For the love of a TEAM

A few months ago, my dear friend and fellow cancer mom, Sarah, introduced me to an organization called “Team IMPACT.” Their goal is to pair critically ill children with a collegiate sports team, all with the mission of improving the child’s quality of life through the “power of team.” Her nine-year-old daughter and cancer survivor, Jamie, was recently paired with the Regis Women’s Soccer team and was LOVING the experience.

Jamie is a super outgoing type of kid. My Ben, however, is a solo kind of kid. He’s spent so much of his life making friends only to lose them to cancer. Or making friends at school only to lose them because he couldn’t make it through a full day – let alone a whole year – of school. He is fine with his solitary status: playing ridiculous amounts of video games or watching YouTube videos on his phone. It’s his comfort. In fact, I know he did so well with his MIBG therapy isolation because he was equipped with an iPad and all the time in the world to watch videos. If there’s a cute animal video out there, Ben has seen it.

Not that Ben is antisocial, quite the opposite. He is the most compassionate kid I’ve ever met. He genuinely has a heart for others who are suffering or having a hard time, often putting his critical status on the back burner to attend to others’ needs. His heart is huge. I think what it has come to, however, is that he simply doesn’t want others to worry about him. From what I’ve heard him say to others, he has the impression that he’s a burden. He recently told his grandpa that he wishes people didn’t have to worry about him. He’s sorry that people worry about him. He doesn’t want to be in the spotlight or be a spokesperson (despite having an amazing story to share) or bring attention to himself. It’s way out of his comfort level.

So, when Sarah introduced this organization to me, my first thought was “no way will Ben be interested.” First of all, he’s never been a part of a team. Second, he’s not a sports kind of guy (with the exception of following the Avalanche with his hockey obsessed mother.) Third, he will hate the idea that this will put him in some sort of a spotlight. But, what the hell. I’ll ask him. Nothing to lose.

I watched as his amazing eyebrows knitted together and raised as I was explaining what Team IMPACT was all about. He listened intently. And when I was finished explaining, his first question was, “Do I have to say anything?” I told him that he’d have to interact with his teammates but I didn’t think he’d be called on to make any inspirational speeches. He surprised me when he said “I’d like to do it.” I immediately started the process of getting him paired with a team when cancer struck again. The summer – as you all know – was filled with yet another round of trying to fight the stupid beast hell-bent on taking Ben from me. Team IMPACT would have to wait.

Thankfully, as my overwhelmed state focused solely on supporting Ben, Team IMPACT kept reaching out to check on how Ben was doing. I knew immediately that this was a special organization. THEY did the work. I didn’t have to reach out at all. And once we got to a place where Ben was doing better, they got right on it and paired Ben with an AMAZING group of guys: The Men’s Soccer team at the University of Denver.

Now, we know minimal about soccer, but Ben was excited about the pairing. Coach Bobby Muuss invited us to come to Vail for Ben’s “draft.” The minute I walked in and saw Ben’s name, I started to cry. They were so ready to make Ben a part of their team. Player after player came up to us and introduced themselves, shaking our hands and letting us know how excited they were to have Ben on the team. It was overwhelmingly beautiful. The thought of this group of guys caring about my son blew me away.

Ben wasn’t feeling well that weekend – and I’m sure he was way out of his comfort zone – but he still stated that he was excited to be a part of the team. My emotions, however, were all over the place. I guess when I first saw Ben’s name projected on the wall, I was hit with the distinct possibility that this will never truly occur for my son. His disease statistically dictates that he will not live long enough to go to college, let alone have the strength to play sports. Not at a college, not in high school, not even on a playground. But, lately I’ve been obsessed with living in the moment (mostly due to my amazing counselor telling me that I MUST live this way) so I drank in the beauty of this group of wonderful young men wanting my son to be on their team. It was a priceless moment that helped mend my broken heart.

Ben’s had some physical ups and downs lately. He’s been so tired. But his teammates have sent encouraging messages and videos offering support. I think Ben likes that. It’s hard to tell what Ben’s thinking sometimes, but I have a good idea based on those eyebrows of his. His expression can show no indication of what he’s feeling but I’ve deciphered so much based on those eyebrows… and when they raised up during the viewing of a recent video the team posted offering their support, I know Ben was touched by their sentiment.

Ben went to his first game last night. He sat on the bench with his teammates while Madeline and I sat in the stands. I found myself only occasionally glancing over at Ben – I knew the guys would watch out for him (he has low platelets right now and a ball to the face could leave a mark.) Madeline and I cheered the team on to a 2-1 win. But the most amazing moment was when I glanced over to see the entire team – including Ben – jump off the bench during an exciting moment of the game. My heart soared.

Getting to see that – watching Ben being a part of the team and getting excited over something that he’s only beginning to understand – did my heart a lot of good. Any “normalcy” I get to experience with Ben feeds my weary soul. I didn’t realize how much I was craving that. I just didn’t understand how I would feel to watch my son simply enjoy such a moment.

And when he came off the field after the game, he gave us a high-five. He expressed how much fun he had, how much he enjoyed the excitement, and couldn’t wait to do it again. As we walked through the halls of the Ritchie Center of DU – the sports complex on campus – Ben stated, “I sure would love to go here someday.”

Yes, Ben. We’ll have to rob a bank (since I am still paying for my own DU experience 14 years later) but I sure would love for you to go here, too.

Thank you, Team IMPACT. Thank you, Coach Bobby Muuss. Thank you, fine young men of the DU Men’s Soccer team.

And thank you, Sarah Crook, for loving us enough to know we needed this. You are the absolute best.

The comfort of a storm

I’ve always been a pluviophile – or one who finds solace in the rain – and I’m fortunate in the way that my children have picked up on this trait as well. Especially Ben. One thing I love about Colorado summers is that when it rains, it’s usually a doozy. When we hear those first drops hit against the window, we’ll run out to the car and lean the seats all the way back to watch the rain hit the sunroof. We all take comfort in those drops – sometimes breathing deep and sighing – like our souls have been rejuvenated through the precipitation.

The rain washes us clean.

Last night, I was cleaning up the makings of banana bread when I first heard the thunder. Madeline was already asleep but Ben had just laid down so I knew he wasn’t asleep yet. I peeked into his room and said, “It’s happening.” I saw a thin smile despite his not feeling well. He crawled down from his loft bed as I grabbed a blanket and headed out to the balcony. I keep a big papasan chair out there where I often write my short stories (btw, book to be completed by the end of this year, friends!) Ben wandered out and stepped over the mess of yet another fairy garden that Madeline and I are creating (I think we have an entire village of fairies living on our balcony now.)

It was pouring. Ben sat next to me on the big chair as I pulled the blanket over us. Just as we were snuggling in, he asked if we should wake up Madeline. She hadn’t been feeling well, either, so I told him to let her sleep. I kept thinking that I would take the opportunity to talk to him about “stuff,” like “How are you feeling?” or “Do you want to talk about anything?” or “Are you ready for what’s next treatment wise?” He’s 13 now and I know he’s starting to pull away from the whole concept of “Mom.” He loves me, for sure, but he’s a teenager now. There are things he just doesn’t want to discuss with me. Unfortunately for him, that has no bearing on my ability to be a “smother.” I’m all up in his business 24/7. That’s my job, after all. And given his medical history, I’m hawk-like in my attention to what he’s doing. I know when he throws up. I know when he’s having bowel issues. I know when he’s dizzy or how much he’s eating or how much water he’s had for the day, so when he forgets to tell the doctor any symptoms, I’m there to back him up. Like I said, I’m a smother.

So, as we were sitting there, watching the sheets of rain from underneath our blanket, I kept thinking “ask now.” Then something would stop me. Sometimes it was a crack of lightning. Sometimes it was listening to Ben’s exclamations about the amazing light show. For once, he was watching what was before him instead of focusing on an electronic of some sort. The storm had his full attention. And I decided that it simply wasn’t the time to talk about cancer. He deserved this. He needed a break.

Mom needed to keep her mouth shut. And my reward for that was the moment Ben leaned his head over to rest on my shoulder. The soft sigh taking his body to a relaxed state as the rain soothed the storm that was consistently battering my son. Yes. He deserved this moment. And I soaked up the weight of his head leaning against my shoulder, knowing that I am comforting him as best as I can.

For once, we were facing a storm that we could manage.

With each crack of lightning, he gazed in wonder as I admired his profile. The soft slope of his nose. The slight upturn of his lips. The deep wisdom of his eyes as he looked at the lightning with childlike wonder. And as his head hit my shoulder to relax again, I felt the downiness of his hair. I swear, for a split second, I could smell the scent of Ben as a baby. I smiled as I remembered the good of the past 13 years. How far we’ve come. How hard we’ve fought. And the fact that he’s still here to sit beside me for another day.

He kept his head there until the rain let up. We must have been sitting there for thirty minutes. He told me that he was getting pretty tired so I encouraged him to head in to bed.

Then he said, “I won’t ever forget this, mom.”

I smiled and said, “I love you so much, Ben.”

I expected him to say “love ya,” because as he gets older he’s moving away from the gooey aspect of sentiments like expressing a full dose of “I love you.” But he humored me. Or maybe he meant it because it was such a moving moment.

And as he told me “I love you, too, Mom,” I let it wash over me like the torrents of a storm. The comfort I found was more than refreshing. I let it slide over me and soak me to the point of making my fingers pruny. I closed my eyes, breathed deep, and smiled.

Before he turned to go back inside, I let him know that I would never forget this moment, either.

No matter what happens. I’ll always do my best to give comfort during the storm.

 

 

 

The issue of awareness

Note: this is an “op-ed” piece. I shouldn’t have to state that this is MY opinion on what is a blog that chronicles MY opinion, but I know this might offend some people in the cancer community. Nevertheless, here goes:

Everybody – and I mean EVERYBODY – knows that kids get cancer. So there. Awareness is not an issue. People are MORE than AWARE. They might not understand that the symbol for Childhood Cancer is the Gold Ribbon, but even if they did, I don’t think it would change anything. Besides, seeing how over-played the Pink Ribbon (which EVERYONE knows stands for breast cancer) has become, I’m not sure that the Gold Ribbon should be displayed on everything from underwear to soup to toothpaste. I’m pretty confident that the Susan G Komen foundation pays through the nose for their ribbon to be emblazoned on every product, and if the Gold Ribbon were to follow suit, I think it would become yet another symbol for people to ignore. Besides, Gold Ribbon families simply don’t have the money to buy awareness. We’re all broke.

I used to be one of those activists, one who met with members of congress trying to get them to support our cause. I’ve been told everything from “we already support cancer research” (which, unfortunately, gives very little to childhood cancer research) or, my personal favorite line uttered by a Congressional Aide, “Until someone famous gets this disease and backs it, I expect very little will change.”

So, under this premise, should I be praying for one of the Kardashian kids to get cancer? That would get people’s attention, right? Maybe someone would care then? However, I wouldn’t wish cancer on anyone… not even a Kardashian. But I bet they’d come out with a killer line of chemo backpacks. Kids getting cancer is pretty sad but why not make it fashionable? Yes, I’m being sarcastic, but this is what our world has come to. We care more about what those reality star dim wits are doing than we do about our neighbors, who are simply trying to survive.

I’ve been “listening” more than posting on Facebook recently, and it’s filled with two camps right now: people doing the Ice Bucket Challenge and people bitching about the Ice Bucket Challenge. Personally, I think it is a brilliant campaign. It has raised lots of money for ALS. That is TRULY phenomenal. But, what has made it successful is that it appeals to people showing others their personal piece of it. Look at me dumping ice on my head! And then there are those who are tired of seeing it and take the time to complain about it. Okay. Sorry to bother you. But THIS IS WHAT HAPPENS WHENEVER ANYONE TRIES TO RAISE AWARENESS! People turn their backs or complain about it or  shut down altogether.

The beauty of Facebook – and why so many people are addicted to it – is that it appeals to our vanity. It’s about me. It’s about you. Keeping everyone up-to-date on what I had for dinner or how bad my head hurts or a picture of me getting a pedicure. It’s my own personal Reality TV, except I’m keeping up with people I actually care about instead of the freaking Kardashians. Don’t get me wrong, I LOVE FACEBOOK. And I love to keep up with my friends. And I love to keep you up-to-date on what’s happening with me. I’ve “met” a lot of great people here and it has kept me from falling off the cliff more times than I can count. In fact, I was at the mall the other day and someone came up to me and said, “You’re Ben’s mom, aren’t you?” She told me that she’s been following Ben’s journey on Facebook and reading my blog for a while now… I was overcome with JOY that someone would take the time to come over to me and let me know that they care about my son. It was truly heartwarming.

But back to the ALS campaign, many people in the pediatric cancer community are trying to think of something similar in hopes that it would go viral. I really hope we can be more original than jumping on another organization’s bandwagon. If we start sending videos of us smashing pies in our faces or sucking on lemons or doing any number of things to try to get people’s attention, I honestly think it will make us look foolish. I know this is going to piss some people off and I’M SORRY for any offense, but let’s think of something else. People are tired of the pink ribbon, so why promote our gold ribbon? People are getting tired of the Ice Bucket challenge, so why try something in a similar vein? I don’t know what the answer is and I don’t have any grand ideas, but please, let’s find something that will excite people, not make them groan, roll their eyes, and turn their backs. We already have enough resistance to overcome.

For now, I’m taking a personal approach. I’m using Facebook. Ben has his own page dedicated to him and his journey. I keep most of his medical stuff separate from my personal page. My blog has a lot about Ben on it but it’s not solely about him. I can talk about whatever I want to here. But his Facebook page is 100% him. And anyone who “likes” his page can keep up with what’s going on. I try to make an impact there… showing videos about what he’s going through. Posting pictures of the hell he endures. I just changed the “cover photo” on his page to reflect the 10 years of torture he’s been through… it’s my own way to raise awareness. It might be directed at a very small group of 2K+ people, but it’s making an impact. He gets new followers every day. I don’t expect our plight to go viral but I’m doing my part in letting people know how bad this sucks.

There are some amazing people out there who are doing incredible things for pediatric cancer. Running hundreds of miles. Baking cookies and cakes. Cutting their hair. Starting foundations. Marching on Washington. There is no doubt that our cause is way underfunded and pushed under the rug. But stop being pissed at the Empire State Building for not “Going Gold.” They don’t wanna support us, they’ve made it clear, so we’ll bang on someone else’s door. We can’t make people pay attention. But that doesn’t mean we shouldn’t try a different outlet. I think it’s fruitless, however, to keep hitting those who don’t want to listen over the head with it.

Trust me. They’re aware. They know that kids get cancer. And either it is simply too sad or too painful or hits too close to home. Or maybe they just care more about the Kardashians. Their choice. Heck, I have some extended family and friends who refuse to read my blog or discuss Ben’s issues because they just can’t handle it. I can’t make them. So, I’ll tell the readers of my blog and those who follow Ben’s page. I get my message out to as many people who will listen. And if those supporters want to give money to our cause, that’s fantastic.

But we can’t make them listen. And that’s not our fault. It’s not for a lack of trying.

So, let me leave you with this excerpt from the all-time comedy classic, The Jerk.

Hobart: Sir, there are charity people here to see you.

Navin R. Johnson: What? Send them away. There are plenty of people more deserving than me!

Hobart: But these people want *you* to give, sir.

And then he meets with a shyster disguised as a Priest soliciting funds for *GASP* Cat Juggling. As he views the 8mm film of a man juggling cats, Navin says: “Good Lord – I’ve heard about this – cat juggling! Stop! Stop! Stop it! Stop it! Stop it! Father, could there be a God that would let this happen?”

He proceeds to get out his checkbook and write a number with lots of zeros.

We – the Pediatric Cancer Community – need a Navin R. Johnson to come to our rescue. Our salvation ain’t in the Empire State Building. Or anyone affiliated with the Pink Ribbon. Or usurping the Ice Bucket Challenge. I wish I had the answer. And I wish I had the energy to fight the bigger battle besides the one I battle with my son.

I guess the best advice I have is to keep sharing our stories. And, unfortunately, there’s no lack of heart wrenching stories to share.

 

 

Post MIBG

I don’t think I explained what happened Friday when Ben was discharged from his MIBG therapy. My alarm went off at 5:45 that morning so I could start getting him ready for discharge. He had to have his Foley catheter pulled, take a shower to wash off some radiation and then head down to radiology for an MIBG scan all before he could have his PICC line pulled and his mediport de-accessed.

As the nurse was pulling his catheter, I averted my eyes (no 13-year-old relishes the thought of anyone doing anything to his “private area,” especially while mom’s hanging around) but with all the rules in place, it wasn’t feasible to simply step outside while this was happening. So, I looked out the window instead, just in time to witness the beautiful sunrise as Ben was gasping – first in pain and then in relief – as the foley was pulled. This wasn’t the first time that I had to focus on something else while my son was going through something painful. And, I was quite certain, that he wanted no comfort during this part of it – especially from mom. My poor, traumatized 13-year-old.

As he showered, I changed his sheets and disposed of other items, so he could lay back down on a minimally radiated bed. His legs were wobbly after spending so much time being sedentary, so I hovered as close to the bathroom as I could in case he needed me. He didn’t. Then he got dressed in new, non-radioactive clothes, and waited for the MIBG scan. I took a nap while he scanned… I had been up more than I had slept the night before. Once Ben was finished scanning, we went over all the discharge rules. Again.

No close contact with anyone through August 8. Must stay entirely separate from younger sister through 8/8. Must stay entirely separate from all children through 8/8. Must use disposable eating utensils, which must be disposed of after being held in isolation for one month to avoid violating radiation levels at our local landfill. All clothing and sheets must be washed separately. Must have sole use of a bathroom until 8/8 and the toilet must be flushed 2-3 times after each use. Must shower every day (this is probably the hardest to enforce.) And, for the Love of God, DO NOT PEE IN THE SHOWER! The radiation is excreted through sweat and urine… peeing in the shower would most likely dissolve his little legs off. Just kidding. I think.

So, I haven’t truly hugged my son for eight days. Now, I’ve gone this long without hugging him before, but it’s really freaking hard when he’s right in front of me and I can’t hug him. It was decided that Ben would stay at his father’s house since I live in an apartment and radiation can sneak through walls. Despite him emitting a fairly low frequency of radiation, it’s best to play it safe and keep him as isolated as possible.

The follow-up MIBG scan showed that the radiation had surrounded the cancerous spots and hopefully kicking the hooey out of those bad cells. It was noted, however, that radiation was surrounding a spot on his liver, too. There’s always been a spot there, but it was deemed to be ‘brown fat’ since it hadn’t grown or moved or done anything ominous over the past two years. The fact that it was surrounded by radiation suggests that it’s cancer. So, that sucks. But, at least the MIBG is surrounding it and hopefully forcing it to give up.

Stupid cancer.

Knowing that I would be hanging out with Ben today while Matt was at work, I took Madeline to a friend’s house for a sleepover since she can’t be around the radiated Bean. On my way home, I called Ben to chat. I told him I couldn’t wait to see him in the morning. He expressed the same excitement about seeing me. My emotions got the best of me and I apologized for his having to go through so much. He said, “That’s okay, mom. I’m glad it’s me and not you or Madeline.” I’m sure my face twisted up in an effort to not lose it, but I told him that I would take it from him in a second if I could. He said that wouldn’t be acceptable. Then I told him I loved him. It’s our little game to one-up each other during this exercise of expressing love… “No, I love you more…” and then I say, “No, I love you most…” and then he says “Not possible…” and I say, “Possible. Infinity.” But last night, he asked, “Please, just let me win this one. I need to love you more.”

So, I surrendered. I let him win. But just this once.

He is feeling optimistic that this therapy is helping. He said “It really wasn’t so bad. And maybe this is the answer, mom.”

Maybe this is the answer, Ben.

Hopefully, it is.