Saturday, June 6, 2009

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.

23 comments:

Shay Raviv said...

We are here for you. Love to you all.

Heather said...

Loving you all here in Camarillo, with all the the light and prayers we have within us.Wishing we could do something,anything, to lift this from you and most especially lift this from sweet Pablo.We will continue to focus on the positive.The fully and completely healed P.I leave you with this,a mantra we use over and over and one that hung, each and every admission,on Zoey's crib for the last 7 months:"Everything is possible ... the impossible just takes a little longer."We love you all.Continue to bask in the beauty of each other.We get the rest and will talk when we can talk.Know we are here and will be there in a moment if needed.Day,night,whenever,open ended for always.

Jules said...

Always wishing and thinking and praying for Pablo. What a strong young man he will be once all of this is over - he will have already dealt with more in his early years than most have to deal with in their entire lives. Let`s pray that his struggles are occurring early in life to leave room for a simple, loving, strong, easier life ahead.

kdeloian said...

CONSTANT love and prayers coming at you...
Kat & Garrett

Heather said...

I don't know your family. A friend had a post on a networking site to pray for Pablo while he was in a surgery a while back...so I looked at this blog...and have checked it almost every day since. I think of Pablo often, and imagine his future bright and beautiful. I don't know your family, but when I saw the post that you were in Legoland I wanted to drive the few miles from my home and hug and squeeze Pablo...and bring my 2 young boys to play with him because he seems to know how to have a really good time! I will pray for Pablo, send positive, healing vibes his way and also strength to you and your wife to keep fighting this fight. I am amazed by what I read here over and over again. Much love...

LYNN said...

Sending all our love to you. Prayers come your way, every day, from all of us.

Lynn, Bruce, Claire & Colin

Anonymous said...

There is not a moment in my day that I don't keep Pablo close to my heart and send him and your family love. I've never met your family, but you are part of my family now. My boys ask about Pablo often and wonder how he is doing. My youngest son, Nathan took one of the yellow Pablove bracelets to school and gave it to one of his friends and told him all about Pablo. Nathan's friend wears the bracelet reguarly and says it brings him courage and strength. I know his mother checks in regularly on Pablo now too. I want Pablo's complete and total healing so much that I think about it all the time. He is a precious little boy that will grow up to be a strong loving and dynamic young man, friend, husband, father, grandfather. That's what I am concentrating on with my whole heart. JoAnn, you are an amazing Mother, full of strength, wisdom and incredible love. Your little boy is so, so lucky he has you as Mommy!!!

Anonymous said...

Praying that this "block and tackle" chemo is the most effective knock-out punch imaginable for those tumors. We want you strong Pablo!!

Jenefer

Abbotts said...

I have tears running down my face as I read your description of the tumors taking your little boy's breath away. Also, I am in complete agreement with you regarding smokers. Uggh!, and to make matters worse, why do they congregrate outside hospital entrances to smoke so we have to walk through and breathe in their nasty poisonous smoke!
Your Pablo remains in our prayers. We are sending lots of love, light, and healing vibes his way. I have a good feeling about this surgery. Give that precious boy a big squeeze from us.

Anonymous said...

Yes, Pablo WILL be healed. That is my mantra. Go away cancer, you are not welcome in P's body! xox

Anonymous said...

Ginger was extremely helpful in preventing the nausea when Brad went thru chemo. They make ginger candies and ginger tea you can make and give to Pablo sweetened with a touch of organic honey. If he prefers it cold, its great over some ice! It really does help! The sea bands help too, they use pressure points, (accupressure) to control nausea.

Anonymous said...

Pablo should envision he is punching out that cancer monster when he punches on those stuffed animals! Punch away Pablo! Destroy that C -monster!

Anonymous said...

Here's some more love and hope from another stranger on the other side of the country.

Stay strong, all of you. With so many people and so much love on your side, this cancer doesn't stand a chance.

Anonymous said...

Constantly inspired by the grace you handle of this all with. Love to all of you.

Stephanie

Sara said...

Jeff, Jo Ann, Grady and Sweet Pablo,

We are here for you. Always.

Lots of love,
Sara, Nick, Simon and Cheyenne

Anonymous said...

Pablo and your family are in my thoughts and prayers daily - many times a day. Like others who have posted, I don't know you, but have a heartful of love for you and am constantly sending it your way.

The Hearnes said...

Dear JoAnn & Jeff,

The four of us just returned from being out of town, and because we were without internet connection, I just finished reading the recent posts... Our prayers are constant; they will never cease.

Your darling, beautiful boy is so very fortunate to have you both as his parents... truly. Your love for each other will conquer all.

May God's great comfort fill your hearts with continued strength and hope in this relentless fight. We pray that God will wrap His loving arms around Pablo to relieve him of pain and discomfort.

We're with you,
Tish & family

Kerry Zeka said...

Jeff, JoAnn and Pablo...
Just wanted to jump on here and let you guys know that we are still hanging on every word that is written and are praying, praying, praying. Wish there was more we could do, but at least it is something. We continue to ask family and friends, as well, to keep the prayers flowing for Pablo! I believe in miracles, still, even in this day and age! I think I'd lose hope in everything if I didn't! You all are awesome and I am amazed at the lengths you will go! Keep climbing!
Your Wilm's buddies in Oklahoma,
Sicily and her mommy, Kerry

chad said...

thinking about your beautiful son and family and sending positive energy your way. Praying you all receive continued strength and that Pablo starts feeling well soon.

Dawn: said...

Thinking of you all every day, many times a day. Sending all my love and prayers.

update said...

in our thoughts always. love, dayla

Anonymous said...

We are sending light, love & positive thoughts your way -your strength is inspiring - Allison, Paul, Bruno & Thea

Anonymous said...

We are urgently praying for Pablo. We are sending love from across the ocean.
Love from your Wilm's family,
Molly and Laney Böttcher