Monday, September 12, 2011

Something's Wrong With The World Today

The phone rang this morning. I looked down at the caller ID. It was a client calling. Not an uncommon thing: my clients call me all the time. I go through two Blackberry batteries a day talking to them and develop close relationships with them as we journey through the back alleys of rock and roll.

As I hit the green button on the face of my phone, I thought I was stepping into a lighthearted call where we'd talk about some business stuff, some personal stuff, and how much I enjoyed meeting his wife and kids for the first time last week. I was wrong. My friend had just gotten news that sometime Sunday, the left side of his nephew's body had become immobile. The boy's family rushed him to the nearest hospital—thankfully, a very good one at an Ivy League university.

My friend's voice faded in and out as he gasped for air. It's not easy to tell a guy who has lost his son to cancer that in the middle of last night, your nephew was diagnosed with diffuse pontine glioma—an inoperable brain tumor. The weight of it all kind of comes into full effect when you're telling the Pablove Foundation guy that you've just become a member of the kids' cancer club—a club you fully endorse and support but had hoped you never had to join.

My friend paused. I sat there, staring at the wall, gasping for my own lungful of air. As the pure LA air oxygenated my brain, I could not comprehend what I was hearing. I reached for a pen and my notebook. I asked him to repeat the details. Part of me still has this naive and novel notion that nobody near me will ever confront pediatric cancer. Like, Jo Ann and I filled the quota for all our friends or something. This morning was one more sad reminder that my quota notion is bunk.

Let me tell you something else: my memory is not what it used to be. I've been through a war with my little boy, and I will never be the same. The good news is I've learned I don't need my brain that much. My heart is a far better guide in this world. My hear is getting me to all the right places, with all the people who matter most.

As I wrote down the details of my friend's nephew, one thing was clear: I know this story well. You know that. Pablo was in the midst of life as a 4.9-year-old when that Wilm's Tumor bump appeared out of nowhere in his abdomen. There was no opt-in box on the website of life that morning. There was no notice in the mail telling Jo Ann and I that our son would be killed by a disease exactly 13 months and 10 days after a CT machine confirmed the presence of cancer in his body. It just doesn't work like that.

Note: in movies and TV shows, you can always see the enemy, be it a man with a gun, an arch enemy of the nation, a menacing airborne toxic event. In real life, it's not always that simple. In my life, cancer has taken two people I love—my son and my big brother—and I never got to stand eye-to-eye with the thing. There was no Clint Eastwood moment for me. Ennio Morricone did not score the scene where good triumphed over evil. No, in real life, the bad guy sometimes wins while the cinematographer and the composer are asleep. I didn't tell my friend that. It's too soon to get into all that s**t.

As I geared up to round up our A Team of pediatric cancer docs to give my friend's family the most authoritative second opinion possible, my optimism was on the wane. All I could think was that there's something wrong with the world today. I'm just that tired from fighting. Still, I know exactly what to do about when I feel this way: pick up the phone and be of service to others. Plenty of people must've felt this way when Pablo was sick. And I intend to keep helping people as long as I live. Good thing Pablove Across America starts on October 8. It's an 18-day rolling service circus where the lives of a few dozen riders will be focused on just that: helping others.


Heather said...

I try to tell people,people not versed in the world of pediatric cancer,that in order to not be eaten alive, totally and completely by merciless ripples of these beasts, one needs to just keep reaching out hands and hearts, even in the midst of such despair.

That you and Jo Ann continue to do it, that reaching of hand and hearts, is simply a tribute and honor to P and about the only, the only thing, that may help you find sense in this craziness.

Today I received a heartbreaking email from a East Coast mom. Another mom in her group of friends had a son diagnosed with leukemia last month.I was asked to lend some wisdom for the journey.Little did I know that I barely had time to outreach my hand and my heart. His name was Ryan J Drake. He was 7. He is gone now. Just like that. One month. He deserved more.

There is most definitely something wrong with this world.

Araminta Bazaar said...
This has been a helpful resource/bible/crutch/lifeline for many other parents; sadly I only found it after Minty had been pulled off treatment. If your client decides to join this group, he will most likely and hopefully be found by an even more specialized group, dedicated to diffuse pontine glioma; at least that is what happened to me, as I was referred to Ependyparents by another parent on the first broader PediatricBrainTumors group, dedicated to ependymoma. Please feel free to give them my phone number and email. They can call me right now.

thepiersolfamily said...

Hey Jeff, let me try that again...
I hear you, as always in so many ways I hear you. Thanks for reaching out to this family in the midst of feeling their excruciating pain. Thanks for helping them, and for helping so many others. What Pablo has done and continues to do, now through you and Jo Ann...what a boy. And what parents he has. Thinking of you, thinking of you, thinking of you. Love to you, laura

Julie said...

About two years ago I came across the PABLOg by a fluke – probably through one of those dreaded link-clicking cycles that, if not careful, can suck up hours of time without warning.

Except this was a worthwhile diversion; Pablo and Pablove have been on my mind ever since. I read up, I spread the word, I donated, I got the t-shirt (literally!), and happened to be wearing it yesterday when I checked my computer and saw a message from a friend. One sentence, and I went cold:

"Emma has a Wilms tumor on her kidney. We are being admitted to (hospital). They need to remove it. Don’t know much more yet. Please pray."

Emma just turned one. Her mommy’s last Facebook status was about how many teeth she had already, and how she was starting to walk.

My insides collapsed.

I’ve almost left comments here before (keep up the good work! and other vague encouragements) but now, more than ever, I just wanted to thank everyone at Pablove for what you’re doing—appreciation from not just myself anymore, but from Emma and everyone who loves her.