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.

Bubble Baths + Battle Plans

Dave Cooley gave us a bottle of the world's best bubbles. This pic proves the 'best' part. Pablo and I have developed a nightly ritual we call Crazy Bubble Bath or 'ceeb' for short. Don't know what's in these bubbles, but they are relaxing, they last forever, and they swallow up all our Lego guys....

Our house has become a repository for acronyms: combinations of drugs whose initial letters have been arranged by the national oncology board to create some sort of a memorable name; federal drug codes, which are used when the actual product name is too difficult to pronounce (to wit: IPILIMUMAB and CIXUTUMUMAB); and my fave, RAD-001, which is the a/k/a for Affinitor, a name most people with a fully developed tongue are not challenged to pronounce.

Other terms swimming around the airwaves at our house: stereotactic radiosurgery; radiofrequency ablation; PTEN pathways; PPAR meds; a viral therapy that shares a name with a British beer (Newcastle), was developed in Hungary (Hungary?) and is being used to great effect at an institute in Isreal; differentiation, dedifferentiation, pro-differentiation, phyto differentiation; and heaps of amazing facts about how cells behave when confronted by agents that promote anti-inflammation and anti-angiogenesis. We've even been schooled on the black market for cancer drugs and the vast differences between Phase I, II and III clinical trials. We've become well acquainted with the term 'first in human' trials—as in, 'the last person who got this drug was a rat.'

Most of all, we talk about treating Pablo's disease on four different fronts: physical, spiritual, nutritional, and medical. Up to about seven weeks ago, we relied heavily on the medical aspect. At this moment, Pablo has not had any medicine injected into his body for weeks. And he is stronger and more active and happier than he was even before his diagnosis. We are strengthening P's temple—and the city walls that surround it—so he can endure the next phase of this battle. This four-front battle plan is working. It combines all that we truly believe in, all that we practice (or have practiced) in our lives here on Redesdale Avenue. It makes sense to treat Pablo's cancer in a whole, rather than partial, way. Believing that the body can cure the body is a harmonious, simple notion. So simple, so devoid of medi-techno babble that it is viewed with suspicion in today's society. Some days, Jo Ann drags me back to this world, kicking and screaming. That's when I want to run for the false security of a medical-only plan.

We're putting the finishing touches on the plan for the next phase. Not ready to talk about it here.

Jo Ann and I have mini conversations throughout each day, discussing this theory or that...probabilities...the latest update we've received from Dr M, Pablo's surgeon Dr Stein, or one of the growing team of doctors we are consulting with. The other morning the phone rang and it was a doctor from the National Cancer Institute in Bethesda. She heard about Pablo and had a treatment idea for him. While Jo Ann had her on the phone, she ran all our options by her, gleaning valuable perspective to throw into the mix in our discussions with Dr M. You can't imagine the power of the team we've assembled. Jo Ann, being an executive producer by profession, is in her element in this environment. Charged with her most challenging and most meaningful task ever—saving her son's life—she is spinning 50 plates at a time, getting answers to questions that haven't yet been asked, receiving calls from secret area codes regarding drugs that are far from their eight-page ad spread in People magazine.

¶ This morning, the phone rang: it was a collection agency. We're late paying a $250 invoice at CHLA—an invoice that Jo Ann has intentionally not paid as the hospital and our insurance company sort out details relating to our yearly deductible. I'm laughing as I write this. 250 bucks? At this point, Pablo must be the Million Dollar Kid. I haven't added up the cost of his treatment, but it must be well over a mill. I dig that somebody in the accounting department pushed a piece of paper into a file. Totally. But, still, with the pressure of Pablo's life on our minds and in our hearts, laughing at that phone call is the lightest way to look at it and let it go.

¶ The kid didn't flinch when we eradicated sugar, dairy and wheat from his diet. He totally gets it. He also didn't flinch when he had to start swallowing four pills every morning—whole food supplements whose chief aim is to get his body back in line with itself so it can kick his tumors in the teeth. Kind of brings a new level to 'I did it—all by myself!—that excited proclamation kids all over the world say every day. P and Jo Ann just figured out a way to integrate one of his fave toys into the exercise. Here's what they do: P puts the pill on his tongue, swallows some water, and Jo Ann counts off, clicking the trigger of P's silver cowboy pistol until the pill goes down. Pablo being the offspring of two fairly competitive people, he tries to best his own trigger click record as each new pill hits his tongue. It's hilarious to watch this. And it works, so it's a humorous miracle. No prophet in history has mixed humor with miracles. Wait—does George Burns playing God in a movie count?

Tattoo

Who said coming to the hospital was all bum and no fun? When we got to the day hospital, Liza Velarde, one of our fave nurses, snagged P and took him into an exam room. I looked everywhere for them. Had no idea where they could be. When I finally located P + V, they had matching tattoos!

Everything else we do here today will be a bore....

Hot Tub Hello

Pablo and I are swimmin in the hot tub at Peter + Brie + Lennon's house. It's cold and cloudy in LA today, so hot water is the key to our H2O happiness. P's swim skillz are gettin better by the day. Today, he started diving down to the bottom to touch my toes. In between dives, out of nowhere, P spouted out the kookiest questions I've ever heard him ask: 'What are you, some kind of hipster?'

Then he asked, 'I wonder what kind of stuff Lennon's doctor does with him?'

P is happy no matter where he is. The sun + air temp don't matter to him. But I gotta say, he is EVEN happier when he's floating in water....

Next stop: OSH Hardware - we're in search of a new cop-style flashlight. P wants to hone his driving license checkin routine.

Silverlake Steps

Rome has the Spanish Steps. Pablo has the Silverlake Steps. His aren't anywhere near Vatican City. They're at the park at the bottom of our hill. And they have a super wide cement railing. Pablo, of course, has taught himself how to hoist himself up on the railing so he can walk up the steep pitch to the top. As we walked home, Pablo wanted to show off his trick to his big bro. As G saw what P was doing, he said, 'I used to do that when I was a little kid too!'

Amazing.

I emailed this pic to Jo Ann with the message 'Look at your beautiful boys.'

It's that simple.

Rated PG

Grady came down the hill to meet us at La Mill Coffee. He's getting so big, he can now hold P in his arms! I'd never seen him do this before. This act of brotherly love made me so happy I wanted to share it with you.

More P @ Park

Here's Pablo, Alan, and his son Sebastian. Alan and his company Filter Marketing masterminded the Pablove / Urban Outfitters / Filter Magazine compilation.

Slim Shady @ The Park

We're at Silverlake Park with Alan and his son Sebastian + Rachel and Clint and their little boy Jonah. Our neighbor and friend James is also here with his lil one, Oscar. It's a gorgeous day - cool enough to stand in the sun without frying.

Here's a pic with P and Jonah, chillin in the shade. Pablo's doing his usual daredevil jumps + all the littler kids are mesmerized. And, yes, he has noticed this + LOVES it!

Gettin Our Heads Together

This is how we roll when we're on two wheels. And for the next hour, our entire family will be rolling thru the car-free bike paths of the Santa Fe Recreation Area in Irwindale, east of Pasadena. I'm sooooo happy to share this experience with Jo Ann, Grady and Pablo. More pix soon.....

Pablegoland

Pablo doesn't forget anything. When he sees something he'd like to add to his play arsenal, he keeps us focused until we take him to the proper store for toy procurement. Today, we had a plan to hit the Lego store at Glendale Galleria after P's X-ray. He wanted a specific Indiana Jones Lego set. Within seconds of walking into the store, he found it. And now he's stoked.

We like that!