Pablove 50, Cancer 0

I went to bed last night in the famous blue CHLA chair with one thought in mind: Sunday would be spent kickin the s**t out of cancer using the best tool I've got: my bike.

I'm 50 miles into my 100 mile ride. Started at the front door of CHLA, and hit 50 mile mark a few minutes ago. I'm a couple miles north of Pt Mugu in Ventura County. PCH ends about one more mile up the road from where I'm standing. It feels good to be here and it is gonna feel good pulling up in front of CHLA in another 2.5 hours.

First thing I did when I got here was call Pablo. I wanted him to hear the waves. He did and he was happy. I told him I was riding to kick the crap out of the strep bacteria in his blood. 'Good!' was his response. Then he told me he loved me and hung up.

P is having a good day. Jo Ann and Patricia are moving him into a new room, next to where we've been since leaving ICU.

My next check in will be from CHLA.

Happy Sunday!

About Last Night

Last night was very good. Jo Ann and Patricia took the night off and headed home to shower, relax and get a full night of sleep. Jo Ann hadn't left CHLA since we arrived on Wednesday morning. After they left, Pablo and I snuggled up in his bed. Josh frmo Dangerbird brought us—you'll never guess?—Malo for dinner. Hrishi was working late in the office as well, and ran up top our house to pick up my night back and to download the season premiere of the excellent new show 'SouthLAnd.' Hrishi dropped the bag at the front door of the ICU. He is getting over a cold and was not allowed in.

After all that stuff got sorted, P wanted to hear a story about something we will do when his body is back to normal. Of course, I chose a story about riding bikes up in the San Gabriel Mountains. I told him we will drive up and pull over wherever he wants. We can watch the giant hawks circling like jets, and keep an eye out for snakes or lizards or the grand prize—mountain lions. We might even see a mine shaft. That's about as far as I got before P's lid started dimming. He was snoring in no time. for hours, I watched the electronic monitor document the moves of his heart rate. It raced up and coasted down as he dreamt the night away.

Before Jo Ann left, P told us he was having a hard time breathing. 15 minutes later, he said it was fine. An hour later, Jo Ann called from home and asked that I order a chest X-ray. So I did. No point messing around. Besides, how often can you walk out and ask someone to have the X-ray guy come over and take a snapshot of your son's chest and be taken seriously? 20 minutes later the X-techs were up in our room with their Tron-like machine. The bummer was that we had to wake P, slip an X-ray slate underneath him, and lay him on his back. Pablo, like most humans, does not like to be woken from a deep sleep. Especially with two unknown dudes in the room and a robotic eye hovering above his body. One day he's going to write a great follow up to Styx 'Mr Roboto' or Judas Priest 'Electric Eye.' When he does, the song will have a happy conclusion: his X-ray showed his lungs lookin great. In fact, they looked better than they did on Wednesday.

After the X-ray scene ended, P fell right back to sleep and didn't wake until 8:30.

Sometime last night before we hit the hay, a couple of our homegirl nurses (don't want to name them cos they might get in trouble for leaving their sector of the star ship) dropped in on me + P in ICU room K. They said a bed would be opening today in 4 West. The move outta the ICU and up two floors to 4 West is our single goal today. If we get our own room, all the better. 4 West is our home. For real.

One last detail before I jump on my bike: Pablo's blood test came back negative for strep again today! His platelets are building nicely. White blood cells are still hovering around zero. This is a game of inches. So we'll take the incremental goodness and run.

Will check in later today.

Have a great Saturday. WE THANK ALL OF YOU for writing comments, emails, texts. Even if we do not respond, we cherish each message. Rays of light to remind us we are not alone and that Pablo is loved.

Spongebob's Message to Pablo!

Pablo got a big shout out from Spongebob Squarepants. Check it out!

The Pablove Foundation Has A Logo!

Dangerbird design guru Rory Wilson blows our minds regularly on album packages and related marketing materials. We love his logo for The Pablove Foundation so much it makes us giddy.

The designs you see here are for die-cut stickers. He's worked his butt off on countless revisions of these. We wanted them to communicate equally the 'fight' and the 'love' parts in words, colors, shapes, etc.

Stickers will be distributed as soon as they arrive at the office. Should be within two weeks.

Thank you Rory!

Dirty Harry+Dopamine+Def Leppard

Pablo is still in the ICU. Dr M has upgraded his condition from critical to stable. The key reasons for this are Pablo's smoothed out respiration and heart rate, and his successful weaning off Dopamine. Pablo's temp has fluctuated between 38.1 Celsius (normal) and 38.9 (very high). The lab has identified the bacteria in his blood. It's the same strep infection that knocked him out a month ago.

This time, it's not running away even with a second antibiotic slamming it. Fevers have become routine for us in the past 321 days. But there's nothing routine about this one. We have been conscious to not alarm you over the past 11 months. Today is a day when there's no way to not alarm you: Pablo is critically ill. He is battling an infection that would knock a healthy person on their a**. Pablo has zero platelets and zero white blood cells. That's the equivalent of a cop in a gun fight with a totally awesome Dirty Harry hand cannon with zero bullets. He will be in the hospital for at least 14 days from the first day his blood shows no bacteria. We could be in there for a long time.

Jo Ann and her mom Patricia are doing the overnight. I am home with the dawgs. Tomorrow night will be my overnight shift.

¶ All last week, I dreamt of April Fool's Day pranks to play on people. I was looking forward to giving myself permission to laugh, to feel a part of instead of outside of. A couple of my clients were really going to get it. I had a good one for Grady. Even thought of a few ways to gently indoctrinate Pablo into the tradition.

Before I got into pranks, I was gonna do my usual Wednesday morning ride in the San Gabriel Mountains with my friend Peter Robbins. His daughter is a veteran of CHLA's 4 East; she is a leukemia survivor. Every week, we propel ourselves thousands of feet up the black road and talk. I slept through my alarm. Never sleep through my alarm. So I canceled the ride and made my way to the kitchen to start measuring out food for my breakfast. 30 seconds later, I heard Jo Ann's voice from downstairs. 'He's got fever. We have to go now.' I never mention this, but every time I recall moments like that while writing a post, I get the same desire: I want to punch the computer screen. I want to bloody my hand. I want to know what's inside the screen and I want to destroy it. The anger + desire to do something makes my mouth taste metallic. I am not making this up. I need a punching bag. Like the one in the shape of a boxer dude.

¶ Enough of that. Punching the computer will only make it worse. In our world today, it feels like for 321 days we've been on a hijacked airplane. Flying, full of fear, freaking. And coping, one breath at a time. Exhaling when no one's looking. We woke up on April Fool's Day—yesterday—to an additional plot point added into the mix: major turbulence in the form of Pablo's shivering + fevering. When he woke up, like most humans, he went straight to the toilet to take a leak. He walked out of the loo in our room, stood in the doorway and said, 'Mommy, I'm scared! My head feels like a bobblehead.'

That phrase 'I'm scared' can be heard in many ways in many different situations in life. In many cases it's hollow, rhetorical, lame. To hear Pablo say it is heartbreaking. To know you can't do anything to change how his body feels—he is using the word as a catch-all to describe the foreign feeling inside his body. The dude has had 321 days of foreign feelings. Today he has a new one, and like Def Leppard, it's not foolin.

¶ Everything I thought about my life is not true today. Nothing is true and nothing is worth anything when my son is lying in a giant hospital bed crying and burning up and scared and searching for words he doesn't have to describe feelings of pain no child should ever know. And so nothing I have ever dreamt is coming true today. Only songs of sadness and pain and minor chords and angst play in my head. There are always songs playing in my head. I think in strands of songs and lyrics written and sung by people who have had the guts to stand up and sing s**t I have no guts to say. Violent Femmes 'Good Feeling.' The Beatles 'Love Me Do.' Neil Diamond 'Forever In Blue Jeans.' Love And Rockets 'The Light.' The Smiths 'That Joke Isn't Funny Anymore.' Elliott Smith 'Everything Means Nothing To Me.'

For two days, scared and full of song, I show up. I talk to people. I say things. I am not really there. I'm surprised when I get hungry or thirsty. Someone who's not really there shouldn't have an appetite. Someone who woke up more tired than when he went to bed shouldn't be up writing anymore.

Good night.

Update: Wednesday Night

Pablo sleeping in his bed in the ICU. We are grateful to have a room with sunlight. Half the rooms in the ICU have no windows.

It's way past our family's bed time. But what is our bed time when P's in the ICU? How do we sleep? How do we stop our brains from thinking and our hearts from feeling long enough to shut our eyes and rest? I am exhausted. But it's important to write this post, to keep all of you up to date. And to let go of this day by putting it on paper.

Here's the latest. I'm combining my thoughts with a bunch of thoughts and facts Jo Ann emailed me throughout the evening.

Dr M is hopeful. He emailed me to say 'Pablo's hanging in there!' That made us feel better. Dr M is a brilliant physician, and an honest, forthright person. His words mean everything to us. That said, Pablo is still in critical condition. He still has fever of 38.4—38.9 Celsius. It's been that high all day. You could cook an egg on P's palm he's so hot. The nurses are literally packing chemical ice packs around his body as he lays in bed. He has the old skool traditional cold wash cloth on his head. Jo Ann and I told him how our mothers used to do that for us, and how much we loved it. He was nonplussed, and seems to hate all the cold stuff up on him.

The range of drugs P's on is phenomenal. It's staggering to even think that one little person could be subjected to so many things at once. This observation, coming from me, at the end of 11 months of chemotherapy, radiation, surgeries, and—literally—countless blood and platelet transfusions? Yes, it's true. The idea that Pablo's veins and heart have today taken in red blood, platelets, magnesium, dopamine, Benedryl, two different antibiotics, fluids, and probably a few other things I can't recall—it's stunning.

Another thing: we've made it this far without an I.V. being poked into P's skin. The port in his chest has done the trick for 11 months—until today. He now has a thick I.V. needle in his left arm. They call this an auxiliary port. It is taped with that white silk tape that we've all had, and there's a board taped onto the back of his elbow, to prevent the arm from bending and causing P excruciating pain (it still hurts him).

One of Jo Ann's emails to me this evening perfectly summarized what we need to ask of you, our loving community of friends: Pray for Pablo to get through this fever and infection with a strong heart, strong lungs, strong mind and strong body!

On that note, I wish you a good night.

ICU

Sometimes all we can do is hold Pablo's hand. Even with the most insane medical technology in the world wired up all around Pablo, he craves the oldest comfort in the world: holding Mommy or Papa's hand. Not sure how good the photo is, but you may be able to see the petichae (tiny red dots) stippled all over his hand and arm. That's from the zero platelet and white blood counts.

The fever is still on. It won't go away. Within the realm of Pablo's day, he has calmed down, and is stable. He is trying to fall asleep but the nurses and docs keep coming in by the handful. And there are beeps going off all the time from any one of the six machines pumping fluids and meds into him.

We hope things will calm down by 6 p.m.

Jo Ann's mom Patricia is flying out from Houston tomorrow morning. I am 99% certain that I'll cancel my business trip to London - was supposed to fly out Saturday for five days. I leave 1% on the table cos part of me dreams of P waking up in the morning and laughing. Altho we KNOW he will pull through this, there's not much reality to support the 1% plan.

Tony is still here. He's been with is for hours. When the nurses wheeled P's bed from the ER, Tony carried all of our suitcases and bags, allowing Jo Ann and I to flank the bed and hold P's hands. Tony and I signed up to be one another's brothers a long time ago. I'd say he's kept his end of the deal.

Peter's wife Brie brought tacos for lunch. She has a friend bringing a picnic basket to us full of home made dinner. Peter's on tour with his band Eulogies, sick in a New York City hotel room. We've kept in touch all day via email. And so many of you have been emailing, texting, Twittering to us. We know we have many, many rays of light heading our way from all over the world.

Twitter Updates

Hi all,

This is Hrishikesh posting. If, like me, you have been glued to this page for the last 12 hours, waiting for more news about how Pablo is doing, you should know Jeff has also been putting up mini-updates on Twitter. Here's the link:

http://twitter.com/dangerbirdjeff

Update From The ER

We are headed to the ICU. The fever has not gone down yet. The docs have him on ice. Pablo is miserable - his blood pressure is low and his heart rate is racing. There are no less than six doctors attending to him, many of whom have become friends of P's and ours over the past 11 months.

We are never in this part of the hospital for anything less than serious stuff. That's why it's called the 'emergency department.' There's something

We do have GREAT news: P's chest x-ray is totally clear. No pneumonia, no fluid and - most significant - no spots. You know Jo Ann and I are not fatalists, but we'd be delusional to not find comfort in the absence of cancer in Pablo's lungs. That's the first place the disease spreads to if it were to recur and spread. We are f**king NOT open to that. But, again, there are facts and we are grateful to have checked one potential issue off the list.

Had to stop writing for past 15 minutes. As I was typing P's eyes bulged out of his head and he began to vomit mucous and a bit of blood. This is not a fire drill. There are more docs in here now. They are moving us to a bigger room in the ER. The ICU is full and we may be here for a while.

A tech is in here right now with a giant machine doing an echocardiogram. Another tech is drawing blood from his arm while that's going on. They need to test the gas level in his blood. P's entire body is swollen - out of nowhere. We are all staring at the black and white monitor on the machine, watching Pablo's superstrong little heart pounding away.

Brie is on her way with lunch from Yuca's Tacos. Not sure how we're going to eat in the midst of all this. But we need to keep our bodies fueled.

Keep sending your energy and intentions. This is the day.

Fever!

Here we are. Again. At CHLA Emergency Department, room O. Pablo woke up at 6:30 a.m. shivering and burning hot. He was very freaked out. While we were getting him dressed and in the car, he was saying 'I'm scared! I'm scared!'

He and I drove very fast down Sunset Boulevard with the heat blasting. Jo Ann packed P's suitcase and arranged a ride for Grady.

The fever hasn't really gone down after the first round of fluids and antibiotics. In an effort to cool him, we had to take his shirt off and take the blanket off his body. Not easy when he's shivering. It adds screaming to his repertoire.

Dr M came down to see Pablo. Love him! We felt like Batman had walked into the room when he showed up. He just RUNS sh*t! In fact, he has ordered a full slate of tests, to be sure P's heart, kidney and bladder functions are rocking. Dr M assumes the cause of this fever is a blood infection. Frankly, let's hope it is. That's a simple, easy explanation. And something we can fight and overcome.

On that note, I will ask you for your thoughts, prayers, meditations. Whatever you do to send energy, please do it in honor of Pablo.

Will check in later.