Guess what?

September is Childhood Cancer Awareness Month. Correct? I mean, my loyal readers should know this by now, right? My Facebook followers have seen many pictures over the course of Ben’s nearly decade-long fight against neuroblastoma, yes? I mean, raising awareness is kinda what this month is about and that’s where I’ve been focusing my energy. Drudging up tragic memories, sharing harrowing experiences, celebrating triumphs, mourning losses.

If you don’t like it, please, let me apologize for offending you.

But guess what? I’m offended that you can’t take five minutes out of your day to care. Yes. I talk about it all the time. I won’t turn off my “nozzle” that spews nothing but childhood cancer all the time. I don’t stop after September morphs into Breast Cancer Awareness Month (otherwise known as October) and I’ll NEVER stop.

Part of raising a child is to support them. To love them. To encourage them. To teach them. And if I can take five minutes out of my crazy stressful day to read about your child excelling in sports or acing a spelling bee or something cute they’ve said or done, (all of which I thoroughly ENJOY hearing about) then you can show the common courtesy of affording me the same opportunity. My news isn’t always good. Sometimes, it’s downright dreadful. But Ben deserves every ounce of awareness that I can drum up. He has lived a life that NO ONE wants to live – that no one deserves to live.

If you don’t like it, you know what you can do? Ha! Bet you thought I was going to throw some four-letter words your way, didn’t you? No. You know what you can do? You can help CHANGE IT.

I’m not Sally Struthers begging you to feed the poor in Africa. I’m not a PETA advocate begging you to stop abusing animals. I’m not even a St. Jude commercial begging for contributions. While I think all these causes are extremely worthy – I AM a bleeding heart liberal, after all – I’m just asking you to follow Ben’s journey and find it in your heart to care. It’s personal to me because it’s personal to him.

Ben is an extraordinary young man. And if his cancer offends you – if my raising awareness offends you – then do what so many others do and look the other way. I don’t want your hateful words. I don’t need you talking behind my back saying “I wish she’d move on. Everybody KNOWS he has cancer.” If you don’t want to hear about it, help me CHANGE it. Or, crawl back in your hole.

Now, I need to let you know that all of what I said above isn’t just from me. I’ve been hearing over the course of this month that many people from the pediatric cancer world are getting flack from others for talking non-stop about childhood cancer. They’re tired of hearing statistics. They’re tired of seeing sad pictures of sick children. They’re tired of cancer, cancer, cancer. Well, guess what? SO ARE WE!!! Are you ignorant to think we enjoy this? Are you really that misguided that you think we have nothing better to do with our time? THESE ARE OUR CHILDREN! We’re SAD! We’re DEVASTATED! We’re BROKEN! And yet, we’re PROUD. This is our life and we must make the most out of what we’re given.

I read where one mom received a reprimand from an acquaintance stating that they had never had a conversation where he didn’t hear about her child’s cancer. He felt sorry for her that this was all she had to talk about. Geez. We are here, our hearts completely exposed, and their answer was to rub salt in our wounds. Excuse my language, but what a d*ck! Unfortunately, though, this is not an isolated event. Someone posted on Ben’s blog a few years ago “I hope your son dies.” Now, I know my job is to brush that off and chalk it up to someone being a complete a$$hole, but it ripped me to the core. I don’t think I’ll ever forget that nugget of hatefulness.

For my fellow cancer families: there are some people who will never change their minds. We can’t make them think differently. Not everyone is going to jump on our bandwagon. But what we’re doing is the right thing. September is ours to spread the word. And for those of us who live with it every day, guess what? It’s okay to talk about it any old time you want. It is, after all, a free country.

Dismiss the hurtful people as best as you can. Pray for them if that’s your thing. But then MOVE ON. You know what you’re dealing with. You know how hard it is. And no matter what happens, know that I am always on your side. ALWAYS.

I will NEVER give up. For all who have fought and won. For those who have fought but lost. For those still fighting. For my Ben.

 

Hand holding

Saturday night was the annual Miracle Party, which honors cancer kids nation wide. It was started here in Denver by a fellow “cancer mom” Stacy. Her daughter, Kennedy, battled cancer a few years ago and it was during that battle that Stacy decided to put together a party for families dealing with this cancer baloney and give them a night to cut loose. Ben was one of the first honorees, and each year we’re invited to get our groove on. It has morphed into an epic event.

The night is filled with music and dancing and games… all sorts of fun stuff for the families. This was the first year that I went solo since Ben and Madeline were with their dad. I debated on whether or not to go at all. People want to see Bean and Mad, not me. But, after procrastinating all day, I finally showered and got my butt in the car. I’m certainly glad I attended in retrospect, but it was really, really difficult without Ben and Madeline there.

I’ve grouped families into three categories: done with that mess and the kiddo survived, still battling (but emotionally done with that mess), or done with that mess with the unthinkable outcome. It doesn’t matter where you are in your cancer journey, I believe that it will always be exhausting. Yes, it makes us stronger and more appreciative and blah, blah, blah. But it wears a person out. And now that Ben has relapsed a second time, I kept seeing the “Oh, I’m so sorry you’re going through this again” face. Those with surviving children don’t want to think that it could happen again to their child. Those still in the trenches are right there with us. And those who have lost don’t want to remind you of what could still happen.

But we try to celebrate the night and forget about all that exhausting nonsense. And when the “Angel Tribute” plays we all come a little closer. It’s much like the montage they play every year at the Oscars of all the actors who have died, but these are children. And there’s always one that catches me off guard. When I’m watching the Oscars, it might play out like “Oh no! I didn’t know that person died! When did that happen?” But I don’t get all emotional and think about it for weeks on end.

This time when the tribute played, I happened to be sitting next to Justin’s mom, Lori. I know I’ve mentioned them before, but here’s a brief update: Justin and Ben both have neuroblastoma. Their diagnoses were exactly the same. Justin is two years younger than Ben but they were both diagnosed as toddlers. Justin is starting on his eighth year of treatment and we’re just finishing our ninth. The major difference is that Justin keeps relapsing. And relapsing. And relapsing. He’s had NB seven times. They’ve tried everything to keep it under control and now they are on their last treatment option. I can’t even begin to wrap my brain around that.

Anyway, I love Lori to pieces. We aren’t really social with each other but we always see one another – at the hospital, at functions, and in NYC for treatment when both kiddos were on studies. The crazy thing is that we live less than five miles apart but we saw each other more often in NYC than we did here in Aurora. Crazy. We have a lot in common. Too much, perhaps.

When the Angel tribute started, I scooted my chair closer to Lori and grabbed her hand. I was already tearing up. And as each sweet angel flashed up on the screen I tried to remember them as they were. There were a few I knew that Lori didn’t, but she knew almost all of them. And we made an estimate that out of the many who had died that probably over 50% of them had Neuroblastoma. It accounts for 15% of all pediatric cancers but has a very high mortality rate. And with each relapse it gets tougher to beat.

Logically, I know this. But emotionally, I flipped out. I held her hand tighter and I swear I could feel her knowing what’s coming. It wasn’t fear. It wasn’t acceptance. It was not defeat. It was pain. And as I rubbed the top of her hand trying to eradicate what was excruciatingly palpable, I felt helpless.

She said to me that she just wants to come to next year’s party with Justin in tow. And dear, sweet Lord, how I want that, too. I simply cannot stand this life sometimes. I don’t want to think about losing Justin. Or Ben. Or any of the children who have already left us. It makes no sense. And it hurts tremendously.

So, I held her hand for as long as she let me. I tried to let her know through my touch that I would always be available to hold her hand. My eyes, still teary, let her know that I understood the pain to some degree. I wish I had answers. I wish I could make it stop. But as I watched Justin run around as if he were a perfectly healthy 10-year-old, I realized that he’s making the most out of his “right now.”

I’ll hold that lesson in my heart forever.

Thanks for the party, Stacy. Thanks for the love, friends. Thanks for letting me hold your hand, Lori. Thanks for teaching me how it’s all done, Justin.

Being twelve

As I was picking up Ben from middle school the other day, I watched two young girls as they crossed the parking lot. They were dressed exactly alike: shorts, matching shirts, tennis shoes and scarves tied around their heads to hold their very similarly colored hair out of their beautiful, young faces. In one arm they held their books. Their other arm was attached at the hand, swinging in a pendulous motion as they animatedly talked about nothing important. I soaked up their joy at being in each others’ company. True friends.

I closed my eyes and remembered my own childhood friends. Talking about nothing important. Giggling about boys. Picking out matching shirts together. Our shirts were white sprinkled with little multicolored stars. We’d call each other the night before to make sure we wore our matching shirts on the same day.

Oh, making phone calls. We had a party line. I had to monitor the phone regularly until my Chatty-Cathy neighbor decided to hang up so I could use the phone. And then it was a crap-shoot to see if my call would actually make it through to my friend… that incessant busy signal was maddening. My BFF had a Chatty-Cathy neighbor, too, and it was an Act of God if we ever got to actually speak on the phone. But once we made the connection, we made the most of it, talking for hours until somebody else cut in or our parents made us disconnect. I guess many would say these were simpler times, but I kinda enjoy having the freedom of calling whomever I wish whenever I want and having the luxury of leaving a voice mail.

I don’t remember being two and a half. I don’t really remember being eight. But I certainly remember being 12. I remember a lot about that age. I remember the insecurity I felt as I started to like boys. I remember gazing at my reflection and wondering when I would start developing like my friends (turns out I wouldn’t do this until I was nearly 17!). I remember struggling with the flood of those pre-pubescent hormones, crying one moment and laughing the next. I remember caring what everybody thought about me and wondering if I was doing anything right. Twelve was a hard age for me.

And when I think about my son’s development, my heart breaks. He was two and a half when he was diagnosed. He was eight when he relapsed. He was nearly twelve when cancer decided to make a third appearance. He doesn’t have just the normal insecurity of being a pre-pubescent boy, he has all this nonsense to deal with, too.

So, I am understanding when he wants to wear a hat to school to cover his sweet, bald head. I always thought that he was adorable as a baldy, but it makes sense to me when I put myself in that delicate 12-year-old psyche. I have to keep that in mind. My God. Life was hard when I was 12. I cannot begin to imagine how hard it is for him. Like me, he doesn’t remember being two-and-a-half. He barely remembers being eight. But he’s living as a 12-year-old. One who is painfully smaller than the rest of his peers. One who struggles with what he sees in the mirror. One who wonders when he’s going to start developing. One who simply cannot participate in the activities that his peers do because cancer is a freaking bitch.

The dismissal bell rang and I pulled myself out of my beautiful, yet painful, memories of being twelve. The girls had long since passed my car and I was anxious to get to my Ben. My beautiful son, who always puts a smile on my face. I’ve learned to let him take the lead on whether he hugs me or not when we’re first reunited. I know this age is so delicate. On this day, he put his arm around my middle and leaned into me. I leaned right back and kissed the top of his ball cap, longing to feel the soft fuzz of the newly growing hair lying beneath, but knowing that removing his cap to do so would be so embarrassing for him. A group of boys nearby were tossing a football around and it fell short right in front of Ben. He picked it up and chucked it in their general direction. It was not a stellar throw. It barely made a dent from a trajectory standpoint. The boys walked over and picked it up and Ben looked at me and said, “I know that sucked. But I felt like throwing it anyway.” It made me sad and happy all at the same time. Apparently, he doesn’t have all the insecurities that I had as a 12-year-old, despite the effects of cancer ravaging him of his pre-pubescent rights.

My son is not the typical 12-year-old. And while some of that makes me very sad, I have to say that I am also very thankful. He’s a loyal friend. He’s a compassionate soul. He’s so smart and introspective and loving and wonderful. Who gives a shit if he can’t throw a football? I don’t want him to be painfully different from his peers, but the fact of the matter is that he is different. The average 12-year-old probably isn’t going to recognize how beautiful Ben is right now, but I’m guessing they might when they’re older.

 

I hope Ben can see through his being twelve and recognize how awesome he is. He is a hero to so many. I can’t imagine being twelve and dealing with what he’s dealing with, but he’s navigating it, which endears him to me all the more.

I’m proud of my Ben. And while I wish he could do all the things that his peers can do just so he could feel more comfortable with himself, I recognize that it doesn’t really matter in the whole scheme of things.

He’ll get through this. Just like he gets through everything else.

And football is dumb, anyway. 🙂

Hand print

As a cancer patient, Ben has had some pretty cool opportunities. He’s been on the JumboTron at Coors Field for a Starlight event, he participated in a fashion show with the Colorado Avalanche, he was the featured kid for the Wendy’s International LPGA tournament, he got a Make A Wish trip, he’s met some pretty important sports stars, and has received a variety of swag from Nintendo, etc.

One of my favorite memories, however, was the day he was invited to participate in “Hyundai’s Hope on Wheels” event. Hyundai annually donates a car that travels to a variety of Children’s hospitals around the United States. Pediatric oncology patients are then invited to place their painted hand print on the car, which is then driven all over the US to raise awareness for Childhood Cancer. It’s a pretty cool event.

Our opportunity to leave Ben’s mark was in 2005. We were living in Ohio at the time. The lady in charge of awesome hospital stuff, Elaine, was always very good at spreading the word about upcoming events. She called me the day before to let me know that the Hyundai would be parked outside of the hospital and Ben should stop by if we were going to be around. As it happened, Ben had scans that day, so we would be at the hospital a good chunk of the day. I told Elaine that we’d do it if the timing worked out.

Scans were always a production, especially at Ben’s age (he was three at the time.) He wasn’t able to stay still for hours at a time so he needed to be sedated with propofol for the length of the scan. The nice thing about propofol is that it sedates very quickly and the patient wakes up shortly after infusion stops, so there’s not a lot of unnecessary downtime. Well, this particular day, Ben had a couple of scans so he was sedated for a while. After he was finished I stuck his cranky butt in a wheelchair, tried to smooth down his incredibly unruly bed head (he has to lay down for all the scans, so his hair got super crazy from sweating and sleeping for so long) and left the hospital.

As we left the building, we rolled right smack into the middle of the Hyundai event. The crowd hushed as we walked out, looking at us like we were rudely interrupting something. I was a little embarrassed, but Ben was so cranky that I imagined he was giving everyone the finger. Elaine’s high heels clicked over the cement as she came toward us, grinning from ear to ear. “SOOOO glad you could make it, Ben!” He glared up at her with a “just leave me alone” grimace. I leaned down and said, “It’ll only take a minute, Ben. Don’t you want to put your hand in some paint?” I could tell he was thinking about it as we joined the circle of people. I didn’t know that we’d have to wait for a while.

BIg checks were presented. Hyundai Big-Wigs gave speeches. Hospital representatives accepted with hearty thanks. Ben said grumpily, “Can we just GO?” His rooster hairdo flopping from side to side as his level of disdain soared. I calmly said, “Okay, let’s scoot,” and just as I was turning to wheel him away, they announced his name over the loudspeaker. I abruptly turned him around and said excitedly, “Oh! Ben! That’s YOU!” and he said, very loudly, “I JUST WANT TO GO HOME!”

I plastered a smile on my face and wheeled Ben up to the pristine white car. The circle of people who were just moments before giving us looks for so rudely interrupting were now smiling and waiting for Ben to take his turn. A photographer stood waiting to capture Ben’s special moment, camera poised and waiting to snap away.

An unknown representative held out a plate full of red paint. Ben looked at the person holding the paint, then looked at me as if to ask, “are you sure I can put my hand in this paint? I usually get in trouble for these sort of shenanigans at home.” I gingerly encouraged him to go ahead. He delicately placed his hand in the paint, admired his red palm, then sternly stated, “Let’s go home. NOWWWWWWW!” I explained that this was the part where he got to put his hand on the nice white car, but he wasn’t having any of it.

Ben is usually not a crank-a-saurus, but he was in RARE form on this particular day. And his hair was just as angry, wobbling like a rooster having a seizure. He shrieked that he would NOT put his hand on the car. So, I put on my mom voice, locked the wheels on his chair, and leaned down near his face. “This will just take a moment, Ben. Everyone is waiting for you.” I was mildly embarrassed as I pride myself on my children rarely having major meltdowns. They just don’t behave that way. But since Ben had been highly sedated just an hour before, I blamed it on the drugs.

Ben looked at his hand, looked at the car, then looked at me and said, “NO!” The poor photographer, he nearly had a coronary running all over the place trying to find an angle to capture us where Ben’s hair wasn’t too crazy or he wasn’t spitting at his mom or mom wasn’t sweating profusely trying to get her toddler to cooperate.

Then it happened. I grabbed his hand. As I pushed the red palm toward the car, Ben pulled back with all his might. “YOU. WILL. (grunt) DO. THIS. NOW. OR. (grunt) NO. FUN. FOR. (grunt) YOU. EVER,” I said this through gritted teeth as if I were practicing my ventriloquism act. Really, though, I just didn’t want the photographer to take my picture while I looked too mean. And as I was pushing and Ben was pulling, he was doing his own under-the-breath swearing. “I. DON’T. WANT. (grunt) TO. DO. THIS. YOU (grunt) EVIL. TROLL.” He didn’t really say that, of course, but since pictures are worth a thousand words… this was my interpretation. That poor photographer gave up and shot us at our worst.

Ben’s hand print IS on that 2005 white Hyundai, so I guess I kinda won that battle. And the photograph shows both of us locked in a heat of determination. With Ben’s red, unruly hair flopping wildly, and my teeth clenched to the point of producing TMJ.

It was a proud moment for the both of us.

BMT

After hearing the ridiculous statement “your child has cancer,” you don’t really understand much that immediately follows. At least I didn’t. I saw the doctors mouths moving. I saw them shuffle through papers. I heard them asking me to sign things. Consents. Waivers. Proof that I was “okay” with my son losing his ability to procreate. Or possibly lose his hearing (which he did). Or develop a secondary cancer (which still looms over him). A myriad of possibilities could happen when subjecting your child to multiple poisons and harrowing therapies. If I wasn’t in shock already, this endless list of ickiness would undoubtedly put me there.

So, in learning what my son would have to endure over the next 15 months: chemotherapy, surgeries, radiation, and a bone marrow transplant, well, I was completely overwhelmed. Ben took each day in stride while I worried about the next. It was a blessing he was so young – he doesn’t really remember anything of this first battle. All he knew was that the poison was helping him feel better. He could finally walk without pain. He felt like playing. The hair loss was no big deal. He’s predisposed to male pattern balding, anyway. So, at least we’re aware that he has the perfect head for his future.

In looking back on his induction therapy, I have to say that the absolute worst piece of it was his bone marrow transplant. His own stem-cells were collected for this therapy. This collection coincided with the birth of my daughter in April of 2004. I spent less than 24 hours at Riverside Hospital in labor, giving birth and having one night of uninterrupted sleep before heading back to the neuroblastoma trenches while Ben gave up stem-cells through a catheter in his leg at Children’s. These were stressful times.

When it was time for Ben to use those collected stem-cells, Madeline was five months old. When we first met with the Bone Marrow Transplant (BMT) team, they gave us a crazy list of rules. They also said that we’d have to find alternate living arrangements for my Madeline, because Ben was going to be super sick and couldn’t be exposed to ANYTHING. Their words were, “We have to take him to the edge of killing him and hope the infusion of the stem-cells bring him back from the brink of death.”

I looked at them incredulously and thought to myself, “HOPE? So, you’re going to HOPEFULLY not kill my son AND I have to be separated from my daughter for however long it takes for him to recover? NO, thank you.” I played the “breastfeeding card,” much like how I’ll occasionally play the “cancer card” to get my way. Oh, don’t judge you bunch of Judgy-Judgersons. You’d probably do it, too. Work with me here.

Finally, the doctors relented and I got what I wanted. In hindsight, I probably wouldn’t make that same choice again.

BMT was horrible. The first days were not so bad while the highly toxic cocktail of chemo dripped into my beautiful toddler. I tried not to focus on the list of emergency meds someone had taped by the door “in case of” any variety of emergencies. I think that is what really registered as letting me know that this was some serious business. Ben could die at any given moment. And my infant and I were locked in to witness it.

The next few days Ben started getting mouth sores. They were so horrible that it looked like a bomb went off in his mouth. He received IV nutrition throughout to keep him afloat because he couldn’t even eat ice cream without it hurting. He threw up copious amounts of green bile until there was nothing left. The heaving continued but he had nothing left to give. It hurt to see him in so much pain.

There were times that I’d try to hold him but his whole body hurt. His skin hurt. His life hurt. One day, I had him balanced against my shoulder as I rocked Madeline in her carrier with my foot. Ben drifted off to sleep. It could have been because he felt safe in the arms of his loving mother, or it could have been the ridiculous amounts of morphine coursing through his system. Let’s go with the former even though it was probably the latter. 🙂 Anyway, when I went to lay him back down in his bed, I noticed that my shirt was covered with blood from his seeping mouth sores. I had no choice but to cry, mourning the fact that no child should ever have to experience this hell, let alone my own precious child. It broke my heart.

Then there was the night he almost didn’t make it. The night that I was sitting in my reclining chair, completely unaware that his oxygen levels were dropping. The alarm was silently screaming in our room but, thankfully, it was not so quiet for Ben’s nurse. She came rushing in as fast as she could (there are many precautions you must take before entering a BMT room, so it’s not a super-quick process) and she started reviving him. I stood by in shock as I watched her pull lengths of stomach lining out through his mouth. He had been choking on it, but nothing had visually registered for me. He didn’t thrash. He wasn’t coughing. He just stopped moving. Only the monitor knew what was going on. The nurse pulled the bloody eel-looking chunks out and eventually he was all better. But not before she pleaded with him “don’t you dare die on me.”

I was going to need therapy. Lots of it.

There were lots of reasons why the BMT process was horrible, but that part was probably the worst. And after 31 days of isolation, he was finally permitted to go home. My weak and exhausted son lit up when we pulled up to the house. He insisted on walking himself up the slight incline to the front door despite his semi-atrophied state from not using his legs for a month. He exclaimed in his sweet toddler voice, “OH! I’m home!” It was the first time in a long while that I felt that it was going to get better.

Of course, when we had to go back to the hospital two days later for a checkup, Ben cried hysterically. He thought we were going back to jail and he wanted no part of it. He had to be reprogrammed that not every visit was going to be weeks of isolation and near-death experiences.

As for me, I survived, too. I’ve had extensive therapy surrounding this particular piece of Ben’s treatment. I harbor a lot of guilt and anger and downright devastation over this 31-day period. And, it’s been determined that I do suffer from some PTSD. Certain things trigger horrible reactions. Smells. Sounds. Ugly memories.

I’ve worked through a lot of that trauma over the last nine years. The experience didn’t kill us. It broke us, but didn’t kill us. And, eventually, it did make both of us stronger.

But, for whatever reason, I still cannot bring myself to order a BMT footlong from Subway. It is my favorite Subway sandwich, and I’ve considered asking their Corporate HQ to rename it solely for my benefit, but I suppose I have bigger battles to fight. I think I will gauge the success of my recovery on this: to order a BMT will announce to the world that I have successfully endured.

I have hope. Hope to end neuroblastoma and hope that I will once again enjoy a BMT without a flashback. A girl can dream, right?

 

Swears

She said a lot of swear words. Many found this trait offensive, but I did not live in that camp. I thought, “Hey, she’s battling for her life. What’s a swear word or two?” But she swore like a sailor and she was only seven.

She wandered the halls on her own, dragging her IV pole around with her. She’d stop at each room to see who could entertain her for a moment or two. Sometimes she’d get bored quickly. Sometimes she wasn’t welcome. Sometimes she was too tired to give a crap. So, she’d move on to the next thing to take her mind off the disease that was quickly killing her.

Her parents had many other children at home. Some say it was as many as 10. I know that the mom was pregnant when we first moved into Children’s Hospital, as I was, too. It was our initial bond. How will we have the energy to care for a baby and a critically sick child? But this mom had many other children at home. I did not. All I had at home was a dog and two cats, which we promptly gave away to Matt’s family upon Ben’s diagnosis. I couldn’t imagine having anything else needing my attention. I was in awe that this mom had so much on her plate. But, I quickly learned that she was rarely around the hospital. Her attention was divided into so many pieces that it seemed like she only came to the hospital for respite from everything else pulling at her.

There were many children like this… many kids who sat in rooms alone or hung out at the nurses station because their parents had to work. Or they only had one parent. Or some other painful issue. One parent was just sixteen. Her infant had cancer. She would sit in the family room with me at the hospital and talk and talk and talk. She had no one else. Her parents were done with her. Her boyfriend was long gone. She had no job. No insurance. And soon, she would have no baby. How do you start over from that at such a young age? She had to grow up so very fast.

Anyway, that February day that Ben ended up in the ER just before being diagnosed was the last day I ever truly worked. As I was walking out of my building, somehow I knew that I’d never be back as an employee. I was lucky to have that luxury. Matt continued to work and I was able to focus on Ben and the impending arrival of baby-yet-to-be-named. If I wasn’t at the hospital, then Matt was or my mom was or Aunt Patty was. Someone was always with Ben. Always. He never had to endure chemo alone. He never had to wake up without someone by his side. He never had to hold his own emesis basin as he threw up. It was hard to not be mom to all those lonely and hurting and terrified children who didn’t have the same privilege of having someone with them all the time.

So, when the sailor came around, I’d let her come in unless Ben wasn’t doing well. Once Madeline was born, she liked to visit often. Her face lit up at the sight of my baby. She’d always tell me about the baby her mom just had but rarely got to see. Madeline was breastfed so she was able to stay with us all the time at the hospital. My little sailor’s new sibling rarely made an appearance. She must have felt like she was an outsider. She was trapped in the hospital as everyone’s life went on around her.

And somehow, she knew she wouldn’t live much longer. She didn’t say it in a negative manner, nothing like “everyone’s just waiting for me to die,” she just understood that her time was limited. It was almost as if it was a relief for her. Her neuroblastoma never gave her a break. She didn’t respond well to treatment. She consistently relapsed. She just knew that she wouldn’t be a long-time-on-earth kind of kid.

And the last conversation I had with her mom was about faith. I was standing in the doorway of their room while Ben slept and a nurse carried Madeline around the halls. The nurses just loved taking turns carting Madeline around the floor. She was such a precious baby and brought so much joy to everyone. I had a little time to myself so I went down to see my sailor. She was under the covers but at the very bottom of her bed. I could see just a small tuft of newly forming hair poking out from under the covers. Mom was in a rocking chair trying to soothe her anxiety. She was rocking really hard. I could feel the tension in the room and within moments of arriving, my little sailor jumped up screaming in pain, shouting some swears, and crying. The morphine was administered and she drifted back to wherever little kids go when they’re trying to avoid their very real hell. Mom went back to rocking, the shell shock so very apparent. I stood in the doorway and listened to her trembling voice explaining that she had faith. She had a good idea of how this was going to turn out for her daughter, but she fully believed that it was God’s plan.

I didn’t know what to say. And as her daughter shot up out of bed in tremendous pain less than ten minutes from her last dose of morphine, I had a pretty good idea of how it was going to turn out, too. So, I listened to her Mom in between the fear-invoking moments of listening to neuroblastoma killing her child. She was scared but, somehow, she felt safe.

That was the last time I saw them. My sailor died sometime during the night and they moved out before the new day dawned. I sat on the tiny toilet in Ben’s bathroom silently crying and swearing for my little sailor and wondering what the meaning of this “plan” could possibly be. I still don’t know. My heart still hurts. And, yes. I’m terrified that this is the same plan that God has in store for my Ben. I feel so broken. So helpless. So scared. This all sucks so bad.

And I think that’s worthy of a few swears.

 

Role Model

It’s September, which means that it’s National Childhood Cancer Awareness Month. I’m kicking off the month by snuggling next to my three-time cancer survivor while he continues to snooze. Ben is a very loving and affectionate boy – so I don’t have to steal my snuggles very often – but there’s something so precious about being able to hold him and nuzzle his soft peach-fuzzy head while he’s unaware. He breathes a deep sigh and my heart pounds louder. Don’t leave me, Ben. We can’t let cancer win. It’s tenacious. It’s vicious. It doesn’t care how my maternal heart feels. Or that Ben is just trying to navigate his young pre-teen life in your overbearing shadow. You suck, cancer. I wish you’d get a conscience.

It’s overwhelming to think that he’s been fighting off and on for nearly ten years. And before he was diagnosed, how long was he full of disease? It’s hard to say. All I know is looking back on pictures we had very different expressions. Before cancer we were blissfully unaware. And now we have a tired – yet determined – appearance. We’ll fight this beast for the next forever. If – God forbid – Ben loses his fight then I’ll fight for the others who continue their battle. It won’t end with our situation. It will never end for me.

So, as I type and my tears begin to overwhelm me, blurring my connection to the computer screen, I allow my fingers to unleash all I’m feeling. I miss all the babies we’ve lost along the way. The children who fought with smiles on their faces because they just didn’t know how bad it was. They faced their beast as if they were a Disney hero fighting a dragon because, well, that was their role model on how to fight. Raising their foam sword in the air and exerting a battle cry as they headed in to slay the imaginary beast. And that’s how we’ve had to fight all along, blind to what cancer was doing internally. Affecting organs. Killing cells. Sloughing stomach lining. And hopefully killing what was trying to kill them. Seeing cancer through a child’s eyes, with their beautiful sense of child-like wonder, helped me to see it a bit differently myself. I’m a cancer survivor, too. But I never faced my disease with the grace and bravery that many of these children have shown. They are my heroes.

And in having the privilege to still have Ben with me nearly 10 years later, well, I’ve learned so much. About cancer in general. About human nature. About people I didn’t know surprising me with amazing support and good friends surprising me with desertion. Our situation scares the shit out of people and it’s not uncommon to watch people run screaming as they try to exit our burning building. And at times I’d like to pull a “Carrie” and slam all the doors on people so they have to stay and watch the terror. (If you’re not a Stephen King fan, well, never mind this reference.) But we all deserve to get out alive. Especially these children. Especially my Ben.

Where do I find the good in all this cancer nonsense? Well, I see how Ben affects people who have an open heart. Just a couple of days ago, one of his teachers told me it was a privilege to know Ben. She took her role in teaching him very seriously and couldn’t wait to share the year with him. And she knew she could learn something amazing from him as well. I smiled and understood exactly what she was saying, as I, myself, have learned so much from this spectacular young man. And every day that he is given on this planet I learn a little more. He has so much to give. He has amazing amounts to offer.

So many of my friends have never met Ben and I’m sorry for that. I wish we all lived closer just so you could know my amazing boy better. I try to share as much as I can through my writing but it just doesn’t offer the same experience. Sure, I’m biased, but even my words as his mother do not do him justice. I am proud of my amazingly strong son. Just because you can count every rib he has through his painfully thin frame doesn’t mean that he isn’t strong. Looks can be deceiving. He’s bald. He’s tiny. He’s skinny. His scars often seem bigger than he is. But he’s stronger than he looks.

My son. My cancer warrior. My role model. My Ben.

My hero.