We Are Goth Ready

Halloween is coming, and Pablo has noticed that a lot of houses are 'getting ready for Halloween.' Yesterday afternoon, he and Jo Ann put on masks (to protect P's lungs, not to scare) and drove the 'hood to observe the ghosts 'n goblins adorning our neighbors' lawns. Pablo got to sit in the front seat, which was a treat in itself.

To keep the spirit flowing, last night, while Jo Ann and I were out at a breaking-of-the-fast dinner, Polly guided Grady and Pablo in a spooktastic front yard decoration party. Now our crib is all Gothed up. I was scared to walk in the front door when we got home. This weekend, I might wire up a sound system in the shrubs...and put Bauhaus 'Swing The Heartache' on repeat. That'd really punch up the scene.

Wait—you're tellin' me the webs in our trees aren't REAL?

Pablo in his white Creepers—inspired by his big bro

Frightmaster P

Don't Push Me Cos I'm Close To The Edge

Our lives aren't normal anymore, you know that.

This morning, not normal reached a new height when we opened an envelope that Simon Baillie from La Rocca dropped off Tuesday afternoon. He brought it over with a delicious chocolate dessert made by his lovely chef wife, Patrizia, indicating that the dessert was from them and the letter was from Ireland. This did not seem unusual as La Rocca are an Irish band and only two members live here in LA. After dinner on Tuesday, we went straight for the dessert, and forgot to open the letter. In fact, I didn't even know the letter was there!

So...late Tuesday evening, at the La Rocca / Eulogies / Ed Laurie Dangerbird takeover at Hotel Cafe, I found myself in the dressing room with the Baillie brothers, Bjorn and Simon, after their stunning set. They practically wanted me to drive home to open the letter. They would not reveal what was inside the envelope, and they could not contain their excitement about it. I got home at 11 p.m., and could not find the mysterious envelope.

This morning, Jo Ann handed it to me. I opened it. Inside was this letter, from U2's guitarist The Edge. I was stunned from the moment I saw his name at the top of the paper. Unreal.

Back in the '80s, Jo Ann knew it was her destiny to walk down the aisle with him (as Bono sang 'Trip Through Your Wires' from a nave on the altar). Back in New Orleans, she spent an evening with him and his three band mates (and 100 fans) on the Riverboat President. The date was November 2, 1982 to be exact. U2 were on the 'Boy' tour at that time. She didn't get the fever for The Edge until later that decade when she moved to LA and became obsessed, along with her roommates, Brian and Nadine, with the film 'Rattle and Hum.' She has often described it as the soundtrack to their first year in LA—the year: 1989. The romance part didn't work out. But, 25 years later, her son got the letter you see below. (Click on it to make it bigger.)




We tried to put all the puzzle pieces together on how this letter arrived in our home. Simon explained that his sister, an interior designer in Dublin, works with The Edge and Bono. Knowing that The Edge went through a similar experience back in 2005—his daughter Sian was diagnosed with Leukemia)—Ms. Baillie told him of Pablo's illness and he gave her this note.

WOW, really... WOW!

PABLO'S HOME!!!!

I asked Polly to take a pic of Pablo that would say 'I'm hoooooooooooooome!' When this picture came through, I thought it was perfect: he's in his new play room, with the Sorry! board at his feet, pirate weapons in each hand, and a toothy scowl on his grill.

Aside from a few bouts of vomiting yesterday and today, it's been smooth sailing since we got home. Pablo took a shower last night, jumped around the entire house, got reacquainted with his toys, and knocked out a few episodes of 'Max And Ruby' on Tivo. This makes us happy for the all the obvious reasons—plus, it's good training for when he moves into a college dorm.

Freedom Run Monday + Dean's Pablo Pix

I am on my way out the door, so this morning's post is going to be a quick show and tell, using pics that Dean snapped during his weekend stay. We miss him already. He helped get us through the five night stay, and now he's back in Milwaukee.

We are expecting to be discharged from CHLA around 9 a.m. Full details on our freedom run coming later tonight....

Pablo in the 4 West play room.

Grady and Pablo roughhousing in P's bed. I love that they're both wearing medical gloves. P plays with them constantly. What an easy customer.

All the toys in the world (or at least the ones you see on the table) are no competition for the good old styrofoam (polystyrene for you foreign folk) cup.

You'll never meet a kiddie who has more fun with a coupla pillows.

Uncle Dean with Haley the hospital dog. She looks a lot like his dog Jet.

At the end of a long afternoon of play, Pablo and Papa take a siesta.

P Dawgie D.O.G.G.

Every day, a small legion of good souls bring their specially-trained dogs to CHLA to spread a little four-legged love to the kids. Our little warrior P Dawg loves him some canines, as you'll see in the pics below....

Dean and I stayed the night. Pablo hit the rack around 9 p.m., and had a great night of uninterrupted sleep, waking only four times, to screeeeeeeeam 'Papa, I have to peeeee!' (Jo Ann had a different fate on Thursday and Friday nights, with bed wetting and all that other stirring I wrote about yesterday.) I slept in bed with P, and Dean slept in the reclining blue chair next to me. Three Castelaz men all in a row. I hadn't even thought about it until now, but the energy created by our alignment was powerful. Even though I didn't get a particularly restful sleep (the nurses are constantly coming in to check on P and his roommate Daniel), I am not tired. I think it's cos I felt safe and secure recreating between these two tatted up tough guyz.

Tonight is the last night of chemo for this stay. One of the oncology Fellows told Jo Ann that we should be out of CHLA around 9 a.m. Monday. That'd be amazing. We have two full weeks off of chemo after tonight. Pablo's body will be resting and recovering during that time. His white blood cell count will plummet over the next five or six days, and will then start to swing back up, with the help of Amgen's amazing WBC booster Neulasta, which will be injected into Pablo's thigh later this week, here at home. (In addition to this great med product, Amgen also brings us the Tour of California bike race. This year's ToC is in February, and will be Lance Armstrong's comeback debut in the US.)

OK, here's the d.o.g.g. pics:

Pablo with Carmela Soprano. If you look closely, you can see her pink tutu...

...this morning, with Haley...

...sometime this weekend, with Bernie...

...standing tall with Razzie the tallest dog of all...

Candy Land And The Chemo Screamo Demons

¶ Uncle Dean arrived from Milwaukee around 11 a.m., and Pablo's fun Friday kicked into gear. Like, seriously high gear. Intense energy and exuberation are part of the chemo roller coaster. Dean, Jo Ann and I know this from our experience with Scott, who, if he was on the post-chemo upswing, would call us at all hours of the night, and want to talk talk talk. In Pablo's case, while the drip is on, and immediately after, he might be sleepy, irritable, uncomfortable, or any number of other unpleasant things. Thursday night, Pablo woke up in a ball of confusion and angst. Jo Ann described a fire in his eyes that Dean and I saw in Scott many times. It feels like he is looking through you with Godzilla eyes. It is the epitome of feeling like your child might be possessed by some foreign spirit. In Pablo's case, we know the spirit is a necessary evil. This six month course of chemo is the scorched earth / no cancer cell left behind plan. Godzilla eyes are just part of the game.

With children like Pablo, they do the chemo at night, while the patient is asleep. It's a good, efficient idea that allows the child to have physical and emotional freedom during the period of their usual waking hours. The fewer things we change in Pablo's schedule, the better. The fewer things Pablo remembers the better. It's the least we and the docs can do for him to aim toward a normal life.

This nocturnal transmission has a single downside: it sets a backdrop for the mid-night chemo screamos that I described above. There's nothing one can do about this. If the medicine causes Pablo to feel like he's coming apart from the inside, he's going to, a] wake up; b] freak the F out using his voice and his body to exorcise the chemo demon; c] go back to sleep and probably not remember his 'get behind me Satan' moment in the morning. It all sounds so logical and easy when I see it in writing. Somehow, seeing Pablo scream and oscillate wildly during daylight hours is easier to accept than the same happening in the darkest hours of the night. But, again, if this all went down while he was awake, he'd remember it. Since starting treatment, Pablo generally has no memory of stuff that's happened in the night. I hope this can be accurately attributed to sleepiness, and not the start of a traumatic disorder. I have PTSD from the country club lifestyle I grew up in.

Dean and I don't have many memories of childhood, period. It's the gift / curse of Post-Traumatic Stress Disorder. On the good hand, by design, PTSD shields you from some of the gnarliest memories. On the bad hand, I can't remember things like, well, if I ever had a birthday party. Most of my positive memories are from the few photos we have. It's weird. But it makes for a light load when the movers come.

Jo Ann and I are conscious of the PTSD stuff. We will have to address it with ourselves and Grady as well. But we aren't there yet. We have to get to the post- part before we can confront that.

No matter how level-headed I sound, I was hoping to spare our sons the experience of it, yknow? In accepting that Pablo won't be starting kindergarten as planned, I have begun to accept that there are many off-script things that are going to go down in his life. Grady is old enough to comprehend what's going on, and has plenty of outlets for his confusion or anger about his little brother's scene. Like any parent, I had hoped to give Pablo the kind of life I didn't have. I wanted him to feel safe and protected. I'm not talking about the the basic plan—I mean the kind of nurturing that would allow him to have balanced self esteem and not walk around battling negative self talk for the rest of his life. For a guy like me, that would be my greatest achievement in life.

I keep thinking that we didn't even get Pablo vaccinated cos we didn't want to had hoped to shield him from any sort of potential harm. 11 days of radiation and nine months of chemo kind of negates all that organic human body stuff. But I love that Jo Ann was so passionate about keeping the American cheese pediatric practices away from Pablo. I stand by her on it. And I make the juxtaposition to illustrate one of the great ironies of Pablo's cancer treatment.

¶ During the day, Pablo is a ringleader whose platform of operation is an adjustable hospital bed. Like the old school characters in my dad's old corner tavern in Milwaukee, Pablo is all about playin' some games to pass the time. He doesn't view it as passing the time, he just sees Room 438, Bed A as this week's location for kicking everybody's a**es in Candy Land, Uno and Sorry!. Like his big bro Grady, the kid is a fearless, ruthless competitor. And now that he has some verbal skillz, he lays a sassy Howard Cossell play-by-play over the board game beatings. It's really something to watch him operate.

Friday evening, after our funny and yummy Malo taco 'n chip dinner, I walked Tony and Joanna down to the lobby. When we left Pablo's room, he was awake, putting on his pajamas, jumping all over the place. When I came back a few minutes later Pablo was laying in bed, sweetly and soundly sleeping. He told Jo Ann and Dean that he was tired, and—remarkable for a five-year-old—laid down on his side, closed his eyes, and fell out. The lights were still on. His roommate's TV was blasting WWF wrestling. And there was Pablo asleep, with his Mommy, Papa and uncle Dean looking on. His eyes were about one-third open, and Jo Ann asked me to close them. I did.

As we were sitting in the room quietly chatting, our nurse, Lizelle, came in with a fat, juicy I.V. drip bag—the first chemo drug for the night. You can always identify the chemo stuff from the florescent WARNING stickers on the bag and tube—the kind of label you see on the side of a truck carrying a tank of liquid nitrogen. The nurse has to wear a special gown, a mask and gloves when administering the stuff. This medicine can burn the skin on contact. In fact, when Pablo wet the bed Wednesday and Thursday night, Jo Ann had to immediately give him a towel bath. Even Pablo's urine is toxic in the hours after a treatment.

An hour into the treatment, Dean and I went home. Jo Ann was ready to hit the hay, and so were we. When we go home, we watched Real Time with Bill Maher, which must be one of the greatest shows ever to be transmitted into the homes of our fine nation. Alec Baldwin was one of the panel guests. I could watch him eat breakfast and find it fascinating. Anyway, for 30 minutes Dean and I laughed and laughed and laughed. We needed that.

It is not lost on me that in the time we have been a cancer family, the world has changed, probably forever. I am not a 'sky is falling' type of person who recites the day's newspaper headlines and starts things on fire. But what I am saying is that the level of national and international fear and tension and uncertainty brought on by the financial gymnastics of late comes close—close—to that special feeling of 'FFFFF######*******KKKKK!!!!' that Jo Ann and I have been feeling since May 17. Know what I mean?

Does misery love company? In my case, no. Absolutely not. Well, maybe a little. I was happy when everyone else was happy, or at least comfortably numb. It was nice to, say, walk out of the hospital and get a shot of the real world—a world that included smiles and laughter (does anyone remember laughter?). Now, everyone's walking around with a frown. Over the past two weeks, it feels a little crowded in the pity party aisle at the grocery store. Being in the cancer ward at CHLA is like being on retreat.

One thing's for sure about the world today—the comedy's better. And laughter is a medicine that works every time.

Uncle Dean Is Here!

Pablo and uncle Dean throwin' the horns at CHLA. Tony and Joanna are on the way to room 438 with Malo tacos and chips! We're ready for a Friday night party.

Everything's going well today. Chemo treatment number three starts later tonight. More picks and tricks later on....

Ready For Action

Polly took this pic of Pablo last night at the hospital. This is P with his new 'ready for action' lion (Jo Ann coined the term when she met that lion, and Pablo loved it so much, he can't stop saying it.) He got RFA lion at Target on Tuesday, with a Target gift card. The gift card was a radiation finish line gift from Arlene, our CHLA Child Life friend.

If you've been to our house, you know that P looooooooves him some plastic action figures from Target—animals, knights, gnomes. If you've been in our house in the middle of the night, you know that I scream and curse realllly loud when I step on one (or two) of those things. Just look at the 'ready for action' paw on that thing!

Puff Daddy Pablo

Jo Ann and Pablo spent the night in room 438, bed A. After two bags of hydrating fluid stuff, the nurses bolted the chemo syringes into the machine, and began pumping Pablo with a series of three different chemo drugs.

At 11 p.m., Pablo was started on the anti-nausea medication Zofran. Then the real party began, starting with an hour of Carboplatin. An hour of Etopocide followed. Within the first few minutes, Pablo developed an allergic reaction. First, it showed as a cough; within minutes, his face swelled. His tummy hurt, and his ears and head got red. Within a couple of minutes, Pablo went from looking like a gaunt, skinhead Ian MacKaye to a puffy-faced '70s rocker, say, John Bonham on the '78 tour. In classic rock terms, he went from the debut album to the fourth album in five minutes. Unlike the dudes from Grand Funk Railroad or Motley Crue, there was an easy fix for puff daddy Pablo.

The nurse turned off the Etopocide immediately. The oncology Fellow was called in, and ordered Benedryl. After an hour, P's swelling went down, and the Etopocide was restarted, at a slower three-hour rate. As soon as that party ended, they added in a chaser of Cytoxin.

He's on a saline drip all day today, to keep his hydration in check. Chemo will start again at 10 or 11p.m. Pablo can (and does) eat anything he wants. So far today, he's had half of his red apple, half of my green apple (he eats around the whole thing, like a dinosaur eating a planet), turkey and broccoli and a tiny bit of brownie, compliments of our lunch angel, Dorrie. As I write this, he's playing with the toes on his right foot, and watching a cartoon on TV.

This is a lot easier than last time we were in CHLA. No gut pains, no drains drilled into his skin, no catheters hangin off his junk. The mood in the room is light and bright. Hell, we even have the less-than-desireable hallway side of the room, and we're still stoked. Most of all, Pablo's smiling face puts us all in the right place.

At 2:45 p.m., I am going on a hard hat tour (I just love saying that) of the new CHLA hospital, which is being built next door. Polly's coming in around that same time, and Jo Ann will head home to shower and chillax. At 5:30, we're gonna head up to Peter and Brie's to watch the VP debate. Everyone keeps telling us that laughter is the best medicine, and there will be no better comedic drama this year. Maybe Sarah Palin will invite Bob and Doug McKenzie to take the stage with her? You know, to fully flesh out the Queen of the Great White North bit for the Repulican cheerleaders, and to divert the nation's attention away from her PTA-sized political pallette?

Radioactive Pablo

The nuclear kidney test didn't go down on Tuesday. Turns out the radioactive elixir that is pumped into the subject's body is in short supply nationally. We were bumped to 7:30 a.m. today.

When we arrived this morning, the nurses in the nuclear medicine department were ready for us. Walking into that lab, I felt like I was back at Milwaukee Technical High School. Or, in Prince's Paisley Park Studios, circa 1987. The gear up in there is first gen for sure—big, chunky, cool a** stuff with bolt-on meters, finger-roll dials and futuristic, sci-fi-inspired logos. This stuff predates vertically integrated electronics companies. Back in the day, the company whose name was on the gear was probably an engineering concern that used ready-made parts from tons of other vendors in their products. Same goes on today, but companies like GE Medical Systems, Apple and don't let the seams (or other people's logos) show in their slick designs.

Anyway, we had fun looking at all the medigear in there. Like this Tie Fighter style camera.

Look at that thing—I could take a whole album of that! The flip side is, to a little kid, this camera could appear menacing. Lucky for us, Pablo is a strong warrior. Although he doesn't carry a big stick, he does roll hard with another weapon of choice: his 'cheap' yellow dish washing glove (he uses it as a toy/prop/slapping device). With that darn glove, he jumped and ran his way through the hospital today. Our many CHLA doctor, nurse and staff friends who've come to know P very well, could not believe what they saw. Everyone who ran into us got a giant smile across their face, and noted how great Pablo looked.

There ain't much we can change in the cancer playbook. One thing we can do is to receive love and light from our CHLA posse, dozens of people who are around ill children for a living. When they put their hands up and tell us how surprised they are to see Pablo kicking out the jams in front of the Giraffe Elevators, in the hospital atrium, or in the culinary temple known as the CHLA Cafeteria, we b e l i e v e them. And we use that love and light as fuel for the rest of our day.

Back on October 1 2008.... Pablo's GFR test went fine. They injected the radio-juice, drew blood and had Pablo lay on a giant metal platform with some sort of nuclear device underneath (see below).

For five minutes, the machine snapped images of Pablo's body, which appeared as a mass of white stipples on the cathode ray tube screen (see below). His kidney is the glowing white mass on the left side. If he'd had this test prior to September 3 (when he had two kidneys), there would be twin orbs glowing on the screen.


I am a fan of photographic mishaps. Some of my fave shots are the accidents in between. It's easy to achieve this with the iPhone—the thing is sensitive to movement, like a photographic seismograph.

The photo below is one such accident that I want to share. The blurred vision of Pablo's body with the glow orb chem trail that we know is his kidney, the repeated word 'acquiring'—it looks like an album cover for a French avant-electro band from 1980 that only 300 people knew about.

Or something.
We are set to check in at CHLA for the the five or six day chemo vacation. In fact, we are already admitted. Problem is, 4 West didn't have any open beds this morning. So, we are waiting at home. Lucky for us we live five minutes away and we can jet over there when we get the call.

My next post will come to you from our soon-to-be awarded room at CHLA.