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.

An average nine-year-old boy. That’s all he wants to be.

Before the meltdown, Madeline and I were in the bedroom practicing our “faces” — she wants to be an actress when she grows up — so we were perfecting our look of “excited anticipation” in the mirror when I heard the bedroom door shut. I knew that Ben was trying to be subtle in getting my attention. Madeline and I weren’t being loud — we were laughing a bit — but we weren’t in hysterics or anything. He didn’t want to hear our laughter so he shut the door. I opened my door just in time to see his bedroom door close. I took that as a sure sign of trouble.

I peeked into his room to see him laying on his bed facing the wall. He didn’t respond when I said his name so I went over and sat down on the bed. He was crying. He told me he wanted to get some things off his chest. I motioned for him to crawl into my lap, making sure I was giving him the option to come to me instead of making him feel like a baby. This age is so delicate. He is unbelievably mature for such a young boy and it’s hard to not treat him like a baby, especially given all he’s been through. When he willingly crawled onto my lap, I cuddled and rocked him. And let him cry.

In between his sobs he said he wanted to get some things off his chest. Not knowing what was coming my way I held him close and told him he could tell me anything. He told me that he’s tired of his sister. I countered that being tired of a sibling is fairly normal. And then he told me that he was concerned about something “bad” he saw on the Internet two years ago. He had watched a video on YouTube that had some bad words in it. I told him that if it’s been over a year then he should just let that go. And then he started crying harder as he let the real questions that were plaguing him spew forth.

“Mom, I’m just so tired. When is this going to be over? Why can’t I just be a normal kid? Why is there no cure for this cancer?” Then he started talking about how he wished he could be in heaven instead of living through this hell.

I rubbed his back and rocked him on my lap. I was at a loss as to what I should say. I have no answers. I don’t know why he’s been given this road to travel. I just don’t know.

So, I cried, too, and admitted that I don’t have any answers as to why he has to go through this hooey. But I did ask him what we could do to make him feel more normal. He told me that maybe it was time for him to go back to school. My initial reaction was to say no, but I stopped myself and said we would bring it up with his teacher tomorrow. His antibody therapy is on more of a routine now and his immune system isn’t compromised like it was during his chemotherapy, but there’s still so much that he goes through on a daily basis. I don’t know if a full day of school is the right thing. But we’ll certainly ask. If it’s going to make him feel a bit more normal then maybe it’s a start to getting my pookie pie back on track.

So, would you be surprised to hear that I’m fighting a massive bought of depression? I smashed my foot at the Ronald McDonald House two weeks ago and finally went to the doctor about it a few days ago. Fortunately, it’s not broken, but I’m supposed to stay off of it (yeah, right) and give it time to heal. While I was in my doctor’s office, I asked for a different antidepressant because what I’m currently taking isn’t working. My doctor said, “Sarah, I’m afraid that nothing will work. Your life just sucks that bad.” Now, I love my doctor. We have an excellent rapport and she has been incredibly kind to me over the years. But when she made this statement my jaw dropped. I felt like I had won some sort of lifetime achievement award, and while I’ve always wanted to be a winner, this is not what I had in mind. “And the “crappiest life” award goes to… ”

Wow. I am so incredibly tired. How long, Lord? When will this be over?

Okay, back on track. This day of sevens is important for a  young woman named “Zhi Nu” because – according to ancient Chinese legend – today is the day she gets to see her beloved husband. They only get to see each other once a year thanks to her incredibly overbearing and intrusive mother. See story below:

The Goddess of Heaven had seven beautiful, young daughters. The seven daughters came down to earth. They decided to bathe in a pristine river, leaving their clothes on the shore. Along came a cow herder named “Niu Lang”.  He took their clothes to see what they would do. The daughters decided that the youngest, and most beautiful,  named Zhi Nü should go out of the water and recover their clothes. Because Niu Lang saw her naked, they had to get married. They fell madly in love, and shared several years of marital bliss.

Finally, her mother became irritated by her absence from Heaven, and ordered her to return. Seeing how much Zhi Nü missed her husband, the Goddess of Heaven brought the couple back together. Ultimately, Zhi Nü was allowed to visit her husband, Niu Lang, just once a year. The annual reunion occurs on the 7th day of the 7th month of the Lunar Calendar.

Man. How’s that for a conjugal visit? I think there would be a lot less divorce in the world if we could only see our spouses once a year. But, then again, there is that horrible mother-in-law factor. That, in itself, might drive them apart permanently. Oy.

We’re sitting in the hospital with Ben waiting for his bone marrow biopsy. He just had his exam, had his port accessed and is currently playing a Nintendo game (I know! Shocking!). I’m so thankful for handheld electronics. Better “coping” through technology, right? As I look around this pediatric oncology unit I see gazillions of dollars worth of laptops, iPads, cell phones, Nintendos… it makes me wonder how anyone got through these long days at the hospital before portable technology? I guess we’d be forced to communicate with each other. And really, who wants to do that? It’s just so much easier to delve into our electronic devices.

Distractions. We all need them. I wonder what Zhi Nu did with all of her downtime? Did she cut out little hearts and paste them around the walls of her palace? Did she write in her journal? Practice her married name? I can see it now – Mrs. Zhi Nu-Lang. Or Mr. and Mrs. Niu Lang, Herder of Cows and Princess of Heaven. Maybe the cow herder was progressive enough to take her last name? That would make him Prince Niu Nu-Lang. I wonder if he kept his day job of being a cow herder after marrying into royalty? Did she send him support checks each month? And did he ever give up the nasty habit of stealing fair maidens’ clothes from riverbanks? That could be a point of contention in any marriage.

This endless barrage of bizarre questions floating through my head is what I do to get through my stress-laden downtime.

In fact, my Bean just got sedated and his parents were banished to the land of waiting. I better end this post now before I get really weird.

So, however you choose to spend this Chinese Valentine’s Day, whether it’s by celebrating love, or just eating some great Chinese food, be sure to make the most of it.

“Rub! Rub! Rub! Give it all you got! Don’t stop! Whatever you do, DON’T STOP!” These demands were given with the excitement and energy of a coach watching his team play in a tension-filled championship. His enthusiasm worked. His “team” gave it all we had. I have to admit, I like hearing him in “coach mode” instead of screaming out in intense pain – like he did on Monday. While both outlets keep his oxygen saturation at 100% (which is what we want) I prefer the “give it all you got” method as opposed to the “Why, Lord, why?” that he was screaming on Monday.

Monday. Ugh. Mondays are the worst. The first day of 3F8 is the longest because he has to get his port accessed, blood drawn, labs completed, height and weight assessed, be seen by the staff and go over all the questions of what went on during our three weeks off therapy. THEN the 3F8 is ordered (based on weight), THEN the pharmacy has to make it (I imagine people in lab coats stuck in a small cubicle with bunson burners and rows of test tubes wringing out mice to fill little baggies with mouse essence – I know, that’s weird). THEN it comes back to the ninth floor which starts the pre-medication process and eventual infusion into the kiddos. The staff has to space this out because it’s horrific enough to have a couple of kids screaming at the top of their lungs at one time, it’s quite another to have an entire floor of kids shooting through the roof in pain all at once. Also, since the kids have been off therapy for a couple of weeks, their bodies haven’t built up any tolerance to the antibodies. Once Ben’s infusion began on Monday, he started his screams of “Why, Lord, Why?” and “Make it stop!” and “I hate this hospital!” He screamed so loud for so long that his vocal cords began to sound like he was screaming in two separate pitches at the same time. And at a very high frequency. Then, once the pain subsided, he fell into a dilaudid-fueled sleep. Mondays usually result in no earlier than a late afternoon discharge from the clinic followed by an all-afternoon and evening snooze-fest intertwined with occasional bouts of mind-numbing pain. Good times.

The days post-Monday, however, have been a bit easier this time around. The pain is still horrific during infusion but Ben uses his amazing coaching skills to give us direction. He knows where it hurts and knows what he wants us to do to alleviate the pain. I couldn’t imagine him going through this therapy when he was, say, three years old. The little guys aren’t as verbally astute, which makes the process a bit more difficult to navigate. I hate that Ben has to go through this at all (of course), but there are a couple of benefits of him being a bit older this time around. I’m glad he can tell us what to do.

Ben is currently sleeping off today’s infusion. Once he wakes we’ll head back to the Ronald and hopefully he’ll feel up to doing something fun tonight or tomorrow. We’ll be in NYC over the weekend because he has a bone marrow biopsy on Monday. Don’t worry, nothing was found, this biopsy is just part of the normal 3F8 protocol. Then, in between round two and three of antibodies, Ben has to take accutane. Getting this drug is a big, crazy ordeal. He had to be enrolled in the “iPledge” program. This means he has to “pledge” to not get pregnant during this piece of his therapy since Accutane is famous for causing severe birth defects. This is funny on so many levels (not the “birth defect” point, but the “Ben getting pregnant” point). First of all, he’s male. Secondly, he’s got lots of girlfriends but I am confident that my nine-year-old isn’t “active” in that capacity. Third, there is no way his “swimmers” survived the Hiroshima and Nagasaki we’ve had to put his body through. In other words, he’s reproductively challenged. Big time. But we still made him hold up his hand and pledge not to procreate during his Accutane therapy. Actually, I’m making that up. All I had to do was sign a release that stated I understood the dangers. Man. If I had a dollar for every time I had to sign something like that regarding my son….

Well, I should go. Ben’s lips are swollen (allergic reactions like swelling, itching, and hives are common with this 3F8 stuff). Admittedly, he’s still incredibly adorable given the over-sized lips. I think I’ll go steal a kiss.

Have a great weekend, everyone. And as Ben says, remember to “give it all you got.”

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.

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 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.

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.

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 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.