The Air That We Breathe

Thursday morning, I sat down with my laptop. For the first time in over a week, I wanted to write. There was a lot going on in the house, and I couldn't concentrate. I needed an audio force field. So I downloaded 'Van Halen II.' No idea why. That album just popped into my head. Within 20 seconds it was blaring on my speakers and my fingers were tapping as fast as Eddie Van Halen's in 'You're No Good.' When I hit the PUBLISH button, I felt lighter.

A few hours later, I walked into a house in Beverly Hills where we were meeting with a spiritual advisor we've come to like. A friend of his lets him use his home for meetings when he's in LA. I took my shoes off in the foyer and was escorted to the media room. In front of me stood a wood and Lucite display case. Inside the case: one of EVH's gonzo-striped guitars. Nothing surprises me any more. Jo Ann and I live in a world where energetic, social and advocacy connections guide us through our days. We don't question which way the light guides us. We just smile, and say 'thank you.'

Half an hour after I entered the house where one of my idols' guitars lives, Jo Ann and Pablo joined me. We had just come from meeting with Dr Mascarenhas in his sixth floor office at CHLA. Jo Ann and I went there to confirm our plan for Pablo's treatment. After three weeks of pondering and searching for options, we had decided on what we thought was our least favorite idea: to surgically remove the two tumors in P's lungs. Our shift came about for two reasons: 1) Dr Stein determined he could get the tumors out in one procedure, not the two he'd originally suggested (thereby reducing P's hospital stay from three weeks to one); 2) we found a handful of exciting, acceptable drugs to throw at P's cancer post-surgery. We were excited to run down this path that we'd been entirely closed to three weeks earlier. Time helped. And Jo Ann's incessant search for information and knowledge helped. Pablo's daily increase in strength, light and vitality was the wind in our sails. Changing P to an incredibly healthy diet, with carefully selected fish and meats thrown in, was the wind in Pablo's sails.

30 minutes into our meeting with Dr M, we mentioned something that Pablo had told me that morning. We were playing in our bed, running around, jumping and screaming. Suddenly, he stopped, shifting from playful extrovert to inheld and protective. When I asked what was up, he said he couldn't breathe when he laid flat on his back. He laid back, inhaled deeply and looked pained and scared—the way a human looks when they can't get enough air. I grabbed his hands, pulled him up and hugged him. A moment later, we were playing again. Not wanting to frighten him, I just reignited the play. Didn't know what else to do. I knew something was up. His coughing had been going on for two days. Jo Ann and I talked about it constantly when he wasn't around. We'd each seen him stop running to catch his breath. He'd asked Grady if they could play something that wasn't a chase game. Francine noticed him stop to catch his breath when he was running with the kids at her barbecue.

Dr M asked us to get Pablo to CHLA right away. We called Polly, and she and Grady had him there in 10 minutes. We met them on the fourth floor of the clinic, in the radiology department. For the fourth or fifth time, Pablo stood in front of the X-ray lens and let his face fall into a glib, detached expression. Minutes later, Dr M popped out of a meeting upstairs and pulled up the images on his computer. He called Jo Ann to report what he'd seen: a considerable amount of fluid had built up in P's right lung. This was why he couldn't get fulls breaths when laying down. This is why his breathing has been shallower, and, perhaps, why he's been coughing constantly. In a general sense, the fluid restricts the lung's full potential, and causes less oxygen to be pumped into the blood, as well as a shorter breathing cycle. Such a simple bodily function that most of us never think about. Once restricted, it becomes the focus of all our attention.

The tumor in his lower right lung is not our only focus. The growth in his upper left lung is dangerously close to Pablo's airway.

The fluid build up, Dr M explained, was caused by the tumor pushing outward toward the sac that encapsulates the lung. A normal lung has fluid in this area, to lubricate the slide of the expanding lung against the sac. With the presence of a tumor nudging into this area, the body goes into overdrive, creating an overabundance of fluid. He believes there may be cancer cells in the fluid, which makes surgery impossible at this point. Imagine piercing a plastic bag filled with toxic water. Wouldn't be good. The cells could be spilled everywhere inside P's body.

As we learned this info on Thursday afternoon, we also learned that more chemo was the only option we had. Chemo is the only agent known to reduce the size of a tumor and the fluid bonanza it creates. If the chemo is successful, surgery will be possible.

So, Friday morning we arrived at CHLA at 9:30 a.m. and settled into our old routine. We were there until 5:30 p.m., a solid eight hours in a dark corner of a ward room where only hanging sheets shielded us from the three other families in earshot. When we arrived, we met with Dr M. He explained to Pablo what was going on inside his body. Pablo listened intently. I could tell he comprehended everything Dr M said. He's grown up at CHLA, of course he did. It's his body at the center of all this attention—of course he understood.

The chemo was tough on Pablo. Each of the two drugs he received has side effects. They all do. But these two have pretty specific and severe effects. Pablo slept through the last half of his infusions and immediately upon waking he began retching, vomiting, and retching some more. His head hurt. Imagine your child, any child, being injected with a liquid that could inflict serious pain on him, screaming 'My head hurts.' And the machine keeps pumping it into his body. Because it has to, in order to reverse that other dastardly effect going on out of sight, inside his body. I was scared. He was scared. Jo Ann was in a Zen state, holding P in her arms. Thank God. One of us had to be. And then more retching, more vomiting. More pain in Pablo's head.

That's the scene that we brought home. Through the night, this scene played over and over. Same thing today. Pablo is not himself. He won't be until the darkness of this drug lifts, and the sunlight of its promise basks on Pablo. We know this is possible. It's happened many times over the past 13 months. I can't remember it ever being this bad. This is the reason we never wanted to do chemo ever again. But I also can't remember Pablo needing chemo in such a direct, profound way. Today, our target is the two tumors in his lungs. They are taking his breath away. This is something we can see. When I think about it, I feel choked in my own lungs. That's a game changer. And our game against cancer has gone from a wide field of strategic options to a block + tackle scenario. To put a finer point on it: one block...and one tackle.

On a side note: every time I see someone smoking, I get mad and a little sick to my stomach. Every time I see someone smoking, I think the same thing: does that person think they are immune? And then I let it go. It's not my job....

We need your continued prayers. We need your light. We need your heart focus on our little boy. We assure you that we'll be there for you when we are able to be there for you. Our hearts are filled with gratitude for all that you have done for Pablo and our family.

Thank you.