Author: Sarah Brewer

I am so mad and frustrated that I cannot focus enough to write coherently. Maybe it’s because I’m not sleeping well. Maybe it’s because I’m feeling more than overwhelmed. I can hear somebody saying, “Sarah, Don’t Sweat the Small Stuff (and it’s all small stuff)” Oh yeah? Well, come over here and say that to my face. I’ll knock your lights out.

Now, I haven’t ever really punched anyone except one person in self-defense a LONG time ago. And that was a pretty girly punch. I have dreams where I’m punching things to protect something I love but it nearly always feels like I’m punching oatmeal. Not very satisfying. I have always thought that places like Children’s Hospital and the Ronald McDonald House really missed the boat on not putting a punching bag in some dark corner for parents to beat the crap out of. It would be so cathartic. And, if you figured out a way to generate power from parents’ anger, you could keep whole societies in electricity for years, much like “Monster’s Inc.” using children’s screams for energy. See what my mind does when it gets no rest? You thought I was weird before? You ain’t seen nothing yet. I’m sure it’s just going to get more entertaining in future months.

My sleep pattern over the last few years has been less than stellar but it has gotten way worse over the last couple of weeks. Duh. I wonder why? I’ve always been a worrier despite the fact that worrying usually just makes an average situation worse. I used to wake up in the middle of the night worrying about stupid stuff that really wasn’t that important and while I’m glad that I’ve gotten over worrying about stupid stuff I know have something larger to worry about. Despite my attempts to self-soothe I just cannot find a way around not worrying about Ben’s illness. If it would go away, I’d have a much easier time not worrying about it. But it won’t do that. It just won’t go away.

Several years ago, someone gave me a copy of that stupid book, “Don’t Sweat the Small Stuff (and it’s all small stuff)” That book was an International Best Seller. I remember reading it and thinking that it was baloney. It made me mad. There might be degrees of “small stuff to not worry about” but this does not fall into any of those categories. Oh, I understand the need to have hope and look on the bright side and all that jazz, but honestly? Don’t worry about this? I’d like to see you try. My children are my everything. I’m mad that this is happening to them. And, happening to me. No mother should ever have to go through this. Ever.

Aaaaaarrrgh! I was hoping that writing would make it better. Would make me relax enough to maybe drift back to sleep. But I’m so jumbled and erratic and tired and scared and angry. I cannot grab onto any one emotion long enough to work through it. FRICK! I just want to punch something. Although I understand that it would be a very girly punch and probably not very cathartic at all.

I’ve heard it all before so there are no words to soothe me at this time. I’m not asking for anyone to make me feel better. At least I’m not today. I think I kinda need to be angry for a while. Besides, it’ll gear me up for the fight that’s about to begin, the fight of getting Ben well. And I know I recently told all of you to not be afraid to talk to me – that I just wanted your love and support – but I would highly recommend to NOT tell me today that God won’t give me more than I can handle. While that might be true, those words will NOT be helpful.

Not today.

I hate when I just sit here on the couch completely incapable of doing anything at all. I don’t have the kids today and I just bet that I’m going to sit here all day and do nothing. I’m completely overwhelmed.

It looks like it’s going to be a beautiful day outside… I could go do something. I could take a drive or hang out at the pool or continue to sit here on the couch and do nothing. For whatever reason, I cannot get motivated unless I absolutely HAVE to do something. And since I know I have to rally to help Ben fight cancer again, I guess there’s nothing wrong with taking a day to sit on my couch. Alright, I confess. ANOTHER day. I’ve already had a few days of doing nothing since learning of his relapse on the 16th.

Okay, here’s something that’s bothering me. Someone posted a picture on Facebook of their dead child being taken away in what I assume to be a funeral home’s van. This child died of cancer. I understand that there must be immeasurable grief. I cannot imagine what they must be going through. My heart aches for them and screams at the unfairness of it all. We all have to get our grief out somehow.

But posting a picture? I’m all for raising awareness. And this is an unbelievably tragic situation. WE NEED HELP. The picture was powerful but I just wasn’t in a position to see that. I wasn’t mentally ready to see that because it’s my absolute worst fear. Then it made me wonder: how many people truly care? I know when Ben relapsed the first time, many people rallied around and supported my family. But I learned through a friend that someone I considered to be a friend actually stated “We KNOW he has cancer. We’re all kinda tired of hearing about it all the time.” My feelings were hurt and, of course, I never confronted that person to see if that statement was truly how they felt, but I thought that I should be more guarded in what I share. Most people are genuinely interested in knowing how Ben is doing. But I imagine there ARE some people who get overwhelmed with the information I share. It is heartbreaking. And I understand that many people have a lot of other crap going on. But this is my life and how I’m living it. My son has cancer. That consumes nearly every moment of my day – and has for a long time. My writing about it is my outlet. And since Ben has relapsed, I’ve been inundated with friend requests, mostly from concerned people who want to support us and people in the same battle we are. But, in a strange twist of events, I’m not sure I’m ready to be friends with so many people fighting the same battle. My head can’t wrap around the sadness of all these dying children who are losing their battles. It’s not that I don’t care, I just don’t think I can handle any more.

And seeing how I got my feelings hurt when this “friend” told someone else that they were tired of hearing about Ben’s illness, I hate to think I’m hurting someone else’s feelings because I cannot deal with their sadness right now. I guess I should give myself some grace. I can’t fight everyone’s battle. I can only fight the one in front of me.

So, a crusader I’m not. I’m not going to change the world and encourage everyone to get out there and find a cure. I can only focus on the challenge right in front of me. My darling son. I hope you’re with me and along for the journey. I’m sorry it’s all I talk about. Trust me, I’d rather be doing something else myself.

But for now, I’m going to sit on this couch and be totally overwhelmed.

Sometime around 1969 Elisabeth Kubler-Ross came up with the five stages of grieving, which was eventually published in her opus “On Death and Dying.” She suggested that people dealing with major grief-causing events experienced the following stages (not in any particular order): Denial, Anger, Bargaining, Depression, and Acceptance.

I would argue that I deal with these stages on a regular basis for everyday, mundane events. Grief-Causing Event: Having to Get Out of Bed. STAGES – DENIAL: NOOOOO! It can’t be TRUE! I just fell asleep two hours ago! It’s not possible that I have to get up already! ANGER: Dammit, WHY do I HAVE TO? This is so ridiculously unfair! I’m going to make everyone’s life MISERABLE if I have to get out of bed. BARGAINING: Can’t I just have five more minutes? I will be a much happier person if I can just have five more minutes. I’ll give you something you want in return. You want that new toy, right? Five more minutes of sleep and it’s yours.  DEPRESSION: If I just kill myself now I can stay in bed forever. ACCEPTANCE: Well, the dogs aren’t going to walk themselves. I might as well get up before they pee on the carpet again.

This would also be true if I was at a restaurant that served only Coke products. “What do you mean I can’t have a Mountain Dew? Do you know how sorry I’m going to make you if I don’t get my Mountain Dew?” I do eventually accept it, however, and order a Coke. But I’m pretty darn depressed about it.

So imagine my poor little mind as it tries to wrap itself around my son’s cancer relapse. Having been through the stages before, I moved fairly quickly through Denial and am now stuck on Anger. Mixed with Depression. With a side of Acceptance. I know there’s no reason to Bargain. Cancer doesn’t care. If I promise to appreciate every single day I have with my children it will not change the fact that my son has cancer again. If I become a better person. Or a more frequent church-goer. Or brush my teeth after every meal (snacks included) it will NOT change the fact that my son has cancer. Bargaining has proven to be a worthless effort. I’m going to remain the same person I am who hates to put away laundry and is a professional procrastinator. Who loves to start projects but never finishes them. But who wildly loves her children and actually enjoys spending time with them. Changing my “evil ways” is not going to change the fact that Ben has cancer. So, for all you weirdos who say I’ve brought this on myself, I have some choice words for you. And since you’re all experts on how I should be handling MY life, I’m sure you can figure out those words all by yourself.

Yeah, I’m stuck in the anger phase. Ben is a wonderful boy who doesn’t deserve any of this. No child does. But, right now, I can see him playing on his computer and eating some Doritos and feeling pretty darn good, so I’m trying to feel good, too. And, we have a plan. Sometime around June 20th we’re traveling to Cincinnati to consult with Dr. Brian Weiss at Cincinnati Children’s Hospital. Matt and Madeline will be traveling along, too, so after our consultation we’ll head to Columbus to see family and friends. I’ll be staying with my dad in Bexley. Ben’s birthday is Saturday, June 22, so we’re hoping to hold an open house where people can come and visit (or meet for the first time!) the amazing Bean and Madeline! Icing Smiles has agreed to supply him with a birthday cake and I’m sure we’ll get Donatos because that’s Ben’s favorite (mine, too). Details are in process and I’ll send out an evite or facebook event or something. If you’re not my pal on FB, you can send me your email address and I’ll make sure you’re aware of the details as we get closer to the event.

Then, we’ll be heading back to Cincinnati the following week to get radioactive. Madeline will stay in Columbus, so anyone wanting to entertain her for an afternoon or so, let me know. She needs some high doses of feeling special.

I’m feeling better about having a plan, but dammit, I’m still mad. And sad. And briefly accepting. Our lives have entered into a new phase that I’m not happy about and while I should focus on using my five stages to get through Ben’s cancer, I can’t help but go through them every time I have to do laundry. Or walk the dogs. Or go downstairs to get myself a Mountain Dew.

It seems like every little event is completely debilitating. Stupid Cancer. You do NOT know how to throw a party. So, I’m uninviting you.

Bzzzzzzzzzz. Bzzzzzzzz. BZZZZZZZZ!!!!

I hear you. I’m just ignoring you. Maybe that buzzing is the start of an ear infection? Perhaps a bug has moved in? Or maybe I have ear cancer? I’ll have to have an ear-ectomy. Buzz buzz buzz. Please, for the love of the Pete, please stop with the buzzing already. I have no remedy for the horrible sound you’re making inside my head.

Ha! I just said For The Love of The Pete. Ben used to say that when he was a toddler. Actually, it was with a “W” sounding “L”, so he actually said “for da wuv of da Pete.” He had a tough time with L’s like I have a tough time with R’s. Madewin. Wegos. Wadies. When Ben was first diagnosed with NB and we basically lived in the hospital, he often would take charge of small tasks like telling the nurses when his infusion of chemo was complete. The machine would make this horrible beeping noise that could only be stopped by a nurse. Honestly, I thought the machine should make a happier noise, perhaps something like the “Mexican Hat Dance” when chemo was complete. After all, isn’t that a moment worthy of a happy song? Chemo is done! Let’s party! But no. The beeping was similar to an annoying car alarm that could only be stopped by the owner, who had unfortunately left the country on walkabout. The battery would have to die before it would stop. Now, I, as a parent, had the power to push the snooze button, but I could not stop it. Only a professional could do that. So, when the beeping would start, Ben would call the nurses on the intercom. With his sweet toddler voice he’d say something like “Wadies, my ma-chine is beeping.” He said machine as if it were two separate words and didn’t give the “ch” an “s” sound. He said the “ch” like chain. Combined with his W for L in the Ladies, it made for a heart-melting sentence.

He is so freaking cute. He makes my heart melt all the time. A couple of days ago we went to see his pediatrician to discuss his ADHD medication increase. He has a hard time focusing at school so he takes ritalin only on school days. However, given the new course that cancer has charted for us, the ritalin issue was not what we discussed. Ben’s pediatrician is a very sweet lady. She was asking him questions about his relapse – wanting it in his own words. I had to bite my tongue to keep from answering questions for him in adult terms, whatever that sounds like. So, as he said it, “The cancer is back. I have to fight again.” Matter-of-fact. Not much emotion. He’s sad but he knows that complaining about it isn’t going to make it go away. As we were getting ready to leave, she asked him if she could give him some money to buy a video game for his DS. He said, “No, I have my own savings account. I can get something for myself.”

MELT. Melty, melty, melt.

So, this good kid, this wonderful child who has a heart of gold, has to battle again. But he just keeps at life with the same tenacity as usual. Cancer is his bully. Cancer is jealous of the light and love that this sweet boy exhibits. Cancer is only black and awful and hateful and destructive. And while it knows no bounds of who it attacks I hate it for attacking the sweetest kid in the world. I know I’m biased. But I think 9.8 out of 10 people agree that Ben is nothing short of amazing. I sure do hope he gets to grow up. He’ll make an incredible adult. I want to be just like him when I finally reach maturity.

Life is to be lived. Things happen that will throw us off course. Sometimes violently. But the fact is that we have to keep moving. Time waits for no one. So, get out there and make the most of today, friends. However, while you’re doing that, I’m going to sit in my dark corner and listen to my buzzing brain and NOT do laundry.

Taking my own advice is obviously something I’m not good at.

The night before we left Kansas City last week, I asked my dear girlfriend, Dawna, for a word to write about. She chose Wiley, which is the name of her dog as well as her maiden name. I was in the mode of still asking for words to write about because I had no idea that *BEEEEEEEEEEEEEEP* (censored due to copious amounts of foul language) cancer was planning to ruin our day, which would end up changing the course of my writing altogether.

One of the best parts of getting on that study in Kansas City was the fact that I’d have Dawna for support. It made such a difference. I did eventually make friends with the folks at the Ronald McDonald House in New York City, but we were all in the same boat. We were all fighting. We were all talking about our children. The camaraderie was strong, but it could be overwhelming when a child lost their battle or there was a setback in their treatment, etc. The nice thing about Dawna is we just got to BE. I was always a scanxious mess the few times that we did travel to KC but she did her best to distract me. We’d watch TV, drink wine (which you aren’t supposed to do at the Ronald) and laugh about stupid stuff.

I met Dawna when I lived in Summit County. I worked at a bank with a bunch of ladies I didn’t really have anything in common with. I think what it came down to is that they were a bunch of catty b*tches and I never had any interest in playing their games. Plus, all the officers loved me and said things like “I wish I could clone you. You are a great employee.” All the other ladies were jealous. So, when Dawna came in for her interview, all the ladies gathered around to judge before they even met her. As I avoided their blathering, I stated out loud, “That girl WILL be my friend,” which did nothing to solidify my membership with their group.

Dawna got hired and she did become my BFF. She felt the same way about the other catty b*tches at the bank as I did. We were a team. We had a blast working the drive-thru together. We started hanging out after work which morphed into spending days off together. She took me to my very first Target on what became known as “Big Fun Days.” There was no true shopping in Summit County so we’d have to travel to Denver. We had so much fun.

I moved away from Summit County first. And then she moved back to Missouri, but we maintained contact. The beautiful thing about our friendship is we can go for ages without talking but the moment we’re back in contact it’s as if we were never apart. So, when Ben had the option of treatment in KC, she offered her home to us. It was nice to stay in an actual house. Dawna has two big dogs who would sleep with us at night. Ben loved that. I think dogs – or animals in general – are a comfort to him. Jack and Wiley were great at loving on Ben and Dawna was great at loving on me. She’d let me be weird if I needed to be. She’d supply me with a beer after a long day at the hospital. Her comfort knew no bounds and I was so grateful. So when I called her from the hospital last Thursday with the incapability to say any words at all, her answer was, “I’ll be right there.”

She’s always been right there for me, my sweet Dawna. I know I am safe with her and that’s a rarity in my world. I have a lot of friends but few who get to the center of this Sarah-tootsie-roll pop. She gets me. And, interestingly enough, she’s not afraid of that. 🙂

I don’t know what I would have done without her last week. The journey to the front of the hospital after hearing that news was one of the longest of my life. My knees were as awkward as a newborn colt. My breath as if I’d just finished a marathon. My grip on Ben’s hand holding on for dear life. Cancer couldn’t take him away if I was holding on as hard as I was. Someone helped us cross the finish line to the outside. I don’t know who that person was. I’m glad she was there, whoever she was. She got us to a bench where we could wait for Dawna to pick us up. Ben held my hand, comforting ME (epic mom fail) as I maniacally yo-yo’d between body-wracking sobs and indignation (complete with Hitler-esque hand gestures) that we’d beat it again. When she pulled in to the hospital roundabout, she hugged Ben first. Choking back the tears. The pain obvious even behind her fashionable sunglasses. And then she hugged me. My weak knees strengthened by the love she’s always had for me. Letting me know in that one amazing hug that she wouldn’t be letting me go. Wouldn’t be letting us go.

So, Dawna Wiley McGill, with a dog named Wiley and a lot of love for a hero named Ben and a wacko friend named Sarah, your immeasurable love is so appreciated. It will help us be as tenacious as another “Wiley”… Wile-E-Coyote, who kept after that stupid Road Runner even though he kept getting beat. Kept getting anvils dropped on his head. Kept falling off that cliff and landing with a distant expulsion of dust – but yet kept surviving. Kept returning. Kept fighting. We’ll do the same.

I know. Stupid analogy. But it fit. And I know she’ll still love me despite my being a complete dork.

It hasn’t even been a week yet since I heard the news that my son had relapsed, but it feels like a million years ago. We’re waiting to know more about our planned course of attack and if we’ll be traveling to Cincinnati or Philadelphia or somewhere else. Meanwhile, all I can think about is that stupid tumor hanging out in my son’s chest. If cancer could speak I’m sure it would only have nefarious things to say. Perhaps it is saying something like “you can’t stop me now” or “I’m getting ready for a growth spurt” or “I’m not happy with my current view, I’m going to move to another room.” I just want it out of my son. I just want to stop it. It cannot grow and it cannot spread. I’m just not going to give it permission to do so. Too bad it doesn’t care what I have to say.

There’s no scrapbooking material for this. I sincerely enjoy documenting my children’s lives because I know I was obsessed with my tiny pink baby book that mom only filled in a 1/4 of the way (second child, Vietnam war, I’m sure there was a good reason for her to give it minimal effort.) However, I LOVE taking pictures and I LOVE writing about how awesome my children are. But in this fight for Ben’s life, I’ve really struggled with how to document that. It’s a story that deserves to be told, but not in a traditional scrapbook way. There’s no “Watch My Tumor Grow” stickers or “I excel at chemotherapy” pages. No trophies to be given for multiple surgeries. No awards for participation. They DO have this kind of stuff for breast cancer, but they traditionally get all the attention. People tend to think that’s the only kind of cancer out there. Anyway, I’m kinda peeved that this has taken up so much of Ben’s life and while I know the bravery aspect is something to be documented, the rest of it just isn’t. So not fair for my Ben.

So, last week when I learned the news of his relapse, I was heartbroken on so many levels. And after speaking briefly to key players in Ben’s journey, I picked up the phone to make one more phone call. I started punching in the familiar numbers knowing that the person on the other end was going to understand. Was going to comfort. Was going to share in my grief. Would drop everything to come to me. Would hold me in her arms until the sobbing stopped. Would make sure we had everything we needed to get us through this one more time. Would drive me absolutely insane, but that’s what mothers do. And to realize that I’d lost her more than two years ago definitely added insult to injury.

My mom did drive me crazy. We fought a lot. But when it came to Ben, she was an excellent caregiver. She was always at the hospital. She offered respite when it was needed. She loved Ben with her entire being. And when Madeline was born shortly after Ben’s diagnosis, my mom formed a bond with that little girl that was nothing but love. She bought Madeline a million pairs of shoes before Mad could even walk! She had the most spectacular wardrobe of any toddler in the universe. I think Madeline was a focus that my mom needed. Something that Madeline needed. Mom loved all of her grandchildren but the bond between the two of them was beautiful. I miss it. Madeline misses it. We miss her.

The fact that today would have been mom’s 70th birthday, well, I wish we had a better way to celebrate than to be waiting to learn – once again – what Ben’s treatment protocol will be. But it is what it is. In the meantime, Mom, I’ll imagine your hand wrapped around mine. Your fingers running across my aging hands that have turned out to be just like yours. Then you’ll say something totally inappropriate that will make me laugh. We were good at that, weren’t we? Our sick sense of humor got us through all the crap.

And even though you drove me insane, I sure wish you were here to hold me. To tell me that it was somehow going to be alright. That I’ve made you proud by being an excellent mom to Ben and Madeline. That would be the best compliment ever.

Happy Birthday, Mom. If Heaven throws birthday parties, I hope they all chip in and get you a kitten. Or some flowers. Or a new outfit from St. John. And, of course, some new shoes.

I need you. I miss you. I love you. Happy Birthday.

Most of you know I enjoy music and I often take snippets of songs and sing them as a mantra to soothe me when I don’t know what else to do. “Give Me Love” by George Harrison has always been a favorite in times of great need. Of course, “Blackbird” and “Here comes the sun” were popular while Ben was in treatment. Whenever he would get an erratic heartbeat or feel horrible, I could sing either of those songs to him and the pain would subside a little. Of course, Bob Marley’s “Three Little Birds” is one that Ben, Madeline and I all sing to each other regularly. It’s also Ben’s ringtone when he calls me.

But I noticed that I’d been humming a song to myself as I stared in the mirror wondering who that tired, tear-streaked face belonged to. Or when I rocked myself while sitting on the floor of the shower with water pouring down on my head. Or as I lifted my head to the heavens as the rain pelted my face while asking why? Why is this happening to my son again?

“I know you have a little life in you yet. I know you have a lot of strength left.”

I was doing it subconsciously. I hadn’t heard the song in years. And this morning it came to me what I’d been humming. “This Woman’s Work” by Kate Bush. I woke up this morning at a ridiculous hour to let my dogs out. As they were doing their business I sang to them “I know you have a little life in you yet. I know you have a lot of strength left.” They looked at me like I was losing it. But they’ve never listened to me before so why start now? They eventually stopped cocking their heads as if they were trying to decipher what I was saying and went back to finishing their business.

Ben was not a planned baby. I didn’t think I could have children because of my own battle with cancer. At least, that was the rumor. But as I held that beautiful little being in my arms just moments after he was born, my heart filled my throat. I couldn’t breathe for how beautiful he was. After getting over the fear of not knowing how to change a diaper I looked deep into his eyes that could not focus and told him that we’d figure it out together. And, so far, that plan has served us well.

“I know you have a little life in you yet. I know you have a lot of strength left.”

I’m afraid he’s going to die. I’m afraid that his beautiful soul is just too wonderful for this world. And while I’m grasping at the beautiful privilege of being this amazing boy’s mother I can feel it slipping through my fingers. Don’t get me wrong. Death isn’t looming over his shoulder today. He’s  got a little life in him yet. He’s got a lot of strength yet. But my hopes of his being a normal, healthy boy and growing up to lead a normal, healthy life has been compromised.

I’m not giving up. The facts are just sinking in. And I don’t like it. I think we can keep him stable for a long time. It’s just going to depend on how long he can keep up the fight. How long we can keep him strong. We’ll figure it out together.

This Woman’s Work – Kate Bush

Pray God you can cope.
I stand outside this woman’s work,
This woman’s world.
Ooh, it’s hard on the man,
Now his part is over.
Now starts the craft of the father.

I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.

I should be crying, but I just can’t let it show.
I should be hoping, but I can’t stop thinking

Of all the things I should’ve said,
That I never said.
All the things we should’ve done,
That we never did.
All the things I should’ve given,
But I didn’t.

Oh, darling, make it go,
Make it go away.

Give me these moments back.
Give them back to me.
Give me that little kiss.
Give me your hand.

(I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.)

I should be crying, but I just can’t let it show.
I should be hoping, but I can’t stop thinking

Of all the things we should’ve said,
That were never said.
All the things we should’ve done,
That we never did.
All the things that you needed from me.
All the things that you wanted for me.
All the things that I should’ve given,
But I didn’t.

Oh, darling, make it go away.
Just make it go away now.

I jolted to attention – spine stick straight – searching for breath and clutching at that place on my body where my heart supposedly continues to beat internally. My heart must still be there, for I felt it pounding for a few seconds as I remembered where I was. Home. In bed. Safe? Not sure if that descriptor is accurate. I don’t feel safe at all. Regardless, my jarring body movements would dictate that I’d had a bad dream. And apparently, I’d been thrashing around for a while because my blanket was off the bed and my sheets had lifted to expose my sad and aging mattress. I think I’m prone to some movement during slumber but I’ve never taken the time to videotape my normal sleeping habits. I think this episode was out of the ordinary.

I usually do dream. They are generally very vivid. For a while during my college years I’d been very interested in dream interpretation. But more often than not I found that interpretations wildly fluctuated. So, I started enjoying them for what they were – extensions of my wild imagination. Last night, however, felt really different to me.

I was wearing a beautiful royal blue silk dress. This dress did exist in real life and I’d even worn it once or twice. It belonged to my step-grandmother. She’d had it made for some fabulous event that occurred before I was born. I was born in ’68 for those of you who don’t know so this dress was really old and it was just beautiful. I am very fond of vintage styles and material, so wearing this dress was an amazing real-life experience. Anyway, I was trying to get to a party. I was staying in a hotel downtown with a group of people – a mix of family and friends. Most of them had already caught a limo to the party but I had to wait for a bus. As I was waiting, someone from the hotel came out and told me to move all my stuff out of my room because they just gave my room away to someone else. In a confused state, I unlocked the door to my room to find all my stuff gone and the mattress all rolled up like something you’d find at camp. It was cold and devoid of any personal items. Then I heard a voice tell me they had my stuff and that I should find them so I could have my stuff back. Despite a desperate search, I couldn’t find them. I went to the front desk to see if they would place me somewhere else but no one would help me. Two young co-workers were laughing and giggling – perhaps even flirting with each other – as I frantically tried to get their attention by pleading and eventually screaming. They ignored me. My dress got older. Became faded. And started to wear out at the seams as I continued to unravel myself.

I woke up screaming for help. Clutching my chest. I know it was just a dream but I had the overwhelming feeling that I’d just been kicked out of my life. In fact, when I made that statement to my friend, she said “I think you have been.” It was a sobering thought.

John Lennon wisely said “Life is what happens while you’re making other plans.” I had plans, man. I had given myself the luxury of this year to spend with Ben and Madeline. I have very limited means and I should have a job but I thought it was way more important to spend time with them this year while I got my sh*t together. This summer was going to be one to remember. We were making plans. Making PLANS. making plans.

I know that we’ll find times to have fun. I know we’ll make every effort to find the JOY despite this crummy development. There are camps to go to. Activities to enjoy. Snuggles to savor. Life. It’s not happening according to plan but at least it’s still going to happen. I don’t know how, but we’ll try to make the best of it.

And then it all hits me. The tragedy of it all. Panic tries to set in. And then I tell myself to shut up and find the fricking JOY. Find the GOOD. Savor the NOW. You’d think I’d have learned that over the last nine years. Through almost losing Bean multiple times. Obviously I haven’t learned to embrace the now, or I wouldn’t still be getting smacked in the head with the same lesson.

So, I’ve been kicked out of those prior plans. That life. And I don’t have a choice but to live this one. So I’m just going to do it.

We met with Ben’s Denver treatment team yesterday afternoon to discuss our options. We’ve had many wonderful doctors throughout Ben’s nine years of therapy but Dr. Greffe here in Denver is the bomb-dot-com. When he called me yesterday morning, his first words were “I’m so sorry.” What I like about Dr. Greffe is that he really is sincere and generous with his feelings, and the clinical stuff – which he is undoubtedly an expert on – always comes after he gives a big dose of love. Sensitive moms like me tend to appreciate that. I know he cares about BEN, not just the fact that he has disease. Ben isn’t a specimen. He’s not just a number on a study. He’s a kid. And Dr. Greffe appreciates and embraces that.

So, Dr. Greffe, Dr. Meg Macy, and our nurse practitioner Flori, all came in to meet with us. They had spoken to Dr. Neville in KC to get the update. I handed over the CD’s containing Ben’s scan information to Dr. Greffe that I’d received the prior day in KC. And that picture of his scan. That stupid spot circled by ballpoint pen. Dr. Greffe joked and said, “Wow. Glad they circled it. That really helps.” I laughed because I knew he said that for my benefit. He knows I depend on my sense of humor to navigate this craziness. He just seems to know what people need and that’s what makes him a true professional.

So, we discussed some options. The one that would continue on in Kansas City or Michigan under Dr. Sholler and Dr. Neville, neither Matt nor I felt it was the right study for Ben. The second one in Denver combined a bunch of toxic chemos that would make Ben super sick again. In my heart I felt deep dread about this one. I don’t think the extent of his disease really warrants that much toxicity. I felt that this might be an option for later down the road if we cannot get his disease to respond with a different therapy. Another study in San Francisco consisted of an oral agent. Low toxicity but he might not respond. I think this would be a good plan for follow up. Then, the one Matt and I agreed on was the MIBG therapy. The one our buddy Justin just went through in Philadelphia. Please visit my post called “ISOLATION” to read about our good buddy Justin and his amazing mom, Lori.

Basically, Ben would be given high doses of radiation and stuck in isolation until his body cleared the radioactive agent. It could be up to a week he would spend in isolation. We could see him and he could see us but we wouldn’t be able to be with him. Ben is the kind of kid that can handle alone time. He’s old enough that he can care for himself on a daily hygienic level. I think he’ll do okay with this therapy. He might struggle with not being able to have his electronics (because it would be deemed as radioactive waste and they’d have to be disposed of in a nuclear waste receptacle) but my dad said he’d buy him a DS and some games that he could throw away. My dad is great. He said “I don’t care. I just want him to be happy and have something to do while he’s stuck in there.”

So, armed with a disposable DS, a lot of paperback books and the will to fight, we think that this is the right course of action to treat this stupid disease. We’ve been given a list of locations where they offer this therapy (Denver has an MIBG room built but won’t be open for operation until September – we simply cannot wait that long). Our options are San Francisco, Boston, Texas, Michigan, Philadelphia and Cincinnati. Our first choice is Cincinnati with a backup of Philadelphia. It all depends on where the open study slots are available, but Dr. Macy thinks that Cincinnati shouldn’t be a problem. I’m really hoping for this because we’ll be close to family and friends. And Skyline Chili. Philadelphia would also be a good option because my sister lives close enough to come help out. There are many details to work out. We also need to figure out if he’ll need to harvest more stem cells (he has one small bag left over from a harvest when he was two) and how many treatments he’ll be able to get. Since we only have one bag of backup cells, he might only be able to get one round of MIBG. Our travel to Cincinnati will not be extensive, he will most likely only be able to get two rounds of this therapy at the most. Once he’s done with that and he hopefully responds well, we can get him on that oral medication study in San Francisco.

So, that’s our plan. All subject to change, of course. I felt great yesterday after developing a plan but, admittedly, today I feel down. I know the roller coaster of emotions is to be expected, so I’ll be gentle with myself, but it’s still exhausting. So I’ll lay here, snuggled with my Madeline and my two silly dogs, and connect with Ben and Matt in a couple of hours. I think we’re going to try to do something fun for a little while. Distraction is a good thing right now.

Also, I’ve been overwhelmed by the outpouring of love and support you’ve shown yesterday. It was sincerely heartwarming and encouraging. I don’t want you to worry about saying the wrong thing. Don’t be afraid to talk to me. And, admittedly, something I am famous for is HIDING when I’m stressed out. Don’t let me do that. I will retreat and isolate myself, which is NOT a good plan of action for me right now. My high school friend, Tammy Haney, just showed up at the hospital yesterday. I hadn’t seen her in years. She came to offer her support. She ended up hanging out with Madeline while Matt, Ben and I were in with the doctors. Madeline loved that. So did I. In fact, Maddy kept talking about how nice Tammy is. They played games on the iPad and watched TV in the oncology lobby. It was so good for Madeline. And so good for me. I need the support. I want the support. But I’m afraid to accept the support. Does that make sense? Help me out friends. I’m mentally challenged. 🙂

Will update more as we get information. Thank you, thank you, thank you for everything.

For two seconds, I forgot. Forgot about the horrible words I heard yesterday. Forgot that yet another doctor had broken my heart. I woke up from a blissfully dreamless sleep starting to think about what was on today’s agenda until I remembered that my son’s cancer had returned. I think my swollen eyes gave it away. I can barely open them. If I hadn’t cried so much yesterday maybe I would have had three full seconds of forgetfulness. One extra second to be in denial about what is about to come our way for a third time.

The study that Ben has been on for the past 10 months in Kansas City came to an abrupt end yesterday. As many of you know, Ben and I were in the land of BBQ for his three month scans. He had technically shown no evidence of disease since having an affected rib removed in 2010, so despite my usual scanxiety, we were all feeling pretty good about where Ben was medically. I was getting used to the thought that my Ben was cured. Silly girl. Neuroblastoma doesn’t get along with that word. Cured isn’t in it’s vocabulary. It sure showed me.

So, when Dr. Neville came in yesterday to give Ben an exam, she was pretty quiet. I was talking to Sara, our nurse practitioner, about paper of all things. I have a giant addiction to paper. It makes me feel good. I buy it and think about all the pretty things I can make with it but then never do. And, in Kansas City, there is a wonderful store called “Paper Source” that has amazing paper. It’s not really a scrapbook store, per se, it’s a stuff store. And it makes me happy. Ben and I had taken a cab from the hospital to the store the day before just so I could browse. While I was there, I bought two books. One that is like a journal for Madeline… all the things that I “think” I’ve learned during my lifetime and the lessons I want to pass on to her. The other book was a daily journal with 365 questions to ask my children. This book has space enough for three years of their answers. I thought it was the coolest thing ever. The first question was “What seems dangerous to you and why?” Ben’s answer revolved around people who smoke and how that might be not only affecting them, but him too. Madeline’s answer was sledding down a steep hill and getting hurt.

Sara was getting teary as I was sharing these books with her. She told me I was a really good mom and then made a hasty retreat because Dr. Neville was finished with her exam on Ben. Ben had his earphones on and was watching something on YouTube as Dr. Neville sat on one of those rolling stools and moved in very close to me. I was still holding the 365 days of questions book. She presented me with a paper that showed Ben’s blood counts as being very strong. Good news first, right? Then she said, “Unfortunately, his scans weren’t what we hoped.” My grip on the book tightened as she flipped to a second page that showed his small, sweet frame in scan mode. Right below his precious collarbone there was a spot circled with black ballpoint pen. A small spot. A spot she told me was cancer. I have no idea what I physically looked like but every cell on the inside tightened. I felt my entire body start to buzz as she kept pointing at that damn spot and explaining that we were now in chronic disease mode. It’s going to keep coming back unless a cure is found. Or a miracle occurs. Or a meteor comes down to earth and smashes us all to bits. Honestly, right now, I’d be fine with any of those scenarios.

Ben continued to watch YouTube as my body slumped. Dr. Neville held me as the uncontrollable sobs took over. I think my first words were “I can’t. I can’t. I can’t tell him again.” She said that she would do it, but it was too late. Ben had taken off his headphones to ask what was wrong. Dr. Neville explained that mommy was sad because she loved her son so much and we had just gotten some news that was tough to take. I continued to sob as she explained that the cancer had come back. He didn’t cry at first. His first action was to console me. He said right away that he felt okay. That he’d fought it before and would fight it again. And that’s when I started crying harder.

The surgeries. The chemo. The radiation. Again? AGAIN? HE’S BEEN THROUGH ENOUGH! And here he is, willing to man up and do it again. Because that’s what it’s going to take. He accepted it. Just like that. Dr. Neville said some other stuff that I didn’t really hear. Basically, there’s no plan right now but we do have options. We might have to travel. We might not. I’ll go to the ends of the earth to take care of my son. Unless that meteor wants to come now and put us all out of our misery.

I called a few people and texted some others just to let them know that it hadn’t gone as hoped. Ben wasn’t NED. And then I called my girlfriend, Dawna, to come pick us up. Actually, I didn’t say anything. I was just crying on the phone. And she said, “I’ll be right there.” I walked Ben out to the front. Actually, I fell to my knees in the elevator first. I’ve passed out before but I was able to stop myself before completely blacking out. I willed myself to pull it together. To shut the hell up. To MAN UP and deal with it. I have no choice. Cancer is holding us captive through its attempt to destroy my son.

For the rest of the day, I cried. I figured that the entire day was a “freebie” to be an absolute mess. Somehow we got through security at the airport. My mind was in a thick fog and I continued to cry on the entire flight home as Ben slept peacefully on my lap. The man beside me read his bible the entire flight but never once reached out to console me. Maybe he was secretly praying for my suffering to subside. I don’t know. But I’ve learned along the way that there are few people who actually do anything in situations like these. They say they’re with you and that they’re praying but what it comes down to is that we’re alone. We get to be that train wreck you can’t look away from. And people thank God that they aren’t us. It’s our own hellish reality show. If you’re with us, tell me. I need to know. I don’t want your empty words. I need to know who my peeps are. Who I can depend on. Who I can turn to. If you’re not, that’s fine too. You simply cannot break my heart anymore than it broke yesterday.

I don’t know what else to say other than we’re back at it. And Ben is ready to fight so I’m getting out my battle gear, too. It’s a little dusty and I might be missing a piece or two, but I’m sure in the next few weeks I’ll find the missing pieces of my armor and help my son to kick some cancer ass.

Meanwhile, I’ll keep asking my children the 365 days of questions and hoping that we get to finish those three years of answers. But you have to know that I’m scared to pieces that he won’t get to.

And that’s a reality I just cannot accept.