Stronger Than I Look

I’m a quirky kid. NO doubt about it. I have weird rituals that I participate in during intense moments of my life that seemingly make things better for short periods of time. I’m sure it’s all in my head, but it’s only weird if it doesn’t work, right? I mean, that’s what all the sports stars say. They’ll wear the same socks for an entire season as long as the winning streak continues. Don’t screw with a winning streak. Do NOT jinx yourself, no matter how weird the behavior seems.

So, when scan week comes around for Ben, I throw myself into a self-inflicted tailspin. I get super crazy. I withdraw. I obsess. I “what-if” the heck out of every scenario. I brood in the dark. I cry in public places. I hyperventilate like my plane is going down and getting ready to explode in a fiery crash that consumes my entire being in flames. And somehow, this masochistic ritual is only allowed to end when the doctor says, “Ben continues to show no evidence of disease.”

And then I’m good (kinda) for another three months until it’s scan time again.

Why do I do this? The answer is simple. There were exactly two times when I didn’t – and it did NOT go as I had optimistically planned. The first time was in 2009. Ben had been doing well for a couple of years. We were fully ready to embrace annual scans and had one more year before being invited to join the “Hope Clinic,” which I believe is the Holy Grail of cancer survival. Once you hit that five-year mark, you’re supposedly all better. You’re allowed to move away from cancer. It would grow ever-distant in the rearview mirror as normal life replaced all the nonsense. I had a feeling of euphoric joy as we were leaving the hospital after those 2009 scans, only to be crushed a few hours later with news that a new tumor had been found.

Then, just a year ago, Matt was driving Ben and me to the airport for scans in Kansas City. I remember it was a sunny day. As we were pulling out of my apartment complex, I said, “I feel good about these scans.” Matt said he did, too. And within a few days, we would be crushed again by the news of another relapse. So, I had two times of optimism destroyed by neuroblastoma giving me the finger… I kinda don’t trust it anymore. So, my superstitious nature takes over.

My mom once scolded me for being superstitious around scan time. I was kinda peeved that she didn’t mention it before – like maybe when I was a kid and developed my superstitious nature. According to her, I hadn’t added to her happiness OR her back health by avoiding stepping on cracks. That means I did a lot of extra maneuvering on the sidewalk for nothing. She was also suggesting that it was okay to walk under a ladder (I still will NOT do that.) I also had a long-standing uncomfortable relationship with always looking at the clock at 12:13. ALWAYS. It meant something weird. I just knew it. I’ve made peace with 12:13 now, but the rest of my superstitious nature is still intact.

The funny thing is, I know this is nonsense. It doesn’t matter what I say or do or how long I go without shaving my armpits or if I walk down the stairs backwards while humming the National Anthem of France. I have no control. It doesn’t matter how hard anyone prays. Or how many people say “He’ll be fine. I just know it in my soul.” I used to live for people saying that sort of stuff. Now, I realize, that even doctors don’t know. Ben’s New York doctor said, “I believe Ben is curable.” I ate that up. I wanted so bad for that statement to be true, so hearing it from a professional was the shot in the arm I desperately needed. Too bad that doctor just didn’t know. I was mad for a while about her false advertising. But I realize that she was just being hopeful. Hope goes a long way. But hope is tricky.

I know I’m sounding defeated. That’s not what I mean. I am hopeful. I’m just saying that the two times I got overly confident, hope kicked me in the butt. I’m kinda tired of being kicked, especially when we’re already down.

So, for the next few days, expect me to be cranky. Anxiety-riddled. Irritated. Weepy. Withdrawn. Scared. Pissed to no end that we’re still at it. All with a side of hope. Just stand back and let me do my thing for a couple of days, okay?

I guess I can call my state “optimistically superstitious.” But, hey. Whatever works, right? We’ll get through it.

We always do.

 

 

 

I was crazy to think that I could afford nurses AND teachers the love they deserve in my usual 1,000 word or less posts, so here’s an addendum to my “Appreciation” entry where I’ll focus the love on the nurses we’ve known.

Over the last 10 years of Ben’s therapy, I can honestly say that there was only one nurse I didn’t care for. She was old school. And she didn’t seem to like children. I found it odd that she was allowed to be on a floor that demanded long-term compassion. Fortunately for us, we only had to endure her negativity for a brief period of time because the majority of the nurses would FIGHT over who got to care for my fine young son. I’m not joking! Ben is such an easy going kid that it was never an issue to find an excellent caregiver.

I’ll never forget landing on the oncology unit back in 2004. Ben’s illness was supposed to be a hip infection, not cancer. People kept bombarding me with information regarding a five-syllable word that I’d never heard of, nor did I care to get to know. But it was evident that given the stage of his disease that we would eventually become quite intimate. Those first few days was a bizarre orientation of sorts. A binder filled with checklists. Staff explaining our new life. Specialists of all sorts poking and prodding. I was in a daze. I didn’t fully accept what we were in for until someone handed me a special parking pass for the garage. Only then did it sink in that we were going to be at the hospital… a lot.

As I started to find my “groove” in this hellish new world, I found that the nurses were more than just caregivers for my son, they became my family. When I would wake up crying in the middle of the night, they would take care of me. When I didn’t understand something, they would explain it to me. When I was scared about a scan, they would console me. When I needed to focus on getting Ben through something, they would take Madeline on a walk. Nursing went beyond my son. They weren’t just taking care of him, they were taking care of all of us. And what I loved the most? They always called me mom. I’m sure this was part of the plan, the patient’s name was on the door – so that was easy to remember – but the parents? It was more difficult to memorize all of the caregiver’s names too. But “mom” was all I needed. It reminded me what my role was. Mom. I’m Ben’s mom. There’s no one more important or more needed than mom. So, when the nurse would come in to take care of Ben, before they headed out into the hall to tend to another kiddo, they would always ask, “Do YOU need anything, Mom?” It often drug me out of the dark corner where I would sit worrying about what was coming next. Mom. I’m Mom. Pull it together, dipshit. You’re needed.

I didn’t know how to care for my son on my own. I needed these nurses to get me through. And eventually, I started watching what they did so I could at least be helpful. I knew how to do the stuff that normal parenting calls for, but changing the dressing on a catheter or giving a shot or finding a (tricky) way to administer medicine was all a gift given to me by extremely skilled nurses.

I remember being asked if there was anything I needed as the nurse started to leave the room. I turned from my usual chore of staring out the window to ask her “How do you do this every day?” She came over to sit next to me and said, “It’s simple. I love your son.” Knowing that my son wasn’t the only patient on the unit really touched me. She loved every single child on that floor. I couldn’t fathom watching these children suffer day after day. Some of them surviving. Many of them dying. How could one not get attached to every single child in such a job? One explained it to me extremely well. She simply stated, “I do get attached to every child. And if they pass away, I mourn. I get angry. I feel deeply. But then I find a place in my heart where they’ll always stay. I keep them with me always.”

I took that bit of advice to my own heart when we started losing our little friends. Love them. Appreciate them for the lessons they’ve given us. Then find a place in my heart where they’ll always stay.

One of the things that always floored me was that many of the nurses on our unit were expecting children of their own. How could they have a baby when they were surrounded by sick children every day? I think that would scare the crap out of me. When I asked one of the nurses if she was afraid, she said no. What she said next would impact me in a way that I still carry with me to this day. She said, “My concern is that I’ll have trouble loving my own child as much as I love your son.” I smiled at her through my teary eyes and told her that her concern would quickly dissipate the moment she held her own baby. Of course, I was right. But I’ve never forgotten her words as they touched me very deeply.

Now, I cannot mention all the nurses we’ve had here as there have been so many. But I want to thank each and every one of you who have ever had anything to do with my son. Thank you for holding my hand. Thank you for making me laugh when I thought I couldn’t. Thanks for encouraging me when I had no idea what I was doing. And a VERY BIG Thank You for caring for my son AND my daughter.

And for calling me Mom.

It’s appreciation time for nurses AND teachers! Some of my very favorite people in the world are superstars in either occupation and while I appreciate them EVERY day, I’ll amplify it today with a little blogging love.

My first grade teacher was meaner than a box of snakes and could have easily set the tone for a lifetime of hating school. Oh wait. I kinda did. But I won’t blame her. I am convinced that I suffered from some ADHD (minus the hyperactivity component) and just couldn’t focus. However, there was no such diagnosis back in my day and I just had to muddle through until a teacher cared enough to reach out to the painfully shy and academically struggling – yet deliriously adorable – little Sarah. I’ll admit, all other teachers – besides the evil first grade teacher – did a pretty good job of showing me a lot of love. Miss Marshall, Mrs. Smith, Mrs. Worrell/Mrs. Toma and Ms. Kaschak got me through elementary school. Once I transitioned to middle school, I got lost. That sensation lasted until 10th grade when a wonderful Creative Writing teacher, Mrs. Doran, insisted that I put all those emotions of being lost into writing. I’d been keeping a journal since fourth grade (what I wouldn’t give to still have those!) but Mrs. Doran encouraged me to take it further. I also learned that I was pretty good at photography thanks to Mr. Moll. Without those two teachers, I probably would have slipped through the cracks entirely. When Mrs. Doran suggested I apply to college, I remember how foreign it sounded. I honestly never thought I’d go past high school. I don’t know why, but I just never did. Unfortunately, during college, I got lost again. I finished, but I wasn’t where I planned to be. By then, I’d abandoned writing and photography altogether – the two things I’d gone to school to further develop. I really regret that.

Regardless, many teachers put their heart and soul into developing these little people every day. It’s a selfless – and often thankless – job. My children have had AMAZING teachers from the very beginning. I love everyone in the Cherry Creek School District, from the teachers to social workers to administration. Everyone has been so accommodating and loving where Ben and Madeline are concerned. Madeline’s entire academic career has been a severe struggle until this year. Her teachers would often report that Madeline would simply “zone out.” She acted like school was something that was being “done to her” – almost like some sort of punishment. She was flat. She was glazed over. And anyone who knows her realizes that this is NOT her personality. Her third grade teacher, Mr. Campbell, was able to pull her out some. Madeline adored his energetic teaching style. And this year, Maddy has Mrs. Burgeson. This amazing teacher has been instrumental in helping us figure out how to help Madeline. And not to promote the use of pharmaceuticals, but using an ADHD drug for Madeline has made a WORLD of difference. If it wasn’t for Mrs. Burgeson’s support on this, we’d still be at square one. These teachers go above and beyond the classroom. It’s not just a job. I know they don’t leave the kids at the door when they exit the building. There is no separation. It is a labor of love. And I would be lost without their support.

I have to give special kudos to another teacher who has touched our hearts and will forever be a part of our lives: Ms. Brenda. She was Ben’s home/hospital teacher for a long time. I LOVE HER. She was so patient with Ben. She incorporated fun into his lesson plan. She came to us wherever we were. She saw Ben at his sickest. She saw me at my depressed worst. And when it came time for Ben to choose a hero for a school project, he chose her. Not a doctor or one of his parents or another family member, but our beloved Ms. Brenda. She has made such a rich impact on all of our lives.

Thank you to Ben’s teachers: K-Ms. Debbie; 1st-Ms. Gay; 2nd-Mr. Willsea; 3rd-Mrs. Burgeson/Ms. Brenda; 4th-Ms. Brenda/Ms. Cartwright; 4th (do-over) Mrs. Clayton; 5th-Mrs. Simonich and the sixth grade staff at Thunder Ridge Middle School for getting him started on his middle school journey (we’ll be back!)

Thank you to Mad’s teachers: K-Mrs. Curry; 1st-Mrs. Willsea; 2nd- Ms. Klem; 3rd-Mr. Campbell; 4th-Mrs. Burgeson.

And, of course, all the support staff and volunteers. Mr. Monley the art teacher, Ms. Willett in the computer lab, Mr. Smith in the gym, Mrs. Lemmon-Elrod in music… so many wonderful and giving people. I know I haven’t mentioned a few, but it doesn’t mean you’re not important! It just means that my brain is on overload.

All these wonderful people have more than made up for the Medusa I had for first grade. THANK YOU, Teachers, for everything!

It’s clear that I’m going to have to celebrate nurses in a different post (don’t worry, I can’t possibly let my appreciation for all our beloved nurses go unmentioned, tune in tomorrow.)

A thick stack of papers lay on the table before me. Only moments before I had shuffled through them all, one by one, perusing the ominous details and statistics of what may or may not happen. My mind was buzzing slightly louder than the fluorescent lighting above the conference table.

It was all very official. There was no plea bargain being offered. And it was apparent that this was the best deal we were going to get. I looked up from the stack of papers at the panel of doctors sitting across from me and shook my head yes. We’ll take the deal.

“Do you have any other questions?” The nice man sitting across from me – a doctor I’d grown to love and respect – had on his “serious hat” today. I could see the glint of compassion in his eyes. And the hesitation he held in his voice when I asked if he would do to his child what I was getting ready to do to my own. It was almost unbearable to realize that it didn’t matter what someone else would do in my shoes… this was the only option.

Sign here. And here. And then here. I so wanted my signature to be allowing something awesome: A dream home. A new car. Or, perhaps, new hire paperwork. Not signing something that would allow them to subject my son to poison and pain and possible death. How do you sign papers like that? I still don’t know how I made my pen scrawl my signature. Oh, wait. Cancer was holding a gun to my head. There was no choice but to try to stop it in its tracks.

I couldn’t think about the side effects now. I had to do what I could to save my son first. The rest would play out however it played out. At least, it would if he survived.

Well, now my friends, we’re here. Ben has fought. And fought. And fought. There’s the beautiful position of being cancer-free but now those evil side effects are rearing their ugly head. Short stature. Severe hearing loss. Scoliosis. Missing teeth and gum grafts. Learning disabilities. The inability to procreate. The threat of a secondary cancer. Or, the simple fact that he’s high risk for relapsing with the original beast.

I’m in a really foul mood today. I know it shows in my writing. But as I type, my son is sitting at the kitchen table struggling through a math lesson with his home/hospital teacher. He just threw up. He has a headache. He just wants to sleep. But, he’s dedicated to getting through learning how to multiply fractions or some nonsense like that. Who the frick cares? I can attest that he will NEVER need to know how to multiply fractions in his every day life. And, if by some weird chance he does? I think there’ s  probably an app for that.

Would I change subjecting him to all the experimental therapy? I don’t think I would. Or better stated, I don’t think I could. He’s still here. He has a reasonable quality of life. He is a bright, amazing, loving, caring and compassionate child. If cancer hasn’t made him a bitter troll like his mom seems to be (at least, how she is today) then I guess cancer hasn’t won anything at all. Side effects be damned.

Ben is winning. Take that, cancer. Oh wait. Take nothing.

You’ve taken enough.

 

 

Hey Pumpkin! Remember me? Ben’s mom? I know, it’s your birthday and you have better stuff to do than listen to this kooky redhead, so I’ll try not to take up too much of your time. 😉

I’ve always been able to depend on my writing skills to get me through pretty much anything. And as I sit here today searching for the right words to share with such an incredible soul on his special day, I feel so inept. So, as I turn off my brain and allow my heart to speak, here’s what it has to say: I hurt so much.

I know, not earth-shattering news, but that’s the truth.

When Ben was born and placed in my arms, the last thing I thought about was losing him. I simply assumed that he would grow up with nothing more than the average heartaches and trials that “normal life” usually brings. But in entering this world where children regularly die at very young ages, I understood that we would lose some of our friends. We’ve lost way more than I ever anticipated. Ben’s been fighting much longer than I ever thought he would. I believed that we would fight, win, and be done. But that’s never how it is, is it? Life is full of constant challenges. This world of pediatric cancer just does not give us stable ground to stand on. And the amount of loss has been staggering.

Darn it. This is about YOU, dear Justin. Not me. I can see you tapping your toe waiting for me to get off my philosophizing podium. Your life of constant challenges here on earth is done. And while so many tell me that I should celebrate you no longer being in pain or that you’re in a better place or any of those “soothing” phrases that are uttered after a stunning loss, my face contorts and cries BULL! It’s simply not okay.

I want you to know that we think of you often. Daily. I’ve noticed that my son hasn’t really embraced his Legos in the same manner as he did before you passed away. I know he’s hurting. I keep waiting for him to talk about losing you, but he’s just not ready. People keep saying he’ll be fine, but we know that’s not the case, is it? There is nothing “fine” about losing a dear friend. And “time doesn’t heal all wounds.” The sting might dissipate slightly but the fact remains that there’s still a gaping, Justin-less hole in our hearts. The silence is deafening. Nothing can ever make that better. We just learn how to navigate the loss. And right now, we’re still stumbling and banging into walls.

Geez. There I go again. I know you have Legos to build and friends to party with. You’re eleven, after all! Listening to your buddy’s mom ramble on about loss means minimal to you and I’m sure you have many more people waiting to spend time with you. But I have a favor to ask. Would you connect with all those buddies we’ve lost along the way? Let them surround you with love and celebrate the day of your birth. I can see all of you playing together. No IV’s. No mediports. No yellow puke buckets. No tears. Only joy and celebration. And if you could take a minute to encourage your fellow warrior, my son, and your friend, Benjamin. He sorely misses you. And I know he’s a little scared. Send him some encouragement, will  you? Encourage him to keep fighting. To keep being brave. To find the good in everything despite all this cruddy disease is so thoughtlessly throwing at him.

Thank you, dear, sweet Justin. And Happy Eleventh Birthday to one of the coolest Ninja’s I’ve ever known. Our lives are greater for having known you but ache severely over losing you.

We love you so very much.

I’ve had so many life lessons lately. All the changes have made me refocus my energy (which has made me WAY more energetic) and open my mind to new possibilities. None of these changes are bad, but they can be slightly uncomfortable during the transition. Kinda like a pair of jeans fresh out of the dryer. If you just move around in them a little bit and they’ll end up fitting perfectly.

One of the major changes has been a serious reorganization to my inner circle of peeps. I’ve added a couple of new key players. One of these new friends has been encouraging me in so many ways. We chat often and she is simply wonderful! Her inspiration and lessons have been invaluable on my new journey – to the point of my actually being excited to wake up in the morning. I can’t tell you how long it’s been since that’s happened.

I’ve also been working with a therapist who is challenging me all over the place. One of the biggest things we’ve been working on is my needing to treat Ben like a “well” child. I’ll be honest here, I’ve not done a very good job at that. I have kept in the back of my mind that Ben will not live long enough to be an adult. Especially after this most recent relapse when the term “chronic illness” entered our vernacular. The way it’s been explained to us is that he’ll be fighting until a cure is found or he dies. I’ve had a hard time getting past that. I don’t have confidence in anyone finding a cure for Neuroblastoma. And I know Ben won’t want to fight like this indefinitely. He’s already admitted to this. I’m trying to change my mindset – to hope for a cure – but it’s been so incredibly difficult. It’s a cold, hard fact that the people who holds all the money and power are not interested in helping these children. Their little bald heads are cute and everyone always says, “Awwwww, how sweet/sad,” but nobody does anything to level the playing field, despite the desperate pleas of their parents. It sucks.

Anyway, focus on what I can control, right? That being said, meditation has been my new best friend. I never thought I’d be successful with meditation because it is nearly impossible for me to focus my thoughts for more than two minutes. So, instead of forcing my mind to conform to what I’m “supposed” to do, I just let it happen. And last night, I had the most beautiful vision. I saw Ben playing in a green field dotted with wildflowers. He was running and spinning and doing many things that he normally doesn’t do. As I took a closer look at him, I saw that it was the same beautiful red hair, the same deep and knowing brown eyes, and his adorable smile that he rarely shares unless he’s truly joyful. In this image, the love emanating from him was nearly overwhelming. And then, I realized that his childish features had matured. He had a few wrinkles near his beautiful eyes. I saw his manly hand reach for a smaller one… that of a child. I didn’t get the feeling that it was his biological child and I couldn’t see the gender of the child, but I could feel that he loved the child as his own. There was also a woman. Her blonde hair was shining in the sunlight that surrounded my image. She was holding the hand of another child. They all seemed unbelievably happy. I don’t know if they were married but she had two children and I got the sense that she had lost her husband, as there was a sense of heartache to her. I also got the feeling that she was in a helping profession, someone who understood what Ben had gone through as a child. I watched from the sidelines as this fine young man – the son that I’ve raised – showed nothing but LOVE. It was the most beautiful image I’ve ever seen.

I’m not saying that this is how it will turn out for Ben, but I’m saying that this was the first time that I visualized him as an adult. It brought so many emotions, but none of them were fear that it wouldn’t happen. I’m not afraid. And even if that’s not the scenario that evolves for my son, I will live with that image forever in my mind. Until he changes it for himself. And I promise not to bully him if he chooses someone who doesn’t have blonde hair with the statement of “but she doesn’t fit my vision!”

In this moment, Ben is well. And this moment is all we have. What the future holds can change in the blink of an eye. But what I do know, right this minute, is that we are well. My son has no evidence of disease. My dogs are sleeping soundly. My fingers are wildly typing. My heart is still beating. And my son is looking at me. I swear… he just now said, “I just want you to be happy.”

So, in this moment, right now, I am.

I am happy.

 

Back when I was a fourth grader at Kirkersville Elementary School, I received a Valentine’s card from a boy I kinda liked that said “You’re a real sweatie.” Being a spelling bee aficionado wrapped in a freckle-faced, 40 pound frame, I was confused. I thought, “either he’s trying to tell me I’m a sweetie, or I have a body odor problem that I’m not aware of.” Instead of asking the boy directly, I spent the next several months sitting abnormally close to family members to see if they remarked on my sweat issues. Nobody did. I also spent an inordinate amount of time with my nose buried in my armpit, attempting to self-diagnose my potential issue. This exercise returned no solid evidence of being stinky either. Then, as any insecure adolescent would do, I poured over the deodorant ads in my sister’s hand-me-down “Seventeen” magazine. “Seventeen” was THE voice for all girls in the 70’s. Based on their expertise, I made the determination that when mom finally let me get deodorant, I would choose the pink “flavor” of Tickle (Google it if you don’t remember this brand.) And, eight years later, when I finally hit puberty at age 16, that’s exactly what I got. I could drive before I truly needed deodorant. Isn’t that weird? If I were a character in that book “Are you there God? It’s Me, Margaret,” Judy Blume would have had to write a sequel just for my character, because I was the lone friend who didn’t get her “monthly visitor” until she was nearly an adult. That book really messed me up.

Today, this late developer has a fourth-grader of her own, who appears to be achieving puberty as we speak. I’m gingerly navigating my daughter’s need for a training bra (a stupid name for a bra, BTW) and the emotional outbursts that come from absolutely nowhere. Seeing how she just turned 10 a few days ago, I think we’re in for a roller coaster ride through the actual teen years. Lord, have mercy.

Meanwhile, my nearly 13-year-old son has nary a drop of puberty in his sweet system. He recently had a checkup with his Endocrinologist, and while his height and weight do not register on the chart of “normal,” we were assured that he is growing, albeit very slowly. And an X-ray of his wrist shows that his bone age matches up with his chronological age. The doctor wasn’t expecting this (she thought it would show as much younger) but this result is an indication that he’s kinda on track. Growth hormones are NOT a possibility because if Ben did have some cancerous activity in his system, then the growth hormones would encourage the cancer to grow… and I think we’re all on the same page of not wanting that. So, Benjamin will just have to learn that having short stature is his destiny.

He is so graceful when publicly dealing with people who don’t know his true age. One evening, we were out to dinner at a Hibachi place. You know, the kind of joint with a communal table, pieces of broccoli flying through the air, and streams of fire shooting toward the ceiling. Exciting stuff. The people to the left of us kept trying to engage Ben in conversation, which, if you know The Bean, he is a very to-himself kind of character. He’s extremely polite, but NOT one to chat needlessly. Anyway, the nice gentleman was trying so hard to talk to Ben, but was talking to him like he was a toddler. He mentioned being able to drive and said “That’s a long time away for a kid your age.” Ben looked at him and said, “Actually, sir, I’ll be able to drive in less than four years.” The man reddened with embarrassment and started to say “Wow! But you’re just so….” Thankfully, he stopped before he finished his sentence. Ben said “That’s okay, sir. Many people think I’m a lot younger than I am.” But when we got home he confessed that it bothered him. He is very sensitive about his physical appearance. The man was really trying to be a sweetie, I’m not upset with him for trying to engage Ben. It’s our situation that I’m upset with.

But if they only knew what he’s seen in his lifetime. They’d understand that he’s never had a chance to be a child. He’s always been an adult. When I look back on my time of being 12, I remember the insecurities of not being like my peers. I was tiny. I was freckle-faced. My name didn’t end with a “y.” God, I really wanted a name that ended with a “y.” Sandy. Holly. Mandy. Those were clearly the names to have. Regardless, my trials were minimal compared to what my son is having to endure. On top of being tiny and freckle-faced, he occasionally doesn’t have any hair. He’s never participated in team sports due to stamina issues. He wears hearing aids. He’s lost a lot of his friends to cancer. And he worries about getting the chance to grow up himself.

But we’ve learned that it is what it is. We have decided to find the joy amidst all the crap and celebrate each moment as it comes. It doesn’t stop people from being cruel or simply insensitive, but we’ve found a way to hold our heads up. We’ve learned that there’s a lot of thoughtless people out there (people who are truly sweaties) but we’ve also learned that there are many people willing to do all they can.

Without these people – these true sweeties – we’d have a really hard time finding the joy.

Thank you for helping us see past the devastation. And puberty, or lack thereof.

 

 

 

 

We LOVE reaching milestones and today is a BIG one! My beautiful daughter, Madeline Grace Brewer, is ten years old!

I was seven months pregnant with her when her brother was first diagnosed with cancer. I spent the last six weeks of my pregnancy fearing for Ben’s life and wondering how on earth I was going to bring an infant into this very scary world that was unfolding around us. My toddler was extremely sick. We were basically living in the hospital while he endured toxic concoctions that were, hopefully, saving his life.

Those first few weeks of Ben’s fight were terrifying. Everything we researched about Neuroblastoma pointed to our need to accept the fact that we would lose our son. I would wake up in the middle of the night hyperventilating with fear, the plastic coated hospital couch slick with my sweat. Without waking my son, I’d shove my swollen feet into the only shoes that would fit: slippers. I’d slip out into the bright hallway and walk around the halls of the oncology unit, listening to nurses chat, machines beep, and children trying to rest through courses of chemo. The nights were the worst. All the sadness lying behind each door. But the halls were a safe zone. Nothing bad happened in the halls. So the halls held my solace. And as I forced my fat feet to take me around the loop one more time, I tried to think how I was going to bring a new baby into this environment. How could I divide my attention between the two? How would I make this child feel loved when every ounce of energy I had was going to my son?

And was this baby going to get to know their brother? My heart broke over something new each and every day.

At the end of March, our nurse practitioner handed me the therapy schedule for April. I looked at it to find it was packed full of chemo, procedures, appointments, meetings, and miscellaneous other necessities for Ben’s treatment. I pointed to the paper and said, “I’m supposed to have a baby sometime this month.” My original due date fell on April 10th, but that day was already filled with appointments. She said, “Pick a day and go have your baby.” I quickly questioned, “You can do that?” She shook her head yes. So, I did. I called my OB/GYN and chose Sunday, the fourth, because that would give my baby the birthday of 04/04/04. I thought that would be pretty cool. However, my doctor said that he didn’t work on Sundays unless he had to, so I picked 04/03/04.

Ben had been discharged for the weekend, so I stayed up nearly all night Friday, writing instructions for my parents on what to do if anything went wrong. I laid out all the meds. All the IV nutrition stuff. All the emergency contacts. What to do in case of every single issue I could think of. I hadn’t been away from Ben since his diagnosis, so my stress level was off the charts. Then, after just a couple of hours of sleep, I ran through all the information with my parents, then headed to Riverside to have my baby.

The nurse was waiting for us. The hospital knew all about Ben’s situation so they found the sweetest nurse ever to take care of me. She was so gentle and loving. She made sure I was comfortable. She sat by my bedside and held my hand. At one point, we shared some tears. She said she was sorry about my son but wanted to do everything she could to make this delivery as easy as possible. Reflecting on Ben’s birth, easy-peasy was NOT the description I would give it. Ben refused to come out for over 24 hours. There were scares with my blood pressure. Fears that I would have a seizure. Concerns that the baby was in distress. And when my baby Ben finally arrived, he had the pointiest head in the world because he’d spent over a day stuck in the birth canal. It was anything but smooth. So, I was highly concerned that history would repeat itself.

For this birth, I arrived at the hospital at 8 am. Got hooked up to pitocin at 9 am. They broke my water sometime around 11 am. Then, at 1:19 pm on Saturday, April 3, 2004, I watched in the mirror as my beautiful little girl was born. We didn’t know we were having a girl. In fact, I thought I was having a boy since I carried this baby exactly the same as Ben. I wept as they handed her to me. My little Madeline Grace. She was perfect. Absolutely, wonderfully perfect.

Then, I slept. Matt went home to relieve my parents. My sister spent the night with me. We watched Donald Trump on SNL. Madeline was quiet. Perfectly quiet. We left the hospital less that 24 hours later. Ben met his sister and instantly loved her. He sat on the couch as I put her on his lap. He looked at her for a while with the sweetest smile on his face. Then he said, “I think she’s kinda too heavy.”

The next day, we were back at Children’s for Ben. Madeline learned to sleep right next to me on the plastic hospital couch. She was so well behaved. Other than having some jaundice issues that regulated on their own, Madeline had absolutely no medical needs until just after her first birthday, when she was hospitalized for rotovirus. She was on the sixth floor in the infectious disease unit while Ben was on the fifth floor in the oncology unit. I kid you not. Both of my children were inpatient at the same time. I was not laughing when the ER staff asked, “Didn’t we just admit a Brewer?” to which I stated, “You did. That’s my kid, too.”

This journey has been anything but easy. But I am so thankful to my Madeline Grace for being a beautiful, patient, loving, caring and compassionate young lady. She has a quick wit. She loves Monster High Dolls. She enjoys scary stories. She wants to sing on Broadway some day. And she often lives in the shadow of her brother’s relentless illness. She has taken on a tremendous role from the very beginning of her life: to bring a bit of levity to all the madness. And that’s exactly what she’s done. And she’s done it with Grace.

I had nothing to fear. She knew her presence would HELP, not add more stress. She was a wonderful distraction from the grief. Honestly, I believe this little angel saved my life by giving me something so beautifully positive to focus on. She did that for all of us.

Thank you, Maddy, for showing me that there is calm in the storm. I appreciate you. I adore you. I am proud of you. I love you. With all my heart.

Happy Birthday, beautiful, precious Princess.

I haven’t posted for well over a month. So much has happened and I’ve wanted to write about it all, but when I sat down to type, my heart just said, “meh.” I’ll admit that I’ve been overwhelmed in nearly every aspect of my life lately.

Some good things have happened: I met Tracy (the woman who created the non-profit, Icing Smiles) when I attended the wonderful “Buttercream Ball” in Baltimore, MD. Tracy is so sweet and gracious and amazing and, well, beautiful! For someone to so selflessly give to others… all with the underlying hope of making a sick child smile – that’s a person who has won my heart. Receiving the Yoshi cake in NYC for Ben’s ninth birthday was definitely one of Ben’s most treasured memories. I know I’ll never forget it! It was an honor to talk about our experience and how happy it made all the other kids staying at the Ronald McDonald House. One beautiful cake spread so much joy! Plus, it was a great reason to get dressed up. I’d forgotten that I’m actually quite fun given the right setting. I danced, I enjoyed the open bar, I thought about eating some beautiful looking food but then opted for another trip to the open bar… it was amazing. I also met some awesome people. One new friend – let’s call him Jim, because, well, that’s his real name – has me convinced that he is my long-lost brother. We’re both kind-hearted smart-asses, which is one of the rarest combination in all the land. And we can both quote all the important lines from “Meatballs.” He is my most-treasured new friendship of the Millennium.

Other good stuff: Ben still shows as having no evidence of disease… it seems this low-dose chemo is working for him. This particular study was supposed to end in July or August, but we just learned that it might get extended for another year. This is GREAT because it seems to be working for Ben. Since he has chronic disease, he will most likely NEVER be able to be off therapy because Neuroblastoma has shown us that it WILL come back. We can’t have that. So, an extension is very welcome. As long as his heart can tolerate it, then it’s all good.

Then, here’s where the good gets mixed with the not-so-good. We are officially on Medicaid. It has given me some insight to what government run health care will look like for the masses. And I don’t think you’re gonna like it. Don’t get me wrong, I am grateful to have the coverage… I haven’t had insurance for a really long time and can not afford the “affordable health care” plan nonsense. Anyway, I called all the providers on the Medicaid list of approved doctors and guess what? NOBODY WAS ACCEPTING NEW MEDICAID PATIENTS! I finally found a PA at an Urgent Care who would take Medicaid patients on Mondays only (no joke.) Mondays are Ben’s long days at the hospital, so it was hard to schedule at first. But, I got in and had everything checked.

Here’s what we learned: My thyroid levels are way off. I have suspected arthritis in the hand I use to color. And, I have a freaking lump in my left breast. Thyroid levels will be corrected with new medication. The arthritis medication is not approved by the government, so my coloring days are currently limited. And, fortunately, I can get a mammogram for free because it’s diagnostic. Now, if I actually have cancer, I’m going to blog about all the nonsense I have to go through to get care because I’m sure the government will have to approve if I’m worth saving.

I have to state here that I used to be a social worker, so I really do care about my fellow human beings. I want everyone to be cared for. As for political leanings, I could not bring myself to vote for either mainstream presidential candidate last election because they are both eerily soulless. I don’t consider myself to be Democratic or Republican, but I am left-leaning in my beliefs. However, I’m offended by everyone being offended all the time. We’ve become too freaking sensitive. Me included.

So, when I picked up my thyroid medication yesterday, free-of-charge, I shouted out to everyone within earshot, “Thanks for paying for my medication, tax payers! I’m officially “in the system” and YOU have to carry MY load.” This was in Target, by-the-way. I refuse to lower myself to WalMart standards just because I’m officially poor. (Actually, I like WalMart, too.) You should know that I tried hard to set myself up for a successful life – one where I wouldn’t have to ask others to help me and my family. But, in a humbling turn of events, we have found ourselves in a horrible position. I have given up everything I thought I planned so carefully for in order to care for my children – one of them chronically ill. I’m embarrassed to have to ask for help. But we’re now at the point where the options are limited. I pray that I won’t have to use this for the long term.

But if I do, I’m buying shrimp with my food stamps. I’m entitled to some shrimp just like the rest of the welfare recipients.

Ah. This is the good life. Wanna trade?

That’s what I thought.

 

Oooooh, doggie! My Facebook news feed was on fire last night regarding a sign in front of a bar in Las Vegas. The sign read, “The Broncos Couldn’t Beat the Kids From St. Jude’s.” Now, I appreciate some adolescent humor from time to time, but I’m more of a fan of the self-deprecating type. Don’t make fun of others. Unless it’s behind their backs, right? NEVER on a public billboard for crying out loud. I’m just kidding. As a “cancer mom” I am offended by this sign, because my son is much stronger than the turds who came up with this “brilliant” message. I told the establishment what I thought of their poor taste in the following “review” on their Facebook page:

“I told my 12-year-old son about this sign, since this type of humor is clearly geared towards middle school aged children. However, this particular 12-year-old boy has been battling Neuroblastoma for the past 10 years. Now, at 53 lbs, I’m sure he couldn’t really challenge anyone to anything physically taxing because cancer has ravaged his body for a decade. But, as a human being? He has more class in the massive tumor they removed from his abdomen than you have in the whole lot of you. There’s a little thing called “compassion.” Maybe you should get some.”

BURN! Right? I thought it was a pretty good retort.

The odds are, however, that they don’t give a crap. This sign brought them a lot of attention and, as I have heard before, there’s no such thing as bad publicity. I’m sure they won’t feel the need to attend compassion classes or change their views. Yes. Cancer kids are physically weak. You stated the obvious, genius. Now, I’ve stated my view. I let them know I thought their comment was heartless. But I cannot change their minds, nor will I waste any more of my precious time yelling at them. Moving on….

Interestingly enough, ALL the news I get is directly from Facebook. I no longer consult the news for anything. Weather? I know what it’s like all across the Nation AND how everyone feels about it. News? Anyone important who has died will show up on my news feed. TV shows? When someone posts “NOOOOOOO!” followed by “Watching Downton Abbey,” I know some serious baloney went on before I even watch it (do they FORGET I’m in a different time zone? It’s not on here yet!) Or, should I invite Rhonda to go out to lunch with me? No. I know she’s in Portland on business. (She’ll be humored by this… I’ve never asked her to lunch, but now that she’s back from Portland, well, I guess I have to ask her out to lunch now! How’s next Tuesday, Rhonda?)

So, I didn’t even know about the Coke ad until I opened up my news feed. I didn’t watch the Super Bowl because I’m not a football fan. Oh yeah, and I was at the ER with my son right before it started. Kinda had other stuff going on.

“OMG… ENGLISH, people! I’ll never drink Coke again because “America the Beautiful” is to be sung in ENGLISH!” So, based on the commentary on FB, I watched the commercial. Now, I hate Coke because of how it tastes. I’m a Pepsi product fan, namely Mtn Dew. NOTE: This is NOT a continuation of my Colorado Avalanche obsession, I would love my AVS regardless of if they played at the Pepsi Center or the AstraZeneca Prilosec Arena. (Cancer moms, AstraZeneca also makes EMLA. I would have used that reference instead of Prilosec, but nobody would have gotten it but us. I’m thinking about ya, though!) Anyway, back to the ad. I watched it. I thought it was nice. Now, I know there will be backlash, because an alarming amount of my FB friends were bothered by it. I have a feeling, however, that the Facebook friends who were offended by the commercial are not the same audience who are reading my blog. But for those who DO read my blog and DIDN’T like that commercial, bear with me.

I tried to figure out how it was threatening. Yes, they were singing about America in languages other than English. But, no matter WHAT the language was, it was stating that AMERICA IS BEAUTIFUL! That’s the song they were singing! Not, I hate America and I’m gonna blow it up while you’re watching the Super Bowl. Now, I’m sure there ARE some people out there singing a song like that and even making PLANS to do so! But this wasn’t it, friends. We ARE a melting pot. We ARE a country made up of many other Nationalities. Over the years, my gene pool has incorporated MANY Nationalities, including Native American, Welsh, and Irish, just to name a few. I’m a mutt despite looking 100% Irish (yet claiming to be a Viking.) But, I truly consider myself to be an AMERICAN. And if I moved to another country, I would do my best to assimilate… learn the language and respect the cultures but hold true to who I am at heart, which is an American. I KNOW there are an alarming amount of people here in America who do not learn the standard English and choose to hold true to their own customs. My neighbor is one of them. Her English is extremely limited. But here’s what I appreciate about my neighbor: she saw my bald son when he relapsed. Her reaction was “Oh. Ohhhh. Ohhh. So sorry. Poor baby.” Compassion is universal. And then, when Justin died, I was standing outside with my dogs and crying. (I can multitask.) She came out with her dog, Mandy. Now, Yoshi and Mandy have a “thing” going on, so as they were cavorting, she noticed I was crying. She came over and hugged me hard. She said, “I’m your friend. I’m your friend.” Now, that sentence alone proved that she knew more English than I know Spanish, and I think that I’m really missing out on something special there. I don’t give a crap what language she speaks, from what she’s shown me, she has more compassion in her heart than people who are pissed off about others thinking America is Beautiful in their Native language.

Also, I have to state here, that the German band “The Scorpions” do not speak a word of English. All of their songs are translated into English. They compromised their Native tongue for US, people! How many sacrifices are we expecting our International friends to make just to make our narrow minds happy? (BTW, this remark is meant to be a funny side note… I seriously don’t want to offend ANYONE!)

The point I’m trying to make is that there is ALWAYS going to be SOMETHING that offends SOMEONE. My hot button is Childhood Cancer. I know there are many other folks who could give a flying crap about Childhood Cancer, including the American Cancer Society and the NIH. But that’s my passion. Others are passionate about Animal Cruelty. Veteran’s Affairs. Human Rights. The Second Amendment. Legalized Marijuana. Religion. Politics. The list is never-ending. But what we’re forgetting is that there has to be an element of RESPECT for others. Yes, there are so many out there who don’t respect us, but shouldn’t we be the bigger person instead of sinking to their level? WWJD, folks?

So, while many of my conservative friends are going to holler about my being Un-American, I’ll have to disagree. I’m an American. A proud one at that. I agree that there are bad people out there who DO threaten our freedom, but Coke isn’t the issue. After all, they just wanted to teach the “world to sing” back in the 70’s – and with this ad, I believe they accomplished their goal.