Thursday, July 31, 2008
We believe this is part of our path. 60 seconds after Dr. Austin told us it was cancer in the ER, Jo Ann said those exact words to me. We believe in a power greater than ourselves. Some people call that power God, some call it It, some call it the Universe. I don't care if you call it Al. Well, actually, I do, but you know what I mean.... In my life, and Jo Ann in hers, there have been many permutations of spirituality. Where we landed after lots of ironic stances against the Man is that we don't get to play director, actor, lighting technician and camera man. We get to play one of those. And we get to play the cards as they lay. We get to wake up in the morning and hit the rack at night and do the best we can in between.
One of my spiritual teachers was a gentle, wonderful man named Bob Timmins. Sometimes when I went to sit with him, and I was in a terrible way, he'd ask me, 'What if this is as good as it gets?' Read that again–s l o w l y. It stops me dead in my tracks every time. When that question brought comfort and calm to my nutty mind and my jagged heart, I knew I was in the right place with the right man. The Talking Heads song 'Once In A Lifetime' touches on this theme. Bob passed away in March. The energy I felt and all our mutual friends felt when he passed was indescribable. I loved him. He really knew me, I really knew him. I spent a lot of time with Bob, and always wanted to be with him more. Today, as a father and a husband, I see the hundreds of hours I spent with him as boot camp for my current life. Now I want to spend more time with Pablo, make the days stretch so we have more time to read and mess around.
While Papa ruminates over deep thoughts, Pablo is a kid being a kid. He is a kid with a couple of tumors in his belly. One of them is quite large, and protrudes from his side like a miniature Nerf football. The other is smaller, but by no means minute. Both are serious, although hanging with P for an afternoon leaves anybody wondering 'Where's the sick kid?'
When I review the game tapes in my mind, Pablo hasn't missed a beat. He does not compute on the idea that he should be or could be doing something else with himself. He doesn't say 'I wish I didn't have cancer.' Recently, Pablo has started to verbalize his desire for the tumors to leave his body. The other day, he said to Jo Ann, 'I want my bump to go away and never come back.' Sounds like a postulate more than a complaint.
Pablo has found efficiencies in the dull patterns of cancer treatment. Going to hospital, opening mouth, saying 'ahhhhh' before the doctor asks, turning his head to have this ear checked, then that ear checked, getting all his glands checked every Tuesday have all become as normal to him as going to Silverlake Park used to be. Those things and more. He is patient. There is an instinct at work in him. He is aware that Dr. Mascarenhas is helping him. He watches as his port is accessed. He watches consciously as the chemo vials are pumped into his port. He asks for his anti-nausea pills. And when he vomits, he often states, soberly and matter-of-factly, 'I feel better now.' Then he returns to what he was doing, even if it's eating.
Is Pablo's world view wide enough at his young age to describe his experience in these terms? We will only know when he is old enough to report on this era of his life. In my view, Pablo is exercising free will choice and surrender and harmonious action in every single hour of his life. And those actions, we believe, are credits that transfer into all areas and eras of life. We can't wait to see his person and personality blossom.
Most five-year-old children are not confronted with this kind of stuff. What flavor of ice cream, what movie to see on Friday night, who should I have a play date with tomorrow–those are the topics of a typical kindergardener. The rails of Pablo's life were that narrow and that smooth prior to 17 May 2008. That night, in the bath–the very tub where he and I bathed tonight–Pablo's life changed. He hit a switchyard. It wasn't on the train schedule. The trainspotters didn't see it. But, as my eyes caught sight of that anomoly in his abdomen, his life changed. So it was part of the plan. By being with my son and seeing a sudden change in his body, many things happened. One, we were able to get him help immediately. Two, I was able to heal the neglect and abandomnent I'd survived in my childhood, just by being there with him. In that moment, in a tub filled with pirates, dinosaurs, a pirate ship and bubbles, our lives changed. The definition of what is shifted, never revert to what it once was. A good thing, because, as I said earlier, we believe this is part of our path, not a bent fender on the side of the road.
We marvel at Pablo's simple, quiet serenity. Jo Ann, Grady, Polly, Francine and I. We look at him, hoping his eyes will connect with ours. We are hoping his eyes will say 'It's OK. I'm OK.' They rarely do. That look would make us feel better. He knows better than to worry about how we feel. He is inside himself, tending to the only thing a five-year-old ought to tend to: himself. He is having his own Experience. It's really something to witness.
It took me until August 28 2001 to start on that path. I was 28, and that was the day I called Bob. Looking back, I had a loooooong way to go from that date to even consider what I've written above. All the things I have learned about life since that day have found a purpose in Pablo. Found a launching point in his war with cancer. It's enough to think that, as a parent, one can do a better job than one's parents. The simple, beautiful fact is, Pablo is a better specimen of humankind that I. As is Grady. They are both gifts in our lives, opening our spiritual scope just by breezing, and at times, struggling, through their expanding lives.
Thinking back to Bob's oft-posed question, if this is as good as it gets–the cancer, the canceled summer holidays, the hours of bike riding I haven't done this summer, the sleepless nights, watching my wife cry herself to sleep–I'm the happiest guy I know. A conscious life is a life worth living. And seeing Grady and Pablo's world view widen in front of our eyes is inspiring.
Wednesday, July 30, 2008
Here's something crazy we learned yesterday: the hospital is on rollers. So when the earth started shaking, we didn't feel a violent rip like most people did. We felt a tripped-out summertime roll. And the quake felt like it lasted for looooonnnnng time–maybe a full minute. Long enough for Jo Ann and the nurses and I to comment on what was happening. It felt like we were in a giant train car that was going over some rough tracks. It also felt like being the compactor from Star Wars....
In the end, we picked up Pablo, and stood in the doorway with one of the CT techs. Very uneventful way to follow up a REAL earthquake!
We are OK, everyone we know is OK, and we don't know anyone in Chino Hills but we offer them our prayers and bestest thoughts. Plus, the singer from the Deftones is named Chino and I love the Deftones.
After all the shakin' we returned to the oncology lab, and met with Dr. M (more on that later today when I have more time to write), and Pablo eventually got his chemo. Yesterday was a Red Devil day. That's the super-charged gnarly red liquid he will get every three weeks. Last time he got it, he was coming off his first major surgery. The combined effect of those two things on Pablo was immense. Roughly speaking, it took him two weeks to get back to normal. He's been back to his normal, kooky, rambunctious self for about three weeks, and we LOVE IT! So we are hoping the Red Devil won't kick his butt too badly this time around. At least he's not dealing with the physical oddity of a surgery as well on this dose of Devil.
Pablo was OK after chemo last night. Sleepy and chilled out, but OK. Jo Ann put him to bed after he fell asleep on the couch. He woke himself up around 8:30, and walked upstairs. He felt like he was going to throw up, so he came up for his little Tupperware container that we use to catch that kind of stuff. Jo Ann and Grady were sitting down to watch 'Beverly Hills Cop' at that very moment (Mommy indoctrinating son into the '80s), so I went down to bed with Pablo.
He waited for my to take a quick shower, playing with his snow cat and Captain Off The Hook. As soon as I laid down next to him, he snuggled into me, closed his eyes and fell out.
THAT is amazing.
OK, gotta run....meeting two friends in Griffith Park for a coupla hours of cycling.
Jo Ann and I have started writing a big post about yesterday's CT scan and an update on our surgery plan. We are hoping to post that before bed tonight.
Sunday, July 27, 2008
After Fred made a giant bowl of handmade pico de gallo and grilled salmon for dinner, he and Jo Ann walked the dogs around the reservoir. Pablo and I made ice cream sandwiches with the oatmeal 'n' Nutella cookies our neighbor Paolo brought us today. It was yummy, and reminded us that Grichie needed his dinner.
So, we set up the dragon bowl, dumped the blue rocks in the bottom, and filled it with water. Once everything was sorted, we tried scooping Grinchie out of his transport container with a spoon. I wanted Pablo to do it. He was excited. With an ear-to-ear grin on his face, he exclaimed, 'I've always wanted a fish!'
Grinchie didn't like the spoon and Pablo didn't like seeing him squirm off of it. I had no idea what to do, but somehow I dumped the transport bowl over and Grinchie landed in his new home. Pablo took a pinch of food and sprinkled it on the surface of the water. We sat and waited for Grinchie to take some nibbles. Pablo freaked. He mimiced Grinchie's biting style. It was such a cool moment.
When Jo Ann and Frad arrived home from their walk, Pablo hurried them to his room to see Grinchie. With that, we were off to bed. Which is where I am headed right now.
Monday morning, Jo Ann and I have an important meeting at CHLA pertaining to Pablo's surgery on August 18. I'll fill you in on it tomorrow.
Saturday, July 26, 2008
Pablo woke me up this morning saying, 'Ice cream for breakfast! Come on!'
Two nights ago, Grady and I went to 31 Flavors to get the kids i-screem. By the time we got home, Pablo was asleep. I popped P's cup in the freezer. For two whole days it sat there. Then, last night, after dinner and dessert at Malo and a bath, Pablo remembered the cup of rainbow sherbet he had in the freezer.
Jo Ann and I tried talking him out of eating ice cream after eating ice cream at Malo and after brushing his teeth. We were in the process of steering him to bed. He insisted, as kids do when it comes to ice cream. I offered what I thought was a great compromise: "You can eat ice cream for brekkie."
"No Papa," was the response from the negotiator on the other side.
So, upstairs we went. He is getting tall, and used his new height to open the freezer door which used to tower out of reach over his head. With the door open, he pointed to the Baskin-Robbins bag nestled in the middle of eight other things. It was evident he'd been there before, stuying the mysterious bag of frozen delight.
We agreed he'd eat just a few bites. He did, and we were off to bed. I laid in bed with him (our jam) and told him stories in the dark. I'd seen four llamas on my bike ride that morning, so I spun those babies into the wildest, most unbelievable story. He either liked it or was being polite to his poor Papa. But he fell asleep all the same.
Wednesday, July 23, 2008
Today would have been Scott's 43rd birthday. It's been on my mind so much that his bday was coming up, and I completely blanked on it all day, until my brother Dean reminded me. I knew something was up today. It's been an intense day. Something powerful was pushing me around all day, and now I know what it was. Had I done something sensible and sane like putting it in my calendar, it might have spoiled the awareness that a unique energy was flowing through me.
Today has been a tough day. Work was intense. From 6 a.m. until I walked in the door at 10:45 p.m., it's been a non-stop banger. I saw Jo Ann and Pablo for about 15 minutes this afternoon. Grady is with Jimmy, so I didn't see him at all. Tomorrow, I will take a walk and breathe and remember my big brother. It didn't happen today. He'd understand if he were here, sitting next to me. Or he'd tell me I'm a big fat selfish jerk. Either way, I'd be happy to see him. So I'm just going to have to accept how today went down, and start fresh in the morning.
Happy birthday, Scott!
This blog is about Scott's nephew, Pablo. So I will get back to the main attraction....
Chemo went very smoothly on Tuesday. He had that gnarly fever Monday, and Polly dropped him at CHLA round 1 or 1:30. He got his usual round of antibiotics (pumped into his chest port), and Jo Ann was taking him home at 7:30. A nice six hour unplanned field trip to the hospital. The good news is that his port was accessed and ready to go for chemo on Tuesday morning. That saves time on chemo days.
Monday night, I slept with Pablo. His fevers came back in cycles, and we knocked them back with liquid strawberry Tylenol. The stuff can be administered every four hours, and it holds the fevers at bay for two to three hours. So there's roughly an hour that is hot for P and emotionally painful for us. In the middle of the night, he was burning up. I popped the electronic thermometer in his mouth. 104.3 degrees. Insane. I woke him up and gave him Tylenol. When his temp is that high, it's impossible for me to go back to sleep. My head gets riled up. And I like to monitor his temp every 10 minutes to be sure the numbers are going south. After about an hour, he was back in the 100 zone, and I was ready to lay my head down. 100-point-anything is OK with me.
Pablo's gotten to the point where we say 'thermometer' while he's sleeping, and he just pops his mouth open and lifts his tongue. He looks like a turtle when he does it. Super cute. And when we wake him for meds, he sits up but doesn't really wake up. Once the liquid is down the gullet, he is back to sleep. Jo Ann and I were talking about this the other day. It's convenient and adorable...but we both wish he didn't know a thing about it, yknow?
Despite the high fevers, Pablo has been on quite a roll. He's back to his old self: loud and proud, rambunctious and rascally, jumping and jiving all over the place. After surgery and the first dose of Red Devil, he was a different kid for almost two weeks. We didn't expect it to go on as long as it did. Speaking for me, I didn't think the dip in his energy would be so drastic. Now we know what to expect after Red Devil. And he gets it this Tuesday...so we are ready....
On the medical front, urine and blood tests are clean. Dr. M is not concerned that the fevers are the result of any infection. This is great news. We accept the idea that the fevers are from the presence of large tumors in his body–tumors that are dying, taking up space rent free inside Pablo's body, space that doesn't belong to them, that will be returned to its rightful owner in just a few weeks.
As usual, it's late for me. Gonna sign off. See you tomorrow.
Tuesday, July 22, 2008
What brought Jo Ann and I to CHLA this morning was a meeting with the development (read: fundraising) team. As part of our work on the Los Feliz/Silverlake development committee, we were invited to a lunch with the architects of the new CHLA hospital. The focus of the lunch (other than really good sandwiches and the same cookies you eat after donating blood) was the interior colors and finishes of the new hospital. It was awesome to see what the new joint is going to look like. The current buildings are old. The newest one was built in the '70s. Based on the hours and days we've spent in those buildings, I can only assume that architects back then borrowed from the space and form of horse barns when considering how to house the ill and their loved ones. The good part of that is the appreciation and excitement we have for the new facility. As we reach out to friends, colleagues and corportations we're friendly with to donate to the Pablove Foundation / CHLA, it's helpful for us to have a vision of where the money will end up.
The consideration and forethought that the planners of the new CHLA have put into the new hospital is astounding. Starting with a huge jump in size–the current building is around 80,000 square feet, while the new spot is something like 480,000 square feet–everything from a full HEPA ventilation system on the entire building to hand-painted child-designed tiles laid in throughout the building to natural light and views in every possible space has been the focus of not only the architects but CHLA family focus groups and staffers. It sounds like we missed the arguments on all that stuff–fine by us!
After the lunch, we checked out actual size models of the new rooms. AMAZING! 85% of the new hospital will be single patient rooms. With flat-panel TVs, a digital video library, and room service you can order on TV. Plus, there'll be internet throughout the building, and family lounges on each floor. Each of those will have books, computers, semi-private banks of sofas and NO TV! They did a study that determined TVs to be a major source of inter- and intrafamily fighting in hospitals. It's true. Plus, those damn communal TVs are invariably tuned to Jerry Springer or Spanish QVC with the volume cranked–not exactly the kinda ambience you want when your child is in an O.R.
This evening, I got home from a string of meetings in Venice at around 8:45. Jo Ann, Grady and Pablo were eating dinner, having returned home from the ER at 7:30. After dinner, I made the boys hot fudge sundaes. They really wanted Baskin-Robbins, but, you know, I was sick of driving. As Pablo began to voice his dismay over this, I told him that I was famous for my hot fudge sundaes, and hadn't he read about it on the web? 'Nooooo, I've never read that.' He didn't believe it. But when I busted out of the mint choco-chip ice cream, we all screamed for ice cream, and he forgot about the crying. As he ate his last McLovin' spoonful, he exclaimed, 'Papa, your sundaes are good!'
Somewhere, in a nearby town, a young man is turning 10. Someday, that young man will go to school, read lots of books, and become a therapist. And during one hour of his long career, he will hear a story from a college student named Pablo–something about 'My dad' ... 'all I wanted was Baskin-Robbins'... 'he told me a fake story about being internet famous for making his own hot fudge sundaes' ... 'i never did see the article' ... 'i have spent 15 years meta-searching and still haven't found it' ... 'he lied.'
Chemo is at 9 a.m. Tuesday. Time for bed.
Monday, July 21, 2008
Anyway, Grady got the nod from St. Francis, and we were over the moon about it. Inside envelope that contained the acceptance letter was a second note inviting him to attend a high school primer over the summer. He is rocking the summer program, and enjoying it. When we got the 'invitation' for the summer program, Grady was understandably bummed. Who wants to go to summer school? But the stuff he's learning is fun for him, and he will know his way around the school's many buildings and large campus on the first day of school. In a way, he will skip some of the aspects of turning up as a freshman in September. I am someone who voluntarily attended summer school to get ahead on credits (don't recall what the heck they were!), and also got into university via a summer program. So I dig whatever G is going through.
Right, so all that sounds groovy and cool. There is one single part of summer school that sucks for all of us: driving 10 miles to La Canada on mornings Pablo's sound asleep. And Jo Ann and I having to make a rigid morning schedule of who can go out and exercise on what morning. Which reminds me, I gotta go wake him up so we aren't late!
See you later.
Sunday, July 20, 2008
Saturday, while Jeff Suhy and I did a 25ish mile ride in Griffith Park, Jo Ann took the boys out to a late breakfast at Auntie Em's in Eagle Rock. They had a lot of fun. Later in the afternoon, we took Grady and his friend Jasper to the production rehearsal for the Nine Inch Nails tour. Our friend and my client Justin Meldal-Johnsen joined the band a couple months ago as the bassist. He and the band have been working night and day to get the show ready for a world tour. The show was at the Forum. 400 other people in that giant arena watching the entire run of the show–an insane presentation of visual imagery on multiple HD screens, and deconstructed arrangements of songs from throughout the band's 20 year catalog of songs. I'm a lifelong fan of NIN, and the show feels like Trent Reznor's ultimate presentation of his music and the intense, inspiring imagery that has always accompanied it. Grady and Jasper were stoked, and we were stoked to see them stoked. To see their eyes and their imaginations open up because of music is a dream come true for us.
We joined about eight other friends for dinner after the show, at En Sushi in Los Feliz. Tony and Joanna, Trae and Mariah, and Justin's amazing wife Corrine (he went home to rest). Pablo at a big bowl of rice and a rice cut roll. We are trying to fatten him up. He's lost weight. His appetite isn't what it was before treatment, so when he digs into a big portion of carbs, we are happy. On the way home, Jo Ann commented that we'd had a great day. And her words hit me right in the heart. It's been such an unpredictable time in our lives, and having a great Saturday kind of felt like a weeklong vacation for us. In this unplanned and very real time in our lives, gratitude provides an island of peace for us.
Today, we had another big day planned. I went on a 55+ mile bike ride with Jeff, Piero Giramonti and Michael Tedesco. We met at the Griffith Park pony rides at 8am, and under a rare cloud cover, climbed our way up Mulholland and traveled it to Sepulveda, and then headed down to Ocean Ave. in Santa Monica. I got a flat, forgot my Blackberry in the loo at Peets Coffee and Michael caught a nasty rut in the street in Sherman Oaks and hit the pavement pretty darn hard (miraculously, he is OK)–and we still made it back to Jeff's for the noon BBQ he and his lovely wife Leslie had planned for us. Jo Ann and the boys joined us. We watched the Tour de France on Tivo while sitting in the pool. And Jeff made yummy burgers. Pablo made fast friends with Jeff and Leslie's two kids, and Jo Ann and Leslie chatted while the boyz geeked out as the peloton climbed a treacherous mountain pass between France and Italy.
After the BBQ, we headed down to the Arclight Cinemas to see 'The Dark Knight.' Pablo spent half the movie with his hands over his eyes. When I bought the tix online yesterday, I kind of talked myself (and Jo Ann) into the idea that it'd be OK for Pablo. My nutty mind told me: it's PG-13, no R. And Pablo's friend Rory's parents Chris and Emma made the movie. 'How bad could it be for him?' I figured. No matter how much pre-justification I could make up, the movie was not appropriate for him. Jo Ann felt bad about bringing him, and so did I. Oddly, he didn't seem to mind covering his eyes for long periods of time!
That said, the movie was amazing! Like the NIN show, it is the real deal. Every bit of the script, casting, art direction–hell, even the foley–was fantastic. It was scary. The character were real, rich, insane illustrations of humity. It's one of the rare movies that exemplifies every aspect of the movie-going experience. And the political and sociological undercurrent in the script were indicting.
If every day was like this Sunday, I'd buy a season pass.
Thursday, July 17, 2008
Yesterday, Pablo recited the through line of a 'Max And Ruby' show. I listened as if it were a lost Hitchcock script. His eyes glistened. And that smile, it conveyed joy, passion, purpose. You'd have sworn Max and Ruby were kids from down the way, lifelong homies. You'd have sworn Pablo lived the story he was telling. This kid wants so badly to communicate, to relate, that he is practicing his craft shucking used stories about polite cartoon animals. I love it. The chemo can't slow the blood in his veins. Can't impede the throughline of his life.
Yesterday, we took Grandpa (my dad) to my office, and to lunch at Skooby's hot dog stand on Hollywood Boulevard. My dad hasn't been to LA in 30+ years. Holy smokes! We took him by all the studios in Burbank, and to the Rose Bowl, and then to see St. Francis high school and Pasadena Waldorf, so he knows where his boys are going to learn their stuff in the fall. Then, as Pablo was fast asleep in the back seat, we took him up Angeles Crest about five miles. He loved the view and the insanity that such beauty was so close to the dystopian malaise of LA.
Polly and Jo Ann have said many times that Pablo makes them better persons. I get it. The things he says when no one else is around just kill us. I always try to remember what he just said, and I never do. It's too hard. Like having a grain of sand for a pet. Far beyond cute, his words, his thoughts, his questions and suppositions are a constant stream of moments. One day when he is older we'll sit around the table and tell him about him until he can't take it anymore. At the right moment, we'll all recall enough Pabmoments to fill an afternoon.
He is a brutal competitor when it comes to games. He learned that from his mommy. He does whatever you tell him not to do. He learned that from his papa. He is a sweet snuggly loverboy. He learned that from Grady. And he is sleeping. I need to be next to him in bed.
Good night everyone!
Wednesday, July 16, 2008
Yesterday wasn't so bad. Pablo napped for part of the time. And he was generally in a good mood. My dad arrived from Milwaukee in the late morning, and joined us at the clinic. He couldn't believe how much time Dr. Mascarenhas spent with us, talking and answering every question on Jo Ann's list. We appreciate Dr. M in a deep and meaningful way since the moment we met him. Still, it was nice to hear my dad's kind words about the doc.
In the quest to figure out why Pablo is getting riveting headaches, Dr. M recommended that he watch TV only for short periods. We are trying to narrow down the list of triggers, and pinpoint what might be the cause of the head pain. Dr. Stein and Dr. M both talk about environmental triggers more than anything–or that it could be caused by the general stress of his medical-focused life at the moment. We never know how the body is going to respond to activity in its vacinity. Imagine the violent war the chemo is waging inside his body. And, unlike an adult, Pablo does not have the verbal faculty to express his pain, confusion, discomfort, even fear. And how the chemo affects his sense of taste, and the way light and sound make him feel.
The stuff has to come out somehow, somewhere. Maybe that place is his head, just above his right eye.
Pablo elected to spend his short burst of TV watching to on the first 20 minutes of 'Star Wars.' He and Polly stopped at the cantina scene, right after Han Solo blows away the green alien who's shaking him down to repay a debt to Jabba the Hut. Maybe today he will watch another 20 minutes, and spend the rest of the day coloring, and kicking everyone's butts at Uno and Sorry!
Tuesday, July 15, 2008
Jo Ann had invited our new friends Dayla and Paul and their sons Fyn and Felix over for a play date. Fyn is a liver cancer survivor. He was treated at CHLA, by some of the same doctors who are caring for Pablo. Fyn is six now, and he says that Red Devil is what got rid of his tumors. Jo Ann and I spoke on the phone after the play date. She said, 'It's so inspiring to see Fyn. It just helps me to know he went through what Pablo's going through. And he is a beautiful, healthy little boy with beautiful energy and beautiful spirit.' And that, in turn, helped me. I'm looking forward to meeting these guys soon!
Fyn brought Pablo a Star Wars coloring book. I'm not sure that Pablo knew what Star Wars was before yesterday afternoon. When I got home from my day of work and a meeting in Venice, P excitedly named all the characters on the cover of the book.
'Papa, this is Chewbacca. This is C3P0. This is Darth Vader. He has a light saver.'
I told him it was 'light SABER.'
'I know, Papa! Light saver!'
That went on for a while. I love it when he is equally cute and insistent. He shares that with his Mommy!
Anyway, it Pablo wants to be Darth Vader. Jo Ann is Princess Leia. I want to be Han Solo. We'll ask Grady later today who he wants to be.
Normally, we'd be turning him away from all this movie and character stuff. He's starting Waldorf kindergarten in September after all. But, like, seriously, if Pablo wants to watch character-driven movies and shows, that's gonna have to be OK. We are doing it consciously, and that's the point in life for Jo Ann and I. Yeah, I am definitely saying, 'Pablo is fighting a nasty disease. It's a paradigm-shifter. We're gonna roll with what P wants and sort out the rest later.'
To that end, Jo Ann and I tore apart the entire house looking for the 'Star Wars' DVD set. We swore we had one. All we could find was a VHS box set. The DVDs never materialized. So, Pablo and I watched the first half of 'Indiana Jones' before going to sleep. (Harrison Ford is Harrison Ford, right?) He loved it! We're going to watch 'Star Wars' tonight.
We met Dayla, Paul and Fyn through our longtime friend Suzie Vlcek, Jo Ann's colleague from her old company, Production League of America, and the director of Silversun Pickups' first video, 'Kissing Families.' When Suzie heard of Pablo's cancer, she immediately introduced our two families. They live down the block from us. Maybe 27 seconds away. It's crazy how things come together, how close people are.
What's even freakier is that Fyn's dad, Paul, was the cinematographer on the 'Kissing Families' video. I brought Pablo to the shoot (he was about two then), which was at the old SSPU on Westerly Terrace, a few blocks from our house. I recall being there for about 15 minutes. Pablo was climbing on everything. Pablo has a history with SSPU. While they were recording their album 'Carnavas,' I brought little homeboy to the studio. Within 120 seconds, he managed to break the iPod belonging to Joe Lester, the keyboardist (it eventually came back to life lol), and, while no one was looking, he muted the kick drum channel on the Neve console. That one threw Dave Cooley, his engineer and the band for a loop for several hours that afternoon. They thought something crazy had happened to the studio.
Time to go to the hospital. Chemo time!
Oh–my dad flies in today. I have lived in LA for almost nine years. And this is the first time he's coming to visit. We are all excited!
More pics and stories coming soooooon....
Monday, July 14, 2008
The reason is, there'd be symptoms other than the aching head itself, such as vomiting. Another sign is that Tylenol has been an effective pain reliever. (I was incorrect in the previous post–the med he took last night was plain liquid Tylenol, not the heavy duty pain medicina.)
As a precaution, Pablo will get an eye exam. He's been watching so much TV, the docs want to rule out a change in his vision as a cause of the headaches.
Bottom line is: there will be no head scans unless this escalates. And there's no reason to believe it will escalate.
PS: When P and I were watching 'Batman' in bed last night, Grady and Jo Ann were watching 'Run's House' co-starring everyone's favorite Buddhist, Russell Simmons.
When Pablo's head started hurting last night, Jo Ann emailed Dr. Mascarenhas. He recommended giving P his pain meds (it's a liquid cocktail that contains kiddie doses of Valium and some other stuff). Once he downed the medicine, he felt better. His demeanor changed immediately. It was remarkable. Once that pain subsided, the pained Pablo let the real Pablo take the controls. The laughter returned. And he started telling me stories about Scooby and Shaggy. He's a real raconteur.
Once the stories subsided, Pablo turned toward the closet in our TV room–where we keep DVDs. He had woken from a three hour nap an hour before this. When I told him it was bed time, he wanted to watch a movie in bed. We have tons of DVDs up in there–some we've never watched. Sometimes I wonder where some of them came from. Case in point is the original 'Batman' movie. The one from the '60s. Filmed in Pasadena, Beachwood Canyon and other dastardly places.
So... Headache under a powerful layer of medicina, the night ended with Jo Ann sleeping with Grady in his bed, and Pablo and I snuggling up in bed and watching 'Batman.' From the moment the DVD menu popped up, he loved it. Of course he did! He's a little boy. And 'Batman' rocks. Pablo watched the entire movie. I feel in and out of sleep. At the end of it, we were talking about how great it was.
"Isn't that the coolest movie?" I said.
Pablo busted me, saying, "Yes, Papa! But you slept through some of it."
It's 8:10 a.m. Monday as I write this. I am watching stage 10 of the Tour de France–Pau to Hautacam. This is meant to be one of the hardest stages of this year's Tour. I was registered to do this stage in the Etape du Tour, which went down last Sunday. Every year, the organizers of the Tour open one of the harder mountain stages to a limited number of amateurs. It's a race, and it's meant to be a blast. A painful, exciting blast. Anyway, that's the Etape, and our family holiday was built around it.
We had to cancel our trip when Pablo's diagnosis came down. The real Tour champs have 2.9k to go. The Pyrenees are pounding them back with a 10% grade. The toughest bike racers in the world are losing ground to gravity and mother earth, pushing their machines side to side, ramming their feet round the pedal stroke. Gasping for oxygen in the high mountain air, these guys are in the prime of the season, doing what they've trained all year, and all their lives to do.
Much as I wish I were a bike racer, I am not. I am lot of things to a lot of people. At this moment, my main job classification is 'papa.' And I better get to it! I have to wake and dress Pablo, and put Lidocaine on his chest, to numb the skin around his port, in case they have to access him for blood. We'll be at CHLA by 8:45 a.m. Jo Ann took Grady to summer school out in La Canada. She'll meet us at the hospital.
It's Monday morning. Have a good day, and have a good week.
Saturday, July 12, 2008
While I was chilling in the fort just now, Pablo ambled in and said, "So...at Whole Foods today they were out of pirate booty. So we got a different kind of booty."
He and Jo Ann had just returned from Whole Foods. Pablo was on a mission to get lemonade. Funny, uncle Scott had an insatiable thirst for Odwalla Limeade when he was going through chemo. I have a pic of Pablo taken at that WF, in front of the Odwalla case, holding a huge jug of limeade. We took it on my Treo, and emailed it to Scott. Pablo must have been about 18 months old. If I can find it later, I'll post it.
Earlier today, he was watching 'Max And Ruby' and Jo Ann heard him proclaim "Max is so delighted that he saw that ice cream shop."
Needless to say, we're having a pretty darn good day here. This week, 'good' means P hasn't thrown up today. And his energy is GREAT. And he looks GREAT. Pablo wants to see a movie, so we are going to see 'Journey To The Center Of The Earth' in 3D at 5:20 p.m. at the Americana mallstravaganza in Glendale. If you happen to be headed to that theater as well, we'll be the folks in the back row wearing masks!
Friday, July 11, 2008
While I was checking out the news crawl on CNN, my Blackberry vibrated in my hand. It was a text message from Grady, direct from his summer school classes at St. Francis, the high school where he'll become a freshman in September. His message was 'We had a pop quiz in vocab today. I got an 89! And I think I aced my math test too.'
I was with Adam Harrison. Showed it to him. Gave him a hug I was so happy! Happy to see Grady kcocking back the tests and pulling sweet marks. Second, happy to see Grady excited about his traction in school. We are proud as hell of Grady!
When I got home from the office yesterday, Jo Ann and Pablo excitedly told Grady and I about their day.
Using a jogging stroller that Phil and Dorrie lent us (ours is buried in the garage with flat tires and I've been too lazy to dig it out and deal), they made their way down the Silverlake Reservoir. Huge, because this is Pablo's first outing since returning home from the hospital on Saturday. And he'd been in CHLA from early Wednesday morning.
As Jo Ann and Pablo made their way down the wide path that circles the rez, they decided to go to the Coffee Table, a great restuarant / coffee house on Rowena, to grab some food. When they made it there, they ran into Tony Hoffer and had lunch with him. (At least I think they did–everyone's still asleep, so we'll have to go with that.)
Pablo walked half of the 1.5 miles home–a huuuuuuge feat for this little boy! Three months ago, Pablo would have run all the way there, continued jumping around while eating, and run all the way home. For real. That's how much energy he normally has! After a gnarly abdominal surgery and a giant vial of Red Devil on Tuesday, Pablo's every move has been more considered this week.
The upside of this (and I am reaching here, to find a positive in any of this) is that when he gets better, we'll appreciate his active lifestyle soooooo much more than I had ever imagined. Seeing him lay on the couch all day watching Scoob and Shaggy is so strange. But he'll be back to normal in no time, and will have a full SD vocab: 'rooby racks' (scooby snacks), 'zoinks,' 'jeepers,' 'mystery machine' and so on. Maybe I'll even play him the Fun Lovin' Criminals song 'Scooby Snacks'!
Awwwright, I'm off to ride La Tuna Canyon with my friend Piero.
Thursday, July 10, 2008
Dangerbird Records Launches Cancer Foundation
Jul 3, 2008
Story by: Tyler Theofilos
Dangerbird Records has launched the Pablove Foundation, named after Pablo Castelaz, the five-year-old son of the label's co-founder, Jeff Castelaz. In May of this year, Pablo was diagnosed with Wilm's Tumor, a rare form of children's cancer. Thanks to extensive research, this kind of cancer is 90% curable. Pablo is currently being treated at Childrens Hospital Los Angeles.
The Pablove Foundation will make an annual contribution toward cancer research and treatment at CHLA's Saban Research Institute. It will also support activities and programs for the children at CHLA, including music and arts programs.
Putting titles aside, from day one Ben has been a comrade, a man who believes in the Dangerbird mission, and has made it his life's work to put his mark on it. Every day, Ben makes our company, our family, a better place. Strong. Present. Highly observant. A wry sense of humor. Just the kind of guy Peter and I like.
Example: for about 15 minutes one day, I decided to build a casual, yet cool '-jc' signoff into my email signature. Within minutes of Ben's receipt of the first '-jc' email, he was on the floor, throwing 'Jesus Christ' daggers my way. A few minutes later, he'd superimposed my face onto an illustration of Hey-soos Krees-to himself. Effin hilarious.
Anyway, back to the matter at hand. Sometime in July 0f '07, Ben's mobile phone rang in the office. He let me know he needed to step out onto the roof to take the call. I knew the look on his face–serious, scared, dutiful–and had a strong feeling that when he re-entered the office, we'd be having a chat. Ben is a young guy, so I figured his parents were young as well, and never thought there'd be an emergent issue coming from his hometown of Detroit Rock City. That was when I still thought cancer and age had a relationship. That was when I still thought only 'old' people got cancer. That, despite the black and white fact that Scott was emblazoned with the word/term/news/label CANCER when he was just 37. I hadn't yet learned. There was still that 'it happens to other people' thing commanding my mind.
So, Ben walks back into the office. His face is reading a deeper intensity than before. I never told Ben this, but it scared the hell out of me. With that look, I knew what was about to come out of his mouth. And it scared the hell out of me. He said (and I am paraphrasing), 'That was my dad. He's just been diagnosed with cancer. It's stage four. It's in his brain. I have to go home to Detroit to see him.'
I don't remember if I hugged him, or just gave him the verbal embrace of empathy and 'Anything you need, don't hesitate to ask. Take all the time you need.' But I recall having a few instinctual instructions for him: take it easy; take it one minute at a time; he needs you to be clear more than anything. I had lived the phone call from the midwest. I had lived the cosmic bomb drop. I had lived booking the flight, trying to sleep, trying to make sense of it, and the torturous flight home the next day.
Over the ensuing year, Ben made hundreds of rounds out to the roof (our office is on the roof of a building in Hollywood). It got to the point where he no longer said he was taking a call. He knew I knew what was going down when he walked out. In our company, we form a safety net under any person in need. It happens without words. It just happens. It's how we roll. In the past month, the drumbeat from Detroit started to build. For those of us who've moved away from the homestead, that's the way it goes down.
In Ben's case, the drum started to pound louder and louder on the eve of a Detroit trip he'd planned as his summer vacation. In my experience, this is a common occurrence. Things line up so often when we take a moment to recognize. Ben got back to Detroit on Friday June 27. He hung with his dad, his mom, his brother and his family. The next afternoon, Ben's father, David, passed away at home, as he'd wished.
The long lead in this post–the anecdotes and observations I wrote about Ben–is a testament to Ben's father. None of us met David–at least not in the way you'd typically think. We have come to know David by becoming brothers with Ben. By seeing the kind of dude that Ben is–a caring, passionate, heartful man–I think we all know David pretty damn well.
On behalf of Jo Ann, Pablo, Grady, and the Dangerbird Massive, I extend a Pablove ray of light to the Berry family.
Wednesday, July 9, 2008
Sitting down for dinner tonight was cool. For the first time in a long time, the entire family was here. Plus, our Brentwood dinner angel, Sharla Crow, joined us. She brought a giant tub of Carrie Wiatt's sloppy joe goodness, and, to balance out all that healthy stuff, a giant thing of cupcakes (I had two).
It's Nana's last night in town. She flies back to Houston tomorrow. As always, we've been happy to have her with us for the past week. She has been Pablo's constant companion, and has been a huge help all around the house. She'll be back for the August surgery, so we'll see her soon.
Our conversation ranged from Grady playfully accusing Jo Ann of making him take tests for high schools he didn't want to go to (he was joking, seriously!) to Sharla telling us about the fireworks at Malibu to Grady talking about standing on the roof at his dad's house on the 4th, and seeing the fireworks at the beach, at the Rose Bowl and everywhere in between. Sounded very nice. Jo Ann joked that we were holed up in a windowless room at CHLA on the 4th and didn't see anything.
As we laughed and chowed, Pablo warmed up, and began to smile and laugh along. He'd woken from a long nap shortly before dinner, and was having a tough time coming around to all of us noisy big people. Halfway through our meal, Pablo asked for grapes. His appetite has been sporadic at best lately. So, when he asks for food, we run to prepare it. Grapes are particularly good for him right now cos they are, um, roughage. And keeping him regular–and in the deuce zone–is a big ticket prize around here lately. Dr. Mascarenhas noticed his belly was pretty severely distended when we were at the clinic yesterday. It'd been nearly three days since P had gone P.
So, the good doctor had a nurse administer something that I'd only e'er heard about...in jokes– good old fashioned enema. After the mandatory 15-minute 'holding time' Pablo, Polly and Jo Ann made a bee line for the ladies' room. Moments later, the bomb dropped, and we all cheered. Homeboy strutted out of the toilet happy as a clam. He was happy–seriously, you could see it on his face!
After dinner, Pablo showed me the mountain of Scooby Doo movie DVDs that Mommy picked up for him today. A week ago, the dude had never heard of Scoob. Today, he can't stop watching him. (And we can't wait til he grows up and meets some stoners, and realizes we polluted his mind as a youngster!)
Anyway, enough potty tawlk. I'm just saying that lately there's been more sorrow and sadness and post-surgery, post-chemo haze around here. The laughter and good cheer we had this evening was NEEDED and WELCOME!
Hope this post communicates the simple joy we had at dinner. I want to send those Gamma rayz your way.
Yesterday's chemo session brought on the first dose of Red Devil. And the devil brought vomit. Sucks. It's so hard to see your child–any child–throw up. You can't DO anything. The child is freaked out. It is gnarly. 100%.
Our goal today is to get him out of the house for a light activity or two. Like any kid, Pablo loves to watch TV. Being laid up with a sore gut, it's been the main thing on his itinerary every day. Well, that and kicking our butts at Uno (seriously, he's that good). When I was leaving the house yesterday, I went to give P a kiss goodbye. He hugged me and gave me a peck without taking his eyes off 'Scooby Doo.' It was impressive!
But, of course, we don't want him to turn into one of those zombies that Scoob and Shaggy are always chasing. So, maybe some outdoor activities are in order today. Jarts? Lawn bowling? Outdoor Uno?
Tuesday, July 8, 2008
Turned out to be nothing. Due to the potential for infections of any and all stripes, we can't mess around. The E.R. was packed tonight, and everything took forever. In addition to the fever, a small but notticeable bump has appeared on Pablo's back. We had the E.R. peeps check it out. After consulting with the Oncology Fellow on duty, they determined that the new bump was OK, and could be checked out in the morning by Mascarenhas.
Pablo looks good, his blood tests came back great (we haven't had a bad one yet!), and they felt there was no urgent need to do a CT scan. Thank God!
As a safe measure, Pablo got 900mg of a powerful antibiotic–the same thing we get every time we go in with a fever. It takes 30 minutes for the fluid to pump into his body. Usually, they make us wait 30 minutes after that goes in. Luckily, we had our magic fave nurse Stephanie tonight. She knows that we know the drill, so she let us go home immediately.
The good news is that we are now ahead on our Oncology Clinic appointment for tomorrow (a/k/a later today). It's 3:35 a.m. as I write this. We're due in the Onc Clinic at 8 a.m. Since we already have P's blood labs from, like, 10:30 last night, we're gonna live on the edge and turn up at the clinic at 8:30, carrying the print-out of last night's labs. If it works, we'll have bought ourselves an extra 30 minutes of precious sleep. And the clinic will go a lot faster.
We are excited as hell to see Dr. Mascarenhas at 9 a.m. A couple things on Pablo's body have us nervous. It will be comforting to have his view on them.
More later. I am seriously tired.
Monday, July 7, 2008
Simple: the battle is not over!
The next six weeks of treatment MUST do the trick to shrink the tumors that have planted themselves on the most critical part of Pablo's kidneys. In layman's terms, the tumors have taken up residence on top of the collecting area, the part that collects waste that flows into the ureter down to the bladder.
Tuesday is the first day of the next phase of our battle.
Dr. Leo Mascarenhas, whom Pablo endearingly refers to as 'Mr. Mascarenhas,' is thinking about our exact strategy, and we will have more to report after we meet with him on Tuesday.
What we do know is that a third chemo drug will be introduced into our little boy's body. He will now be receiving Doxorubicin. This drug is red (notable cos all the others so far are either clear or yellow). It's the first one we've come across that has a nickname: Red Devil. And, like the Castelaz family bloodline, the heritage of this red devil began in northern Italy, at the Farmitalia Reseach Labratories in Milan. Our family emigrated from Trentino. The exact origins of Doxorubicin can be traced back to soil cultures taken on the grounds of Castel del Monte, a 13th Century castle in Apulia, Italy.
Even though that big nasty tumor responded well to the previous treatment, Drs. Mascarenhas/Stein feel that upping the intensity of the treatment in the coming six weeks will give Pablo the best chance at hitting the next goal: for both tumors to shrink considerably, and pull away from the kidneys.
We are ONLY focused on the death and dying, shrinking and shirking of those nasty tumors. Some of us need to know what we are fighting against. So, for those of you (like us) who need all the details in order to put up your best visualization or intention, the reality is, if those tumors don't up and leave–at least enough for Pablo to retain a good part in one or both of his kidneys–Pablo could lose both of his kidneys.
So, prayer warriors, your beautiful work up to this point is working, now let's keep it steady and continue to hold Pablo in the light. He will win with the assistance of all of us!
Jo Ann and Jeff
Saturday, July 5, 2008
WE ARE OUTTA HERE!
Around 11:55 a.m., Pablo called out 'Bombs away' and Jo Ann and her mom Patricia got him on the toilet faster than a tick on a hound dawg.
By late afternoon, Pablo was on his second walk around the sixth floor, and looking stronger and more sure-footed than ever. Polly, Pablo, Jo Ann and I were in the middle of a mean game of Uno when our nurse, Darcy, and the on-duty surgury fellow, Dr. Williams, rolled up on us. One of them said, 'OK, Pablo, you're ready to go home!'
We were headed back to our room in no time.
Darcy de-accessed Pablo's port. She is from Platteville, Wisconsin. I noticed her accent when she started this morning at 6 a.m. I wasn't in the head space at that hour to reminisce about the homeland. Jo Ann picked up the accent as well. While Darcy was removing all Pablo's lines and ports and tape and stuff, Darcy filled us in on her schooling in Appleton, WI. That's also known as the hometown of Harry Houdini. Darcy works with a traveling nurse service, and has gone all over the U.S. working at different hospitals, and we were lucky enough to meet her today.
Dr. Williams, the surgery fellow, pulled the string-thin Novocaine line out of the center of his belly. Imagine a single strand of angelhair pasta inserted through the tiniest hole in the center of his abs. Fascinating. He didn't feel a thing. She was skilled and compassionate–so much so that Pablo contemplated his naval–literally–the entire time she was removing the Novo-string.
The ladies have packed the room while I've been typing (I know, what a jerk I am!). Now it's my job to get our bags, pillows, paintings, photos, food, etc. down to the cars. Guess I better get to work!
Next post will be from home.
Friday, July 4, 2008
Flash forward to 10:30 p.m. Friday. Pablo had just fallen asleep. I smelled the other kind of big news the docs want to know about after surgery. Yes, like brother Shinta Cho said: Everybody Farts. You know the cliche: to the surgeons, the first sign of recovery in a patient is a few cheek-slappers flyin' out from under the sheets.
Dr. Mary Austin, Dr. Stein's fellow, came in this morning. She says Pablo looks great, the incision looks great, and if he can have an intestino circolazione, we're outta here this afternoon. Man, we've never prayed for poop before. But today's the day we startin. Dr. Austin is who broke the cancer news to us down in the ER in the early morning hours of 18 May. We love seeing her. She is sharp, Southern (from Nashville I believe), sweet–and a diehard cyclist! Pablo was asleep
You know, Michael Stipe's not the only skinny bald guy who gets to say Everybody Hurts. For the past two days, Pablo's version of that song has been 'Every Bump Hurts.' This popped into my head yesterday afternoon. As we got Pablo up and out of bed for a couple walks and a couple mean rounds of Uno, he constantly screamed 'my bump huuuuuurts!'It definitely does. For a kid who's never felt any major pain in his life, and who can take a pretty serious fall and get up and keep running, a gash in the abdomen is a serious blow.
As the day wore on, Pablo was maneuvering with more agility. He hasn't gotten out of bed this morning. That's the next goal.
Jo Ann's here, and I'm gonna run home for a shower.
Thursday, July 3, 2008
It's been an interesting day. Pablo turned five a week ago. By this age, we aren't expecting a lot of firsts. But we are now a cancer fighting family, and the word expectation has a different meaning for us than it did seven weeks ago.
Today has been filled with a bunch of firsts:
• Helping Pablo deal with the first real physical pain he's ever experienced
• Seeing Pablo's normally bright, expressive face hanging blankly, and his normally crystal-clear eyes hazed over from Novocaine, Morphine and Vicodin
• Helping Pablo endure that pain as he sits up in bed and sits in a chair (he has to sit upright 60-90 minutes a day to help his lungs recover from the collapsing effects of anesthesia).
• Pablo staring at us with lazer eyes and screaming "Don't touch my body!" when we try to help him (he is normally very huggy/snuggly/affectionate).
• Feeling the 'marathon' aspect of Pablo's cancer treatment - ie, even though everything is going well, we realize we are at, like, mile marker 4, even though it feels like we cruising thru mile 12
All that said, Pablo IS doing well. We had a breakthrough just now. Getting him to move from the chair to bed took 20 or 30 minutes, but he DID IT! He verbally expressed his fear, and how bad his tummy hurts when he moves. And then, with some visualization culled from our cycling adventures and breathing he learned from Ananta's yoga classes at Walther, HE WALKED THROUGH THE PAIN!
The relief in his eyes was worth enduring the pain of seeing him in pain.
Fireworks are illegal. If you live in LA, so is driving while holding a cell phone to your ear.
Wednesday, July 2, 2008
We got a room. Pablo is still dazed and confused, but doing well. The room has a VCR. Being that Pablo was born in 2003, he has no clue what a 'VHS tape' is. Love that! When I explained to him that the six DVDs he brought wouldn't play because his room had this older machine, he said, "Nana has that kind of a–thing–at her house." A huge bonus is that the nurse's station has his current fave 'Anastasia.' We only have it on AppleTV, cos it's not out on DVD yet.
We expected to be with the cancer crowd this week, but the fourth floor soft tumor unit is fully booked. No room for little Pabi. So we are in the 1960s-era physical rehab floor. Note the bubble-icious sky roof in the photo above. It's a whollllllle different scene up here. Noisy. Every kid has a dozen family members coming by. Many of these kids have been here for weeks or months, getting intensive rehab for gnarly injuries.
It's kind of nice up here in many ways. But we'll be happy when/if the fourth floor calls to say they've got a bed for Pablo. We like the quiet of that unit. Plus, all of our docs and fellows are roaming that floor all the time, so we get more face time with them.
So, Jo Ann and I are working the charge nurse to get us moved to floor four asap. Tomorrow would be the soonest.
Big Boyee is DEAD!
Big Boyee is DEAD!
Big Boyee is DEAD!
Dr. Stein biopsied the big tumor (right side). It is completely dead!!!!! This means the chemo is working. This means cancer is losing the battle! This means PABLO IS WINNING!
PABLO IS WINNING!
Dr. Mascarenhas just came down to tell us the news. He was on the phone with Dr. Stein during the operation. He said they may biopsy other pieces of the tumor, just to be sure, but that Dr. Stein's assessment is that the entire thing looks the same.
Here's what's gonna happen: Dr. Stein is gonna sew him up, leaving the tumor right where it is.
Sounds crazy, right? Counterintuitive is the way we are lookin at it. These doctors know their s**t, and their biggest priority is to preserve Pablo's kidney at all costs.
So, the goal with zapping the tumor with another six week round of chemo is to see if it will shrink away from the kidney. That would allow Dr. Stein to slice it off the kidney, and leave behind a healthy kidney.
In an instant, we are playing a game of inches - a helluva lot more comforting than the hazy game of miles we were playin prior to now.
Dr. Stein will get another bite at the apple on 19 August. OK, possibly not the best choice of metaphor. You get what I mean.
We now have Mile Marker #2 in this marathon.
This is all we know at the moment. Lots more deets to come, for sure.
He's getting the feel-good medicine as I write this. Jo Ann is holding him. We'll give him one last hug and kiss as he falls away from this nutty room. And then he'll be in the good hands of Dr. Stein and his team.....
More updates as we go.
Pablo can't eat or drink til after surgery. To put a finer point on it, he can drink clear liquids. In our house that means water or apple juice-two things Pablo loves to pound down any day of the week. Except today. I swear, he just WANTS OJ and a red fruit popsicle just cos he CAN'T have it. I would! Who wouldn't?
A few minutes ago, on the way to CHLA, we drove by Intelligentsia, our local caffeine injection emporium. We always stop there, or the Starbucks in the Vons grocery adjacent to CHLA. Couldn't stop at either. Pablo would freak the funk to see us ordering delicious, sugary drinks in front of him, knowing that he'd be on the outside looking in.
So, I came up with a workaround: get someone to BRING us coffee-which could be consumed out of Pablo's sight-ASAP!
Adam Harrison from Dangerbird had just IMed me and I knew he was en route to Hollywood.
Using good ol' Blackberry Messenger, the best way to communicate when you absolutely gotta have something NOW, I got Adam to change his destination to Starbucks on Sunset and St. Andrews, then CHLA.
Then came the hard part: getting drink orders from Jo Ann and Dean without triggering Pablo. I spelled the order inquiries. They spelled out their orders in response.
Jo Ann spelled out "I C E D. L A T T E."
Dean dropped these letters: "I C E D. A M E R."
Suddenly, Pablo pipes up and says, "I'll have a hot choclate!"
Our Starbucks spelling bee plan was a bust. But, daaaaamn was that a funny and precious moment!
What's even funnier is that the admitting rep just asked Jo Ann if I was the patient. "I was going to ask if he could sign for himself," she said.
Laugh now, laugh hard, make all the 'he's a goofball, so that figures' comments you want lol! I deserve it, I'm sure!
Tuesday, July 1, 2008
Surgery is set for NOON WEDNESDAY.
We need everyone to send light and love directly to Childrens Hospital Los Angeles at that time. Pass the word to everyone you can. We ask that you stop what you are doing, and bring Pablo into your consciousness. That is all we can ask of you. And it's a big thing to us. We believe–and have seen–the power of intention work in our lives time and time again.
Wednesday at noon is game time, and we need you on our team.
Everyone wants to know the details. What's going to happen when they open up his little tummy tomorrow? The answer is, there are so many variables, it's hard to get into it all. This isn't a Hollywood war movie moment where "we're gonna go in and knock back the Hun." We wish it were. I'd have rented Robert Duvall's costume from 'Apocalypse Now!' for the occasion.
In broad strokes, Dr. Stein's options range from doing a quick biopsy on the right side, tossing the specimens to the pathologist on his team, and, based on what he sees, proceed from there. This is the ultimate audible play. Wilms' Tumors fall into two buckets: good and bad. Just like Coke and Pepsi. Darth and Luke. Metallica and Megadeth. If the biopsy proves 'favorable histology,' Dr. Stein will take one course. If it is the bad guys, there's a totally different protocol altogether.
The long and short of it is that there are a few concrete facts the docs can see in Pablo's CT scan:
• The tumors on both sides have grown into the kidney's "central drain" area. This complicates things, cos that is how pee pee gets to the urological tract. Dr. Stein can deal with this with a standard surgical practice, but it makes it different than simply removing a tumor that has grown on a non-essential part of the kidney.
• The left tumor has stagnant growth. Great news.
• The right tumor (Big Boyee) appears to be in a state of necrosis, which means cells are dying, and are hanging around in the sac that is attached to the kidney. Technically, Mr Righty has grown about 5%, but the docs say that this is considered 'flat' in their view.
• They see no effect on Pablo's lungs or lymph nodes. More great news.
• Overall, the docs feel the chemo has done some work. The greatest news.
This will all make more sense when I can lay out a report of what DID happen sometime late Wednesday.
Please be with us tomorrow.
Here are the key times:
• Check in at surgery pre-op desk at 9 or 9:30 a.m.
• Pablo goes under at noon
• We wait in the surgery waiting room, and can take a restaurant-style beeper if we want to take a walk
• After Pablo wakes up, he will be admitted
• Length of our stay is dependent on the procedure Dr. Stein pulls off in the operating theater.
HERE'S A PLAY-BY-PLAY OF OUR DAY TODAY
We spent all day at CHLA Oncology Clinic. 7:45 a.m. to about 4 p.m. Pablo, Jo Ann and I met with Dr. Stein, our surgeon. Then Dr. Mascarenhas, our oncologist, joined the meeting. Each of them popped into our room at least one other time later in the day to check in on Pablo, and us. Jo Ann and I feel secure and sorted when we have a second or third opportunity to chat with the docs. Some other visitors joined us in the room today as well: Polly, of course, AND Nana and Boo arrived yesterday from Houston, and Uncle Dean came in from Milwaukee today.
Throughout the day, Pablo had all kinds of pre-op observations, vitals, and a blood transfusion. He now has a pint of his Papa's blood coursing through his veins. I joked with him at dinner that now he can read me a book tonight.
Just before the blood bag was connected to his port, Pablo's temp shot up, and the blood had to be put on hold. It's not ideal to do a transfusion with a fever in the recipient. With a four-hour clock running on the blood he was about to receive, the medical team drew a blood sample from him (fever can indicate infection), and knocked back the heat with an oral dose of Tylenol.
After an hour or so, the fever went down a bit, and the blood line was connected to Pablo, and for the first time in his life, he took someone else's blood into his body.
Tonight, as Pablo fell asleep on me in the fort, his breathing deepened, and he nestled his body into mine. This is my favorite part of being a parent. He needs me. He loves me. I am his father, and I am here to do my simple part of just being here. Despite the simple harmony of that moment, the Monday Night Current of Anxiety rose in me.
After Pablo fell asleep, I lifted him, laid him on his pillow, climbed out of the fort, and went downstairs. I could not fall asleep. Jo Ann was doing her Novena, so I went to Grady's room, and caught up on email, thinking that'd get me in the sleep zone. It didn't. But I went upstairs, climbed into the fort and tried to force myself to sleep. I rose again, this time heading for the kitchen. I needed some Elmo-Os.
I've climbed 10,000 feet on my bike in the past three days. My legs ache, feel heavy. When I push that hard on the bike, I often wake up in the middle of the night and have to ingest some calories. It's not hunger pains specifically that wake me–it's an overall soul coughing that radiates from the insides of my bones. It's quite satisfying, really, when it's not attached to a larger event like it is now. It sure beats waking up with a hangover, which was my lot in life prior to seven years ago. Usually, the eating calms me down, and I easily fall back to sleep. Not tonight.
As I continued to search for the magic position of my body, the blanket, the pillow, I kept telling myself, 'It's like I just got back from London, and have to wake up early LA-time for an important appointment. You're going to be OK in the surgeon meeting tomorrow.' When that distraction wore off, my mind dropped down to the truly tough stuff: real, bona fide fear.
It starts with something simple, like, 'Why is this happening?' And escalates to: 'If I can just envision Pablo graduating high school, that will be a good sign. Then I'll be able to fall asleep.'
This is where it gets really tough for me. And I need to put my hand up at this point and tell you that what lies below is heavy material. If you aren't able to go there, stop reading now. If you are OK to read about how the experience with Pablo lines up with past events in my life, read on.
Let me start this section by reminding you (and me!) that the Pablog has one purpose–to document our family's experience on this unexpected journey. The full experience.
Because Jo Ann has a different process than me, the blog has been mostly about my experience, or at least my interpretation of our family experience. She writes when it comes to her. All good. It works for us.
So, some days and weeks in Pablogland have been filled with reports of good, even funny stuff. For the past week, I have not been 'good' or 'funny.' Far from it. Anger has been my constant companion. I know what anger does: it mimics control, something I do not have a lot of at the moment. My anger leads to drama, and drama fills up time that might otherwise be idle, or reserved for inward reflection. But the pain is too great to crave inward reflection. So staying in anger has a double payoff: control and the general anesthesia of drama.
I am human, and will make more mistakes in life than any blog could hold, so I have no problem revealing this to the Pablog world. It's just the truth.
Another truth is that there is no script for this. When I first heard the words 'Pablo' and 'cancer' in the same sentence, I thought I could make it through OK because of my cancer experience with my older brother Scott. I guess I did think that that was my template, my script. He was not just my older brother. He was my idol, my guide in life, a father to me and my little brother Dean. Taught us about music, art, architecture, food, critical thinking, spirituality, everything. Get what I'm describing? Scott nurtured us, period. And the fact that he was our brother, not a parent, made his guidance sort of the ultimate 'Stand By Me' journey through life. Bittersweet, robust, authentic. We were constantly in search of the purest stuff life had to offer. I would give anything to have him sitting next to me right now. Anything except Pablo. Anything except Grady. Anything except Jo Ann.
I would exchange the past four years of Scott being gone from this earth for four years of me being gone.
Jo Ann and Grady have lived this with me. As a family, we have gone through ups and downs based on my deep sadness around the loss of Scott. Pablo has grown up seeing me weep in the middle of Morning Becomes Eclectic (a song reminds me of Scott). And Jo Ann has seen me worry about every dull pain in my body, fearing cancer. I even paid to have a full body MRI five years ago. Since then, I have had this nagging notion that my day was coming. I had no idea it'd be my son and not me.
I have walked around for the past five years thinking that it'd be me who would be diagnosed with cancer. Why did it skip me, and go to my son? Why does my little boy, so sweet and precious and funny and bombastic, have to carry this fucked up genetic mutation? Why is it him who has the port in his chest? Why does he even know what a port is?
Four years ago, Scott was dying. Literally, he was at the end of life. It was his emphatic wish to pass onto the next life in the comfort of his Chicago townhouse. For weeks we nursed him, right there in his living room. The sights, the sounds, the smell. The hospice nurses and doctors. The middle-of-the-night oral Morphine injections. Then, as he got closer and closer, the middle-of-the night hallucinations. Scott's subconscious was unraveling, as it does with humans. One night, he looked at me with lazer eyes. My arms around him, he had no idea who I was, but was sure that I was out to hurt him. "Get away from me," he said.
Finally, after a few weeks of this, we convinced him to retreat to Northwestern Memorial Hospital, just a mile down Michigan Avenue. Isabella, his daughter, was just three at the time. It was impossibly difficult to see her seeing her father die–in the living room. She was scared. And Scott's wife, Susan, could not take it. There was no easy angle in the scenario.
Scott and Susan's dear friend Father Chuck, who'd married them and baptized Isabella, drove us to the hospital. It took us five hours to get him to rise out of his chair. He did not want to go. I half-carried him down the stairs. The other half was him sort of sliding down on his butt. The entire way down, Scott wept in a way I had never heard, and have not heard since. Open-soul weeping. At that moment, I remember thinking, 'Irony is dead for me. Humor is dead for me.' And, for a long time, it was.
As we were pulling out of Scott's neighborhood, he asked Fr. Chuck to make one more loop around the hood. Cruising past his house, Scott asked Fr. Chuck to stop. Sitting in front of the house, Scott gazed at his front step one last time, clearly and squarely, with purpose. "That's where my little girl plays," he said. A beat. Then, "Let's go."
I had to tell you that story. There is no explanation. It just came out of my fingers and I typed. It was burning in the flames of my fear, anger, anxiety. It is related to Pablo, but mostly just in my head. Scott and Pablo are two different people. Pablo's cancer is wildly different from what Scott had. I am not confused about that, or in any way mixing metaphors. All I know is I feel slightly better now.
But when you get hit by a bus a second time, it still hurts like hell. And it does not let up or let go. It makes me want to eat Elmo-Os at 1:30 a.m. It makes me want to eat frozen waffles with Trader Joe's real maple syrup at 4 a.m. (see picture above).
I have been through a lot in my life. Like you. And so I know only one thing: I will endure. WE will endure. Love is real, and healing, and is the stuff that life runs on. You have given me and my entire family more love than we know what to do with.
As the sun rises over Los Angeles this morning, I am tired. And, knowing that by hitting the PUBLISH POST button in a second, I am letting of all the shit that's kept me up tonight. Being tired is nothing compared to what Pablo is going through. And I don't need a port to get the caffeine where it needs to be.
If you have read this far, I thank you. More jokes soon, I promise.