?” and “I HATE NEW YORK!” I told him that once we’re done with all this antibody hooey we ain’t never coming back to this crazy town.

It’s maddening that while I plead for my son’s life I learn that millions of dollars are being spent on measuring cow emissions. And here’s another one: The National Institute on Alcohol Abuse and Alcoholism invested $102,000 in discovering if sunfish who drink tequila are more aggressive than sunfish who drink gin. Really? I just want to inject these idiots with mouse antibodies and deny them pain meds. I know. Not very PETA-friendly of me.

All of this is a big pile of cow poop. I’m tired of watching my son trudge through it and I’m tired of trying to clean up after it. Stupid cow. I’m just so tired. So very tired.

It’s only the second day of antibody therapy and already my brain is complete Jello. When I turn my head I can actually feel the gelatinous mass quiver inside my cranial cavity. I wonder if my Jello-brain is a pretty, decorative molded shape or perhaps a delicious flavor? Doubtful. It’s more likely that my Jello-brain consists of unflavored gelatin and is very watery – like it’s been left in the back of the fridge for too long.

I ain’t joking. My brain is Jello.

Yesterday absolutely sucked. I always have some anxiety revolving around anything “new” in Ben’s therapy and despite talking with folks about how their kids handled this 3F8 antibody, there’s just no knowing how your kid will react. I was prepared for pain – and Ben was prepared for pain – we just didn’t realize how much. And for how long. I thought that once the infusion stopped that the pain would stop. How wrong I was.

So. I snuggled on the bed with the Bean when they told me the 3F8 infusion had begun. I wanted to be right there. Ready and waiting. Able to soothe as soon as he needed me to. As we were lying there he said, “Mom, my tummy hurts.” I started rubbing around his belly button when he said, “No, it’s much lower… aaaaaaaaaaaarrrrghhhhhhhhhhhhh!” The last bit of this sentence not only scared the crap out of me but had Ben shooting up off the bed and screaming at the top of his lungs.  He flopped like a fish out of water, gasping for relief but not able to find it.

I’ve never seen – or heard – anything like it, let alone deal with the fact that it was coming from my son. I got off the bed and started trying to figure out where his pain was and what I could do to fix it. He cried that his lower back and bottom hurt. The nurses asked if he wanted ice or heat for the pain. He cried “Heat!”. We popped heat packs and started applying them to his back. That’s when he screeched “No! Ice!” We dropped the heat packs like hot potatoes and started popping ice packs. I didn’t know how these packs worked initially, which frustrated me to no end, but once the nurse showed me her “grab and twist” method, I quickly became an expert. Popping the ice/heat packs was the only fun I had all day. It kinda gives you the same satisfaction that popping bubble wrap offers.

Ben screamed. A lot. He cried for someone to help him, which made me feel ridiculously inept. The nurses and I rode out his storm of pain until he fell into a pain-med-induced sleep. We held the ice packs on his back until we were sure he was asleep. Then I fell into the chair, dumbfounded by what had just happened. I thought that since the infusion was over that the pain would subside. That’s when Ben started experiencing neuropathy in his feet.

I was sitting in the chair watching him when his eyes opened and tried to fix on me. I leaned forward and said his name, trying to be reassuring that I was right there and ready to do all I could. It was as if he was looking through me toward something far behind me. The look on his face was something that I will never be able to explain. His eyes kept widening. His brow furrowed. His mouth drew thin. It was like he was seeing the scariest thing on the face of this earth but he wasn’t looking at anything at all. Then he began to shake his hands like he was trying to swat at a bug. Like he was trying to discourage a bee from stinging him. And then he started crying hysterically that his feet hurt beyond belief.

This neuropathy is not a super-common side effect. At least, they don’t pre-medicate everyone for it. It can happen. It’s been known to happen. But it’s not something that happens to all kiddos on this 3F8. Of course, it happened to Ben. The pain kept waking him up and the only thing that would help was putting heat and pressure on his feet. And that wasn’t even really all that helpful.

He cried so much yesterday. He pleaded for God to help him. I pleaded for God to help him. I cried so much yesterday.

We finally left the hospital around 5:30. I think. It may have been closer to 6 pm. I don’t know. As we were leaving, our nurse said “see you tomorrow” to which I answered “I’m not bringing him back.” She chuckled. I gave a half-hearted chuckle and kept walking, pushing my passed-out Bean in a wheelchair.

Once we got back to The Ronald I put him in bed. He couldn’t get comfortable and would intermittently yell out that he needed his feet massaged. I popped some more hot packs and wrapped ace bandages around his feet to keep the heat focused on where his pain was.

It was right before he fell asleep that he needed help going to the bathroom. I carried him in and helped him stand since the pain meds had made him very unstable. He was very shaky and didn’t want to put any weight on his feet. As we stood there he said “Mom, I’m ready to meet God now. I wish it were my time.”

Finally, about 1 AM, he fell into a sound sleep. I stayed up an hour or so later, shell shocked. What had just happened? And how will we make it through the next day? And the next day? Four more days of this horrible pain. And that’s just the first round.

At that moment, I realized the day I believed couldn’t get much worse had completely broken my heart.

I despise nearly every sort of pie with the exception of pecan. Pecan pie is deeee-licious. I think it also has the highest caloric content as far as pie goes and that (more than likely) contributes to my interest in this particular flavor. And I’ve always wondered about the pronunciation of “pecan”. Is it proper to say “Pee-kan” or “Pi-kahn”? I usually say “Pee-kan”, probably because that’s how they say it in the South. And being 1/2 Southern myself, well, I can go back and forth between pee-kan and pi-kahn if I want to. It’s my inalienable right as a half-breed. I’ll say pee-kan in my Southern circles (as well as in my Western “cowboy” circles) and pi-kahn while in the company of Yankees.

I googled pecans before writing this post. There are quite a few sites that offered information but I was most enamored with www.ilovepecans.org. It gives you all the information you would ever need about pecans, including recipes that makes use of pecans all year long (it’s not just for Christmas anymore). You might be interested to know that it would take 11,684 pecans stacked end to end to reach the top of the Empire State Building here in New York City. I know what I’ll be doing later today.

Speaking of nuts, that adequately describes my mental state right now. As I try to focus on getting this post written before Ben starts his first round of 3F8 antibody, I’m listening to the kiddo beside us scream out in pain. He must be about three years old. It’s his first day of antibody treatment, too. He speaks Spanish so I can’t understand his words, but his screams translate very well. He’s inconsolable. His parents are scrambling to soothe him. The “dance therapist” is attempting to distract him. The nurses are medicating. But the fact remains: this therapy sucks. And we’re next. Ben is zoned out, watching Scooby Doo, trying to avoid reacting to the screaming boy.

He ain’t no dummy. He knows what’s coming.

And here we go. They’re pushing the first bit of 3F8 into him right now.

Pray. Please.

“Yay! Ben! We don’t have to come back here for an entire YEAR!!!” I grabbed his small hand in mine as we walked down the hall away from the room where he had just completed his MIBG scan. It had been six months since his prior scan and report of “no evidence of disease”. Dr. Greffe told us at our semi-annual appointment that if these scans came back clean that we would move to annual scans. My system heaved a huge sigh of relief as we moved further away from the world of neuroblastoma.

A whole year, Ben! We don’t have to come back here for an entire year. I smiled as I held that little hand in mine, all but skipping with joy down the hall. Ben, being a newly minted eight-year-old, didn’t really seem to care about the news I was basking in. He had nearly forgotten about  the chemo, surgeries, radiation, bone marrow transplant, and the months of painful antibodies and huge horse pills he learned to swallow at the tender age of three. This grueling therapy had robbed him of being a toddler but it had kept him in remission for four years. Dr. Greffe said that it was uncommon to relapse this far out. Dr. Greffe said that we’d be moving to annual scans. Dr. Greffe said…

Dr. Greffe said he’d call later with results.

I was laying on my stomach on the bed, letting “scanxiety” release from my body. This is a phenomenon I can’t explain, this “scanxiety”. Those in our “position” know that scan time is something that is inevitable and you always breathe a sigh of relief when it’s over and everything’s clean, but there’s always that anxiety that flows through the patient, the caregiver, family and friends that there might be something lurking. Something set on destruction and completely willing to explode and ruin life as you know it. I always worry during scan time. It can’t be helped. This is my baby we’re talking about, after all. My precious, wonderful, sweet son who was fighting with his sister downstairs as I released my “scanxiety” in the best way I knew how: by doing absolutely nothing.

Becky in radiology said that his scan looked good. Becky loves all the neuroblastoma kids. She has a bulletin board filled with pictures of neuroblastoma kiddos she’s known over the years, and Ben’s kindergarten and first grade picture were posted up there on her “board of fame”. Ben was the kid she pointed out to other neuroblastoma families as they dealt with their own “scanxiety”. I never heard her say it, but I can only imagine her words, “See this boy here? Four years he’s been clean. There is hope. Kids do survive this horrible disease and Ben is one of them.” Becky said his scan looked clean. She knows how we as parents suffer through scan time. She told us with as much authority as she had that his MIBG scan looked good. Becky said “See you next year, Ben!”. Becky said….

The phone rang shaking me out of my attempt to clear my mind. Caller ID said it was Dr. Greffe. I picked up the phone despite the cacophony of the ongoing battle between Ben and Madeline downstairs. I expected that the phone call would be very short. All he was going to say was that everything looked good and that he’d see us in a year. Right? But Dr. Greffe said…

“Sarah, the CT scan shows that Ben has a mass behind his heart.”

That metallic taste that goes hand in hand with a rush of adrenaline overpowered my mouth. Stunting my ability to speak. Stunning every sense I have. My mind swirled with question after question. It reached and tried to grab hold of all the positive things that Dr. Greffe had said. That Becky had said. That statistics had said. What had they said? What was he saying? Are you telling me that Ben’s cancer is back? BUT YOU SAID…!

I heard what he was saying. Behind Ben’s beautiful, wonderful, kind heart, there was a mass. Something growing. Something that didn’t belong there. Something trying to destroy my son. Wait. What are you saying?

Without fully realizing what I was doing, Matt came up behind me and put his hand on my back. I guess I hadn’t said anything at all since my answer of “hello”. Matt must have realized that I was speaking with the hospital. While I hadn’t made any audible statements my actions said it all. I had sprung up out of bed, stumbled to the railing of the stairs and was holding on for dear life. I was doubled over. I can only imagine what my facial expression was.

“What are they saying?” he whispered. He took the phone from me and turned on the speaker. Since I couldn’t say anything, Matt announced that he had switched the phone to speaker and needed him to start the conversation over again.

Dr. Greffe said. He said. He said that there was a mass behind Ben’s heart. He had already taken the liberty of scheduling an emergency biopsy for the following day. While they couldn’t confirm that the mass was definitely neuroblastoma, they knew it was something that needed to come out right away. Matt and I sat on the floor in Madeline’s room. Surrounded by pink walls. A fluffy canopy bed. Bright. Girly. Pretty. We faced each other. The phone was laying on its back spewing terrible awful hideous information at us in the midst of Madeline’s sugary sweet room.

We remained silent as we listened to Dr. Greffe give us details of what needed to happen the next day. No eating after midnight. Check in at 0:00 hours. Surgeon will go in through Ben’s back. Plan to stay overnight. We’ll do everything we can. I’m sorry.

Dr. Greffe said he was sorry.

The ice cream cake we got as a celebratory “clean scan” reward sat melting on the counter as I went downstairs to do what had to come next.

I said, “Ben, please come to me.” I sat down on the couch and motioned for Ben to come over. Ben thought he was in trouble for fighting with Madeline. He started to defend his actions as I enclosed him in my arms. Holding him. Hugging him. Getting ready to prepare him for what was coming next.

I said. My God. What do I say? How do I tell this wonderful, sweet boy about what comes tomorrow? After all, I just finished telling him that we didn’t have to go back to that hospital for a whole year. I’m his mom! He trusted me! Dr. Greffe said. Becky said. I said.

What do I say?

“Ben. The hospital just called. They said your scans showed a mass behind your heart.” My arms encircled the small frame of his body. His weight a slight 40 pounds on my lap. My eyes staring into his big brown ones as I told him of what was going to come next. I watched as his brow furrowed. I could see the questions swirling in his head as he processed the news of what I was telling him. More pain. More scars. More yuck. But I wasn’t prepared for what he asked. What Ben said.

“Mom, am I going to die?”

And as my mind scrambled for what to say to my beautiful eight-year-old son, my mouth took over.

“Ben, I sure hope not. We don’t know what’s going to happen but I can promise you that we’ll fight with all we have and go wherever we need to go and do all we need to do to get you through this. I will never leave your side.”

That’s what I said.

And one year later, here we are. We’re still fighting. We’re going where we need to go. And I’m never leaving his side.

We’ll get through this kiddo. And that’s all I have to say.

I’m so glad we’re not in NYC for Meteor Watch day. The light pollution in the city is so intense and would definitely mar our ability to catch a glimpse of any shooting stars. It makes me wonder if city dwellers are ever interested in heading out for a nature trek to see some of the more spectacular sights? Yes, NYC is filled with amazing man-made spectacles but there’s nothing like laying on your back under a blanket of thick stars and watching a star or two streak across the sky. I guess Times Square does have that Naked Cowboy – maybe that’s enough “streaking” for the average New Yorker? I really can’t say.

I just had a flashback from my days as a camp counselor. Now, while most of you would have imagined me as a counselor for children with special needs, I chose to spend two summers as a counselor for the over-privileged from the Tri-State area. Most of the children I worked with were from incredibly wealthy families. They were shipped off to camp for the entire summer and had to endure the following: blistering heat without A/C, no nanny to entertain them, no housekeeping staff, no personal chef, onslaughts of Japanese beetles, swimming in a lake instead of a temperature controlled private pool, and counselors who grew up poor.

Anyway, my bunk of kids were really very good despite their slightly-spoiled upbringing. My girls worked hard to pass their daily bunk inspection and nearly always won the “cleanest bunk award”. I made a deal with them that if they won this award “x-amount of times” then we could walk to the nearest pizza place (two miles away). This appeared to be incentive enough as my girls busted their behinds to win the weekly award.

The day arrived where their consistent victories would finally be rewarded. Armed with water, sunscreen and good footwear, we set out on our two-mile walk to get our pizza. About 1/2 way into it the girls started to lose their enthusiasm. The country air rung with cries of “Are we there yet?” and “My feet hurt!” I tried to make the walk in the country an adventure, but they weren’t buying it. Then, lo and behold, there was an animal up ahead in the dirt road. I immediately knew what it was since I’d grown up in a land fraught with agriculture. The girls, however, were terrified. As we drew closer, the animal strutted a bit quicker, its head darting back and forth making his bright red comb dance. Yes. It was a rooster. The girls completely lost their minds as we drew closer to the bizarre and exotic bird. And as we were passing by, the rooster seemed to sense their trepidation and exacerbated the situation by stirring up a little dust with his erratic movements. Screams sliced through the air. I explained that it was merely a rooster and he really wouldn’t hurt them at all. My girls had never seen such a thing. A rooster? What on earth is THAT?

It makes me wonder what their Fisher Price “See and Say” taught them? I have a feeling that while my version of the ‘See and Say” spouted phrases like “The Rooster says “COCKADOODLEDOO!”, that their “See and Say” stated “The taxi says “HONNNNKKK!’” or “The pedestrian says “I’m walking here!”.

Anyway, the girls were completely traumatized, which kicked up their speed a notch or two. We arrived at the pizza place in record time – covered with dust, dying of hunger, and a bit shaken from the encounter with the creepy farm animal – only to find out that the pizza place was closed. CLOSED? REALLY? This was back in the late 80’s, before everyone had a cell phone, so we were forced to walk all the way back. The girls were completely deflated. And overly cautious that a band of vicious roosters were gathering and waiting for us to pass through again.

We were able to make it back to the camp in time to enjoy the offerings of the cafeteria but the girls just didn’t have it in them to eat grilled cheese with their choice of tomato or tuna in the middle. I promised them that I would make good on the pizza. And while they didn’t find that particularly encouraging, I threw in that I would have it delivered directly to the camp and that we would have a massive pizza party and stay up late and toilet paper other bunks and have a silly string fight with the boy’s bunk of their choice.

I’m hoping that nearly 20 years later they’ve finally forgiven me. And maybe they think of me as they’re teaching their children about roosters. I can only hope.

Back to stars, Ben was recently featured on the Parents.com website for the story on Icing Smiles, the amazing non-profit that made Ben’s incredible Yoshi birthday cake happen. Check it out here: http://www.parents.com/blogs/goodyblog/2010/06/amazing-cakes-for-ailing-kids/ Ain’t he cute? He LOVED his cake and was sad to dismantle it. He wanted to keep it! I know his birthday wasn’t the best scenario, but so many people pulled together to make it special. I hope he’ll remember it fondly despite being away from home and going through un-fun cancer stuff.

Ben is also featured on Icing Smiles website at www.icingsmiles.org.

We’re back in Colorado now. We had a nice birthday party for Ben thanks to the Hoskins/Skogen family. They allowed us to come over and piggy back off a party they had earlier in the day. They had rented a bouncy house for their afternoon function so we were able to use it for Ben’s evening party. Mike Garcia, our dear friend from the Outback, came and brought lots of chicken and ribs. Ben played with his friends (and his new puppy, Yoshi). He had a great time.

This week we’re taking it easy. We finally heard from Ben’s treatment team yesterday and we are definitely going to start antibody therapy soon. So, we’ll start his round of shots here in Denver  in preparation for him to receive the mouse antibodies in NYC. Madeline is most likely going to travel along this time since she is officially finished with Kindergarten. She’s excited to go to the big city.

I have a feeling that as she matures she’ll be more interested in the Stars on Broadway instead of the stars in the sky. But I sincerely hope she has an appreciation for the beautiful world God made for her.

And won’t be too terrified of roosters.

No, it’s not propofol awareness day, but thanks to Michael Jackson’s untimely passing (one year ago today) the drug “propofol” has entered the realm of common knowledge. I’ve known about propofol since 2004 thanks to stupid cancer. It’s the drug of choice for anesthetizing pediatric oncology patients. Once administered, they’re out like a light. Once the infusion is stopped, the recovery time is fairly speedy. It appears to be a good drug unless you’re using it illegally for a sleep aid.

Ben’s getting some propofol in about one hour. While he used to have propofol for nearly every scan and procedure, he’s graduated to needing it only when bone marrow biopsies are performed. He does not need it for scans and radiation since he’s able to remain still, but for the biopsy, it’s a very painful procedure and he needs to be anesthetized. A bone marrow biopsy requires the doctor to take a corkscrew looking device and drill into his hips to take a cross-section of bone. Most hospitals take bone samples just from the back (or the butt dimples) but here at MSKCC they take samples from the butt dimples AND the front of the hips. In other words, it’s a “four point” bone marrow biopsy. They just want to ensure that there’s absolutely NO disease in the bone marrow and this four point procedure is more comprehensive than the “butt dimple only” procedure. Would you want to be awake for that? Me, neither. Bring on the propofol.

During Ben’s initial treatment for neuroblastoma we lived in Ohio. During one of Ben’s routine scans he was hooked up to propofol so he would remain still. Remember, he was only two-and-a-half when he was initially diagnosed. While Ben is very compliant it’s ridiculous to ask such a small child to remain completely still for an hour long scan.

The propofol administration is fairly labor intensive. It requires an Emergency Room doctor to be present to administer the propofol and remain for the duration of the scan to ensure stable vital signs. I believe that the administration of propofol was fairly routine. Routine enough that the doctors and radiology technicians were discussing plans for their weekend while going through the motions of Ben’s scan. Hey. I get it. It’s just a job to them. They have a life outside of their work even if we didn’t have much of a life outside of neuroblastoma.

Listening to them throughout the course of Ben’s treatment was sometimes very difficult. I’d hear about their children having trouble at school. I’d hear about their car trouble. I’d hear about bad dates. I’d hear about normal, everyday life. Admittedly, it was very difficult to hear about their children. “Joey made three goals during last week’s soccer game” or “Heather made honor roll this semester”. Hearing about their normalcy alienated me in a way that I couldn’t explain. And it wasn’t like they were telling ME about their children’s achievements, they were talking to their co-workers while I was in the room watching my son get scanned for possible cancer activity. Of course, their normalcy would often throw me into a tailspin as I scrambled to celebrate my sick child’s achievements. Yay! Ben scored the best possible score on his MIBG scan. Ben has a steady girlfriend despite the statistics that long-term pediatric cancer survivors live out the remainder of their lives in their parent’s basement playing video games. My son excels at chemotherapy. He always wakes up .10 seconds faster than the average propofol recipient. Excellent!

So, when the staff in radiology began talking about their plans for the weekend I tried to tune them out a little bit and just focus on Ben. Watching him breath. Making sure he didn’t move which would cause them to have to start the scan over. Praying. Hoping. Sometimes silently crying. And then the discussion in the room turned to concerts. The ER doctor started talking about seeing Bruce Springsteen in concert and how it was the greatest show he’s ever seen. Myself, I’m not a big fan of The Boss. Well, the main exception being the song “Candy’s Room”. But otherwise, I can’t see myself forking out ridiculous amounts of money to go to one of his shows, especially waiting to hear the one song of his I enjoy, which never really hit the mainstream and most likely would not be played in concert. What’s the point? That’s right. No point at all.

A random voice shook me out of my thoughts to tell me that Ben’s scan was nearly over. I breathed a small sigh of relief and continued to watch him sleep. Then I watched as the numbers on Ben’s monitor started dropping. Oxygen levels bottoming out. The alarm starting it’s piercing screech of something being drastically wrong. The numbers kept dropping. The conversation about Bruce Springsteen was halted as the staff started to swiftly move around Ben. I was pushed backwards by the staff, pinned between the wall and the ER doctor as they tried to wake up my son.

The numbers on the monitor kept dropping. I could hear my thoughts swirling in my head. I was crying out “what’s happening” in my mind but nothing audible was coming out of my mouth. I was pinned. Watching my son’s lips turn blue. Watching his face turn blue. Watching the life drain from him.

DO SOMETHING. (why can’t I say it out loud?) DO SOMETHING! DO SOMETHING!!!!!

Someone placed a mask over my son’s nose and mouth and started working the bag to get oxygen to him. No improvement.

Oh, God. DO SOMETHING DO SOMETHING DO SOMETHING. I’m watching my son die! His life is leaving him right before my eyes. My last moments with him are of me pinned up against the wall while the ER doc tries to revive him. Screaming monitors. Staff scrambling around him. This was supposed to be a routine scan! Stupid cancer. Stupid Bruce Springsteen. COME BACK TO ME, BEN! YOU CANNOT LEAVE ME!

Much too slowly the monitor started to record a strengthening pulse-ox. Ben was breathing again on his own and the color was coming back to his face. His lips were still tinged with blue when I cut through the wall of staff and leaned down to kiss his precious lips. I picked him up and started singing to him as he struggled to regain stability. Adrenaline cut through each muscle that had been taut with tension and I started to violently shake. I was suddenly exhausted. Thoroughly relieved. A mixture of tears streamed down my face releasing my fear and embracing my joy.

You’re still with me. You’re still here. You’re going to be okay.

I think I’m going to throw up.

I learned later – much later – that the ER doc had administered too much propofol and that’s what caused Ben to crash. As the scan was winding down, instead of stopping the propofol he pushed the rest of what was in Ben’s tubing straight through to Ben’s little system. Ben was overloaded. And it almost killed him in the process.

I blame Bruce Springsteen.

Admittedly, I get anxious whenever Ben’s scans come around, especially when he has to be sedated. And today is one of those days. Any minute now they’re coming to get him. Hook him up to propofol. Put him to sleep. Drill into his back. Drill into his hips. Causing him pain in the process of looking for signs of neuroblastoma, the stupid beast that is trying to kill him.

So my recommendation is “DON’T try propofol at home”. Leave the propofol administration to professionals, especially those who are competent and paying attention to what they’re doing.

And especially aren’t fans of Bruce Springsteen.

I believe that today is one of many “take your dog to work” days available throughout the calendar year, so don’t despair that you’re just now finding out when the day is nearly over.

I’ve never worked anywhere that would have allowed me to bring my dog to work. I guess it’s because I’ve always worked customer service or food industry type jobs. Or maybe it’s because the dogs I’ve had have always been ill-mannered. Being a former HR person, I’ve often wondered if an employee can file a worker’s comp claim for a dog bite from someone else’s dog on “take your dog to work” day? These are the questions that haunt me at night. Seriously.

Ben got a doggie for his birthday. My parents came to visit Ben in NYC over the weekend and while they were here Ben wrangled them into a visit at “our” pet store. The end of this particular visit resulted in a new dog for The Bean. He is over the moon for this dog! “Yoshi” is part Havanese and part Shih Tzu, or a whole “Havasoo”. The dog is truly adorable. I’d add a photo here but I can’t get my computer to cooperate. Pictures to come.

So, Ben turned NINE yesterday. I woke up early in the morning and snuggled up next to him, just breathing him in as he peacefully slept. The newly minted peach fuzz on his head soft against my cheek. Nine. I am able to remember very clearly when I turned nine. And while I’m hoping that Ben forgets a lot of this treatment hooey down the road I sincerely hope he recalls the efforts by so many to ensure that he had a very happy birthday. He was really concerned about having to spend his birthday in New York City, away from family and friends, and enduring yucky treatment. I think, though, that he had a pretty great day.

I put the word out to my friends on facebook to send Ben a birthday card to the Ronald McDonald House. Boy, did my friends come through! As of today, Ben has received around 250 cards from people all over the United States and a few from exotic locations, like Barbados and Australia. The walls in his room are covered with cards. The outpouring of love has been phenomenal and I am sincerely grateful.

I started this post earlier today and now it’s, well, it’s actually a new day. It’s after midnight and while I should be writing about whatever holiday is on June 24th, I feel that I need to finish what I started.

I’m having a bad day. Bad evening. Bad year. I’m so over it. So over people. So over cancer. So over all the uncertainty of absolutely every little thing.

Forget it. My head is swimming and I can’t focus. Ben has scans tomorrow and I must have a huge case of “scanxiety”. I can’t make heads or tails of anything. Be back later.