Keep out of the reach of children.

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.

 

 

Happy Birthday Justin!

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. ūüėČ

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.

It’s all good….

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.

 

“You’re a real sweatie”

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.

 

 

 

 

Happy Birthday Maddy!

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.