I thank you for your courage

“Despite everything, I thank you for your courage, and wish you children of your own someday. So you’ll know what it’s like to want to save them from the world.”

I don’t know if you’ve been watching 13 Reasons Why on Netflix, but it’s intense, and you should. It’s not for the faint of heart, and it’s not for kids necessarily (maybe teens?). It’s a very real look at the harshness of bullying, coming of age, depression, and finding our place in the world.

I finished up the second season on a plane this weekend coming back from San Diego, and the line above (that image is the scene it’s said in) hit me hard.

I was in San Diego to attend a fundraiser the Shaw family puts on. Their son, Parker, has beat neuroblastoma, in part through the DFMO trial we’re helping to fund. His family is helping too – they’ve donated over $125,000 to Beat Nb already, through their nonprofit Team Parker for Life. Much of that was matched, so the impact is even higher.

Over dinner, I watched Parker play with his two younger sisters, and listened to him chat confidently about lacrosse (he plays), hockey, and all sorts of things.

The night before, the Sherman family drove a couple hours from La Quinta to share a meal and a walk on the Del Mar beach with myself and the Mikulak family. Each of us had lost a child to neuroblastoma. Kristin and Rick (the Shermans) lost their daughter Riley Rose just this year. Andy and Mel (the Mikulaks) lost their son Max 5 minutes before Ezra, my son, was born. 5 minutes. And we lost Ezra 800 days later.

We shared our stories again, as we’ve each done hundreds of times. We talked about hospitals, and funerals, and how we learned to hook our kids up to catheters and syringes and feeding tubes and count meds and watch our kids break as we broke too.

And I thought about our courage.

How it drives us to want to save kids from the world. In our case, specifically from neuroblastoma.

Google “courage,” and it returns a definition of “strength in the face of pain or grief.” And isn’t that us? Isn’t that this ragtag group we’re building? A bunch of broken parents, falling apart at the same time as saying it out loud holds us together, screaming and weeping and standing mountain tall against this happening to someone else.

In the scene from the picture at the top of the post, that man’s daughter had been raped. And the teen he was speaking to had seen it happen, and was telling the police. He had much to lose by telling, because it would implicate himself in other things. But it was tearing him up not to do something about it, because he could, even though it would hurt. So he did.

I cried on the plane when the dad said that to him, remembering the Shermans, the Mikulaks, the Shaws, and all the families I interact with on a daily basis who are strong through pain and grief, choosing to pour their lives into beating neuroblastoma. It is working. We are seeing more stories like Parker’s, where yes, cancer is terrible and scary and we walk around with PTSD, but our kids are BEATING cancer where hope used to be absent.

Ask these parents, and they’ll say they’re not strong. We’ll say it hurts all the time, and we’re broken, and we feel the pull to just curl up in bed sometimes… that it’s not easy. But we ARE strong. Strength isn’t ease, it is endurance. It’s not that it doesn’t hurt, it’s that we choose to continue nonetheless. Brokenness is often close with strength. The one breeds the other. Muscles must be broken to build, fire tempers steel, and adversity builds character. Weakness teaches us humility, and to depend on each other. Community lessens anxiety, and increases ability, strength. WE are strong.

So to every parent who stands with us at Beat Nb, and all the other groups who’ve dedicated themselves to being God’s hands against a wrong in this world, I thank you for your courage.

father’s day

I miss Ezra every day.

Yesterday was Father’s Day. It was a good day for me. It was also a heavy one. I woke up yesterday to find out Tessa had died – this young lady battling neuroblastoma who I’d met only once, but whose approach to life moves me. I saw in her something I knew in Ezra – a zesty snap toward smiling, and a wisdom she shouldn’t need to have yet. To all the fathers who have holes in their heart, and today especially to Bobby Prothero, I am with you.

And we are here. Still. Insensibly, we bumble on while everything else does. I know, logically, it matters that we work to change what we can. That Beat Nb is working to stop kids from dying. That the dinners and phone calls and laughter in my own home work to prove there is love within loss. “Pain and joy can coexist.”

I know it’s been this way forever. I’m not naive enough to posture any of our current struggle (“our” me or “our” all of us) as unique. Still, it’s not right, and it weighs on me. In a broken world, we are broken people.

We make a difference. It can never, WILL never be fast enough. I don’t know how to wrap my head around that. It is war, and the enemy is cancer. The “cost” we pay to one day (I hope sooner than we think) beat cancer is too high. It is my son, Ezra. It is Tessa. It is Brooke. Max. Emma. Melina. Ronan. Alex. Lola. Among the many, many names I will never forget.

And more and more names of kids BEATING cancer. Sofia. Rea. Parker. Lily-Mae. Isaiah. Anthony. John. Cannon. Not just lists of names – all of these kids are stories I know and can tell well. This reality of so many beating cancer just wasn’t the case when Ezra was diagnosed. Oh sure, it happened often enough. But not with the frequency it does now. Sweet evidence we are beating neuroblastoma.

I’ll never be ok with how much it has cost.

tomorrow is Karaoke for the Kure (video inside!)

Every time I see a kid like Sofia, beating neuroblastoma because of work we’re doing, my heart breaks in so many ways – good too. 6 years after Ezra died, I’m now friends with many people whose kids had or are beating neuroblastoma. And lots have lost kids, like Robyn and I. But the stories of kids beating neuroblastoma ARE becoming more normal. In just 6 years, we are seeing a difference.

I’ve said before – it’s too slow. The stakes are too high. I know too many kids who aren’t here anymore, and the huge smiles we have with each success are coupled with sad eyes knowing so many kids who weren’t saved. Still, we push forward because that’s not good enough. And it IS changing.

Robyn and I are just two people of the passionate and EFFECTIVE group we’re surrounded by in beating this cancer. I could mention 50 people right now who are either DOING the actual research, whose kids are on our trials, who are helping to fund research, raising awareness, or all of the above. We are strengthened and encouraged by the group we are a part of.

Please come to Karaoke for the Kure – Tampa tomorrow. I know it’s yet another event, and it costs money, and there’s other stuff going on, and blah blah blah. But I say this with full confidence: kids are alive today because of Beat Nb and the NMTRC’s work. So come celebrate what we’re doing, and be a part of the change we’re affecting. There’s work left to do.

https://beatnb.org/k/tampa/ for tickets.

I’ve still got a few tickets left which are sponsored (read: free for you), and some discount codes if the price is an issue. But it’s a charity event – full price is just as appreciated. 😉 Regardless, I’d love to see you.