Pablo's HOME!

After six nights and three different rooms in two wings of CHLA, Pablo's home! At around 6:30 p.m., the door opened and Pablo came barreling through. What a sight!

Jo Ann is zonked. Aside from sleeping in CHLA for five nights in the past week, she woke up bright and early and kicked maaaaajor butt at the blood drive at the Walther School. We'll put up a full post and pics tomorrow. The bottom line is: it was a great event, supported by friends from all corners of our world. Over 50 people came to donate (some were turned away due to colds). 38 pints were harvested. That's a HUGE success!

That's all for now. Sleep time.

Crescent City Cure

If you have an image of Pablo sulking in his hospital bed, this photo will shatter that misconception. He got the Mardi Gras bow tie with the King Cake from New Orleans that arrived today. Sugar, cinnamon and sparkles - the perfect cure for hump day hospital boredom.

Blood Drive Reminder

Dear Friends,

Tomorrow is our first Blood Drive for CHLA. Pablo's beloved Walther School is hosting and we are expecting a great turnout. If you are near the West Hollywood area tomorrow, please consider coming by to donate. We will be there from 9a-2p. And if giving to children that really need your help weren't reason enough to come by... there will be cookies from Helen and Yummy Clare!

Hope to see you there!

xo
Jo Ann

Love Is Real

Today was business as usual at CHLA. After changing to his own room yesterday, Pablo had to move to an entirely new room today. This time with a roommate. His solo room was needed for a child who required isolation. We've been in that position before, and we knew that at some point the tables would turn. That's how it goes. It's very nice when we get our own room—especially for the parent sleeping over with P. The built-in parent bed is way more comfy than the biz class sleeper chair. And, for me, although I love snuggling in bed with P, his bed isn't big enough for me, and my legs cramp all night, and usually the next day. Pablo's urinalysis came back negative for blood and infection today. It's been going back and forth since we checked in on Friday. There was a chance that a micro-plot was going to develop if there was an infection, or if the presence of blood persisted. It's a relief that this is no longer a concern. At least not today. Enough small talk.

I've been thinking all day about how to write about this. There are very few things I am hesitant to talk about on the Pablog, and this is one of them. What I am about to write about is our experience with another family's journey. Baby Luke, and his mom Laura, dad John and big sister Gracie. We have been inspired by Laura and John's grace. Simple as that. When you live on the cancer battlefield, you notice grace when you see it. It stands up and demands your attention. We got to know Laura and Luke in the hallways, in the waiting rooms, waiting for the restroom. Random 'hellos' turned into much longer conversations. Jo Ann and Laura have become quite close over the months. Seems like every time we've been in the oncology clinic at CHLA or in-patient up in 4 West Laura and Luke have been there too.

Beyond all the interaction we've had with them, Jo Ann and I have talked a lot about them. Our hope for Luke became synonymous with our hope for Pablo. Their progress
became synonymous with Pablo's progress. Luke was always on our minds—especially Jo Ann's—and if they had a down day, we would download about it at the end of ours. To use the battlefield reference again: to us, Luke's family was like a unit fighting next to us on the front line. In a war that matters.

We knew that they were at a critical juncture in Luke's treatment. There was a very long surgery to remove a tumor that had recurred. We figured it would be like clockwork: do the surgery, remove the tumor, and continue with the treatment plan. Keep the front line strong and steady. But on Friday, Laura and John got some very, very tough news. All the minutes and hours and days and weeks and months—all the life and hope and prayers and dreams they have put on the line to kick the s**t out of the cancer in that little boy's body—hinged on one central factor: that the cancer would go away. Forever. And it appeared that that would be the case. For a while.

On Friday, Luke had another scan. They wanted to verify that their plans for the next round of treatment were sound. What the scan revealed was cause for the kind of conversation that stops a man in his tracks when he knows he has to have it with another person. Especially the parents of a precious, darling little boy. It's the kind of conversation that when you see it in a movie, you are glad it's in a movie and not in your calendar in the TODAY column. It's the kind of situation Morrissey was talking about when he wrote the great Smiths lyric 'I've seen this happen in other people's lives, now it's happening in mine.' I could go on, but you get what I mean.

What the scan revealed, and what the doctors had to tell the parents, was that Luke's cancer had come back. Strong. And more of it than before. In an instant, the plans for a future battle were dashed. The discussion shifted from more chemo and possible stem cell transplant to a plan to create lasting memories for Luke and and his big sister Gracie? Go ahead, read that sentence again.

Last night after dinner, I came upon Jo Ann in the hallway. She was talking to Laura. She was holding Luke. With an NG tube down his nose and taped to his face (a common sight on the fourth floor of CHLA), Luke was so cute, and sweet as ever. He seemed tired, and Laura remarked that he was always like that. Since his last surgery. When I walked up to the conversation, Laura was talking about how they were going to sleep in the same room as a family. I thought she was referring to maximizing the space in their room in the bone marrow transplant unit. I had missed a beat—a giant beat. She was talking about how they were going to all sleep in the same room at home. She and John decided it'd be best to set up a blow-up camping mattress and sleep in the kids' room. They have created a family bedroom so that all of them: Dad John, Mom Laura, sister Gracie and Luke, would be together for every moment.

At some point, I excused myself from the conversation. I wasn't actually in it, and anyway I was on my way back to Pablo. As I walked away, I didn't quite grasp what they were talking about.

A few minutes later, Jo Ann caught up with me. Grady and Pablo were playing elsewhere, and we had a rare private moment to talk. Jo Ann was beside herself. She told me that Luke—our friend who has been around constantly over the past few months, his journey, his hope intertwined with ours—was finished with treatment. A second flashed by: what did that mean, finished? Her next sentence filled in the gap: after weighing the options, the family has made the decision to go home and create as many enduring memories as possible. Based on what they saw in that scan, they estimated that Luke has a week or so to live.

I remember hearing air. It wasn't windy in the room. But I could hear nothingness passing through my head. White noise that wasn't white noise. It was far from white. I knew the noise. And I had seen this happen in my life, when Scott was that close to death. With Jo Ann's compassionate encouragement, I have let Scott go. So I was not going to go down that massive road of memory again. But the simple fact is, while I didn't want to stroll down that road, I knew the block I was on.

A little while later, Grady and I were leaving CHLA to go home. In the underground parking structure, the elevator door opened. Laura was standing there. I grabbed her and gave her a giant hug. I wanted to weep. But I did not. I mean I wanted to—my intellect was in the way. She went into the elevator and went on her way. It was clear that she was at peace with the news. You would have to be. People like us, we aren't dealing with flash news. This cancer stuff has controlled our lives for months—almost a year. The news, it comes with a very—loud—bang—but it's not a shock in the way that getting hit by a car is a shock. So the mom was peaceful and I felt it.

As G and I turned to our left and walked toward the car, we saw John packing Luke and Gracie into their car. I've only spoken to John twice. He, like me, has to work, while Laura, like Jo Ann, did 24 hour duty at CHLA. John too seemed at peace. I wanted to hug him. But he was on the other side of a thick concrete parking lot pillar. So I shook his hand. It was a rare situation where I did now know what to say as I shook his hand. I don't recall what I did say, but I recall saying something. John gripped my hand firmly. His hand was strong as hell. The energy he transferred into me was real, powerful, did not need words. John, like me, had packed his little boy and his little girl and all their bags and pillows and books into the family car countless times in that very parking lot. His hands were strong because his journey of packing the car in that parking lot had come to an end. There would be no more parking lot packing for him at CHLA. The look in his eyes I will never forget.

We love our little boy friend Luke. We love his family and their grace and serenity and dignity. We have asked you to turn your consciousness in our direction so many times. This time, we ask you to turn it to our friend and his amazing family, in Calabasas.

Love is real. Light is real. Your thoughts, intentions, prayers are real. They are felt, and they make a difference in the world. Take a moment today to send love to Luke, Gracie, John and Laura.

Dr Pablo

Pablo giving his patient an oral injection of medicine.

After breakfasting in the scenic CHLA basement cafeteria, we're in the 4 West play room. Pablo made a paper dragon, and then turned his attention to the baby 'patient' doll. He just informed me that I'm the baby's papa, and he is the doc. Clipboard in hand, he is asking me all the right questions: when's the last time the baby went potty?; has she been drinking and eating?; how is her energy? He then moved on to his blood analysis: the baby's ANC is 5 ('too low'); white blood is .001 ('that's way low'); red blood needs a transfusion. While he was ordering the blood, he examined the patient's eyes: 'there's bleeding - we're going to need platelets too.'

The kid knows his stuff! I tried to hold back my joyful laughter - it was fascinating to hear Pablo - er, Dr Castelaz - recite all this medistuff. On a deeper level, it's probably very healthy and helpful for Dr C to push that knowledge and energy around. Relieves it of all the seriousness that normally surrounds blood counts, transfusion orders and the myriad medical interview questions he and we get every day.

After watching 'Rocky II' and 'Rocky III' last night on AMC, P is officially a boxing fan. With his size M green medical gloves mimicking Rock's puffy red gloves, Pablo and his sock monkey doll went 12 rounds in his bed/ring. Not sure who won. But Pablo seemed to dominate the fight, doubling as the ringside blow-by-blow announcer.

Mommy and Grady could have slept til noon. They deserved to! But I woke them at 9 a.m. (thought they'd be awake, honest!) to ask for coffee. It was great to see them this morning. Sometimes, the overnight shift feels like an eternity. Especially when our roommate keeps the TV on and the volume cranked all night, which was the case last night.

Jeff Beck is our nurse today. He is one of our main crew of 4 West peeps, on loan today to 4 East. Jo Ann is workin hard as we speak to transfer Pablo to 4 West today. Looks like it will work out. Even though the two wings are adjacent, we feel more at home with the soft tumor crew and patients in 4W. They are family.

Pablo is doing fine. As usual, he is a mini-ringmaster in his giant comfy hospital bed. He's keeping us all going with ideas for board games, counting and telling stories. Dr M told me last night that we should plan on staying at CHLA a week. He isn't going to discharge P until his blood numbers rise. Not a surprise—same deal as usual. As strange as it is to shift our physical base to CHLA, we're used to it. And it's the best place for Pablo when he is neutropenic (zero white blood count), despite the fact that we live four minutes away.

We wish you and yours a happy Sunday. Will check in tomorrow.

Adam Harrison In The Hot Seat

Adam Harrison in the platelet donation recliner. He spent two hours in that position, watching a movie as the giant machine on the right sucked his blood out and cycled it back into his body. On Saturday afternoon. That's friendship, service, family, right there. Besides, he is one of the two people responsible for me asking Jo Ann on a date. So supporting Pablo is essentially his duty.

I'd love to donate plates. But Raul, the blood center head, won't let me. Why? Cos I'm a Class A wuss when it comes to needles. I asked him last week when I could donate. He laughed. Hard. 'Bro, we're just going to keep you donating blood.'

Friday Fever

We are at CHLA. Polly packed the bags, Jo Ann ran to pick up Grady at school. P, G and mommy raced to the ER, arriving around 3 p.m. I finished my afternoon meetings, grabbed take out for the fam from Malo, and got here round 7.

Our room on 4 East (about the only wing we haven't been on in this place) is ready. Pablo and I are waiting for the (incredibly slow) staff to give us the magic piece of paper that allows us to leave this area for our home turf upstairs. We must drive them nuts down here, cos we always walk up to the fourth floor to advocate and investigate. Otherwise, we'd be stuck in here til the wee hours.

To pass time, Grady and Pablo made music on Garageband, the recording program on his MacBook. When I got here, I joined in. That was fun. I've never used that program. I was really onto something - a late-70s Kraut synth kinda thing. Pablo was adding his own notes into the riff I was freestylin. We recorded five minutes of riffage and then it kind of exploded. We got bored and shut the computer.

This whole gig is a well-worn routine by now. It's been a while since Grady joined us for one of these check ins. He's going to sleep here with Jo Ann and P. It's exciting for Pablo to share this space with him. They have fun together. We're expecting to be here a minimum of 48 hours. That's the rules for a fever. A bunch of other factors will come into play, such as P's blood counts. If he is scraping bottom, it's unlikely that Dr M will discharge him. He feels - and we agree - that it' best to have Pablo building back up in an environment where he can get a constant flow of antibiotics, white blood boosters, and, if needed, transfusions.

I think I hear the nurse coming to hand us our papers. Will check in tomorrow.

Wax On, Wax Off

Above photos are evidence that Pablo has an older brother. His name is Grady, and he calls this trick a Toe Willy.

Jo Ann and Pablo went in yesterday afternoon for a blood draw. As expected, P's blood numbers are at the bottom of the cycle. This is when he is on full lock down. No rough play, no contact with the outside world. Lots of board games. Lots of Scooby. Lots of messin around with Grady and Mommy. And, on this particular weekend, lots of Tour Down Under (first race of Lance Armstrong's return to cycling) with Papa.

One new medical aspect this time around is the daily shot of Neupogen. It is meant to successfully send a signal to Pablo's bone marrow to accelerate the production of blood cells. Up to now, Pablo has been given a shot of Neulasta—same idea, but the single shot is meant to send the same message of production over a long period of time. Dr M's hope is that the daily shot will make a difference in Pablo's blood recovery. His upswing in the last round of chemo was the slowest yet. And the best chemo regimen is one that is administered on a rigid schedule. Delays because of fevers and slow blood recovery are no ideal.

We have had an intense, but very productive and normal week. In many ways, this week has been the best since May 17. Why? Because Pablo is engaging and engaged, hilarious, insightful. To say it plain, he is happy. And he shares his happiness and love frequently and freely. Here's an example of what I'm talking about—Polly relayed this story to Jo Ann and I yesterday over email:

'Today when P and I were playing with his dolls Fudgie K.K.J.J. and Monk, Pablo was setting the scene for what was going down between them. After adding lots of details, he said, "OK, let's review" and summarized the thing before we started. I'm surprised he didn't bust out a Power Point presentation.'

Maybe it's a 'my kid' thing, but I laughed out loud when I read 'let's review'!!!!! Genius! Hilarious.... And, I hope he remembers that phrase—it'll help him on many a future homework night.

What fascinates all the adults in P's life is the simple fact that while the chemo and radiation are doing their jobs of destroying things inside him (some good, mostly bad stuff), and P's entire life is focused on the administration of and recovery from medical s**t, he is racing down the road of intellectual, physical and spiritual development. Even in the absence of abundant play with children his age and group education (ie, kindergarten). Every day, Pablo tells us what he knows, what he's deduced, what he wants to know, that he can use the information he's mastered, and that he isn't afraid to use his bro, parents and nanny as a test audience. A crystal clear depiction of the human spirit in early bloom. Whether you believe that all of us nut bags descend from a flash of light in space, or from a supreme being, or from painted turtles on a faraway island, this is a beautiful thing to witness. No one can argue that.

I am describing Pablo's bloom cos he's the only little kid around me. Everyone who reads this has stories about a child(ren), all moving, gripping stories for sure. These moments are life. All we are asked to do is slow down and savor them. If we don't, we're sure to rely on Hollywood to paint a facsimile of tender moments. And that's not fun.

Cancer has been a strange blessing in our lives. It has slowed us down, given us hundreds of hours together as a family. It has thrown us against the wall in situations when we've been s**tty to one another. It has forced us to deal with logistical aspects of our family life and thrust them into the background so that life can happen (for years, it was the opposite).

On a very specific note, Jo Ann and I have learned how to economize energy, go to sleep early so we can wake early and have alone time or get things done. We have accepted the fact that, at the exact time Pablo has meant to go to kindergarten, and be away from the nest for a long period of time every day, the exact opposite has gone down. Jo Ann says it's like having a five-year-old newborn: he needs constant attention and monitoring. And we are forever looking at him, reminding him to 'walk!' when he runs across the house, or offering him precious calories in the form of any kind of food he'll put in his mouth.

In the past few weeks, he has taught himself how to use our crazy hi-tech TV remote. Thank God! Every 26 minutes one of us would have to go into the TV room to scroll through the Tivo list and help him pick out a new 'Scooby Doo.' When you've heard me say I'd do anything for P, I haven't been lying. But spending 10 minutes debating which episode of 'Scoob' was about to fall off the 'anything' list! Seriously....

Pablo's self-motivated desire to learn the remote has also helped with spelling. You can't navigate a Tivo list if you can't spell. In his case, he has devised a technique where he knows the initial letter of his fave shows. On days where two shows begin with 's,' he has asked about the second letter in 'Scooby' and so forth. He's learning the basics of letters and sounds and words as a result of his cancer treatment. It'll be a great story to tell his kids. And hopefully this accelerated skill will afford him some extra time to ride his bike after school in future grades.

It's really something to see Pablo ask for help, get it, and then utilize a newly mastered skill. It's so basic. And it works. It's actually helped me to break down complicated tasks in my own life. The student teaching the teacher.... Wax on, wax off....

Pablo Quote Of The Day

Jo Ann just emailed Pablo's latest proclamation:

"I need a sword. I'm unsworded."

Thank You Penelope!

I just want to acknowledge here how fortunate we are and have been through every step of this crazy journey that began eight months ago. One of our many lucky stars is Penelope! We were introduced through two separate, unrelated groups of friends our very first week at CHLA back in May. She came right up to us and introduced herself and told us, "If you need anything..." Well, we have taken her up on that offer many, many times.

Penelope usually works in the Day Hospital at the clinic. When we were going in for our out-patient chemo before surgery, our scheduled day happened to be one of the two days that Penelope works there. We would never leave without finding her to say "hello." By the time we had to actually come into Day Hospital, we were known as "Penelope's friends." Not that we got any extra special treatment, but the warmth and familiarity began to settle in for us.

I remember running into Penelope in the lobby of the clinic after a very heated and stressful meeting with the surgeons, having just learned the night before of Pablo's unfavorable histology diagnosis. Just seeing her, I started weeping and she hugged me, cried with me and assured me that we will all be OK. We will get through this and that she will always be there for us.

Once we started our new protocol we were informed that an insurance approved pharmacy will be sending a home nurse over to administer the Neulasta shots to Pablo. I immediately called Penelope! NO NO NO - no strangers in our home poking needles in our boy. I asked Penelope if
she would come by once every 3 weeks and we would pay her whatever...tell us... As you can imagine, she agreed without even skipping a beat, and refused any sort of compensation. I'm crying as I type this now - seriously, how amazing she has been to us.

Penelope gave Pablo all of his shots, always making her way over here, mostly on weekends. Her daughter Helen is almost always with her. They take good care, shoes off, hands washed, etc... so so sweet.

Well, now we have the shot everyday - all I could think about was, how is this going to work? I'm a highly emotional person to begin with - add watching your child scream, kick and cry to that and I'm a complete mess...

I was taught the basics on 4W before getting discharged and was told that it would be best to have a home nurse present, just to look over my handywork. I called Penelope and as you can now deduce, her response was, "Absolutely, what time?"

Penelope spent a lot of time with me. Walking me through preparation, drawing the serum, changing the needle, push air, invert bottle, pull more than you need, get air bubbles out, etc... And I mean a lot of time. As Jeff posted earlier, as we got down to business, Pablo was not agreeable and really having a difficult time, which in turn, made me panic. I started crying and just gave Penelope a look that must have said it all. She nodded, took the needle from my hand, gave Pablo the shot and told me that she'd be back the next day.

The next day she returned and I was determined to do it! I did it with her guidance and it was great. I felt good about it. She told me that she would come anytime. I flew solo today, well... not really... Polly was here with me to hold Pablo's hand... but I felt confident and it went smoothly.

All of the pumpkin or chocolate breads that I can make for Penelope and her lovely family will never truly repay all that she's done for our family.

So - THANK YOU, PENELOPE!

love,
Jo Ann

Pablo's Time Machine

Polly texted me this story a few hours ago. So cute and cool I thought I'd share it:

Watching a Scooby Doo about a time machine. Asked P where he would go and he said Milwaukee when Papa was his age so you guys could play. He said 'Then he would be so small!'

The Shot

Today was day three of our home-administered Neupogen shot into Pablo's thigh. Yesterday he freaked hard—oscillating wildly, soul screaming - and we were all crying. Today was a win for Pablo and for Jo Ann. I can't imagine how she mustered the courage to learn how to inject P (the 4 West nurses taught her), and to offer to handle this very sensitive task. But she did, and I love her even more for it. I'd gladly handle running down the hall to get P when he wakes in the middle of the night for, like, the next 40 years in exchange for my lovely wife pushing forward back.

Jo Ann and I often use email to communicate during the day. It's easier than the phone. I want to share this amazing email she sent after the shot went off:

To: Jeff Castelaz
From: Jo Ann Thrailkill

SUBJECT: The Shot

wow today went off like a charm!polly and pablo talked about it and pablo decided to take my advice and "watch Scooby" while I gave the shot. he sat quietly on the sofa, watched me clean the area, looked up a scooby and watched the needle go in...no flinch, no crying. about half way through he started to wince a bit and said "ahhhhh" then it was over. he was such a champ. so courageous. he asked for a band-aid, but then opted out of it when he realized that there was not much blood. just a tiny dot.

then - i gave him the waldorf doll that mary dropped off. he LOVES him and we decided that he can hug him tight every time he gets a shot.

xoxo

BLOOD DRIVE!

The Walther School and The Pablove Foundation are hosting a blood drive for Childrens Hospital Los Angeles on Thursday, January 29th from 9 a.m. to 2 p.m. ALL BLOOD TYPES NEEDED! Come by if you're up for giving back to your community while eating delicious homemade cookies... and I mean Helen McCusker/Clare Crespo DELICIOUS!

MLK Monday

Pablo wants a plain bagel, so we are headed to Sam's Bagels on Larchmont Boulevard. From there, we'll bring Pablo's Skullphone print to the Hanging Gallery in Los Feliz. He's excited to pick out his own frame. Grady comes home today as well—he's been with his dad Jimmy for the past eight days. Pablo has two Skullphone tee shirts for him. We're pretty sure G is gonna freek the funk. He's heavily into street art and will be surprised that the Skullphone dude was in his house when he wasn't home. I had the same feeling in '81 when one of my stepbrothers went to see April Wine and got me a tour shirt. The guy with the lion mask on his head always intrigued me. I would have liked to have seen the band. The shirt without the actual experience felt like a consolation prize. Wow. How did I go from bagels to April Wine? Now you know what my wife has to deal with on a daily basis.

OK, the scene from here is gettin bagelistic. Pablo is still in his jammies, and at the same time screaming about his bagel. He is five and I am 36, so I do believe it's time to be of service to the young one. He needs help with prioritization. Step one: remove PJs. Step two: get dressed. Step three: jump in car. Step four: order+eat bagel. In reality, Jo Ann is helpin him get dressed. Time for me to stop typing. We'll take pics of our adventure.

Penelope, our friend who is a nurse in the CHLA oncology clinic, is coming over at 12:15 to give Pablo his daily shot of Neupogen. He used to get this shot once every three weeks. But that style stopped working, so now we're on a daily dose. Jo Ann was trained to give the shot in Pablo's thigh by the nurses on 4 West. When it came time to do the shot yesterday, she couldn't do it. Pablo started bawling, Jo Ann started bawling. So Penelope gave the shot. I give Jo Ann major props for attempting to do it. I could never never never do that. Ever. Needles. Ugh.

Have a great MLK Day.

Knock Knock: It's Skullphone

The surprise I had in store for Pablo (and you) was a home visit from the artist behind Pablo's fave street art, Skullphone. The artist's actual name is not for publication, since his main platform is the side of buildings and other public spaces. We're just happy to know the name of the image in Pablo's hands above. Pablo called it 'ghost phone' before he found out that he had an equally cool actual name.

I didn't sort out this meeting of the (bald) minds alone. Nikki Monninger from Silversun Pickups is friends with Mr Skullphone, and very graciously introduced us yesterday over email. I had no idea how quick 'n easy it'd be. Mr Skullphone offered to ride his bike over to our house and personally drop a hand-screened print (it's inscribed to Pablo), a grip of Skullphone tees and a cool sew-on patch. We got his mailing deets so we can reciprocate with some Dangerbird garb.

My Skullphone and his friend stayed and chatted for 3o minutes. Very cool dudes. After they left, P and I put on our brand new Skullphone tee shirts (his, a men's small tucked in) and headed to Malo for dinner.

We're hittin' the sack as soon as I hit POST. We're glad to be home. As we were winding down this evening, Pablo remarked, 'I had a lot of fun today.' And then yawned. Good thing the yawn came second. The fun won't stop when we fall asleep: I have the alarm set for 2 a.m., the precise time he needs one of his meds.

Tomorrow, I'm getting up early to ride in the mountains with the guys and gals from my crew, Velo Pasadena Cycling Club. Rachel+Clint+Jonah are gonna be here at 7 a.m. (God bless them!), and Hrishi+Lindsay are takin over the babysitting post at 10 a.m. It's quite an operation over here. Jo Ann will be home from her girls'-two-nights-out-in-town-vacation at noon, just in time to give P an injection in his leg. More about that in tomorrow's post (it's all good, nothing to worry about). Jo Ann is having a great time, and has only checked in a couple of times. I'm glad—I really want her to get a break. She forgot her phone charger, which was a blessing. Her phone is dead (insert Skullphone reference here), which means she is on a true break from the usual stuff.

Night night.

We're Hooooooome!

We woke up this morning around 7:30 a.m. Pablo had to pee, and he was letting me know the way one does when they have 300cc of pee to let go of: screaming to the nearest parent. Despite the slightly jarring wake-up call, P and I were laughing within seconds. We try to call out the maximum volume of his . This is a fun and funny competition that we engage in, something that probably nobody else finds funny. Girls anyway. Most dudes would: the urine volume game is part of that universal body function humor that guys are wired to appreciate.

Danica, our lovely and loving overnight nurse, started Pablo's blood transfusion around 5:30 a.m. This meant that we were poised to bust outta there by 9:30. All we needed was a sign-off from the doctor. At 10 a.m., we were sayin our goodbyes to the nurses and hoofin in to the elevator. Mommy's out on her in-town vacation with her lady friends from New Orleans, and Grady's with Jimmy til Monday. So, us two Castelaz boys knew we were going to get into some trouble when we saw daylight.

Once we hit Sunset Boulevard, things got outta hand. We headed up to Peter and Brie's house in Los Feliz. The plan was for Pablo to check out my 1970 AMX (for those of you who don't know, it's a muscle car I've had for 10 years and just finished restoring), which is parked in front of their house. I got it back Tuesday from Jamey Rawlings, the car guru who did the audio and interior, and I've been itching to show it to P and Grady. Of course G's at an age where he wants to drive it and look at it. Hmmmmmm.... When Pablo saw the car, he just started laughing. Compared to my Prius, the AMX is a C A R: big chrome bumpers, black leather bucket seats and big tires. I assume that it looks like a Matchbox car to him.

We rang Peter and Brie's doorbell. Brie shrieked as she opened the door. Why? Cos she saw a four-foot bear boy with green Grinch hands standing on her doorstep! Pablo was wearing the head from his bear costume, and had on green medical gloves (he dubbed them Grinch hands). We figured they'd get a kick out of seeing him at their door. That P caused a bona fide skin jumper was really hilarious. We had fun hanging with P and B and baby Lennon, who is getting bigger every day. Pablo doesn't really interact with him much, but he talked about him before and after we got there. I think if you're five you don't really know what to say to a six-month-old. Kind of like seniors don't hang with freshmen. Pretty soon, P will be showin L the ropes. For sure. Just like P's older friends Eli and Isaac do with him.

From the Grousbeck rez, we jumped in the AMX. I strapped Pablo in with the brand new seat belt, and we—very slowly and carefully—descended the hill to Fern Dell Canyon. When we go to the wide open road on Fern Dell, I asked P to squeeze my hand. As he did that, I gunned it. The thrust of the car threw P back into his seat. He was screaming happily, and had a look of 'awwwwww f#*@!!!!!' on his face. When I pulled back on the throttle, he wanted to do it again. That's my boyeeeee! Burning rubber wasn't our goal. Our true destination was Trails Cafe. Pablo wanted a Snake Dog, the most desired culinary treat on this side of town. A Snake Dog is a hot dog or veggie dog wrapped in a croissant-like pastry. When you add in the ketchup, the Snake Dog satisfies three major food groups: meat, veggie and bread. Yum. I only took 1.87 bites. Honestly.

We ran into our homeboy Mickey Petralia at Trails. Not surprising, cos he owns the joint. Mickey has a son named Pablo, and also has a dream of owning an AMX one day. Had no idea! He had an AMX Matchbox car when he was a kid. How crazy is that? If he ends up getting one, we can start a web TV show. Something about 'two dads with vintage AMX muscle cars, and their boys named Pablo.' From there, the possibilities would be endless: we could solve crimes, commit crimes, collect pink slips winning drag races, hand out Snake Dogs to people in need, etc.

Anyway, I'm gettin crazy here. Better slow down. After a late morning snack at Trails, we came home and started the chill sesh that has been going strong ever since. Pablo's reunion with Chili and Beans was heartwarming and heartbreaking. So sweet. The dogs make him happier than hell. When we were walking to the CHLA elevator shaft, he said excitedly, 'Papa, I'm so glad to be going home. I've been here a long time, and I want to play with Beans!' Pablo is growing up and becoming a clear, concise communicator (concise is not in my genes), and this hospital and medical business is, in one major way, a great motivator and backdrop for this. One of the many positive things to draw from Pablo spending this key developmental phase of his life in the cancer ward.

I have a surprise for Pablo (and you) coming to the house later this afternoon. A piece of siiiiiiick art being delivered by the artist himself. More later.

Here's photo proof of our shenanigans over the past 24 hours:

At a nurses's computer station on 4 West last night. Maybe he was doing his own charts? The computer cart is called a C.O.W.—no idea what the letters stand for, but that's what they call 'em. (If you are a CHLA lawyer or government medical records compliance officer looking at the Pablog, don't worry—the computer wasn't on when he was sitting there.)

The Castelaz boyz casting long shadows in Peter and Brie's driveway, one of us wearing a bear mask.

Peter and Pablo hammering the Native American drum. That thing was l o u d !

Here's P at a different kinda keyboard—Peter's Steinway. Look at that form! Makes me think we should get him into piano lessons.

Don't Mess With The Zofran

Mommy's on her in-town hotel vacation with her New Orleans homegirls. Pablo and I are doing a little urban camping of our own over here in bed B, room 435. We just crashed the scene in the teen lounge on the fifth floor. A bad a** game of Rock Em Sock Em was in progress when we got ejected from le lounge. Turns out they're serious about the teen part. So we made our way back to the land where we belong: the fourth floor kid lounge. Pablo opted out of the board game we started when the play kitchen caught his eye. Was fine by me - he made me a glass of faux-mergen-C and a croissant.

What you see in this pic is what we're up to at the moment: P's getting his Zofran meds. You can see this tube of anti-nausea magic in the top machine in the background. Zofran allows Pablo to eat (and retain) meals in peace. That's why we don't mess with the Zofran.

We're off to the deluxe CHLA basement cafe-teria. Now, sing the following two words - dinner time - to the tune of the timeless MC Hammer classic 'Hammer Time.' It's in that fun, Reagan-era baggy pant spirit that P and I will descend in the elevator car to the gastro goodness that awaits.

Happy Pablo

It's late, I'm fried and I have something to say. Hope I can type fast and get to sleep. What I have to say is this: Pablo is having the time of his life this week. Yes, he has been in the hospital all week. And he is loving every minute of it. Jo Ann spends 90% more time there than I do—cos I'm working during the day—and she has noticed a huge shift in Pablo's energy with this stay. I mean, he's never really had a hard time being at CHLA. But this time, he's acting the way kids act in hotels—hog wild, all the time. I told you yesterday that he wanted to go to the play room all by himself. That's NEVER happened before! When I'm at CHLA, he's like, chasing me down the hallway. This morning, P and Jo Ann met me in the front lobby—I was dropping off their coffee and juice—and P was a wild man, jumping all over me, smiling, being very gregarious. I love this. That's what I had to say before shutting my eyes. I love this. We love this.

A happy, adventurous Pablo is a happy Pablo. And that's all we can ask for today.

Afternoon Delight

This afternoon, Polly took Pablo to a movie screening in the teen lounge on the fifth floor. The feature attraction was the new Disney flick 'Hotel For Dogs.' One of the stars of the film was on hand to hang with the kids and sign posters. 'His name was Bruce in the movie, but Jacob in real life,' Pablo informed us at dinner. 'He got arrested so many times, and the puppies were taken to the pound.' Access Hollywood was along to document Jacob in real life's good deed. Jo Ann didn't want Pablo getting into the camera's view. 'This isn't his 15 minutes,' she said. 'That is going to come much later in his life.' I agree. But if he had gotten on the show, I would've found it funny, in a prank-y kinda way.

We have had our Zankou chicken dinner in the 4 West conference room. Pablo's pre-chemo meds start in an hour or two. The main event starts around 1 a.m. We're hoping for another smooth night.

Pablo is happy, bouncing around, telling us the details of his afternoon matinee. Life is good.

First Night Alright

The first dose of chemo went into Pablo's little body with no probs. He and Jo Ann had a great night's sleep at CHLA. In fact, our nurse Danica (who has become family to us) changed Pablo's diaper in the middle of the night and let Jo Ann sleep. Huge, cos waking up in the middle of the night to change to dipe is, like, no one's idea of fun.

This morning, Pablo informed mommy that he wanted to walk down the hall to the play room—by himself. He made it part of the way, and came back to the room for a maternal escort. Once they made it into the play room, he played by himself and Jo Ann returned to our luxurious hotelspital suite to hang with Hrishi who'd arrived bright and early with coffee.

In the Keeping My Sanity Through Exercise Department: this morning at 7, I rode up Angeles Crest with my friend Peter Robbins. We became friends a few months ago through Francine. His daughter, a junior at South Pasadena High, went through leukemia treatment at CHLA a few years ago. The leukemia kids are on 4 East—the other end of the hallway from soft tumor kids like Pablo. It's been incredibly cool to have met Peter. Riding a bike brings about great convo to begin with. To share the road with a guy who has not only been through cancer treatment, but has been through it on the same floor of the same hospital—that is priceless. We laugh a lot. We don't have to get too heavy about it all, cos we know precisely what the other guy's talking about. Even though we climbed 4,000 feet and spent two hours on the road, for me the real workout was the chat.

The eagle has landed

...and the eagle likes choco donuts. Good evening from room 435B at CHLA.

CHLAcking In Today

We are checking in today for the four night / five day chemo cruise. The chemo will start flowing late tonight. He is feeling/looking/actin great today. In fact, he's in full acrobat/clown mode and while I was home this morning, ate one things after another. Like, he asked for some corn flakes (hold the milk, please). And then he asked for a fro yo. As soon as that was done, he opened the fridge and scanned for his next course, choosing strawberries. P kind of reminds me of the mouse in the book 'Give A Mouse A Cookie.'

Jo Ann and I discussed this morning an option in the chemo plan. We're going to speak to Dr M about it before getting into it here. The issue is whether to add back one of the chemo rounds that was taken out of our plan. It's our idea that we're going to present to Dr M.

On a general note, it's 79 degrees in LA. I am someone who likes four seasons, so this is, at the very least, an odd occurrence that makes me wonder if we are all headed down the waterfall at the beginning of 'Land Of The Lost.' If we are, I hope Cha-ka still has one of those giant strawberries. Pablo's gonna get hungry with all that white water rafting and communicating via reflective necklaces. Plus, I'd love to hang with a few Sleestacks. Those dudes were cool.

Prayers Needed

Dear Family and Friends,

I have had such an emotional week. I know doing that cleanse didn't help because I was hungry, but just LIFE has been difficult for me this week. I have been scouring for information regarding Pablo's treatment, trying to find out if it's "normal" for his counts to take this long to recover... and what does that mean in the grand scheme of things? I'm in such a positive, optimistic and peaceful place with Pablo's journey right now, but something is digging at me and I can't identify it. I'm constantly questioning whether or not what I am doing it correct. Do I know everything I need to know? Can he ride the train at Griffith Park? Can we have a friend over for a couple of hours? Can we go to the gelato shop? Obviously, Pablo's health and safety are our primary concern, but the poor kid has been under house arrest for MONTHS now and there are days when he appears downright depressed. It's the second most difficult thing to witness (first is seeing him in any kind of physical pain). Anyway. I am really trying to focus on all of the things that I am grateful for at the moment. And that list is crazy long, so I won't bore you.

As most of you know, I have been praying a lot since all of this started back in May. Like I've posted before - I've never stopped praying, I just stopped practicing in an organized way and questioned a lot. Now, I just pray... like crazy... for my baby. For my new friends' babies. For total strangers' babies that are currently being treated or have completed treatment but are still at risk. I just do it and it feels good.

I know a lot of you that read this blog are incredibly spiritual and everyone has their own practice. I'm begging all of you to put a special little boy at the top of your list alongside Pablo (that I know you continue to hold). His name is Luke and we met him on 4 West at CHLA. He is beautiful and was diagnosed with high risk Neuroblastoma a few months ago. His family is strong and courageous and inspiring and right now, in need of prayers.

I know I don't contribute to the blog much, but I am forever grateful to all of you for your support and love and thoughts and prayers and meditations and positive vibes that are constantly coming our way. We feel it - it gets us through each and every day.

love,
Jo Ann

Pabloverheard

Jo ann just emailed me the transcription of a statement Pablo made to Polly. I feel compelled to share it. Just when we're not sure what P's thinking about losing his hair, and gaining a port, etc, he tells us. In this mini-story, Pablo is describing his relationship with Beans, our 18-month-old Labradoodle:

"When I was smaller, before I had my port and my bump and when I had curly hair, Beans used to chase me and tackle me and eat my curly hair."

Sunday Reprise+Monday Surprise

Pablo's blood numbers are looking great today. But a key blood marker (ANC) is still a little low Jo Ann and P are on the way back to CHLA for a special shot that will help boost the ANC. We'll check into CHLA for chemo tomorrow.

On an entirely different note—yesterday's funday playdate—Cassiel's mom, Tracy Blum, sent us some pics from yesterday's nino y nino festivities, along with the note below. We were both moved by Tracy's email, so Jo Ann suggested that I post the whole thing:

ice cream, legos, long chats, coffee, giggles, tears, there are some
people that you meet that instantly feel like family.
that was what yesterday felt like...
We love you guys...good luck this week..

And here's the photo evidence:

In the car with their dolls....

At Pazzo Gelato with the grand prize....

Sunday Funday

Cassiel and Tracy are over for a playdate. Here's P and Cass playin in le playroom.

Gelato + Motocicletta

It is a beautiful day today. The kind of day people fantasize about when they have fantastical visions of Los Angeles. After I got home from my 100km bicicletta ride, Jo Ann and Pablo were ready to best outta the house. So we went out for an hour of fun and fresh air in our hood. Tonight, Polly's coming over to hang with P for a while while the we take Grady to South Pasadena for our friend Gigi Scully's art opening. It's shaping up to be a normal day. Love it.

First stop: Pazzo Gelato on Sunset Boulevard

Second stop: the yellow Harley-Davidson motocicletta ride at the shoe shop next to Pazzo.

Lessons From The Little Ones

The first work week of the year is coming to a close. Pablo's been hard at work this week by eating lots of protein, stayin out of harm's way, and resting. This is important work when your stock in trade is the creation of platelets, hemoglobin and white blood cells.

We are hoping that his blood numbers will be in line for chemo on Monday. We have three in-patient chemo runs left. Can't wait to tell Pablo there are only two left, then one, then none. As I am tapping out these sentences, I am weeping. Actually, not figuratively. At some point, the sadness, powerlessness and f*#*ing anger over all this stop processing. And sometimes, writing a sentence about how cool it's going to be to tell your little boy that the chemicals and needles and masks and bald head and staying away from other kids and play and the outside world just...moves...that cement emo block right out of the way. As with so many things in life, it happens when you least expect it.

Our family is feeling good going into this weekend. Jo Ann is on day five of her cleanse. I'm on day five of being back on the serious nutrition plan that helped me lose 50 pounds. Grady is getting killer grades in school. And Pablo, like the little ones in everyone's lives, is laying out the lessons.

Will check in Saturday after my ride.

Happy+Sad+In Between

This morning, Pablo woke me up with his usual statement. He popped his head up from his pillow, and said, 'Papa, I'm not tired anymore. Do you want to go upstairs with me and do something?' Just like that, he jump started my day. How can you go wrong with an invitation to 'do something' before 8 a.m.?

We got out of bed, climbed the stairs and looked for that special something. Pablo knew exactly what he wanted to do: a game of Enchanted Forest. I have to admit, it's the only game in his collection I don't like to play. In fact, in all the times I've played it, I have no clue what the rules are, or what the objective is. But I dove in enthusiastically, eating my brek in between rolls of the dice. It was a pivotal game for me: my little boy taught me how to play the game! In his own words, he explained the objective, and showed me how to strategize. Believe me, I've learned innumerable lessons from Pablo since the day he was born. To receive a gaming lesson from Pablo is a whole new thing. The sweetness of the moment was not lost on either of us. He could see my amazement. After he showed me a few tricks, I grabbed him and held him in my arms. And then he proceeded to kick my a**! He is a great player. And his patter during the game is off-the-rack comedy.

When I got home from work, Polly told me that Pablo was quiet, almost maudlin, for most of the day. I could see it the minute I saw him. Polly remarked that he was allowed to have feelings, like the rest of us. True. Like Pablo's gaming instruction skills, it's just new. Set against the backdrop of the treatment and the constant pressure, these moments are magnified in their happiness and sadness and in-between-ness. What made this late afternoon moment poignant is that also I'd been maudlin all day. Strange how that works out between a father and a son.

When people say to make every moment count, this is what they're talking about.

Pablo's Good Report Card

We just met with Dr Mascarenhas. Everything in Pabloland is great. His GFR test shows normal kidney function. His physical exam shows that everything in P's body is OK. The blood numbers are rising or normal. Heart is lookin good too. Platelets are a bit low, so this week's in-patient chemo will probably start Monday. One of the long-term effects of chemo on Pablo's bone marrow is a slow platelet recovery. If that's the worst of it, we're stoked.

Speakin of stokedness, Pablo is racing down the hallway screaming my name. Time to go.

Weekend Update

OK, I've been away from the Pablog for a couple of days. Not because I wanted to slack off. Because our Internet service went out on Friday or Saturday. I started the below post yesterday, and didn't finish it. This is the first multi-day post I've ever done, and here it goes....

SUNDAY, 4:17 p.m.: We were busy this weekend. And even though we had a few days in CHLA leading up to new year's eve, it feels like we had enough of a break from work and school to be excited to get back into it today. Grady came home from Mammoth on Friday night. He was stoked to have snowboarded for an entire week. When he came home, he suited up—including helmet and goggles—to show us how he looked out on the slopes. We can't wait to go to the snow as a family. And to enroll Pablo in ski school. I've been thinking a lot about the things we'll do when treatment is over. Standing on this side of January 1, it's an easy thing to do. We don't want to temp fate by buttonholing a date, so we're saying 'end of February.' Saturday morning, our friend Neal Morris arrived from New Orleans. Like, on our doorstep at 7:35 a.m. He took the train here, stayed for about 28 hours, and flew home today. Neal's an adventurer. And one helluva funny dude. A couple years ago, he drove a cheap used car across the Sahara. As in the African desert, not the Las vegas hotel.

Neal and I took a nice bike ride through Silverlake and Los Feliz on Sunday morning. I tried to avoid gnarly hills (a true challenge in our hood) cos Neal is used to riding in paper-flat New Orleans. We met up with the fam and Fred at Mustard Seed and had a yummy brek. Then I dropped Neal at LAX. We both freaked when we saw the line outside his terminal. It was like four blocks long. Lucky for him, the line was for another airline.

One more significant point about Neal: he and his wife Anne have two kids, Henry and Natalia. These kids have grown up with Pablo in the sense that they've spent every Christmas and spring break together since birth. Henry is Pablo's age, and one of his classmates from preschool, a little girl, was diagnosed with bilateral Wilms' Tumor, about six months prior to Pablo. That means that Anne and Neal know two children out of perhaps five or six in the U.S. who have bilateral Wilms' Tumor. Malcolm Gladwell could write a solid story using this fact as a narrative fulcrum.

Sunday afternoon Grady and Pablo mastered all kinds of R2D2 commands. The two funnest commands are Dance Mode (he plays the 'Cantina Theme' and dances) and Darth Vader (he makes a fearful electronic squeal and shivers). As the sun was going down outside, Pablo and I were busting open a box of Batman Legos. We were going to build three Batman vehicles. As I was studying the instructions, P snuck into the kitchen. I had no idea. The next thing I heard was a thump on the the ground. It was Pablo. He was running in stocking feet, with a bag of tortilla chips, and slipped. As his body was making its way to the ground, the right side of his head hit the door jamb. As soon as I heard this, I jumped over the couch (Jo Ann and I have become precision athletes jumping at the faintest sound of trouble) and saw P laying on the ground holding his head. The strange thing was that he wasn't crying. The bump was big, and all the veins in his head were bulged up, shooting toward it. Jo Ann was at the grocery store. Inside I was freaking out. But I didn't let Pablo know that. I just held him. I was concerned about internal bleeding, wondering if this kind of hit to Pablo's head was the sort of thing the doctors warned us about. In the end, an ice compress and some paternal snuggling was the fix. With a big ice pack on the side of his head, Pablo fell asleep for an hour. He was fine when he woke up. Guess he could've used Grady's snowboarding helmet on that chip run.

Monday, 7:23 a.m.: Another GFR test this morning. This is the nuke med test that determines the functionality of Pablo's remaining kidney. We meet with Dr M tomorrow morning—he will let us know the result of the GFR, and we'll ask him as many questions as we can think of. Typically, Jo Ann asks all the questions and I sit quietly and listen to her and Dr M go back and forth. I always want to come up with a good Q or two, but Jo Ann is so good at this form of advocacy, my best bet is observation.

The most important fact I need to relay is that Pablo is doing very very very well. He's a constant ball of energy, buzzing from one end of the house to the other. Telling jokes, typing on any computer or phone he can get his hands on. He has emailed or texted a dozen people from Jo Ann's iPhone. The message? Looks like this:

jhfdg'aodirgu arhg82094t8qwertyuiop.

The 'qwertyuiop' part is his signature. He loves it.

Fun+Love From Portland On The First Day Of '09

Happy 2009!

We started the year out by, um, doing nothing all day yesterday. THAT felt great. 'Nothing' included Jo Ann driving us to In N Out Burger for an early lunch. As a special treat, Pablo got to sit in the back seat with a seatbelt strapped across his body, and I sat next to him. We played with bearded and sworded Lego guys. Jo Ann and Pablo told me stories about things that happened the day before when I wasn't with them. We laughed our arses off. It was fun. At some point on new year's day, Pablo counted to '1,000. No, 1,010.' We laughed our arses off at that one too.

At around 4:30 p.m. our friends Katy and Jeff Jorgensen and their charismatic and cute kids Chase and Sophie came over to hang. They live in Portland, OR, and were in SD and OC for a short trip. They extended their trip a day to come and hang with us. We're glad they did, cos within in 30 seconds Pablo, Chase and Sophie were playing up a storm. Pablo NEEDED that interaction with other sub-five-foot people. While that crew was playing and eating pizza under Polly's supervision, the parents snuck out to dinner at Dusty's on Sunset. We got a cozy corner booth, and enjoyed great convo about lifestuff over great food. Dusty's is one of the few great rooms in Silverlake where you can converse. Most places (insert cranky old man alert here) are too loud.

Katy is a dear friend of mine. She and Jo Ann have chatted on the phone a few times. And last night was the first time we'd met her hubby Jeff and her precious, hilarious kids. The reason I'm writing this detail is cos this family, from waaaaaay up in Portland, have been in almost daily contact with us since Pablo's journey started on May 18. Sophie and Chase have gotten to know Pablo through this blog. They have sent him gifts and included their well wishes in Katy's emails or blog comments or phone messages. And last night, on the rails of the simple human act of love, they arrived at our doorstep and put faces with those faraway names. The next time I wanna act jaded and outside—like sweet stuff only happens in movies—I am going to remember January 1, 2009 at our house.

When we returned from dinner, Chase and Fred were scrapping it out over bball stats. Pablo was in the shower downstairs. Sophie was waiting patiently (not so patiently) for her mommy to walk in the door. When she did, Sophie flew to her.

Of course, this scene would be, like, um, 100% better if the boy whose name adorns this blog wasn't going through cancer treatment. But he is, and that's that. Every time I think 'cancer sucks' (and it does), I am reminded of all the GOOOOOOOOOOD things that have sprung from this experience in our lives. Like Katy+Jeff+Chase+Sophie coming over and changing our scene for the better last night.

Would I give up all this fairy dust and happy-go-lucky hangs with friends from far away if a fairy's wand could make all the treatment and disease go away? Yes! But in real life, Pablo is in treatment. And although Dr Mascarenhas is one of the loveliest men we have ever met, and we love him with all our hearts, he is not a wand-yielding fairy. And that chemo is definitely not fairy dust. And, since this is our reality, Jo Ann and I try very hard to see the good, even when we are on one another's last nerve. So far, it's not been that hard to find a lot of good everywhere we turn.

So, here we are, grateful and conscious at the start of another year. A year we hope will bring us good luck with Pablo's health. A year we hope will lead us back to the path of life we were on prior to May 17 of last year. But better. With all of the love and clarity we've exercised with all of you.