Saturday, February 28, 2009

Platelets Are Pumping

Pablo is being fortified with a huge bag o' platelets courtesy of Mr.
Sebastian Jones.

We're still waiting for a room. Cue Fugazi 'Waiting Room' now.

CHLA Chalk Talk

Typing this with my left thumb. Pablo's snuggling with me and laying on the other arm. We're on the ER gurney watchin old tyme 'Popeye' episodes on the flat screen TV that comes free with the room. He's hooked up to a fat bag of fluid drip; our fave industrial strength antibiotic is pumping into his port as well.

Our bed up on 4 West will be ready round 5. Meantime, we're having a good time catching up on the week. Because Jo Ann was holed up sick in our bedroom all week - plus the fact that I get up hella early to ride and have worked late every night this week - we haven't had much time to, like, tawlk. It feels good to exchange stories with Jo Ann.

On the way here, I reminded Pablo that next Saturday is gonna be a big day at CHLA. I pointed out to him that exactly one week to the hour from the time we were cruisin down Sunset we'd be rollin through 4 West with Lance Armstrong! He is coming to LA to visit the cancer kids on 4 West and 4 East at CHLA. Can you believe it? Pablo and I are freeeeekin the funk over this.

After he does his thing with the kids, Lance and I - and 699 other people - are gonna ride down Sunset Boulevard to a theater in Hollywood. He's gonna make a big announcement about Livestrong. Then one of his friends is gonna interview him onstage, and another is gonna play a few songs. The musician friend was a dad at Walther School when Pablo was there.

When I rode this morning in the San Gabriel mountains, I covered part of the same path of last Saturday's Stage 7 of the Tour of California. There were still huge yellow chalk messages scrawled across the road and on the mountain sides. One said 'Ride Strong. Livestrong.' Another said 'Welcome Back Lance. Thank You.'

I don't know what it's like for other people -people who have not lost a brother to cancer and don't have a child in treatment. To me, those words are touchstones - responses+proclamations from real people responding to Lance's bold call to the governments of the world focus on the fight to find a cure for cancer. Cancer: the top cause of death the world over starting in 2010. Cancer: omnipresent in our world. Cancer: so easy to brush aside, to not see, like scary wallpaper.

Yellow chalk on asphalt 20 miles above the City of Angels. Wouldn't it be great if the smart guys from Wall Street and the military could chalk it up and all their money + brain power could be harnessed to find a cure for this damn disease?

Most of all, the chalky mountain road salutations and next Saturday's CHLA ride bring something our family needs right now: hope. To us, Lance Armstrong is a beacon of hope and action. We need heroes and guides in our lives. And L.A.'s our dawg.

On Our Way To CHLA

Pablo's got a fever. And lots of broken blood vessels and bruises all over his bod. More than usual. We'll check in with deets later on.

Thursday, February 26, 2009

Transfusion Thursday

Pablo needs a blood transfusion today, so he and Jo Ann left for CHLA bright and early. The best scenario for the five to seven hour day hospital hang is to get a good bed. And to get a portable TV/DVD unit. The alternative is to have Pablo in a sleeper chair all day, and parental unit(s) and Polly sitting in nasty boxy torture chairs. I could tell Pablo needed blood today. He was crabby and very sensitive to light and sound and not laughing at the stuff he normally laughs at. There's no scientific explanation to all the things on that list. I just know when my boy needs to hit the blood bag.

When he's like this, it's a reminder that, yeah, he is going through something extreme and grueling and unnatural. The way he carries himself—smiling, busting out of the seams with energy, observing and relating—it's easy to gloss over the seriousness of what he's enduring. It's not that we pretend or avoid the weight. It's a give and take situation: Pablo is having a good hour or a good day, and we all ride that wave with him, and allow ourselves to have a good hour or a good day. I've said this before: he's like the lead singer in a rock band: everyone's mood follows his. Unlike the rock star analogy, Pablo (or any cancer kid) deserves such attention + mood duplication.

Jo Ann got dressed this morning for the first time since Saturday. She looks great, and I have to believe, is happier than hell to get OUT of this house. She's feeling better, but not fully back to her normal energy level. I wouldn't try to convince you that going to a children's hospital with your child for any reason could be a relaxing experience. However, the blood transfusion is routine to us now. And it is the easiest thing we do at CHLA. Not too many moving parts. They access P's port, do a blood draw, order the blood, activate the blood drip, check on him every 20-30 minutes during transfusion, and in three to five hours, it's complete. The parental unit(s) can hang and read for much of that time. Still, I feel for my better half. I'm sure she'd much rather spend her first day out of the house at some place more fun.

At least I get to go to the office and talk on the phone.

Wednesday, February 25, 2009

A Little Help From Our Friends....

We could title each post with those same words. With Jo Ann on bed rest through the end of this week on the orders of her doctor, we've needed a whole different kind of help to bridge the time between when Polly arrives and when I leave the house to go to work, to ride, or, in the case of yesterday, to report for jury duty downtown.

Yesterday our friend Elizabeth Ramsey came over to hang with Pablo during the gap. What's ironic is that Jo Ann used to babysit her when they were growing up together in on the same street in New Orleans.

Early Tuesday evening, Elizabeth emailed a note to Jo Ann describing her experience with Pablo. Her words were so moving to both of us, we decided to post them here:

Glad I could help. I had fun.

Everything was cool. P explained Nightmare Before Xmas to me, and then we played some version of baseball with his stuffed animals (I would throw the Dr. Seuss red animal at him and he would hit it with his hand or the little bat—you probably don’t want to know this) and then we decided to make bases and spectators with the other stuffed animals, so we literally took out every stuffed animal he has in that bin in the living room, and of course he told me something about each animal—like “this one I had since I was a baby”—we had the living room covered with animals. Pablo loves his stuffed animals. That’s when Jeff came home and soon after Polly.

By this afternoon, I was thinking that this little dude, who has been through umpteen million chemo treatments, and one just this past weekend, kicked my butt—I’m exhausted. I’m hoping that is a good sign in this fight against cancer. He’s a fighter and strong little guy. :-)

Glad you are feeling a little better.



Monday, February 23, 2009

Shots+Lottery+Jury Duty

Pablo and I were snapped by a professional cycling photog at the stage 7 finish line of the Tour of California at the Rose Bowl on Saturday. He took a whole series of us. We had no idea until he waved at us to get our attention. He needed our names. The guy gave me his card—he's from Broussard, Louisiana. Figures he was from Jo Ann's homeland—more fate. Another thread of too-strange-to-be-true-ness: the woman who pulled us up on the wheel chair platform worked for Amgen—she runs the manufacturing for the Neulasta and Neupogen, the two Amgen shots Pablo gets all the time. Just amazing. I gave her a giant hug and told her she was a saint and a celebrity in our household. Amgen is the marquee sponsor of the ToC, so I could have walked up to everyone in their VIP tent giving hugs to everyone. This sweet woman and her two children let us share the back half of the platform. The front half was for her husband, a CHP officer and cyclist, was hit at the side of a car while on duty last year.

In the middle of the race, a very 'VIP' celebrity-type guy (I mean, he was pretty fit, and well-dressed and groomed) hastily tapped our host on her leg. She ignored him at first, eventually kneeling down on the platform, which was about three feet high, to address the tapping buff man. I heard him shout at her, 'Hey, why do you get to be up there?' She stood up, shocked, and looked at me. Pablo was watching the race and out of earshot. I took my turn to kneel down and answer the celebutant's f***ing insane question. 'Can't you tell?,' I said. 'We won the lottery. Her husband is paralyzed and my son has cancer.'

Punching the guy every-which-way-but-loose style would have been a better option from the guy's perspective. As my response traveled from his earlobes to his frontal lobe, and his eyes saw the wheel chair and Pablo's bald head, his face went blank and his jaw dropped. And somehow, I felt like it was the clearest communication I'd ever had in my life. Or at least one of the quickest.

Anyway, I'm going to frame one of these pics—or small versions of all five—for my office, and for home. Little Pablo with his cowbell (a traditional noisemaker at cycling races), and elbows on his Papa's head, and his 'Mike And The Bike' cap. What a cool look he has!

Here's an update on our Monday: Jo Ann is still crazy sick. She feels worse than she did on day one, Saturday. A trip to Dr Nasseri's office in Beverly Hills got her a shot of a powerful antibiotic in her butt. This med is extreme stuff. The doc told her to stay in bed for the balance of the week, and not to lift anything heavier than her arm. Dang. But it sounds like the exact kinda thing she needs to kick what she's got.

Meantime, Pablo and I are on night three in Grady's bed. G is with his dad for what looks to be another long stay. We miss Grady like hell when he's away for so long. But it's best that he keeps his health intact. Plus, with Jo Ann out of commission, there's no way we could keep up with getting him to school and all that. As it is, Polly is working overtime so I can work and Jo Ann can rest. She brought Pablo to the office today for lunch, and then again at 6. He watched 'Willy Wonka' on the receptionist computer while I finished my final meeting of the day. Then we hit $1 taco night at Malo. And we say Polly and her massive crew of friends across the restaurant.

Tomorrow brings yet another twist to our lives: I have to report for jury duty at 7:45 a.m. I'm all for showing up to do my civic duty. But, I gotta say, I'm not looking forward to gettin governmental tomorrow. First of all, it means I can't ride in the morning. That p**ses me off. Second, Jo Ann can't go near Pablo, and Polly doesn't get here til later in the morning. Not sure how that is going to play out. By the way, I'm out of get-out-of-jury-free cards with the J Comm. In early August Dr M wrote a letter asking that I be excused until after P's treatment. In early August we thought Pablo's diagnosis was going to be favorable across the board (remember waaaay back then?) and we'd be done after he healed from surgery. Had that been the case, I'd be jumping for joy to sit in some cell-free freek zone all day tomorrow. Definitely not the case in the cold hard light of today. I am at the absolute most busy, make-or-break time of my career.

Alas, I will go to the nut, er, courthouse tomorrow, park at the Disney Concert Hall, and do my best to find an appropriate way to get excused. I'm going in armed with Dr M's original letter, some current medical bills (I actually want to start laughing right now—we have no less than 300 white Blue Cross envelopes sitting in Jo Ann's office) and some itemized invoices from the medical supply delivery service that drops Pablo's shots every week. Whatever I need to prove that P is still in treatment, I'm doing it.

If that doesn't work, this potential crinimal justice court juror is gonna have to tell them the truth: I don't trust cops. Ask my dad why.

Sunday, February 22, 2009


We're rockin today, taking advantage of a warm and cloudy (ie, not scorching hot) Sunday afternoon before Pablo's white blood count plummets. This pic is at 21 Choices yogurt on Colorado Boulevard in Pasadena. Next stop: my office and a quick stroll down Sunset. I need a new notebook for my desk.

Jo Ann is on her medication, but not feelin any better today. In fact, her throat feels worse. We made her some hot tea, and let her continue resting. When we got home from brunch at Mustard Seed, Jo Ann came upstairs adorned in face mask and green surgical gloves to give Pablo his shot. No way around that. Papa passes out at the sight of a needle. No waaaay I could ever be on the giving end of one of those babies.

Jo Ann is going to go to the doctor Monday. Just what she needs: more doctor appointments in her life. Lots of our friends are sick with flu or other weird winter ailments right now. Our hearts and love go out to all of you and your families, coworkers, employees, et al who are pullin while you're on the mend.

Remember when gettin sick was cool - ie, a trip to the nurse's office and a pass to leave school? Why can't senior year last forever?

Saturday, February 21, 2009



No caption needed

On The Finish Line@Tour of California

We are literally ON the finish line! A very nice family has invited us to stand on the wheel chair platform (the dad is in a wheel chair). Turns out the mom is in charge of the Neupogen group at Amgen. That's the drug that Pablo got shot into his leg THREE hours ago!

Life just KEEPS blowing my mind!

Rx Bandits!

We are a bunch of Rx bandits over here. After calls to half a dozen docs—and many calls, emails and IMs from many of you with recommendations—our amazing+compassionate ENT, Dr Sean Nasseri, called and talked to Jo Ann. An Rx is going to be ready at our friendly neighborhood CVS Pharmacy very soon. I'm gonna pick it up, bring it home, then race (in my car) to the foot of the mountains. If I time this right, I'll be able to meet up with my friends who riding there as I type this.

Oh, and one other important detail about today's early morning events turning out just fine: POLLY—can I get a shout out for POLLY?—took my phone call, which woke her up, and is coming over to hang with Pablo for a few hours SO I can ride, and SO Jo Ann can stay quarantined in our room. I think I got her when I said this wasn't just any normal Saturday morning ride. This is a ride where I'm going to see LANCE ARMSTRONG, LEVI LEIPHEIMER and all the most amazing riders in the world destroy the mountain that me and my friends climbed a couple hours before!!!!!

After all that, I'm coming home to grab Pablo (and Polly if she wants to come) to take him to the stage finish at the Rose Bowl.

This is stuff worth getting stressed about!

Have a great Sat.


We need help finding a doctor who makes house calls. Jo Ann is incredibly sick (sounds like that super nasty flu that has been going round). She is too sick to go to the doc or hospital alone, and Pablo can't go near those places.

If you have a doctor or a medical service reference please post a comment with that info, or email me:


Cranking, Climbing, Creating Experiences

Good morning, and happy Saturday. So great to see Jo Ann's four days of posts! I've gotten very into writing every day. But the kind of focus it takes is the exact kind of focus that is eroded by a long day (or week, or series of weeks) of mind-numbingly-insane work. It's funny, reading four straight days of Jo Ann's posts has allowed me to be the observer of our experience. Totally different from being the narrator. A welcome relief from a job—writing—that I love. Jo Ann's blogging also makes me feel supported in a time when I have literally been coming home every night and working until midnight on the computer.

We are in an amazing period at Dangerbird—just moved into our new buildings on Sunset, launching the Eulogies and Silversun Pickups records, hammering projects for our producer clients, and cranking away at the plans and budgets for Eagles of Death Metal tours all over the world—and Jo Ann has upped her support of me as I have felt and voiced my feelings of guilt for not being with her, Pablo and Grady as much as I want to be. The guilt is quadrupled when Pablo is in the hospital for chemo.

Ultimately, we both know that I have to work—for all the obvious noble reasons of providing for my family and all that, plus, there are a lot of people counting on me in my professional life. What Peter and I do is a lot like pushing a giant effin' boulder up a mountain. If we lose our rhythm with one another, or the artists and employees around us, the boulder will simply roll right back over us. Not my idea of fun. Jo Ann's emotional and practical support is (and always has been) a cure-all elixir for me when times get tough like this.

This morning, I'm up early to hit the road on two wheels with my friends Piero, Jeff, Diarmuid, Jeff. We're climbing the mountain that Lance Armstrong and the rest of the riders in the Tour of California will ascend this afternoon. Very exciting to have all the biggest names in cycling from around the world climbing the same mountain passes that we do all the time. I'm going to go up with them, and descend into La Canada right away. The rest of my crew are gonna stay at the summit to see the race fly by. Not me.

I'm gonna cruise home, shower, and take Jo Ann (if she's feeling better) and Pablo down to the finish line at the Rose Bowl in Pasadena. Matt Solodky, our GM at Dangerbird, got us VIP passes for the bleachers at the finish line. This is ridiculously amazing—and pretty much the only way for Pablo to do it this year. He has to be near a potty, and the bleachers make it possible for P to actually see the riders as they fly by at speeds of 35+ m.p.h. I want Pablo to have this experience. And I want to have it with him. Being at Baby Luke's memorial last week framed beautifully the importance of creating experiences with Pablo—actually for any parents with any children.

I hope Jo Ann's sore throat subsides overnight. We went to the ToC last year with the kids, and it was super fun. The anticipation of the peloton, the screaming announcer and then the unbelievable rush of 130 riders flying by in one massive ball—it's a sight and sound explosion. This year is a one-of-a-kind moment with Lance being back on the bike.

Speaking of Lance and me and bikes, I received confirmation today that I will be riding with Lance at an event in LA in early March. He's going to be walking the fourth floor cancer wards at our VERY OWN CHLA! And then will ride down Sunset Boulevard with 699 other riders. Not sure if it's been announced yet, so I will leave it at that. I can barely contain myself. But you already knew that!

Friday, February 20, 2009


Y'all are going to get tired of my posts, but Jeff has been non stop crazy busy with work all week and it will not be slowing down in the foreseeable future... that's the good news! The bad news is that he is so tired, he has not had the time or the energy to post... so here goes my fourth in a row.

WE ARE HOME! I forgot to mention that we moved over to 430A early yesterday morning. You are right, Laura, it is such a nice little hideaway. Both of our roommates, who were awesome roomies, were getting stem cell rescue and they needed to move us so they could accommodate the machinery needed for such a procedure. The nurse handling them was on our Blood Drive last month, so it was nice that he got to finally see Pablo.

Our night was fine. Pablo wears diapers at the hospital for a couple of reasons, but sometimes they leak and then we are in chemo pee mode... Everything gets taken off, warm soapy wipes are given to us for a scrub down and all the linens are changed - not an easy thing to pull off with a very sleepy and somewhat cranky little boy. We had such incident in the early morning hours today and it was actually not so bad. Kim, our nurse, unhooked P from his IV fluids and after I cleaned him off, I wrapped him in one of the big comfy bath sheets that they have and held him in my lap on the chair. The PCSAs doubled up and got the bed back in order in no time, but P and I were already fast asleep on the chair! We transferred to the bed and Pablo wanted to keep the same position, literally on me, cuddling like a baby... my baby. So sweet, I loved it. When we finally did wake up he shouted, "Mommy, look!" I jumped and as he was unwrapping himself from the bath sheet, he said, "Look how you put me in bed... NAKED!" We laughed for a while. I explained that it was called sleeping in the buff and someday he might actually like that!

I woke up with a terrible sore throat and am worried about having breathed on P all night. I'm completely under this evening and slept most of the day thanks to Polly. I am going to try to see a doctor tomorrow, and keep P as far away from me as possible. Not an easy task. I wore one of his masks around the house this evening and washed my hands about 50 times.

Our plan for now is to go back to clinic next week for a blood draw and Vincristine. In the past, Pablo is usually in need of red blood around that time and his counts hit rock bottom about 10 days from now. We start our daily shots again tomorrow. The pharmacy dropped them off this evening and I told Pablo what it was, he said, "That's OK, I haven't had those for a couple of weeks now... it's OK." He's right. It is OK.

Thank you everyone for your lovely messages, comments, emails, etc... it means so much to us.

Jo Ann

Thursday, February 19, 2009

Red Devil Be Gone

Well, it's done. I just watched the very very very last dose of Doxorubicin make it's way through the clear tubes and into Pablo's port-o-cath. I climbed in bed with him and he asked if he could lay on me - OF COURSE! He was awake for the first five minutes and then fell asleep, which was great because I was praying and crying and praying and crying. Wow, 15 minutes can feel like such a long time.

I was given (or Pablo was given) a first class relic of Blessed Francis Xavier Seelos right before his surgeries. I hadn't heard of him, but did the research and learned all about him within a few days. He was working in New Orleans as a missionary when he died and is enshrined there. This relic has been with us for every hospital visit and was actually tied to Pablo's shirt last night and is tonight. A third class relic of Fr. Seelos was given to me by another special friend right before Christmas. I've kept it in our suitcase, so it comes the the hospital with us, too. Last night, Danica, who is Catholic, was our nurse. I gave her the third class relic to hold in her pocket all night while she administered all of P's meds... tonight, Kim, also Catholic, is our nurse and she is holding it close through the night as well.

Thank you, everyone, for all of your love, thoughts and prayers over the course of these last two evenings. This is officially the beginning of the end of Pablo's treatment.

Good Night.

Jo Ann

Wednesday, February 18, 2009

P Made The Grade

Well, Pablo made counts, but he's playing tricks on all of us. His platelets went up to 82,000 but his ANC dropped! It's really not a huge deal, they dropped just below the 750 mark and the docs are fine to start chemo tonight. Getting a bed on the constantly swamped 4W is another story. We have to go in at 6pm this evening so Pablo can be checked out by the attending, Dr. May, but P's bed won't be ready before 7pm. So, we will be waiting... which is fine. Here's the rub: we are getting bed 430B - now, most of y'all have no idea what that means, but let me tell you... it's the LEAST desirable bed on the floor! It's in a triple room and it's right in the middle. We have been at this almost a year now and this is our first time in 430B. The charge nurse called me just a minute ago to apologize and promises to try everything to get us out of there tomorrow, but, honestly, I'm OK with it. I sort of feel like we need to be there at least once to have had the complete 4W experience.

We had another fine day at clinic getting Pablo's labs drawn. There was an IHOP event in the garden and when we were leaving they told Pablo to go get some pancakes. As we were on our way, Raul, our friend from the blood bank called Pablo over to meet a celebrity. Brittany something or other from The Suite Life and other Disney shows was signing pictures. She saw Pablo in today's get up (white tank top, suit jacket, pirate pants, top hat with pirate belt tied around it and snow boots) and decided that it was LOVE. She hugged on him and kept asking him about his outfit. He was smitten, too, and loves his autographed head shot.

We went outside to check out the pancake activity and there were all kinds of characters out there... Batman and Robin and a cast of pirates. There was a chocolate chip pancake named Charlie and Pablo asked if he could take his picture with him. Cute.

We headed over the Fred 62 for lunch. We love that place. Pablo always get to go in to Jimmy's office after we eat and pick a candy out of his candy dish, so he was especially excited about our lunch date. Zeus, one of the office managers, always has a toy or some stickers for P. Today Pablo got two packs of Smarties and three packages of stickers - a bountiful reward for eating a good meal.

So, as we head into this final round of Doxorubicin, I humbly ask for all of you to hold Pablo in your own special spiritual place and ask for this powerful stuff to do the trick - rid his little body of all cancer cells without damage, and prevent them from ever returning!

Jo Ann

Tuesday, February 17, 2009

Making the Counts!

Another day at home... not so bad, really, except we're ready to get on with it. We "didn't make counts" today. Pablo's platelets are on the rise, but not enough to get chemo. We will try again tomorrow, but in order to avoid disappointment, I am thinking Thursday. So maybe I'll be pleasantly surprised if somehow all of the blueberries, bananas and omega 3 capsules that I've been feeding P actually gets him up to the target number by tomorrow.

I just want to share what our clinic experiences are like for P and me. We live so close to the hospital, that's it's never been a drag to go there and we sincerely look forward to seeing all of the nurses that we've come to love. Pablo puts thought into what he will wear: a suit with bowtie, his pirate outfit with dagger and top hat, his new astronaut costume... All of the nurses know him and come over to see his wardrobe choice for the day and to say hi. He is typically a shy kid - he has really come out of his shell in this environment and walks the corridor and nurses stations with comfort, confidence and ease. Today he went to triage all on his own and then came running down the hall shouting "18.8... 18.8!" letting us know that he is gaining weight. We usually guess his weight every time before he steps on the scale and earlier this week we were cheering his 18.5 - so you can imagine the excitement today!

Our dear friend, Penelope, was in clinic today, so we got to check in with her. We are usually scheduled for our labs to be done on her days off, so we have missed her over the past month. Another mom, that I met at Luke's memorial was in today with her son, Thomas, receiving chemo. We were able to meet each other's child and exchange numbers and blog addresses. It's so incredibly important to connect with other parents living this similar life during this time. I remember when I had made the transition in my career from commercial production to music video production and I went on this quest to meet all the other music video producers and commissioners - same thing... this is my career at the moment and I need to create my support team. I feel myself being drawn to other mother's and wanting to introduce myself and tell them about our experience in hopes of them sharing theirs. So far so good. Actually, Laura, Luke's mom, had been my conduit to three other mom's from the 4th floor. I am so grateful.

So, one last clinic Pablo-ism. On the 5th floor of the clinic, there are three divisions: Doctor's clinic for regular appointments, Urgent Care for kids with fever or illness, and Day Hospital for kids receiving out patient chemo and transfusions. They have expanded Day Hospital into part of Urgent Care due to the great need for beds and we were sent there yesterday for our labs. Pablo asked, "Are we leaving Day Hospital to go to Morning Hospital?" So funny. We were there again today and he now refers to it as Morning Hospital. We asked him what was Night Hospital and he said, "4West."

Sending so much love out to all of you! 
This boy is happy, strong and hungry!!! 

Jo Ann


Try, Try Again

Pablo and Jo Ann drove Grady to school in La Canada this morning. P was overly excited to drive his big bro. Last night, he came up to me and gave me the entire run down: 'I have to drive Grady to school in the morning, and then me and Mommy are going to Whole Foods. Then we have to go to the hospital so I can get a blood draw.' I get excited about taking G to school, too. It's such a beautiful drive, and his school is so perfectly situated in the hills at the foot of the San Gabriel Mountains. Love going up there. That area is one of the things I fell in love with when I moved to LA.

We are hoping that Pablo's platelet count is at 75,000 today. We are hoping he can check into CHLA today, and start chemo tonight. Think all your warm thoughts in that direction. A few minutes ago, the sky above our little section of LA stopped pouring rain and the sun won its battle with the clouds. That's gotta be a good sign.

Will keep you updated.

Monday, February 16, 2009

Sleeping Beauty

I'm not a big fan of sleeping pics, but this one was too good to pass up. Pablo's new Mickey Mouse top hat, bow tie and suit and stream of drool - what could be better than this? If I had a better angle, you also see that he's holding a black rubber dagger and wearing the size 12 hand-me-down snow boots that Grady gave him.

No Go Fo Chemo/Anger Is An Energy

We just got a call from CHLA. Pablo's platelet count is 62K and not 75K, which is the minimum for chemo. We're gonna go back in tomorrow. We are at the point in the journey where the body starts slowing down its recovery from all the chemo and the other drugs we have to give Pablo to protect his lungs, heart and immune system. Those drugs all kick the s**t out of P's bone marrow and the body's normal regenerative process. (Please accept this oversimplification—I'm not a doctor and either are you lol.) This is the essence of kicking someone's arse to make them better. Like many good things in life, it's counterintuitive in the extreme.

Anyway, when we do start this week, it'll be the final round of Doxorubicin (Red Devil). Then two weeks of outpatient Vincristine. After that, we wait for Pablo's counts to come back up—we have typically had a 10 day delay at this juncture. Once Pablo's blood counts are in the zone, we have either one or two more rounds of the four day chemo cocktail—Carboplatin, Etopicide, Cytoxan and other fine products.

A bit of explanation on the optional second round: Jo Ann has been rallying Dr M and I on the idea of adding back in the amount of chemo that is written in the original protocol. We have had intense conversations about this with Dr M and at home. Jo Ann did an informal poll of other Wilms' Tumor families she's in touch with online. All of the kids who have the same diagnosis as Pablo whose parents responded to Jo Ann got the equivalent of that final round. We're talking quantity of chemo, not number of weeks. The quantity issue is the threshold issue in Jo Ann's passionate discussions with Dr M and I on this topic.

I have said in many posts that the type of cancer Pablo has renders chemo . It's not like playing Asteroids where you frantically tap the 'shoot' button for 15 minutes, and all the little asteroids before you blow up one at a time, leaving a black screen. Chemo with Wilms' Tumor is prophylactic. You're killing an invisible enemy without even the psychological aid of blood markers, which are common with other cancers. That kind of stat chasing would actually make treatment (from our perspective) a lot easier. Everyone likes a scoreboard.

So, when we get into these discussions with Dr M, or with one another, we are debating how to fight an invisible enemy in a way that won't cause more harm to Pablo in the short- or long-term. And, really, we are talking about Pablo's chances of survival. We are talking about our amazing, beautiful, passionate, bright little boy's survival. he's jumping on the sofa right now. I'm looking at him. And I writing words contemplating whether he will be here in a year. And how the WORLD we are supposed to make the RIGHT DECISION about how to cap his treatment.

I can't get my head around it. You might think I'm a deep guy or have a gift for expressing myself, or you might even think I'm a jerk. No matter what, none of those things helps me to understand which lever to pull in the voting booth. Both directions could be wrong. Both could be right. There's a Public Image Ltd song called 'Rise' that will be the soundtrack to this part of my book when I write it. The lyrics and their powerful sentiment are coming up for me as I tap out these words. The operative line is 'I could be wrong, I could be right.' There's another perfect line in the song that John Lydon sings as a mantra—'Anger is an energy'—that fits me quite well right now.

We went to baby Luke's memorial yesterday. I am going to write a full post later this week on the memorial, and our time with John and Laura. I expected to find acceptance and peace, and I did. But something else came up for me as well: anger. I am so f**king angry at this disease. If you want to know why (other than the obvious), check this out: Lance Armstrong was retired from racing for 1,274 days. His retirement ended when he started his first race back last month in Australia. In those 1,274 days, 27.5 million people died from cancer worldwide. Lance has those numbers emblazoned on the tubes of his bike. One of those 27.5 people was my brother Scott. I want Pablo to be one of the people who rides his own bike and shares his story of survival. I want Pablo to ride beside me, like our hero Lance, to show people that cancer has two outcomes. And one of them allows you to stay upright and fly.

Sunday, February 15, 2009

Sunday Night On Sunset

Pablo standing in front of the Elliott Smith wall on Sunset Boulevard, next to Malo. Smith's 'Figure 8' album cover was shot here. On the way to dinner, I told Pablo that tomorrow is a holiday.

He asked what holiday? I told him it was Presidents Day.

He said—and this is verbatim—'Right. He has to clean up all the problems that George Bush made when he started the problems. Like research and cures and stuff.'

Pablo+Polly In 3D

Polly took Pablo to see the 3D movie "Coraline.' Here they are in
their space-age glasses.

Outerspace Saturday

Saturday was a gift from the chemo gods. Pablo and I went on an afternoon. We stopped at our new office. I wanted to show Pablo the progress that was made this week on the finish work. He loved it. We sat at my desk and reviewed a budget. He was completely enveloped in reading the numbers. He saw a $2,500 line item and said, 'two five hundred.' Then he said, 'Papa, what if you owed me $1,800? You'd have to make a lot of money to pay that.'

We continued on our way, winding up Sunset Boulevard a mile, and up to Los Feliz a few blocks north. We went to see Peter and Brie and baby Lennon (he was napping), and Brie's parents and a bunch of their friends from the Bay area who are here for the weekend. Then made our way over to the Griffith Park Observatory for lunch and some planet hopping. On the way there, Pablo named a bunch of planets (this is an exact quote): 'Pluto, Mars...and Pennsylvania.' One of these days I'm actually going to get pulled over for suspicion of drunk driving when P drops a line that. I'm sure my laugh-based loss of control behind the wheel looks the same to the cops. It has been raining off/on for two weeks, and we saw all the way to the ocean.

While we were lost in space, Jo Ann and Grady had a much-needed rendezvous of their own. They had lunch in China Town, and, based on the pile of bags I see in the hallway, went to Urban Outfitters, Target and a bunch of other shoppes. They had dinner at the #2 best sushi spot in LA (next to Nozawa), Sushi Park, and then checked out revolutionary skater Stacy Peralta's Gangland documentary 'Crips And Bloods' at the Sunset 5 theater. I say much-needed cos Grady had been with Jimmy for nearly three weeks: one week while Pablo did his last in-patient treatment, and then another chunk of time cos he was sick with a virus. We missed him immensely. Just another little chunk of emotional toughness that comes with cancer treatment in a post-nuclear family.

When I got home from my ride Saturday morning, Grady and Pablo were watching YouTube clips on TV via AppleTV. Grady loves Lil Wayne, and was watching LW's interview with Katie Couric. He asked me to sit down and watch it. I was blown away by LW's clarity and focus. At one point he said, 'Ms Katie, I love to work.' At another, he said, 'I am music'—a reference to the words tattooed on his face. I love Lil Wayne's singles, and I knew he was from New Orleans and went to high school across the street from where Jo Ann went. But I knew very little about him prior to watching 12 minutes of clips of his Couric interview. I also now see why Grady is so into him: he's a real artist in every sense. His answers were proclamations. He did not pause or hesitate when speaking. He was believable. From the heart. Real. Not concerned with what others think. At one point, on the inevitable 'role model' question that every celeb musician gets asked, LW said, 'If you need me as a role model, you shouldn't be alive. I am a role model for two people, my kids, and nobody else.' I wish we had more artists were so straight up. Culture would get a lot more respect if the people making it actually knew themselves and weren't hiding or ducking from the world.

After the video clips were over, Jo Ann, Grady, Pablo and I sat and talked about how we felt about what we'd just watched. I was filled with warmth to see Grady so passionate about Lil Wayne. He knows everything—I mean everything—about him. That is incredibly powerful to me. I mean, I'm 36 and I still get a kick out of riding past David Lee Roth's mansion in Pasadena, hoping that one day I'll see him. Music, books, art, architecture carried me out of a basement in Milwaukee. When I was his age, those things were all I cared about. When Grady's passion for Green Day waned over the past year, Jo Ann and I were worried. Being music people, we wanted G to be passionate about something artistic. We didn't pressure him or anything, but we talked many times—even with Jimmy—about this. Turns out Green Day were a path to Lil Wayne and a complete obsession with an artist, his art, how he does what he does and why.

Can you tell that we're actually elated that Pablo's platelet count wasn't high enough for treatment on Thursday? If his chemo had gone down this week, we'd have been home-bound for the weekend.

Here are some pics from our Saturday at the top of Griffith Park:

Do you believe they put a man on the Moon?
That double vision
Man...or Astroman?
Standing on Peter and Papa's desk. This dude means bizzznessss....
At the Observatory dining room.
Pablo on the glass at the office. He did that without prompting from me. Seriously.

Friday, February 13, 2009

'nother Great D-Land Day

Jo Ann and Polly took Pablo to Disneyland again this morning. This will be the shortest post ever. The pictures say it all.

A Note From Yesterday

Friday 5 a.m.

This post is indicative of where I am in life right now: struggling to be 150% at home, struggling to be 150% at work, struggling to be 150% on the bike (where I burn off steam and create headroom for the two prior entries).

I started this post Thursday morning at 8 a.m. Got to the office early, skipped my ride, and wanted to have an hour to think, write and be. Didn't really work out cos I wrote half a post and saved the draft. I've decided to finish the post, even though you already know from Jo Ann's Thursday post that Pablo's blood numbers weren't high enough for admission. Why do I want to finish and post this writing? Because erasing or gutting a post is something I've never done since we started the Pablog on May 18 2008. It's a rule that has helped me keep communicate accurately the emotional as well as the informational. If this blog were just information, it would be called the PabWire—just another information ticker in a world full of scrolling babble.

So here it is....

Thursday 8 a.m.

Jo Ann and I are hoping that today Pablo will be admitted to CHLA. The dude needs more chemo, needs to keep turning over those pedals so he can reach the summit of this mountain called cancer treatment. He's a l m o s t there. If his blood numbers have risen as much as our hope, we'll be in business for the next two nights. And he'll be that much closer to the finish of this insane race that kills cells as it grants Pablo life.

As I sat down to write this post, something occurred to me: Who
wants and plans to have their child admitted to a hospital? That's kind of insane. But it's our reality. And we've gotten so used to it it feels strange to drive by CHLA and not stop there. I can see CHLA from my new office—it feels strange to see it as a giant cluster of buildings, and not the spot where Pablo's residing. The energy we have gather—and manage—is immense. It's a mix of 'always on' and 'always off.' The latter is a rare state for either of us, especially me. In the mix of all this treatment stuff, I have to go to work and be the person I signed up to be with clients, employees, colleagues, et al. Sometimes I'm operating on the emergency backup to my reserves. Take that back: since May, I'm almost always operating from that standpoint.

These days, when there's a crisis in my professional life, I am able to observe the situation, my reaction, other people, in a way I'd never imagined. It's not that I consciously think 'this is not as [insert word] as Pablo's cancer.' But it's not too far from that. Almost always, I try to insert a positive word or phrase. It would not be fair to others or me to counter-weigh every situation against Pablo's cancer. It'd be like Rocky Balboa walking around all day at the mall randomly trying to find an opponent who could take his mighty punches. Cancer is a fierce foe. And it's not my job to use it as a weapon. The handful of times I've invoked Pablo's fight in a moment of anger or verbal struggle with another person, I've regretted it. So...turns out, when I don't make things into 100-pound monsters, they don't take on that darkness. And when I do, it takes me longer to pull through than ever.

Before I sign off, I have a quick story to insert—you know how I get when it's story time.
A few months ago I spoke at a tour of the new CHLA hospital, which will be opening this time next year. The tour was for philanthropists and assorted VIPs. Among them was Johnny Carson's nephew who, along with the head of the Carson Foundation, donated $5 million to the new hospital at the event. On the mic was me and Mary Hart from Entertainment Tonight and the CHLA CEO Richard Cordova. Kind of ill, if you know what I mean. I got up to the podium and started talking off the top of my head, from the heart—freestyling is what we call it in the biz—I never use notes.

The first thing I said was, 'This is the most beautiful building, filled with the best technology for the best medical professionals to help our sickest kids. My greatest hope for this new hospital is that nobody would ever have to bring their child here.'
Some people smiled (they knew what I meant) and others scrunched up their faces wondering why they'd written checks for millions to a hospital that would allow such a nut to speak to them. I elaborated, weaving our family's CHLA story into a larger narrative about what a symbol of hope and strength the new hospital will be when it opens. The room loosened up. Coffee was sipped and cookies were bitten. I noticed that some people were wearing their hard hats even though they weren't required in the room we were in. While I was standing at the makeshift podium—I recall that it was a construction cart of some sort—I wondered if I could ever truly convey what it was like for me, for us, for Pablo.

I went on about Pablo's amazing journey at CHLA, and how even though his cancer diagnosis was the toughest thing our family will ever face, there were myriad blessings embedded on his path of treatment and recovery. And plenty of angels with CHLA ID badges clipped to their shirts helping us along the way. By the time I was done, Mary Hart was ready to do her thing. She hugged me, and, at long last, I was just one tiny step away from the loving arms of John Tesh. My message was simple: thank you for the Benjamins,
and let's hope that the research tower does such great work that, one day, the hospital could be empty. I couldn't—and still can't—stop myself from feeling this way.

Friday 5:30 a.m.

Don't ask me to explain how I went from pondering Pablo's blood counts to a recollection of a speech I gave months ago. It just happened. There are probably more than a few connectors joining the two moments. Before we turned out the lights last night, Jo Ann told me that she and Polly are going to take Pablo to Disneyland first thing this morning. They're going to have a blast. And I know why I'm saying that.

D-land pix and tricks coming later today. Thanks for listening....

Thursday, February 12, 2009

Chemo Update

Pablo and I headed over to the clinic this morning to get his cbc. We actually decided to stay and wait for the results because we both thought that he might not be ready. Pablo noted that he still has a few bruises and when his platelets are ready, the bruises are usually gone. I had to agree with him, so we headed to the playroom for an hour. Turns out that we were right. Pablo's platelets need to be at 75,000 and they were only at 48,000 today. So, it looks like Monday is our day. Pablo knows that this is his last two night chemo treatment. The final round of Red Devil! We are looking forward to being on the other side of this...

Now, we are trying to organize some fun activities for our weekend.

Tuesday, February 10, 2009

Descanso Gardens Getaway

At 5:38 p.m., Polly sent Jo Ann and I a short email with five pics that illustrated a fun afternoon at Descanso Gardens, a botanical getaway in the foothills of La Canada. It's about 15 minutes drive from our house, and a few minutes from Grady's school. This is also at the foot of the Angeles Crest portal into the San Gabriel Mountains, where I ride my bike a lot (including tomorrow morning). So, it's a special area to our family.

The note and the photos brought a smile to my face. So I've pasted the whole thing here for you. Afternoon adventures with Pablo are a beacon of hope for everyone around us, especially those who are lucky enough to share the time with him. Hope is the rail we ride on to get through the strange and strangely inspiring time we are living in.

Here's the note and the pics:

Sorry about the quality—my camera is dead so my phone is all I have now. The last two are Pablo leading me by the hand as we blazed our trail. He was a good leader. I included the one of me because Pablo took it. It's so sweetly off kilter.

Monday, February 9, 2009

Good News

We just met with Dr M - everything's clean and clear on the ultrasound and the urine/bladder test. This is a case where no (bad) news is good news. Ben Berry from Dangerbird just picked me up (our new office is one minute/three stoplights away from CHLA) and Jo Ann / Polly ran Pablo to get a chest X-ray, then home.

We are projecting Thursday or Friday check-in for the two day chemo. The waiting is easy after today's no news/good news.


What better way to start a week than an abdominal ultrasound and a blood draw? We couldn't come up with a better way to begin the sixth week of the year, so we're here in the ultrafun ultrasound lab getting a strong look at his kidney (lookin good - and appears to be expanding, precisely as the docs said it would!), the place formerly known as his other kidney (lookin good - no alien kidney has taken up residence in its place), and his bladder.

When we got here, Jo Ann + P ran up to the oncology clinic to do a blood draw. I went to Starbucks next door to get the party started. Blood test, plus the ultrasound, plus a urine test will give Dr M all the metrics he needs for our meeting at 1:30 this afternoon.

Our goal and hope is that P's blood numbers are high enough for admission this afternoon. We're scheduled for a two-night chemo treatment. I general terms (I will explain what this means in a later post), we can see the finish line from where we're standing. It's not right in front of us, but we know where it is.

More later.

Sunday, February 8, 2009

Dandy Pablo

Pablo has fuzed two of his styles together - pirate and top hat dandy. He looks great, like a collision of Jack Sparrow and the rapper T-Pain. Like someone who steals things (pirate) from people who have things to steal (the average top hat wearer).

We had a fun breakfast at Malo. Harry and Kristal are coming over—hurray!

Saturday, February 7, 2009

Pablo's Fave Activity

Can you guess what it is?

Polly Drops The Deets On D-Land

Polly+Pablo+Jo Ann+Asa (his dad Brian snapped the pic)

Pablo doing his best Grumpy expression....
Polly+Pablo on the Buzz Lightyear ride.... If you look closely, you can see Asa's head—he's ducking.... Read on for details on this bizarre ride.

Jo Ann asked Polly to write the Disneyland post, and write she did.... Here's the full report, beautifully reported by the Carnegie Mellon grad on our team....

Ah, the dentist. Every boy's favorite way to spend the day. Actually, Pablo never bought for a second that he was on his way to the dentist. I've claimed too many outlandish things in the last few years and he's on to me. "No, seriously, if you eat too much, it squeezes out your ears. Also, you can buy baby sisters at Trader Joe's. I'll show you next time we go." So though he was certain he wasn't headed for the dentist, he wasn't quite sure what those two crazy ladies he calls Mommy and Polly had in store. Though he could have been yanking our chains just for the fun of it, I definitely wouldn't put it past him.

When Jo Ann mentioned taking the Pea to Disneyland a few days ago, I pretty much invited myself along. I've had a season pass for a few years, and Dland is a fairly frequent destination of mine. I always come back loaded with stories for P about the things I've seen and heard. I love to paint fantastical pictures for him, and we've spend a lot of time over the last couple years discussing how we were one day going to take the place by storm. There was no way I was missing his first visit to Disneyland in two years.

I arrived at 8:20. Jo Ann and Pablo were already in the car. Jo Ann told me Pablo knew he was going somewhere good today and kept saying "Don't you think we should go now? Isn't it time to go?" until he succeeded in herding her into the car, ready to jet the second I arrived. After a quick pit stop at Starbucks for coffee/cocoa and Winchells for chocolate donuts and apple fritters, whoa, we were headed down south. We met up with Brian and Asa and rolled into Disneyland right after they opened the gates. When Pablo got confirmation that we were in fact at the House of Mouse, he played it cool, but there was no doubt he was pleased.

He was in happy cuddle mode from the start, which my aching biceps are still reminding me. This was a good thing, since his platelets are super low and he'd bruise right now if you sneezed on him. Jo Ann I debated a stroller, but decided against since it would cut him off socially from the rest of us. This meant we had to be extremely vigilant that he wasn't bumped by the crowd as we walked. Pablo was informed of this caveat and he got it. He knows how these things work by now, and though he has to be reminded, he understands the reasoning behind the rules.

I admit I selfishly hogged him all day. As we walked in he asked me if I wanted to sit next to him on the first ride. "Let me make this clear, P, I want to sit next to you on EVERY ride." And so it was. After a power walk down Main Street USA, forty pound monkey on my hip, we headed straight to Peter Pan. Mommy and Brian held our spot in line while Asa, Pablo and I went to try our hand at pulling the sword out of the stone. Turns out neither of us is the true king of England, oh well. In line Asa debated with me whether or not Peter Pan is real or just a dream. He could not be convinced that Peter was really in the room and really took the Darlings to Neverland. I relayed this info to Pablo, who responded that of course Peter is real! In the end we all agreed to disagree.

Back when the Pea was three, Peter Pan scared him. Too dark, and there was a crocodile trying to eat Captain Hook. He was nervous this time, but wanted to give it another go. Weeeellllll, it's still dark, and there's still a croc angling for a piratey snack. Pablo chose Mr Toad after escaping from Peter. He drove the 'motorcar' like the devil was on his tail, because that one was just as scary. However, he was proudly reviewing his driving skills today, so I'll call the Mr. Toad Ride vs Pablo at a draw.

After that, we stuck to bright and cheerful rides. He was happily in jail in the monkey car on Casey Jr. and all wide eyes and swiveling head trying to catch everything on Small World. He LOVED the flying carpets and basically everything else in there. The posse hit Toon Town and he was a man on a mission. We had two things on our list of Must Do: 1. Check out Mickey's house and meet the Mouse. (Check.) 2. Ask Goofy if he does, in fact, know how to bake a birthday cake. (Double check.)

The other day driving home from checking out Batman's *ACTUAL BATSUIT* at the costume exhibit at FIDM, we saw a billboard with Goofy on it. He was holding a birthday cake and asking us to come to Dland for our birthdays. After a conversation about how nice it would be to go to Disneyland, while I smiled to myself with my secret knowledge of the next day's activities, Pablo mused that Goofy may have made that cake himself, and maybe was the birthday cake-baker for everyone. We resolved to ask him if we ever ran into him. Well, the opportunity had come. After posing for a snapshot, P asked Goof if he knew how to bake a birthday cake and of course the answer was yes. Case closed.

Next up was lunch and it was perfectly timed for us to watch the Jedi training that goes down daily in Tomorrowland. P was a little nervous when the loud music started and the Stormtroopers arrived. Then Darth Vader and Darth Maul made their appearance and he said very clearly, as he has learned to do, "I'm scared." I picked him up and held him and we watched all the little kids vanquish Vader with their slick light saber moves. Maybe next time our own Padawan will be ready to take on Vader himself.

By now the crazy cold-then-warm-then-cold again weather had resolved itself to rain. We escaped into Buzz Lightyear. "Is this the one with the laser guns?" Yep, and the little eyes lit up. Asa and Pablo took the helm of our car, with Jo Ann and Brian in the next. The boys were neck in neck in points the whole way and ended in a near tie. Pablo says this was his favorite ride, though meeting Goofy was his favorite part of the day. The ride takes a little picture of you as you scoot past, and we are nothing if not focused. I'm checking the stats, while Pablo stares grimly ahead at his laser target. Asa ducked down at the moment so all you can see is the top of his head. Believe me when I tell you, we were having more fun than it looks! We were just concentrating really hard on the fun.

Pablo climbed Tarzan's tree house, dragging me behind him. He announced that we should live there, so I'm sure we'll be packing bags soon. We had a plan to hit a few more rides but as we crossed into New Orleans Square the rain really started coming down, so instead we veered into the train station. A cuddly and dry ride around the perimeter of the park, and we were let out at Main Street, back where we started. Pablo scored a Goofy doll from the big store on the way to the parking garage and it hasn't left his side since. He snuggled with it as he slept the whole way home in the driving rain, probably dreaming of the next Disneyland P-Storm.