Sunday Night Update

All is well in Silverlake this evening. Pablo has had a great day of chilling, playing with .027% of his toy collection, getting a foot massage from Nana, and eating. The new chemo has taken the pep out of his step in terms of appetite. He is ambivalent about many of his favorite foods, and he often asks for a particular food, only to sit and stare at it blankly, without taking a bite, when it's put in front of him. I remember this from when Scott was doing chemo. I'm glad I have that experience. It'd be confusing otherwise.

I saw Dr Mascarenhas at the triathlon this morning. The first thing he asked me (after inquiring how I rode) was how Pablo was getting along at home. I told him that P had trouble getting up from sitting on the ground Saturday, and fell down the bottom step on Friday night. In general, his legs are shaky and feeble. Dr M suggested it might be from laying in hospital bed for a month. The inactivity factor is huge, and is a sound hypothesis. Soon, the Vincristine could start to affect his walking and his grip. Dr M has assured us that this is a known side effect, and goes away when the Vincristine ends.

After dinner, Pablo and I embarked on a walk. We went down our hill, and up Castle Street, the looped over to upper Redesdale, which is a giant hill, about twice as high as ours. We call it 'Pablo Hill,' because it's where Jo Ann walked during her late pregnancy with Pablo. After four-and-a-half years of smiling at the mention of Pablo Hill, Pablo has renamed it 'Beans Hill,' after the puppy Santa brought him and Grady.

Tonight's walk was Pablo's first outdoor excursion. I was determined to get him out on his feet, and get some exercise into his legs and respiratory system. He was excited about it, until we got his shoes on. At that point, he stared at the ground, and went inward. He turned his back to me, and put his head on the couch. He said he didn't want to go. I figured he just wanted to stay home and play with his toys. Jo Ann came over, and got his attention. She asked him if he didn't want to go because he had to wear a mask. 'Uh huh,' he replied.

We reminded him that Papa was wearing a mask too, and that he could decorate his with a drawing. In an instant, he was focused on taking a marker to his mask. Ultimately, he instructed me to draw a mustache on his. He was happy. And, after grabbing a skeleton and a couple knight action figures, we were on our way.

Jo Ann took our picture at the start of the walk:

Below: We stopped to play with Pablo's knights and pirate skeleton heads on this wall.

I am so tired right now, but I want to come back to the feelings and experience we had today around the walk, and some of the interesting (read: fun, funny, hilarious, sad, heartbreaking, real) experiences we have had since coming home on Friday.

PS: in the triathlon this morning, our team did very well. The official results will be posted online Monday or Tuesday, so we don't know our exact team time. I know that I came in roughly the same as last year. I also know that I passed Matthew McConaughey on the road, and that he crossed the finish line on Adam's heels. The dude is an incredible swimmer and runner, that's for sure. The event raised $950,000 for the pediatric cancer operation at CHLA. Can I get a HELL YEAH? Jennifer Lopez raised $127k of that herself—incredible.

All I can say is, I cursed cancer for 18 miles. I figure I had 4,000 more miles in me this time last year. And a LOT more races and centuries leading up this event. Although I felt great on the road, and felt in good form, I definitely could not access that 'turbo' button. Every time I went for it, a cellular ache pushed back, reminding me that my ride for cancer started on May 17 and hasn't stopped. That said, my overall average speed was exactly the same as last year. The only way I can explain how I matched last year's time is to attribute it to Pablo—his energy, his fight, his love.

That's my story and I'm sticking to it.

Standing On The Beach: 2008 Malibu Triathlon

Right now, I am standing on Zuma Beach in Malibu, about to kick off the 2008 Malibu Triathlon. It's early, it's cold, and I wouldn't want to be anywhere else in the world. Why? This event is a benefit for the Pediatric Cancer Research arm at CHLA.

Just standing here with Adam Harrison (runner) and his buddy Brendan Carroll (swimmer) is sanding up to kick cancer in the pants. Last year this event raised over $700,000 for CHLA's cancer research efforts. I hope it tops $1M today. We'll see. Money is key ingredient in the fight on cancer—it takes greenbacks to pay the researchers, run the administrative aspects of a study, and to buy insanely expensive equipment needed to examine and process data gathered from kids. The first time Jo Ann and I met Dr Mascarenhas, he asked if we would allow Pablo's tumors and treatment to be part of the National Wilms' Study. Without hesitation, we said Yes. And that was before we knew what it was all about.

Somewhere on this beach are nearly all the doctors that are working to save Pablo's life—Drs Mascarenhas, Marcio Malogolowkin, Stein, Austin. And Terry Green from the CHLA Foundation. I don't know how many other CHLA people are here, about to compete beside me, but I understand it's over 150. Last year there were only 50. I like the uptick. These people fight every day on the front lines of the cancer war, and they all woke up at 4 a.m. today to fight in a unique way.

Last year, I did this triathlon with two other friends. I didn't raise a penny. Not because I didn't care about CHLA, but because I'd raised money for another event earlier in the year—a ride from London to Paris to see the finish of the Tour de France. I couldn't fathom hitting up all my friends for a second dip into the wallet. As I write this, I know that the Pablove Foundation is good for $100,000—including the 'Give Listen Help' CD compilation. And we still have some big ticket donors waiting to write checks (waiting for our official IRS Non-Profit Organization number to be granted). While that money was not raised specifically for this event, this is one of the many many ways I plan to support the donations you all have given us.

I can speak for our entire family when I say that we are determined to back the cash that's been given to the foundation with action. How can riding a bike 18 miles and bone-crushing speed help anyone, you might ask? Simple: me being here, along with thousands of other people, is a giant energy field buzzing along the coast of California. Among the masses this morning, there are parents of cancer kids, like me, and there are cancer survivors of all ages. There are all these docs, nurses, administrators, development (fund raising) folks—who, arguably, have the most gut-wrenching vantage point of all, cos they see all the cancer kids. There are friends of cancer survivors. There are loved ones of those who didn't make it (I am also one of those). And, of course, there are people here who are just along for the competition. No matter what, we all come together, and we create a massive source of intention, light, determination. POWER. It's freakish.

If you have never competed in an event like this, or witnessed it as a spectator, I can tell you it's like nothing else. I have done dozens of races, time trials (since I am doing only the biking part of the triathlon, this is a time trial, or sprint, for me), centuries and double centuries. But there is a part of what I'm about to embark on that is unknown for me: knowing that my son is asleep at home, about to embark on the full throttle cancer treatment of radiation and chemotherapy. I am a little scared that I won't be able to access the 'right stuff' out there today. Fear is something I grapple with every hour of every day, and I know it never does me good.

On this side of my first pedal stroke, I can also feel a six-letter rage inside me: c.a.n.c.e.r.

If I can control my breath, and relax on the bike in the first .5K, I will be able to utilize that rage. If I get all up in my head, and the rage comes spewing out all over the place the moment I settle into my saddle, I will be angry at something else—my brain. Riding a bike very fast, like so many other things in life, isn't what it seems. It's not about brute force or going Koo-Koo for Cocoa Puffs. For a trained athlete, it's more about grace and surrender than the grinding of teeth and the mashing of gears—some 'wax on, wax off' s**t. This is what Lance Armstrong has mastered in his career (that link shows one of Lance's TdF time trials).

No matter what happens out on the road today, I am reminded once again of the mirror image that exists—breathing, grace, acceptance—between riding my bicycle and being a cancer papa.

Pix and tricks later today.

Urban Outfitters / Filter / Pablove Foundation 'Give Listen Help' CD Compilation

Shirley Manson very graciously took time out of her interview on KROQ last Monday to announce the Pablove Foundation's first public fundraising project—the 'Give Listen Help' CD compilation. Our friends Alan Sartirana and Alan Miller at Filter Magazine/Filter Marketing asked us to participate in this music charity project that they do once a year with Urban Outfitters. You can listen to the Pablove parts of the interview here.

The comp is a limited edition, double-disc set, and will be sold exclusively at Urban Outfitters stores. It is filled with unreleased or exclusive tracks (including live versions and remixes). The first disc opens with a brand new Garbage song that was recorded specifically for this release. Other artists who have contributed to the cause include Radiohead, Jack Johnson, Oasis, Bloc Party, CSS, Decemberists, The Faint, Of Montreal and others. Some of these artists are friends of ours, or we are friends with their managers, marketing team, lawyer, etc. Whatever the case, there are 16 artists on the first disc who have given us royalty-free tracks so that we can use their music to beat the hell out of cancer.

The second disc includes every artist on Dangerbird Records. This one is all family. These bands have seen Pablo grow up. They've heard him speaking his first group of words. They've looked on as he took his first steps. Pablo's been in the studio with Peter Walker / Eulogies many many times. He was in the studio a few times when Silversun Pickups were recording their album 'Carnavas.' (One funny story is that he hit a MUTE button the mixing desk when no one was looking, and after P and I left, they spent hours trying to fix the 'no sound' problem.) For a few weeks back in 2006, La Rocca had contemplated shooting a black and white portrait of curly-headed Pablo for the cover of their debut album (the idea was nixed cos we all thought it might look too close to the 'Boy' album cover by their Dublin forbears U2). Hrishikesh from The One AM Radio has babysat Pablo, and spent dozens of hours with our family. And with his rifle range ear muffs, he's seen most of the artists on the label play live (I usually take him and Grady to sound checks). I am humbled by the powerful the love and support we've received from our home team. I know that this would be the case no matter who in our large Dangerbird family needed help. It's just the way we roll. We've got each other's backs.

The Pablove Foundation will receive every penny after minor manufacturing costs are paid for. More important than the financial aspect, this comp—and all the media attention it brings—will help to raise awareness and consciousness around Childrens Hospital Los Angeles. A big, big deal for us.

We are not sure that we can sell the disc on our site—still working on that. Will keep you up to date.

New PABLOg Look, New Phase Of Treatment

It was time for a new look—something to signify that the tumors are out of Pablo's body, and we are now on to the next step: eradicating any microscopic cancer cells that might still be lurking around. Jo Ann chose the new front page picture, saying it's the best picture of Pablo in months. Within minutes of getting our email, Hrishi redesigned the PABLOg logo, and changed the background color.

As I write this, Pablo is sitting next to me—AT HOME! When we walked in the door, Pablo got down on his knees and hugged both Chili and Beans. Then he descended the stairs—something he normally does dozens of times a day—and ran to his room to get DRESSED! Can you imagine you EXCITING that is for him, after 28 days in hospital gowns?

Right now, Pablo is watching a DVD on his laptop. Mommy and Nana are making lunch for us. Arianna has a crew of workers toiling in the play room. From the chilled out position where P and I are sitting, we can see our beautiful, tree-filled back yard, and the overcast LA sky. Beans is on the back deck, staring at us through the window. This is great. I am SO GRATEFUL to be home with our little boy. This is where he belongs:

MINUTES AWAY FROM GOING HOME!

28 Days. Can you believe it? An entire MONTH up in this joint! And now, we are minutes away from busting outta here! The nurses just de-accessed his port. The bags are packed. Pablo's street clothes are at the ready. We're ready for the freedom run.

This morning, we went down to the radiation oncology lab. They knocked Pablo out, and dropped him in the body mold and ran a radiation-free test on him. The goal was to verify the laser alignment. We are happy to report that everything went perfectly well.

Jo Ann and I spent about 30 minutes with Dr Wong, the radiation oncologist. He reviewed every detail of every aspect of the treatment. I have some photos of the mold, the radiation machine, and some CT scans that Dr Wong gave me.

Will post all that later.

We have somewhere to go right now!

A Great Day Makes A Huge Difference

It's been a great day. Period. Pablo was 100% all day. We played another inning of in-room flashlight rules baseball. The kid was beating me 16 - 0 when I had to leave for my speaking gig at Paramount Studios. When I got back from that, he was still smiling.

Jo Ann and Patricia went home when I got to CHLA this morning. They spent the day preparing the house for Pablo's arrival on Friday. They picked up Grady at school, hit In N Out Burger on the way home, and then headed back to CHLA for the night shift. They are pulling back-to-back overnights. And I ain't gonna complain! There was a different vibe in the room all day today. And this evening.

On the way back from Paramount, I realized I haven't been west of the hospital in 27 days. Insane! The city looked different, but still the same. Terry Green from the CHLA Development office drove me. Great man who is part of a great team of people; they raise $100 million a year for CHLA. They have to—or the hospital couldn't survive. Imagine if George Bush's war machine were a research and treatment operation for the five deadliest diseases in the world. Then Terry and his colleagues could all retire LOL!

Terry and I had a great carb loading dinner with the Paramount Triathlon team, who, like me, are doing the Malibu Triathlon on Sunday. It's a a two-day event, and a benefit for cancer research and treatment at CHLA. A bulls eye for me: cycling and supporting one of my kids. What could be better? I am on a relay team with Adam Harrison from Dangerbird (runner) and his friend Brendan Carroll (swimmer). One thing was odd though—they didn't have dinner plates—we piled our 'carb load' on dessert plates. Oh well. Carb loading is a myth anyway. It was great food, and I got to tell the story of Pablo/our family/cancer/CHLA. I made a point to look into people's eyes when I spoke. There were about 200 eyeballs to look at, so it wasn't hard.

When I finished speaking, they gave me a giant Paramount gift bag. It was filled with DVDs, two 'Love Guru' tees and a Team Paramount tee—all masssssive size L. I gave them to Patricia to give to Harry. I'm not sure if he'll rock the Mike Meyers/Guru tees, but who knows?

This afternoon, we met a new oncologist dude who stopped by to say hello. His 17-year-old son had Wilms' Tumor when he was 3.5 years. They are from Calcutta, India, and still lived there at that time; they traveled to Chicago for treatment. That was back in the 9-4. In the world of cancer treatment, the 13 year difference in treatment and technology is colossal. Although his son had Wilms' in only one kidney, he had radiation and chemo, and is happy and healthy now. I talked to the guy as long as I could. At some point, he clearly didn't want to talk anymore. So I kept talking. And then I said Goodbye and let him see his next patient. The man is not our doctor, and I believe he came by just to relate to us. Another CHLA angel. I was walking on air after hearing about his son.

Boy, was that baseball game fun. We have to keep that rolling when we get home.

Pablo 7, Papa 0

The baseball

The batter

Don't tell anyone, but Pablo and I have pushed the beds to the sides of the room. The guest bed is blocking the door. Pablo's holding the nurse's white flashlight like a baseball bat. He is sitting on his legs on top of his bed. I am pitching him the rubber ball that he and Nana just bought in the gift shoppe. The dude only swings at balls he can whack out of the park. He even got a home run (sinking the ball into the wash basin) with bases loaded. Prior to cobbling together our intra-room baseball league, we we playing catch with the rubber ball. That lead to Pablo laying on every crazy spin he could come up with. To keep the needle in the red, I showed him how to throw the ball super hard at the floor so it'd hit the ceiling. He laughed as if Tim Conway were putting on a personal show for him at the foot of his bed. So, you know, I kept doing it...and doing it...and doing it.

OK, enough typing.

Pablo's done eating his lunch (proof below)—time for second inning.

The Countdown...

The countdown to going home is officially ON. Yesterday we received a high security med delivery of Neupogen, a drug to be administered at home to help Pablo keep his blood counts up. We just recently heard about this part of the process. Insurance covers the drug (thank goodness, it's $7,000 a shot) and a one time home care nurse to come over and teach us how to administer it. Most parents give the shots to their kids, but I just can't imagine that happening at our home. Jeff faints at the sight of a needle... seriously, I always thought he was joking, but I can tell you from first hand experience... the dude goes down and needs smelling salts! And, although I don't faint, the idea of giving Pablo an injection is so overwheming emotionally, I start to feel anxious just thinking about it. So, I called Penelope, one of our lovely nurses from the out-patient clinic to see if she would be interested and willing to help us out. We met Penelope on our first tour of the clinic back when Pablo was diagnosed. In the not-so-strange way that things happen, our friends Justin and Corinne had told us about their friend Penelope who is a parent at their daughter's preschool. Then upon meeting Penelope we discovered a long long history of mutual friends and that we are actually neighbors. I could go on and on, but the point is - we are sorted on home injections thanks to her! She will be coming over every 3 weeks to give Pablo his shot.

Dr. M stopped by to see us this morning and gave Pablo the go-ahead to start on the new 24 week/6month treatment plan. It's a lot of information, a lot of drugs, a lot of nervous energy jumping around inside of me...

Today Pablo gets Vincristine, Doxorubicin and Cyclophosphamide (Cytoxan). We have had the V and D with our last round of chemo (remember RED DEVIL?), so we know how Pablo handles those, but the Cytoxan is a great big unknown with all kinds of crazy new potential side effects, including the most common, bladder bleeding. UGH... in order to prevent that it is given in combination with another drug, Mesna, and it is administered over the course of an hour. Then we get 2 more doses of Mesna every 4 hours. This is why Pablo is receiving chemo in-patient. He needs to be monitered throughout the night.

As if that's not enough, we actually start all of this doping with a Benadryl/Reglan combo shot to be followed up every 6 hours as needed for nausea and vomitting, and a syringe full of Zofran, to be continued every 6 hours for 8 more doses... and then we go HOME...

That's right, we are getting kicked to the curb on Friday. Some of the hospital staff thought we could go tomorrow, but Dr. M has the final word and wants us to stay until Friday... which works for me because I feel safer here!

As for today, our 4W nurse took Pablo's fluids off this morning because he's eating and drinking, so we went on a "freedom run" (more like a nice stroll) around the hospital. Pablo's new favorite spot is the gift shop. Seriously, he loves it there. Right now, he's out with Polly and a bowl of berries. They are headed to the front courtyard for a book and a snack.

We are all good today and will keep you posted on how Pablo tolerates his chemo this afternoon.

love,
Jo Ann

We Are Winning The War On Cancer

Pablo's so excited to have food in his mouth he wants you ALL to see it.

While we were eating dinner in the conference room-cum-mess hall, Dr Stein came to see us. He had a message regarding the pathology of the right kidney—the last bit of the organ that he removed in the operation last week. The message was great, great news: the tumor did in fact have tumor cells in it.

As I said in a post last week, we would prefer that Pablo NO cancer in his body, ever. But since we are engaged in a war with an invisible opponent (sorry, had to go there), we feel vindicated that there was cancer left in that kidney and that we were determined to get the kidney out of his body. Jo Ann was especially determined. I followed her lead (something I am learning to do more and more). Dr Mascarenhas also strongly urged us to remove the small bit of right kidney after he returned from a conference where he reviewed Pablo's case with two of the main Wilms' Tumor authorities in the U.S.

The bottom line is, a large part of cancer treatment is a guessing game. So, like sinking an opponent's vessel in Battle Ship, knowing that our hunch was correct, and that we averted danger, is, like f**kin' great!!!!! There's another layer of great news. The two lymph nodes that were removed in separate surgeries are totally clear of cancer. This is a fantastic indicator that the cancer had not yet spread anywhere else in Pablo's body. Excuse my super un-technical description of all this. If I get any of this wrong, I will correct the text immediately. As I understand it, the lymph nodes are typically the first organs to carry tumor after the primary originating organ. No matter what, this is all GREAT news!

Plus, Pablo is up and at 'em today. He's been smiling, laughing, cracking jokes with Polly, playing with Grady, telling stories. He hasn't been as shy and withdrawn. He's walked all over the shop with Jo Ann, then Polly.

And, to celebrate this amazing day, he and I are about to dig into some Pinkberry.

We have the official word from Dr M: chemo will resume tomorrow. More on that later.

Goodnight.

Pablo Pancake Palin-ed

Many people are waiting to win the lotteria. Or for the second coming of Jesus Cristo. Mick Jagger's waitin on a friend. And John Mayer, the great guitarist and BlackBerry spokesman, is waiting for the world to change.

Here in CHLA room 429, bed B, we've been waiting for something a helluva lot simpler: for the word 'food' to reunite with the name 'Pablo. ' He hasn't eaten in six days. Six long days and many many tearful 'I'm huuuuuuunnnnnnnngry' episodes later, and our wish has been granted, and I am running (as I type this) down to the cafeteria, to get the following order for Pablo:

1. Pancakes
2. Jam (no syrup!)
3. Yogurt
4. Orange juice

What makes this diet change super sweet for us is that we didn't even see it coming. Seriously—we thought P's digestive tract would have to be a lot more active before he'd see real food. But, our doctors conspired this morning, and Palin-ed us. (Palin: the sudden introduction of a heretofore unknown person, object or fact into a seemingly stagnant scenario, as in "Sarah Palin, the Great American Patriot and Politico, deserves your vote for VP of the United States of America.") Pablo couldn't have been happier. The dude was pretending not to listen to our nurse as she told us the news. But a giant smile gave him away. His eyes lit up. Man, I will NEVER forget that smile. The innocent precious happiness in his eyes. Moments like that recharge my faith batteries. Seeing Pablo's smile and that brightness in his eyes and face is his spiritual self winking at us, letting us know he's OK and he is not going to lose this battle.

I know all that because our lovely nurse came in and said Pablo could eat his favorite food. I've gotten good at spotting high forms of energy. And I don't second guess them. Second guessing is for people who have the time to guess again. Me and my family, we don't got time for that. We have learned to just believe.

We spent the morning getting to know our new friends in the radiation oncology lab. We'll get to know that team very well. Pablo starts a 12 day radiation course on Monday. For reference, we had done 12 weeks of chemo leading up this in-patient run, and we know almost every nurse, doctor, receptionist up in the Oncology Clinic.

Today, Pablo was sedated in the test lab (a mini version of the radiation room he'll be in for his treatments). The team made a mold of his body, which he will be placed in for his rad treats. He will be knocked out for each of the treatments. This is good, even imperative, cos P has developed anxiety during this long stay in the hospital. He'd never be able to have his body bound in the giant mold, with the massive radiation machine whirling around him (it looks like the robot man on the cover of Queen 'News of The World'). While he was out, they placed clear medical tape on his chest and abdomen, and drew reference lines on his body. In addition to his scars, tape sutures, blisters, cables and sensors, Pablo's front elevation now looks like a bombardier scope. It's kind of cool. Kind of freaky. If we'd have started at this part in the story, we'd be mortified. But, having ramped up to the bombardier body, it's somehow not a big deal. By the way, on adults, the lines are actually tattooed on the body. We have many friends who'd need white tattoo lines cos their bodies are already covered in colorful ink.

Lastly, Pablo will get the first injection of the new course of chemo tomorrow. This course is 24 weeks of five drugs, in higher doses and frequency than the prior 12 weeks. I am going to ask Jo Ann to write a post detailing all the drugs and details. She is on point with that stuff way more than me.

At home, the playroom is progressing. Our friend and designer Arianna Sabra has kept the job site moving (while planning her wedding AND nursing her little baby girlee). She has seen Pablo grow up since redesigning the downstairs of our house over three years ago. So creating a fun space for Pablo to be in while he kicks the crap out of cancer is a deeply personal job for her. Friday is the target finish date—good a** news, cos we are hoping to drive our little baby boyee home that same day! (Fingers crossed.)

More later....