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.

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.

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.

E.
xoxo

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.

Brogurt!

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?

Pablo+Lance

Livestrong

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!