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.
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.
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.