Goodnight From Fort Pablo

Here's a pic of our new 'dos. Note that it's lit entirely by Pablo's flashlight. We shaved our heads on Sunday night. Bought a Wahl clipper at CVS, and did it ourselves. Pablo wanted to lose the mohawks. His words were: "I'm over it."

We've built our fort again tonight. The living room sofas have been pushed together to make a giant fort bed for Papa and Pablo. Grady helped us build the fort. He is at the hotel now, spending the night with Nana and Boo. They are going to take him to summer school in the morning.

Mommy is getting a much needed 'vacation' downstairs–she gets the entire bed to herself tonight!

We're up at the crack of dawn to make our appointments at Childrens Hospital in the morning. In addition to tests and a possible blood transfusion, Jo Ann and I have our big meeting with the surgeon Dr. Stein at 9:30 a.m.

Pablo will not be receiving chemo tomorrow, since it's the day before surgery.

We'll let you know the day schedule for Wednesday when we get it.

OK, we're climbing into the fort now, for some story reading-by-flashlight.

Pablo insists that our signoff is, 'Love, Grant'

(Grant's his buddy from school)

Pix From The Dodger Game

Dodgers Ambassador Craig Robbins–pictured here revving up a very shy Pablo on the field–treated Pablo like royalty at the game, making sure we were sorted, shepherding Pablo onto the field and hooking him up with a cool Dodgers tee shirt and gift bag.

We had a great time at the Dodgers game last night. We had so much fun talking and laughing and freaking out at Pablo going onto the field to get a ball signed AND getting his face plastered up on the scoreboard, we didn't even pay attention to the game!

Here are the pix: Francine, Pablo and Grady on the field

Lookin like an old skool Milwaukee Brave–channeling his grandpa's boyhood idol, Warren Sphan?–a mohawked boy on the field with his backstage pass.

Surveying the field

Pablo saw this pic and said, "Look, there's me, lining up." Pablo on the scoreboard. I mean, the only thing more strange than having a robotic port in his chest is Pablo standing on the field at Dodger Stadium and getting his face up there. Dodgers catcher Russell Martin #55 signing Pablo's ball. He hit a home run or two last night.

Wonder what P was thinking here? Don't think he had a clue that 40,000 people were watching him down there!

A happy boy with his autographed baseball, returning to Francine on the sideline

Above and below: the welcome carpet extended to the digital billboard that lines the inside of the stadium

Jo Ann and Lara Porzak, who happened to be at the game, and knew we were there when she saw Pablo's grill up on the scoreboard.

Dolores, David, Dinah and Alix graciously hosted us in their season seats. It was a blast hanging with David and Alix and their precious twin daughters. David's family has had the seats since the Dodgers came to LA!

Pablo and his Dodger Girl

Julio and Grady

Pablo and Papa

Visiting Wall•E In Outer Space

A message from Pablo (dictated to Papa):

I have been visiting Wall•E in outer space for 50 days. I'm excited to the movie with Papa and Mommy.

Dodgers Vs. Angels

We are on our way out the door, headed to Dodger's Stadium for a game of the Freeway Series–Dodgers against the Angels. It's only four minutes from our house, on top of the next hill over from us, in Echo Park.

Francine has already taken Grady and Pablo over there to meet the team and get their balls signed. I hope they let Pablo throw the ball–the kid has a rocket of an arm. Has since he was 18 months old!

Grady's pal Julio hung back with us, and is rolling with me and Jo Ann.

We'll have pictures and stories later tonight....

CAT Scan Results Are In!

The chemo is working and we are ON for surgery next week! We had the smoothest time ever at the hospital this morning. Pablo even chose to down his contrast drink in the garden that sits outside the hospital. Our hospital time felt shorter with a blast of fresh air in the middle.

Pablo cried as the CT machine pulled him in and out of its donut. The good news is the scan itself was over so fast that we thought it was a test run.

When we got home, there was a message from Dr. Mascarenhas waiting for us. Jo Ann ran downstairs with the phone on SPEAKER, looking elated and stunned that he'd called so quickly. We sort of expected to be waiting for his call all day. This is a great lesson in what to do with expectations for sure.

We called him back immediately, and he gave us his read on the scans–all of which will me reviewed next week by the surgeon, Dr. Stein, as the two of them formulate the exact plan for Pablo's procedure on Wednesday. Keep in mind that any of this could change as Dr. M. re-reviews, and certainly when Dr. Stein joins the mix (he is on vacation this week).

All the words below are direct quotes from Dr. M (except the parenthetical notes, which are my clarifications).

OK, here goes:

LEFT KIDNEY: not changed, exact same size (this is the side with the smaller tumor(s).

RIGHT KIDNEY: Looks like the chemo is having an effect. It's 5% larger, so essentially about the same size.

LUNGS are clean

NO worrisome lymph nodes or anything else

PROBABLE SURGERY STRATEGY:

• Deal with RIGHT side first. A bit of this kidney is still functional. The contrast made it look like part of the kidney is still working very well (THIS IS GREAT NEWS!!!!)

• LEFT KIDNEY: Leave it alone for now. Dr. Stein will determine pathology in next week's surgery. We will scan it again in six more weeks.

CHEMO REGIMEN MOVING FORWARD:

• Will have to add a third drug to the chemo mix (We will let you know what this one is called)

• Scan again in six weeks

------

This is me talking again. Dr. M. has left the blog for now.

Jo Ann and I feel that this is great news! Mostly because there's no BAD news, and also because some of the right kidney appears to be healthy and operational. We will be grateful for ANY portion of that kidney to be in working order, and to stay in his little body.

It's true that a person can live a perfectly fine life with a single kidney. BUT, if there is a reappearance of Wilms' Tumor on one or both of his kidneys in the future, having two kidneys gives the doctors more to work with. The further we can stay from dialysis or a kidney transplant, the better, is how we look at it.

That is THE news for the week. We are going to sign off and get some rest, and catch up on work and a TON of family / foundation / household stuff. Our dishwasher is on the blink, and Jo Ann has not had a minute to go to the joint in Burbank to buy a new one. And they won't do it over the phone. So, that's one of the things we're going to do when Polly gets here at 2 p.m.

I am trying to talk Jo Ann into taking 90 minutes tonight to go to a movie. Just to drink Coke, eat popcorn, and zone out in the dark. I'd watch a blank screen at this point. We'll see how it goes.

Will check back later. SPREAD THE GOOD WORD!

CAT Scan Fever or We Need Your Love All Day And All Of The Night

7:30 a.m. is our call time this morning at the Radiology Lab.

From the jump, this scan has been our first major goal. When we get there, Pablo will down a couple pints of contrast fluid. It looks and smells like Hawaiian Punch, and has to be consumed over a period of 90 minutes. Who knows what it actually is. It works and, to a five-year-old, it's yummy with a capital Y.

Once Pablo is highly contrasted, we get called in to the donut scanner room. He lays on his back on the motorized, sliding table. Jo Ann goes behind the glass where the technician sits. I don a lead-filled jacket, and hang out in the active zone with Pablo. I try to take his mind off of the immense machine, by singing silly songs about squirrels, talking cupcakes, snakes with feet, or anything that i can rap to the tune of our family fave "Hammer Time." That always gets him.

Usually, this fool in the rain shtick only has to go on for a few minutes, until the technician talks to us through a tinny speaker built into the ceiling. It's like getting instructions when you're in a police line up. Not that I've ever been in one, but you know what I mean––that kind of thing. The tech usually says, "Hold your breath. Don't move." And then the table slides into the whizzing and whirring CT machine. Just the kind of scene a little kid wants to be perfectly still in, right? Pablo is quite good at it though. He holds his breath, with his cheeks puffed out like one of those dudes from Nemo. Cuteositous Maximus. And he gets that I'm not moving look too. It's one degree to the left of I didn't do anything.....

I'll try and take pix. If we're having a good time, it'll work. If he is sketched out, I won't do it. While all this is happening, Jo Ann is in the cockpit with the tech, asking as many questions as she can, to get the full picture on what is happening. And to be certain they are getting what they need. The last thing we want to do is go back in for this scan cos they didn't get the full area. We have no clue how long we'll be at the hospital today.

Hopefully, we will be eating lunch on the outside. That is a good goal. Then we wait for Dr. Mascarenhas to read the scans, and confer with his colleagues if necessary, to determine the status of the tumors on each of Pablo's kidneys. He will be in touch with us before the end of the night to discuss his read of the scans. We need your thoughts, light, prayers, meditations–whatever you do–like, all day and all of the night.

The minute we get off the phone with Dr. M, we'll post the news. Thank you, we love you, and we can feel you wherever you are. xxoxo from all of us.

Blood Donor Of The Day

Here's Alix Madigan, in the chair at CHLA this afternoon.

Scott Henriksen and Alix both made their way down to the CHLA Blood Lab today. In addition to opening her veins, Alix and her husband David have given our family and Francine their front row Dodgers/Angels tix for Friday night. They have also arranged for Pablo and Grady to meet the Dodgers before the game, and get balls signed. How cool is that?

We are headed to bed. Up early tomorrow morning for our big CAT Scan.

Hello Nasty

Chemo went well today. If the CT scan on Thursday reveals the right data to the docs, we'll be on track for surgery next week.

If we get the green light for surgery, this means Pablo will not receive chemo next Tuesday. Instead, it looks like he will get a blood transfusion on Tuesday, to prepare for surgery on Wednesday (Polly and I donated today; Jo Ann's dropping some O+ juice on Thursday). After surgery, we'll be rollin' hard up in a double-wide suite in le Tower de CHLA for the following 5-7 days. That's right, we'll be scanning the friendly skies lookin for fireworks on the 4th of July...and beyond. We're pretty excited to be going there. The AC rocks in that place.

Since this journey began on May 17, we've been running toward this magical date of June 26: the CT progress scan. The CT scan, we've thought, will show that the tumors have shrunk, or at least stopped prospering. We are still only filled with hope and absolute drive, and out all our intentions on that hand. Still, staring down the barrel at our 7:30 a.m. appointment on Thursday is much scarier than Jo Ann and I thought. Hearing Dr. Mascarenhas talk plainly and soberly about the myriad options we might be facing in our post-scan meeting with him is scarier than we thought.

Seeing Pablo running round the house naked this evening, his veins filled with Vincristine, without a care in the world or any awareness of what is going on inside him, is scarier than we thought. Of course, we don't want him worrying about any of this. It's just that juxtaposition of sweet and sour. It would get you choked up in a movie. When it's happening in your life, to your son...it's devastating. Nothing can change that. If you don't let all the emotions cycle in and out of you, it's the same game as if you were just walking around negative all the time. So we try to talk about this stuff when it comes up–between us, with friends, or with our support system at large. I went upstairs earlier, and Francine was consoling Jo Ann in the kitchen. She is having a very tough time with it this evening. I am trying–trying–to breathe through it. I cry when the tears come up. There's a Smiths lyric that keeps ringing in my head since the CHLA afternoon: "I've seen this happen in other people's lives and now it's happening in mine." The song is called "That Joke Isn't Funny Anymore," off Meat Is Murder. If you know that song–if you've had occasion to have lived that song–you are probably reaching for the tissue box right now.

Wow. Was that a bummer way to go? Sorry. I get on a wave, and just take it.

I am fried. We are fried. It's been a long day, gave blood and got cookies and juice (heaven), gotta pick up Mr. Naked Boy Lion off the couch upstairs and put him in bed. It's late, I need some sleep.

But, wait–how can I tell you a goodnight story without showing you some pictures?

I have an irrational fear of needles. The slight smile on my face tells you that Francine's tried+true Aussie trick–blowing on the needle as it punctures the skin–was a HUGE success! BTW, that bag o' blood was HEAVY!

Above: the Blood Platelet machine. Those of you who've signed up to donate will get to know that thing real well.

Below: the back cover of the Beastie Boys album Hello Nasty. In my delirious state, I thought the platelet extractor device looked like it. Now I'm not so sure. But any time I get to make a music ref on the blog, I take it.

Maybe it looks more like the Chicago El System below?

Say Hello On A Day Like Today

Pablo, Polly and Jo Ann are playing Uno on the exam table. Pablo is a ruthless gamer. A pirate!

Francine is napping on the desk in the exam room. And I've got Lidocaine smothered all over the blood-drawing zone of my left arm, so I can donate blood for Pablo in a few minutes. Polly got bled earlier and said it kinda hurt. So I am not takin any chances. There's a 50/50 chance I will pass out at the sight of a needle anyway, so the Lidocaine helps.

Since arriving at 2pm, we've gotten Pablo's port accessed, blood samples drawn, and now the (sometimes long) wait for Dr. Mascarenas is on. He is a busy man, and we always know that any wait we have is because Dr. M is spending time with another family-the same kinda quality, focused time he will spend with us when he gets here.

Before coming into the exam room, Pablo and I hung in the playroom. We sort of destroyed the giant wood dollhouse. OK, destroyed might be a strong word; a better way to put it is 'wreaked havoc.' When we got to the d-house, there were a dozen 'everyday people' human action figures standing. When we left, a dozen had falled. Hard. I love playing with Pablo when we engage on a mutually kooked-out activity. Especially one that makes him belly laugh the way he was today.

After that, we colored cut-out figures of a parrot, a fish and a frog, and glued them onto a giant piece of paper-a collage, with feathers, glitter and tissue paper bunting at the base. Pablo wrote his name in the upper lefthand corner, and 'Papa' next to it.

When I asked him to write my name, he pulled out his favorite laughing-exasperated character. "Papa, I don't know how to write a 'J'!"

And the beat goes on.... More checkings-in later.

NOVENAS, a seven letter word in Word Twist

I'm still basking in the afterglow of our beautiful circle from yesterday. Closing my eyes and seeing a clear vision of all that were there and acknowledging my love for each and every one of you. I asked Carrie to send me the poem that Wahe Guru recited and here it is:

The Tao of Healing
-Trevino

The Spirit of Healing, like an infinite
cloud
Takes the moment's perfect form,
Yet it is formless;
It can be seen,but not touched
Felt,but not held;
Light on the outside,dark within.

Yet even the darkness is teeming with
life,
And failed knowledge bears the seeds
of faith.

Therefore,allow faith to reveal;
In the last, the First is seen
In disease,Wholeness
In a blade of grass,all of creation.


Also, I want to say that in the crazy way that things present themselves to us, my dear dear friend from high school, Julie Cangelosi Ryan, who I love beyond words, and who baptized Pablo in her den when he was just a baby, has been praying a 54 day novena for Pablo for three weeks now. WOW. Even though I am not a practicing Catholic, I always feel a sense of comfort and calm with the repetition of certain prayers that were said so many times in my life. Julie knows that I have a special place in my heart for Our Lady of Prompt Succor, the patroness of the great state of Louisiana and my beloved city of New Orleans, AND enshrined at our Alma Mater, Ursuline Academy, the oldest Catholic girls' school in the United States. I've been calling on her quite a bit lately. So much so, that I feel like I am up for the challenge to pray her nine day novena for my little guy, knowing very well that Our Lady does not let us down.

My grandmother, who did a second baptism on Pablo with the Holy Water that she brought back from Lourdes, France, passed away this past November. During the end of her illness, she sent me a beautiful figurine of a mother holding her baby, along with a note saying that it reminded her of me because she understood that being a great mom was what matters most to me in life, and that she believed that I was, in fact, doing a good job. At her services in New Orleans, my Aunt Linda asked me if there was anything else that I would like to have of hers. I couldn't think of anything except her rosary. The director gave it to me at the end of the service. I left it with my mom, and have asked her to bring it out to me when she and my father come back on June 30th, two days before Pablo's surgery. My plan is to start my nine day novena tonight and start Julie's 54 day novena with my Grandma's rosary on July 1st, the night before Pablo's surgery. I'm excited, so thank you Julie for inspiring me. Love, Jo Ann

These photos are from Christmas 2003



Me, Pablo and Julie with the Holy Water after Pablo's impromptu baptism




Grandma baptizing Pablo with the Holy Water from Lourdes




Grandma, Pablo and Grady

Birthday Party Pix

Pablo's fifth day party on Saturday was hot and sweet. A small army of friends set up the party–physically and logistically–so all we had to do was walk down the hill to the park. This was a huge relief, as was the perfectly shaded spot they chose under a giant tree. It was 95+ degrees Saturday, but somehow, we never felt scorched.

Steven Michael Schwartz, the music man of Walther School ripped through a set of songs that had the kids screaming along and dancing in the aisles. He is a gifted man, and we appreciate the energy he brought to the party. His songs also provided some shelter for Pablo, who has developed an enlarged shyness since his treatment started. The constant presence of adults– doctors, nurses and our friends–around him constantly overwhelms him. Prior to 17 May, this wasn't really an issue.

Since then, Pablo has started to bury his face in our shoulders or laps when he's confronted by outside peeps. So, the singalong took the focus off Pablo and onto SMS and the group. When we bought SMS' bday rock party at the Walther School auction back in March, we couldn't have known how ideal it would be. Just another signpost that led us to a place we didn't know we were going to.

Pablo had a great time hanging with his friends, playing in the trees and grass in the upper reaches of the park. And, of course, he had another field day opening prezzies back at home. We are also BEYOND GRATEFUL for all those who dropped contributions in the Pablove Foundation box at the party. Thanks to all of you, we are quickly amassing a healthy war chest that we will unleash on CHLA very soon. (More on the foundation, and our personal fundraising involvement at CHLA in a later post.)

Here are a few Polaroids from the party, taken by the father and son team Scott and Eli (first grade) Henriksen. If we manage to get more snaps, we'll post them here.

Grady and his little bro Pablo, who is reclining with a can of root beer that's nearly as big as his head.

Pablo, Papa and Mommy at the giant Pirate Boat bday cake.

Meditation de Pablo

Pablo at Lake Winnipesaukee, NH, June 2006, at Peter and Brie's wedding week. Photo taken by our longtime friend, Lara Porzak, who figures into our lives in a cool way. Way back in the day, when Jo Ann and I were just friends, we went to one of Lara's shows, and Jo Ann lent me dough to buy a Lara pic I fell in love with. I didn't have cayysh on me, and to this day, I never carry the stuff. It was a sweet gesture on Jo Ann's part, and I have always remembered that. The photo I bought is now hanging in a hallway in our house.

Grady, Jo Ann, Peter and I just left the group meditation at The Awareness Center in Pasadena. Inside the Center, the air was calm, neutral, welcoming. The air outside was desert hot. For days, living in LA has felt like walking around inside a blast furnace. In a very real way, it's a reminder that, after all, we live in a desert. The extreme temps also feel a bit like how the insides of our bodies feel since 17 May.

Carrie Hirsch organized the whole thing. The ceremony was beautiful, powerful. We felt centered and at home the teacher, with Wahe Guru Kaur. Carrie her husband, Dan Bernath (just back from the Network Promo Awards in NYC–he cuts comedy promos for ABC; this is relevant if you click the link on his name) and 30 other friends from all corners and eras of our lives joined us. The circle included people we talk to daily, and many people we haven't seen in a while. It included people we work with, as well as peeps we have done vast amounts of spiritual work with (years of meditation classes and retreats with Tanda Tashjian), and many fellow parents The three of us had the opportunity to state our intentions for Pablo's recovery, growth and future life. We also got to give up our fear, anger, self-blame and any other gnarly stuff knockin' around in our heads.

A group mediation would be great on any day. Once the three of us sat down facing one another in the center of group, we knew we needed it TODAY. After the three of us stated our intentions and the items that we were offering to let go of, everyone in the room stated their intention for Pablo. Then we did powerful healing meditations and chants. What a beautiful thing.

OK back to the meditation.... In addition to the prayerful healing we did for Pablo, we also included another child in our meditations today. Through our dear friends, Anne and Neal Morris in New Orleans, we have been introduced to a family from their son's class who is also going through treatment right now for bi-lateral Wilms' Tumor. What are the chances? With only 4 or 5 cases a year in Northern America, we get hooked up with another family sharing an incredibly similar experience. Caitlin Russell is being held firmly in our hearts during this journey. Click here for her blog.

OK, I'm crying just thinking of today and these two beautiful children.

Good night.

Love,
Jo Ann, Jeff and Grady

PS (from Jeff):

I have never done Kundalini Yoga before. The mediation we practice is sort of omni-practitional, and we don't chant or anything.

And I have to admit that today I was distracted (in a great way) by the similarities between the chanting and terminology used in Kundalini, and the lyrics of one of our fave bands, Love And Rockets. Obviously, their song "Kundalini Express" epitomizes this.

Allow me to relate a "Luckiest Guy In The World" story here. A couple months ago, Dangerbird artist and friend Eric Avery set up a hang with Love And Rockets for me. It turned out that they were rehearsing for Coachella in the room next to our band Darker My Love. I mentioned this to Eric, and sort of jokingly asked if he could hook a brother up to meet a few of his idols. A few minutes later, he called back and said, "It's on. Just pop your head in and tell them who you are."

30 minutes later, I was walking in the door. They were simultaneously nice and standoffish (read: badass and legendary British rock dudez). I asked them to play "The Light" for me. Bassist David J genstured toward the giant song list taped up on the wall, and stated, "We're not playing that one on this tour, mate."

It all makes sense now, writing this. In a strange, roundabout way, loving those songs since Scott turned me onto Love And Rockets, and their predecessor, Bauhaus, back in seventh grade...then meeting those dudes back in April...and, today, hearing the basis for so many of their lyrics in the Kundalini ceremony of life....

The L&R connection with Scott also feels like a bit of a nod from him. We listened to those records-and I am not exaggerating–thousands of times. Now, I am not sure what I believe about afterlife. I'm pretty sure I believe that people hang around those they love after they die. Yes, I do believe that. And, so, in my heart, I connect the dots from 1985 to 2008. Once again, music is a giant, decades-long road map for life for me. Same for Jo Ann. When the Youtube clip of "Kundalini Express" started this evening, Jo Ann went nuts recalling all the times she saw them in New Orleans in the '80s. She knew all the words, the backing parts, and still remembered how to dance in unspeakable '80s styles.

Rock and roll is why I get out of bed in the morning. I am grateful every day that music is how I make a living. It's always there for me, and constantly reveals different messages and meanings, depending on where I am in life. Not sure that video games or 'the internet' affect the life experience of humans.

Grady already has this bug for music. Pablo does too. And I hope that it flowers in him as his perception of the universe, literature, fables, analytical thinking, and cancer-booty-kicking blossoms along with his growing phyiscal self.

So, in keeping with the spirit and teaching of our meditation: Here's to a long and healthy and vibrant life for Pablo. And for ALL OF YOU, AND YOUR CHILDREN AND FAMILIES AND LOVED ONES.

HAPPY BIRTHDAY PABLO!

Five years ago today, Grady counted contractions and famously smashed the crystal of Jo Ann's watch tripping up the stairs, Papa drove really fast to Cedars-Sinai, and Jo Ann did all the hard work to deliver...
...P A B L O ! If you know Pablo, you know he is a torpedo of a kid–boundless energy, a buoyant spirit, a husky little voice box, and enough laughs to fill Lambeau Field.

That morning five years ago, he literally F L E W out of Jo Ann and into Dr. Serden's hands. And he hasn't stopped flying since. This is how we k n o w he's going to KEEP flying as far and as high as he wants in his life.

Here's to a complete and thorough butt-whipping of every cancer cell in Pablo's body. There could be no better bday wish on this special day.

Thanks to all of you friends and family, new and old and even people we don't know who are reading this blog. We can FEEL your love, and your light. Keep it coming!

Our best wishes and love back to you,

Pablo, Grady, Jo Ann and Jeff

Music News Site THETRIPWIRE.COM Gives Some Pablove

TheTripwire.com, the music news website of Fader Mag, issued a Pablove missive yesterday. And they chose the most rock 'n rollest pic of Pablo to fly above their story (taken by Polly at their secret picnic spot behind the Frank Lloyd Wright masterpiece atop Barnsdall Art Park in Silverlake).

The story beats the drum for our foundation mission so clearly that we can just ask y'all to click the link and check out their story...so my lazy butt doesn't have to write it myself! We want to thank Chip Adams and Erin Chandler from Tripwire for the ink. They have been good friends for the past five years (the entire length of P's life), as we have built Dangerbird. I can assure you that I never, ever thought we'd see Pablo's pic on their website. Well, I've always hoped I'd see him up there, but in, like, 2022, with a guitar and a five-star debut record review.

The Tripwire piece is the ideal flashpoint for the discussion on the Pablove Foundation, the launch pad for giving back our experience, strength and hope to the pediatric cancer community in and around Childrens Hospital Los Angeles–one of the best kids' fix-up shops in the world, and one of our neighborhood institutions. The foundation will make annual contributions to Wilms' Tumor research and treatment at CHLA's Saban Research Institute. We will also support activities, programs and play rooms in the soft tumor unit at CHLA, where Pablo is being treated.

Our family needs all the help it can get in raising funds for Childrens Hospital Los Angeles and the cancer reasearch and treatment programs there. CHLA is an not-for-profit, indie operation, and they treat everyone, regardless of insurance status or ability to pay. Our family, perhaps like yours, have been fortunate in life. We live in a house where sun shines through the windows all day, we have great health insurance, and, like, we haven't missed a meal in a while.

Step one foot into a place like CHLA, and you'll know why I say this. There are people four minutes from where I am writing this, sitting for hours in a waiting room, sick child in their lap, with no insurance, no ability to pay a med bill that costs hundreds of dollars, let alone tens of thousands of dollars. Many of them don't speak English, and can only communicate with a doc or nurse via an interpreter. Maybe they brought their sick child to the hospital on the bus. Or maybe they are the family from down the block who are in between gigs in a creative field, and they had to use the dwindling funds in the bank account to pay the rent and fell behind on Blue Cross payments. In any case, they probably aren't putting in hours at their job while spending hours in a waiting room.

Those people need our help. The media calls them the working poor. The unisured masses. Whatever you call them, they need our help. When it comes to healthcare, this is where no child should be left behind. And, while we wait another generation to confront the national healthcare issue, we are asked to pull out our wallets and contribute some of our earnings, so that another might have an easier time. And that's what we will do with the Pablove Foundation.

The funds we raise, and the energy and personal resources we can match it with, will fuel our efforts. We have been asked by the CHLA Development execs to get involved in a number of projects: the Nautica Malibu Triathlon, which benefits CHLA, (I did last year, and am signed up to do again this year with Adam Harrison from Dangerbird); to join the committee focused on raising $2 million for the in-progress new CHLA hospital from Silverlake/Los Feliz residents; and general marketing / CHLA awareness activities in the community surrounding the hospital (they don't have a marketing department, but Dangerbird does!).

Obviously, our ONLY concern at the moment is getting Pablo better. Time is precious these days. So, we've been meeting with the development people while we're sitting around waiting for test results at the Oncology Clinic. Also, Jo Ann and I have decided that while P is in treatment, I will stand in for most of this stuff. We want the foundation and our fam can get a hand in the game now, while the iron is hot in our hearts. When Pablo gets his "all clear" report card, she will step in and join me. And I can only imagine the fireworks that will erupt at that point....

Coming Home From Hospital

The blood tests are back-Pablo's blood is strong, and free of infection. The fevers are a normal part of chemo that we're getting used to. We're happy-and lucky-that to date the heat hasn't been an indicator of a larger blood prob.

Since we are just 48 hours out from Pablo's birthday party on Saturday morning, Dr. M gave us clearance to keep the party on the sked! (There was a chance that he was gonna instruct us to cancel.)

With that, we're outta here, and I'm headed to the office.

     

Tumor Shedding Gets Us Hot

Jo Ann wrote this post yesterday. Pablo was fine when she started it. By the time she finished it, Pablo was back in feverland. So, we kind of made this post a log of the past 15 hours in our lives.

There is a theory we've heard from the docs and nurses that 'tumor shedding' (how great is that term???) has all kinds of side effects, including fever and other things I don't want to write about here. We'll focus on the fever part for now. And, can I just say that the idea of the chemo burning Pablo's tumors to bits gets us all hot. He's not the only one up in here who's burnin' up over this!

We call this kind of post a 'Life During Wartime'–one minute life is normal, sunny, calm and you're writing from that perspective; the next, cancer-fever-tumor bombs are blowin' up all over the shop, and yer writin' on the run.

OK, here it is:

Tuesday night we are back where we were three weeks ago–wow! Was it really that long ago when we visited the ER and the Oncology clinic three days in a row? I would love to say that it's not as scary this time. But to be honest, when I saw the digital thermometer blinking RED and displaying 102 degrees, my heart started racing and my breathing felt constricted instantly. I retook Pablo's temperature three times, thinking somehow, magically, it would drop 2.5 degrees and we could just get ready for bed.

I knew that we would have to go into the ER, and I started preparing us for our evening there. Francine assisted with the numbing cream for Pablo's port-a-cath, and then got our hungry boy some fruit, which is all that he was interested in eating. I packed our bag with the books and blanket that Pablo requested. Jeff wrote a quick blog post documenting our moves to CHLA, and got Pablo into the car.

We took three cars to the hospital–crazy, but Francine would be going straight home from there, and I had to go pick up our big boy at the airport (which was something that I was looking forward to for, hmmm, nine days!).

We have the ER/Triage thing down to a science. I go in with Pablo, all of the necessary forms of ID in hand and register (under five minutes). Get Pablo's bracelet and get into Triage. All the vitals are taken there (again, under five mins) and we are on our way to an exam room. I call down the hall for Papa (and, in this case, Franny), and off we goooooo.

Things were moving along nicely and we all felt good, knowing that Pablo would need to have blood drawn and antibiotics administered through his port. For the past few weeks, we have managed to access the port with NO pain. So I headed out to LAX to get our Grady. Along the way, I called in to see how things were progressing, to find out that there was some sort of a situation happening, but that all was being taken care of. This sucks! I'm a total control freak. Not being there was driving me nuts. The nurse asked what size needle to use (THE SMALLEST, HELLO!) and everyone in the room knew that this was not going to go smoothly.

This is what the author Gavin de Becker refers to as THE GIFT. His books 'The Gift of Fear' and 'Protecting the Gift' are the only two parenting books that I recommend to people–and they're not even "parenting books." What happened in the ER last night, was us not protecting the gift. This is the thing: we live and learn. Just when I think I've got all the answers to all the possible questions that are going to come up, because my binder is super organized with beautifully labeled tabs, some nurse throws a curve ball and asks what size needle your child takes in his port.

I ordered three copies of 'Protecting the Gift' today (I lent mine to someone long ago). I am looking forward to positive reminders that MY INSTINCTS are my gift and they are always correct. When a nurse vibes me out, she's not touching my kid. Period.

Yesterday, things seemed to be better. Pablo slept in until 11:30 a.m. and felt great for a few hours. Around 3:45 p.m., he started with a low grade fever. We called it in and the oncology nurse at the clinic told us that they don't take any patients in the clinic after 3 p.m. and that we would need to go to the ER again. Based on how all of this went down last time, I asked if we could stay home and give him Tylenol, and come into Urgent Care in the morning. She admitted that she could not make that call and I asked to speak to our doctor. He was not available until 5 p.m., so we waited at home and had dinner.

The nurse called back and let us know that Dr. Mascarenhas said that we could, in fact, stay home this evening, keeping a close eye on our little guy. The order was to give him Tylenol every four hours throughout the night based on his temp, and bring him back this morning, when they may or may not give him another round of antibiotics.

At around 10:30, Dr. M emailed us (how great is that?) and gave us further instruction on what to look for throughout the night. Two indicators to bring him to the ER: looking ill and having chills. (When we get through this, Pablo will have a license to ill.)

We made it through the night with no probs, although our young charge was cooking like a Wisconsin sausage all night. We're getting it together to go to the hospital (by way of Intelligentsia Coffee) for another fun run. They will be taking lots of blood, testing it every which way, to determine if P's white blood cell counts are in line, and whether he has an infection in his blood.

So, here we are, walking out the door, headed to CHLA a.g.a.i.n. We were told this game was a marathon, not a sprint, so today, Thursday 19 June 2008 in Silverlake, there's no better date and and place and time to get ILL!

Have we mentioned that CHLA has valet parking?

Home From Hospital, Safe + Sound...AND, Grady's Home!

4 hours in the ER with a 102 degree fever. Ouch. The roughest ride we've had so far in terms of getting stuck in the 'hospital' turnaround. That's the way it goes sometimes. Francine was over for dinner and the Celtics game, so she was with us. Tony saw the blog post about going to the hospital, and raced straight over to keep us company. He got an escort to our ER room from a giant security guard, who, in so many words, told us we were not allowed to have a party in the room. Only two guests allowed, or somethin' like that.

The party was good, until the medical stuff started happening. To put a finer point on it, the nurse who mis-accessed the port twice and then couldn't get it to work. In all fairness, she has a tough job, and she did the best she could.

Still, it hurt Pablo (a first), and was frightening for Francine and I, cos we knew it was a botched job just from looking at it. Usually, the nurses access the port like they're plugging in a toaster–straight in...one, two, three...there's a grace and purpose to their every move. Didn't go down that way on the first try tonight. This was a case of the Needle And The Damage Done. And now we know a little bit more about how to vet the nurse who's going to stick him. We shoulda known when she asked us what size needle to use.

This is why it's always good to be politely assertive and clear with the hospital staff before they touch Pablo. Tonight, I was somewhere between 'politely assertive' and 'grumpily clear' with the charge nurse. The quivalent of a rock and roll tour manager or a line producer. Not my fave way to be. But, then, I've never seen my son get stuck like a pin cushion to no avail. And I do think anyone jabbing needles in children–my children–ought to be qualified to do so. "Ooops" is not a word I want to hear in that sitch. So...I wasn't comfortable or happy, and I found the person in charge that's the truth. Oh, and I'm a Taurus. So that absolves me, no?

The only thing that really matters is that P's numbers checked out, and we are finally home.

PLUS, Grady's home from Costa Rica!!!!! Jo Ann brought him straight from LAX to the ER. Then he did some damage at McDonalds, with Tony as his guide. I'm hoping that Tony will remember his MickeyD rendezvous with Grady when he is producing G's first album. Grady's not in a band yet, but he will be eventually, for sure. Although, come to think of it, Tony and Butch might get into a fight over who's gonna produce Grady's band (long, funny story that I won't get into here...).

Awwwright. I am seeing (and talking) double. Haven't been up this late in a looooong time.

Sweet dreamz.

CELTICS FEVER!

Chemo was a win today. Went in like a charm.

The Celtics clinching the NBA title has made it all the better! WHAT A GAME! They played like Led Zep in '76!

Now that we've seen Peter's dad Irv and big bro Wyc onstage, center court at the Garden, screamin' with their team, and Wyc's got the trophy in his hands, we've got somewhere to go: CHLA Emergency Room!

Yes, that's right, all this excitement's got us so hot, Pablo's got a fever... And that means we're on our way to the intersection of Sunset and Hollywood Boulevards. Doctor's orders.

We'll keep you up to date throughout the night.

Meditation For Pablo This Sunday - Mark Your iCals

Our friend Carrie Hirsch stood beside Jo Ann as she got her hair cut last week. This week, Carrie is putting together a big group meditation for Pablo (details below). PLEASE COME OUT IF YOU CAN–EVEN IF YOU HAVE NEVER MEDITATED!

Carrie is mother of Pablo's homeboys Miles and Dexter and wife of Dan Bernath.... We met these guys in Music Together when Pablo and Miles were wee tots, and we've been close with them ever since.

This is her rundown of her plan for Sunday, in her own words:

Hi Everyone,

There will be a Healing Circle for Pablo this Sunday, June 22 at 3 p.m. (full details below). This is one day after the Summer Solstice and Pablo's birthday, and just before the CAT scan on June 26 to see that the tumors are responding to the chemo.

If that checks out, they will head into surgery to remove BOTH tumors and save as much of BOTH kidneys as possible.

Of course we all know, the significance of group prayer and meditation. Right? Vibrationally, a large group all simultaneously sending out one positive visualization. Well, you know...there'll be a healing for sure!!! And let's just say it's gonna be absolutely incredible!

For reasons of wanting to stay focused and have our energy there for Pablo, I am choosing to keep my kids at home. I do feel that meditation is positive thing for children to be a part of, but in this particular circumstance, I think we'll be more effective if we keep it to adults.

For those who cannot make it, your prayers and positive thoughts will also be very effective. So please join us even if you aren't physically able to show up.

Pass the word on to *anyone* who would like to be part of this. This circle will be facilitated
by the owner of the Awareness Center, Wahe Guru Kaur. She is a Yogi, a Healer and an incredibly wise and inspiring woman who has been kind enough to put this all together for us.

Here are the details:

Sunday June 22 at 3 p.m.
THE AWARENESS CENTER
2801 E. Foothill Blvd. Pasadena, CA 91107
(626) 796-1567
www.awarenesscenteryoga.org

Happy Father's Day To All You Baby Daddies Out There

Pablo with his latest art acquisition

Happy Father's Day from all of us to all of you daddies out there. Our day was fun, yet it wasn't the same with Grady in Costa Rica. I took advantage of all the perks of the day, asking Jo Ann to bring me coffee and the paper in bed. Pablo slept in, waking up around 9:30. Pablo wanted to eat breakfast at our fave local spot, Mustard Seed on Hillhurst in Los Feliz.

The walls at Mustard Seed are filled with the work of Silverlake artists, including Mel Kadel, whose art adorns the cover of Dangerbird artist Silversun Pickups' EP Pikul. Today, a couple paintings by one of the MS servers caught our eye. The painting you see Pablo holding above is the one he chose, by Kelly Lynn Jones. It's gorgeous, and adds to his bedroom collection.

In a time like this, it's nice to be around familiarity. The MS staff, whom we've known for years (some since Pablo when he still in the oven) were incredibly sweet. Steven Scott from the bands Irving and Afternoons works there, and surprised us by picking up our brekkie. Totally
unexpected, and totally gracious. I have talked a lot about our LA-as-small-town experience, and our friends at Mustard Seed are a big part of that.

Mustard Seed is like the indie rock/neighborhood clubhouse. We run into people we know there all the time–friends, neighbors, bands. We always run into Obey/Giant mastermind and longtime friends Shepard and Amanda Fairey, and their beautiful daugters, Vivian and Madeline. Amanda asked Jo Ann how things are going, and Jo Ann began to cry. I'm not sure that she wants me to talk about this. But I want to, because it is part of our experience. She mentioned today that the blog sometimes feels like it's all about fun and funny stuff. I agree. I have been favoring those aspects–looking for them–because hope, light and positivity are the fuel that we need to get through this. It's not that Jo Ann's statement contradicted that. I took it to mean that there's more to what we're going through than odd observations about 'Pretty In Pink.' I agree. And I want to write more about the while experience going forward. Even the sad stuff.

For both of us and Grady, the sadness, fear and uncertainty come in waves, without warning. Crying is a useful release of all those things. Sometimes just crying feels like an internal emotional oil change; sometimes crying just leads to more tears.

All that said, we are not without hope. But, let's face it, regardless of how good the statistics and Pablo's actual condition are, he does have cancer. It's not like someone got our pizza delivery order wrong. This is serious business. Sometimes a look in Pablo's eye, or seeing him get frustrated because the DVD player is on the fritz, and thinking 'The damn DVD of Wallace And Gromit is makes him happy and that DVD player better get its act together!' Or the thought, 'Are the tumors getting smaller?' just slams you in the brain with the power of 1,000 Icees.

Fast forward to 4:30 p.m. We went to the Celtics / Lakers game (thanks to Peter and Brie for the tix!) with my cosmic comrade Sean McFarland (more on him in a future post), Francine and Ben. Matt and his girlfriend Seonna and her daughter Tigerlilly babysat Pablo. They all had a great time, coloring, playing swords (translation: Pablo stabbing Matt!), and eating In N Out Burger. Seonna dubbed these two five-year-old rascals 'Mr and Mrs Smith, Jr.' Here they are, in action:
We saw an incredible b-ball game. Sean's cousin Jordan is #5 on the Lakers. I was rooting for the Celtics. It was a rough game, cos his cuz was partially responsible for whoopin up on the Celts!

It felt good to go into an arena. And it felt good to have Matt and Seonna back at the house, knowing Pablo was in excellent, loving hands while we were rockin the bonics, looking for celebs.

Next holiday: Pablo's fifth bday this Saturday!

See you tomorrow.

Good Morning, It's 1986

This was my post from yesterday. I forgot to upload it! Father's Day check-in coming soon.

We just got our new DirecTVHDDVDVDDDDDVVRR box yesterday. (New = it works!) I couldn't sleep, so at around midnight, I went upstairs and installed it. that took 60 seconds, so didn't help my sleeplessness much. When I went back down to bed, the box was still 'acquiring satellite' or whatever. turns out, Jo Ann woke up at 3 a.m. and couldn't get back to sleep. So she came upstairs...and finished the programming of the box. Pretty darn funny how that worked out.

When Pablo woke up this morning, he was staring down the barrel at a blank DVR. None of his programs have Tivo'd yet. No "Maggie And The Ferocious Beast," no "Little Bear," and no "Max and Ruby." Before he could freeek the funk, I scrambled and looked for something–anything–on TV. (I am clunky at this, cos we only really watch 'Tivo'–ie, the media equivalent of 'i didn't inhale,' i know, but true....) The first thing I saw that was appropriate was also one of the best movies ever dedicated to film: 'Pretty In Pink.'

While there are few truths that apply to everyone, everywhere, 'Pretty In Pink' as a filter for life is one of them. Anyone our age (yes, that includes you) was touched by this movie, its characters, its actors, the music that springboarded from it. This movie has soul, and that's why it was so cool to stumble upon it. We were soothed by how it took us back to '86, and many other subsequent years. We also loved sharing it with Pablo. The scene where Ducky dances around Molly's record shop lip-synching to an R&B song...he got that! In fact, last night, i was playing guitar and he started oscillating wildly, surely an ode to Ducky.

In high school, I was Ducky. For sure. Jo Ann says, 'I wasn't from this movie, only you were.' That may be the case. Cos I was a helluva Ducky.

This brings me to a related topic.

I have many basic beliefs in life–here are some sample entries in that list:

• As an American, I can never ask for directions in London

• I know there is a God, because I have never gotten into a head-on auto collision surfing through the twisty left-hand blind curves of the Silverlake hills

• Once in a while, it's OK to crank KLOS (ie, klassic rawk) in the car. And it's even more OK that I know all the words to every song

And, most relevant to this post:

• Everyone everywhere is one of the characters out of 'Pretty In Pink'

Like I said, I was Ducky. Were you, perhaps, a spicy, sinister James Spader-type? Or were you the super-cute, crossing-the-social-tracks Michael McCarthy-type? I have known quite a few Molly Ringwalds over the years–cool girls, cool clothes, totally know who they are.

WE ARE ALL BALD! Almost...

Today was our day for shearing. Not much can be written about this. The pics kind of say it all! We are all loving our new hairdos. Pablo especially. Without saying it, I think we were both worried that he'd look 'sick' with his hair shaved off. And that he'd be self-conscious. The good news is, none of that happened. He loves it. He is curious about his dome. He is curious about mine. He is wondering why Mommy sheared her hair too. So much better than him wondering why people are staring at his thinning hair and balding scalp.

So, this is Pablo 2.0, and like so many aspects of the cancer journey, it's not going to way we expected. It's just going the way it's going. And it's cool.

A special note about our longtime friend Michael at Rudy's. I mentioned him in a post last week, when P and I went in for a trim. Can't say enough about him. Every four to six weeks for the past seven years, he has cut my hair. Somewhere along the line, Grady started going to him. It must have been at least six years ago. And he has known Pablo since he was in Jo Ann's belly. Michael is a classic hair stylist–he loooooves to chat, and is almost like a therapist. He is a compassionate, caring person. If I ever look stressed out (imagine that!) in his chair, he asks me what's up, and talk to me about it. He is very good at getting it all out on the table.

In fact, Michael has a one-man show called "Third Chair From The Window" that he performs after hours at Rudy's. It's stories about his family and his clients. Next week, NPR is coming in to do a feature on him! We've never seen the show, and we're looking forward to seeing it next month. As soon as I can find a link to it, I will put it up. I started to cry when we were in there yesterday. Michael cut Scott's hair when he was going through chemo. Never, ever thought I'd see him cutting my little boy's hair for the same reason. But, this is how our story goes, and we were glad to have that consistency and comfort. As he was shaving my head down, a wave of sadness smashed into my heart. Jo Ann noticed it, and came over to comfort me. It felt good to cry, even if it made hair stick to my face.

So, without further ado, here is the story of a little boy's first major haircut.

Our boy lion (he made up the name himself), looking tired.

Michael and his new best client

Halfway there

Bow Wow Wow

Is it 1978, and is this the cover shoot for a No Wave album cover?

The new Pablo, downgraded from major threat to Minor Threat.

The mohawk was P's idea–without ANY prompting from us!

Mommy Mia!

OMFG! He has ears!

Pablo and his new fave toy, his fist.

Papa before...

...during...

...and after.

This felt really good on our heads. Dang.

Post-shearing dinner at Malo. The chips went down easier with no hair to get in the way.