Hot For Chicken In The ER

We're in the ER. In the middle of yumilicious pizza dinner from Tomato Pie, Pablo said that his bump hurt.

So, we left Francine and Grady and the Three Bs - Beth, Butch and Bo - at the dining room table and ran to CHLA with Polly at our side.

The concern was that his tumor may have ruptured. He went down the backyard slide rough a couple times before dinner. And the dogs bumped him a couple more.

Two docs exammed Pablo, and determined that he's OK. The pain could have been the chemo killing tumor cells (they explained the exact science of it; I'm not gonna attempt to duplicate the info here lol).

The main thing is, he said the pain had stopped, and all his vitals checked out.

So, we're in the green zone. Safe and sound.

A funny aside about the doctors and nurses at CHLA that, I have to note, Jo Ann verbalized before I did (don't want to get myself in trouble): the majority of the medical professionals we've dealt with are, in Jo Ann's words, "hot."

Polly agreed. Immediately. And added that many of them have nice pants.

I asked what I should title this post. Somebody said "Hot for doctor."

Pablo shouted out, "Hot for chicken."

And he wins!

Afternoon Check-In

When the doctor said "cancer," Jo Ann and I thought that everything in our lives was going to change. It's one of the few single words in any language that can send you reeling. A white noise overtakes your auditory senses, your heart drops to your ankles, and your stomach feels funny. Being human, you think two disparate things at once: 1] we are going to fight this SOB of a disease with all we've got, and 2] what are we going to do? how can this happening to him? will he be able to go to his preschool graduation and his brother's eighth grade graduation? ...basically, one giant "WTF?"

All of those thoughts were reasonable. It was also reasonable to let all the thoughts go just as fast as they came, to make room for reality.

And the reality is that some of the past 14 days have been tough. But today, yesterday and the day before have been great. Especially today. It's beautiful outside. Everyone's in a great mood. We've gotten a lot of stuff checked off our family "to do" list.

When I got home from my ride, Grady had two friends over - Ruby and Hayley. They were hangin' in his room, playing guitar, messing about on G's laptop, and playing with Pablo. Jo Ann took Grady out shopping for a graduation suit. His graduation is Friday. What could be more fun for a mother than taking her firstborn son shopping for a suit that he'll wear on such a special day?!

Pablo and I hung back at the house. He wanted to watch "Anastasia" for the millionth time. It brings a smile to his face. I told him that if I pushed his nose, the movie would pause. So I pushed his little nose, and the movie paused. (He didn't notice that I was tapping the remote with my other hand.) Then, he pushed his own nose. The movie stopped. He B U S T E D out laughing. One more push on the nose–the movie kicked back in. More laughter. "It's maaaaagic, Papa!"

Is he going to end up in a therapist's chair over this in 20 years? I don't even care. It brought some belly laughs for both of us. He needs it more than he will ever know.

After the sleight-of-remote action, we popped over to Rachel and Clint Lukens' house to meet their five-day-old baby, Jonah. What a gorgeous little fella–can't wait for Pablo to show him the ropes! And his doting parents are much the same. I remember when they went on their first date. To see them today, bleary-eyed from lack of sleep, is just SO COOL! (Not that they are tired, but that they are now parents–yknow what I mean!) Rachel is one of my best friends in the entire world. She has been a ray of light in my life since we met over 10 years ago.

OK, time for dinner! Talk l8r.

Mike And The Bike And A Chat With Lance Armstrong

Jeff and Michael Ward this morning on Big Tujunga Road in the San Gabriel Mountains.

I woke up at 6 a.m. Pablo, Jo Ann and Grady were still asleep. Our second night in a row of good, solid sleep. What a simple gift. Seeing them asleep as I left our bedroom made me happy.

After eating a quick breakfast, I got on the bike and went out to meet Michael Ward at Travel Town in Griffith Park. Michael and I have known one another for about a year, and due to schedule conflicts, we've never ridden together. Michael is the guitarist in Ben Harper's band the Innocent Criminals, and has been in The Wallflowers and School of Fish (I was fired from my college radio show for repeatedly playing their B-side "Greatest Living Englishman," which unbeknownst to me, had a naughty word in it!) He is also the author of the great children's book "Mike and the Bike" - a fave of Pablo's. He has a new book coming out soon - "Mike and the Bike Meet Lucile The Wheel." Can't wait to snuggle up with P and read that one.

Anyway, when Michael got word of Pablo's cancer, he sent me a note saying the words we've heard from so, so many people: "Anything I can do, just ask." I had an immediate request of him: LET'S RIDE DUDE!

Getting out on a bike is like nothing else for me. It's a physically grueling cosmic cleansing–two things both Jo Ann and I need these days. For realz. I keep stressing that we've both been told by the doctors that need to be sound of mind and sound of body in order to make it through this marathon of Pablo's treatment. The bike does both for me. Jo Ann finds this with Bikram Yoga, which she is going to do in the morning. We are keeping one another going in this respect. Sometimes, we just want to lay on the couch And. Do. Nothing.

Back to mt ride with Michael: he and I immediately set it up for 7 a.m. Saturday. The destination was the San Gabriel Mountain range. We both wanted to hit it hard, and then get home to our families. I was really looking forward to this ride, and getting to know Michael better while as we pedaled our way above the clouds. We had a great time, telling stories, laughing our butts off, talking music and bikes and life.

We climbed to Red Box, the ranger station at the bottom of Mt Wilson. It's 4,666 feet above sea level. Just typing that makes me tired! Once we got there, we turned around and flew 15 miles down Angeles Crest Highway, dropping into La Canada. As we approached Foothill Boulevard, we pulled off at the Shell station - Michael wanted to pick up a drink.

As he stepped out of the gas station, he was on his mobile phone. I could hear him saying, "I'm riding with my buddy Jeff. His little boy is five and was just diagnosed with cancer."

He handed me the phone. I put it up to my ear, "Hello?" The voice on the other end: "Hey, this is Lance." It was that Lance - Lance Armstrong.

"Hey! How's it going?" I responded.

"I'm just messin' around with some bikes at my ranch in Austin," he said.

I didn't know what else to say (a rarity as you know). He is probably used to this.

"I hear your little boy has cancer. What's up? How can we help him, and and your family?"

He went through a list of detailed questions about Pablo's prognosis, what hospital he was being treated in, his treatment regimen, and who his doctors were.

"I've been to Childrens in LA a few times. That's a great hospital," he said. "You are in good hands."

He told me to seek out the head of Oncology at CHLA, Dr. Stu Siegel. "Find him and tell him you're my friend," he said. "And give your little boy a hug from me."

After we talked all about the treatment stuff, the only thing I could think to say was, well, the truth: "Hey, Lance, forget about all the bike stuff. I am such a fan of your foundation work and your dedication to helping other humans. My wife and I have decided to dedicate a part of our lives to this as well. I'm so honored to be speaking to you, and that you gave 10 minutes of your Saturday to me. Thanks."

With that, we said goodbye.

I wasn't sure what had just happened, except that I'd been hit by a jolt of inspiration and hope like I've never felt.

As Michael and I rode home, he said to me, "That's the thing about Lance Armstrong. He does that for people."

I could feel a clarity and power in my pedal strokes as we spun out the last 13 miles of our journey. I was buzzing from the current of Lance Hope I'd just been injected with. Michael, was buzzing with having put me on the phone with him. What a gift!

I couldn't wait to get home and give Pablo that hug. That hug.

I am still a bit dazed as I write this. Forgive me if I babbled.

A Goodnight Message from Mr. Pabtoe Himself

Take one look at these photos and you know we're having a good night tonight....

"Toe" is one of Pablo's fave words. And just look at how happy he is to see his toes in Papa's Photo Booth program!

Clare Crespo and her hubby James Chinlund and their cute-as-a-button daughter Ruby did a drive-by this evening to drop off DVDs of her new kids' cooking show "Yummyfun Cooking." The DVDs are hot off the press. She ran them over so her little friend Pablo could laugh. SO SWEET!

By the way, Pablo calls it the "Clare Crespo Show." And that makes him laugh. Seriously, he giggles his butt off when he says it!

Oh, wait–here is a message from our little trooper himself (he is typing everything after the colon, and requested rainbow type treatment on the first line):

asdfghjkl

pablo

OK - Papa is taking the reins again....

We want you to know that we can FEEL your love at 1830. All your gifts, phone calls, emails, meals and meals and meals and offers of support could fill the Silver Lake that looms outside our windows.

NIght-night. Sweet dreams to you and yours. More post-age tomorrow.

Introducing....NANA!

A giant note of gratitude has to be paid to Jo Ann's mom, Particia a/k/a Nana. She and Harry flew out from Houston immediately, and she stayed on when Harry flew back for work on Monday. Nana has helped us do soooo many things around here - rearranging rooms, cleaning the casa from top to bottom, staying up late with us and Pablo - all kinds of stuff.

Patricia brings a sense of security for both Jo Ann and me. Of course, she has the same effect on on the kidz! Her motherly/grandmotherly skill of organizing and simplifying things in and around our house is unparalleled in our lives. She keeps us calm, and keeps us laughing. Patricia was born and raised in New Orleans (she's fourth generation Louisianian!) and has a million Southern sayings and phrases. We LOVE it when she busts out a good one!!!!!  And she keeps us full of good ol' New Orleans Community Coffee. 

Nana is flying home this afternoon. She left a house full of contractors working on her place, and has to get back to check up on those dudes.

We will miss her, and look forward to her return at the end of June when she comes back for Pablo's surgery.

Bye-bye Nana! 

xoxo

Good Morning!

It's a good morning for us in Pabloland.  Which means we had a good night's sleep, without any sneaky fevers or calls to the hospital. Pablo woke up with a slight headache, but it went away when he at breakfast.  

No contractors scheduled for today. Grady's with us for the weekend. We're looking forward to a good, fun weekend.

Jo Ann's Rundown Of The Past 48 Hours

The past 24 hours has been tough.

I had every intention of going to my class last night–but as I was going to leave, I did one more check on Pablo and his fever had spiked... AGAIN.

Here's the basic protocol for an after hours fever: Call the on-call oncologist at the hospital. If there is a fever over 101 degrees, you need to get to the ED (Emergency Dept) and get checked out... They access the port, draw blood and start an antibiotic drip. The antibiotic is a 12-24 hour bacteria killer, and they like to follow up the next day with another dose. So, you call the urgent care department at the clinic in the morning and let them know about your evening, and they schedule you in for a follow-up.

In our case, on our Wednesday morning follow-up, we were not given an antibiotic because Pablo's fever had subsided and it had been deemed viral. They did the blood tests and all of his counts were good. They did a urine test (to make sure there was no infection in his kidneys) and everything came back negative.

By Wednesday night, Pablo's fever was back up - 103 degrees. I called the hospital and spoke with the on-call oncologist, Dr. Davidson. She was amazing and soothing, because at this point, I was a bit of a wreck...and being new to all of this, I was scared. She told us to prepare to come to the hospital, but give her 10 minutes to call our oncologist, Dr. Mascarenhas. She called back and told us we could stay at home and give Pablo Tylenol, but to call her if the fever continued. Of course, we didn't have Tylenol in the house and Motrin is not good for Pablo because it can affect his platelets (who knew?). So off the drugstore with my mom....

After Pablo's warm bath, we gave him the grape flavored goo which he resisted, but eventually swallowed down. He went to sleep in our bed and continued to cook. And, I mean COOK. My mom and I changed his drenched shirt three times over the course of a few hours. We woke
him to take another dose of Tylenol at 11:15 p.m. Pablo was so mad at me for waking him - he refused to take the medicine... and this is not like him - he crawled into my face and YELLED, "NOOOOO, I'm NOT taking it." Jeff and I stayed calm and cuddled him as much as he would
allow, and eventually he took the medicine. He went back to sleep on me and we slept soundly and warmly for the next four hours. Pablo woke up around 3:30 a.m., exactly four hours later and still with a fever... So one more dose, another wet pajama change and a trip to the potty and we were back in bed.... I got up with Grady and took him to school, arriving home as Pablo and Papa were waking. Pablo's fever did not go away, and we went back to the Urgent Care. They decided to give him the antibiotic again and do another round of labs. Again, blood levels look good...

As I write this, Pablo has a low fever. Dr. Mascarenhas is leaving town this evening for a few days, so he called to check in with us. He said that he feels that Pablo's fever is viral or that it could be caused by the chemo killing the tumor cells. I'm visualizing his strong boy lion body preying on and destroying those nasty cancer cells quickly and efficiently!

I called the on-call oncologist again and he wants us to keep an eye on Pablo's temp again this evening. If Pablo's fever doesn't break by tomorrow morning, we may be back at Urgent Care.... Today, I asked them if we were the first family to be there three days in a row and the nurse smiled and shook her head, "No, honey..."

Somehow, that put me at ease....

Sending so much love and gratitude to our army of supporters out there....

xoxo,

Jo Ann

Scrubbing Hands And Air

For a little body going through chemo, germs are a serious matter. The more we can keep Pablo away from colds, flus, etc, the better. For the rest of us, getting even a tiny cold could diminish our energy and our ability to contribute around the house. And would put us on a quarantine from our little dude. Not happening!

Of all the changes that've taken place around here in the past 12 days, the increased presence of sterile stuff is the most noticeable. Every room in the house now has a portable HEPA air purifier whirring in the background. There are hand sanitizers, bleach wipes and face masks of all stripes all over the house and in our cars.  

Today, I had the boys from Precision Air over to install a massive HEPA filter on the main air intake for our HVAC system. The thing as a nine-inch-thick HEPA filter AND a UV light to blast germs before they enter the ducts. This thing is straight outta NASA's Jet Propulsion Laboratory up in La Canada.We are not messing around up in this piece!

Meet Matt Solodky, The Cap'n Jack Of HMS Dangerbird

Matt was our first employee at Dangerbird, back in 2004. He started out as my assistant, and has worked his way up to head of marketing. On his first day, I was headed to Chicago for an extended period, to be with my brother, Scott. Pablo's cancer is vastly different from what Scott had, but let's just say Matt's been through this with us before.  

For years now, my partner Peter and I talk to Matt a hundred times a day. He works with Jo Ann on all our videos.  He has seen Pablo grow from a six-month-old baby, and Grady from a fourth grader; 19 days ago, he saw the birth of Peter and Brie's beautiful boy, Lennon. Matt is as much a part of O.G. Dangerbird as the crane we fly on our flag.  

Peter and I view Dangerbird–the staff, the artists, the companies we work with–as family. It's not just a word to us. It's a living, breathing reality. At times like this, we actually feel that family thing kick into high gear.  With Lennon coming into the world exactly a week before Pablo's diagnosis, things have been, well, eventful around our office lately! Knowing that Matt is the Captain Jack Sparrow of HMS Dangerbird is a sweet, sweet thing. 

Oh no! Pablo's got the camera!

Pablo is famous for snagging the camera, and shooting pics of the dogs, Mommy's butt, the walls–all kinds of stuff that's at his height. And there are always, like, a hundred pics of each item he shoots lol!

Last night, he added to his repertoire photographing his movies on TV!  A snap from his first exhibit is above. It's from "Anastasia." Hilarious! 

Headed Back To The Hospital

Pablo woke up with a temp of 102.  Jo Ann called the docs at CHLA, and they want to see him again.  This will be our third time there in 30 hours. Whatever it takes to keep our little trooper safe and healthy.

The docs want to check him out thoroughly, in person, to be sure there's no infection in his body. Infection in a cancer patient, especially a pint-sized one, is not good. Period.

OK, keeping it short for now.  Will post more from the hosp.

Grady's First Post!

The first paragraph is what I think about this whole thing, and the second is my perspective on what happened last night.... Check it out!!

This whole experience has been a life changing and informing experience of my life and of many others as well. Although I will probably have a lot more of these adventures and downfalls to come, I have learned how to react, explain, and to comfort, in this case, Pablo. You would be surprised how brave this little boy has been, and is. This dilemma has been harder, I think, for us, the family, than it has been for him. Maybe it's a lesson or a warning for us, but I am living in the present moment and that's where I am staying and worrying about.

On Tuesday night I was sleeping on our couch upstairs (Nana was sleeping in my bedroom). I went to sleep around 11:45. I was awoken from a deep sleep at 12:45 a.m. by Pablo, who was saying, "NO NO, I am still sleeping–STOP!" I thought Pablo was just getting his medicine, and it was nothing to worry about. But then I heard Jeff (Papa) saying, "Get your shoes on Mommy and Pablo–quick." That is what drew me out of bed, to ask, "What's wrong and where are you going?" (I was still 3/4 asleep.) What i heard was, "high fever" and "hospital." The next thing I knew, that they were gone and I was standing there, still trying to process what they were saying as they left. (I stayed home with Nana.) I went back to sleep and was going in and out of sleep about 20 minutes at a time.

Around 3:30 a.m. I saw Pablo's face appear above me. He said, "HEY, WE'RE BACK. COME EAT BREAKFAST!" So I got up and had a little midnight snack with my bro and Jeff (Papa). Jeff asked me to find myself a ride to school in the morning without waking them up. I succeeded in that task, thanks to our dear friends the LaSalles lol!!! YEAH!!

Random Shots From The Family Album

Not much new to report mid-morning. Pablo just woke up. He slept very well after getting home from the hospital. His temp is 100.7. Good thing we're headed back to the Oncology Clinic at 1 p.m.

This is a family fave. We call it Yoga Toes. What else would you call it?

Is this one called Bubble Beard? Or Soap Beard? Whatever, this one helped us get into Pasadena Waldorf School for sure.

First day of school this year. September 2007. On the roof at Dangerbird HQ. Why don't they make shirts like that for adults?

Ready to ride with cousin Isabella in Chicago, summer of '07, outside Intelligentsia on Randolph Street. We were there for Lollapalloza. I swear we saw Lance Armstrong riding on the Lakefront bike path. It was hard to tell, cos we passed him so fast....

Clinic Appointment Set for 1 p.m. today

Jo Ann just woke up, grabbed the phone and called the CHLA Oncology Clinic.  We need to bring Pablo back in for a follow-up to last night's fever.  

The appointment is set for 1 p.m.

I am going into the office today for the first time since all this started.  Gonna get there early; I've been on email for nearly two hours already, so I've hit the ground running. I'll make my way to the hospital, for 1:15 or 1:30.  Our office is in Hollywood, just two miles from the hospital (CHLA is the exact midpoint between office and home).  I've never been happier about my proximity to that hospital or home.

Man, it would be great if CHLA offered monthly parking passes....

More later. 

1 a.m. In The ER

Jo Ann came to bed just before midnight.   Pablo and I were down for the count, but I woke up when Jo Ann came in. I could feel the heat emanating from Pablo's body when I woke. Jo Ann felt him, and noticed the same. She grabbed the thermometer and popped in his sleeping mouth. He was 101 degrees.

They have drilled into our heads that fever is very serious, that we can't take a wait-and-see position, and even a small fever is a fever. We have been instructed to call the hospital and speak to on-duty oncologist in the event of even the slightest temp escalation.

Jo Ann was knee-deep with the doc in seconds. Still in bed, in the dark, I could tell something was up. I could hear her reciting our surname one letter at a time. This was our first fever call; in the back of my mind, I think I was hoping the doc needed Pablo's full name to fill out some paperwork, to document the call.

I was wrong.

Jo Ann hung up the phone and rushed into our room. "We have to get him to the ER right now," she said. "The oncologist is calling us in right now." (This is significant, cos the last thing we want to do is sit in the waiting room. It's nuts in there.)

We got dressed in seconds. Splitting duties, Jo Ann woke Pablo and got him upstairs. I ran up and grabbed the keys, the medical binder that J and her mom, Patricia had finished an hour before, and P's Lidocaine, the creme that numbs the skin on top of his port. Jo Ann applied it in the car on our five minute drive to CHLA.

We caught every green light down Silverlake Boulevard, and up Virgil Avenue. It was right out of a movie. Did I mention we got the CHLA in five minutes flat?!

So, here we are in some off-the-path room in the ER. It's cool, though, cos it's a private room with walls, as opposed to a "bay" separated from other patients by a curtain.

When we got here, a familiar face greeted us. It was the Stephanie Valenzuela, the nurse who worked with us the night of my birthday, when we first arrived here to have that bump looked at. That was before we officially became a Cancer Family.  Seems like a year ago. In reality it was 11 days ago.

Stephanie is one of the many wonderful, gifted people we've come in contact with here at Childrens Hospital.  She has a light in her eye; we feel that she truly cares about Pablo; it's more than a job for her.

It's funny how in life, we look for restaurateurs, craftsmen and contractors, shopkeepers, et al who have these same attributes. Entire magazines are devoted to finding the most "authentic" food and furniture joints. Nothing wrong with that.

But as we sit in Room T4, I'm thinking, the people who make up this hospital ought to have a mag dedicated to them. They make this place more than just a building, more than an institution. They give it heart, and they take away the mystery that can often put fear and that special type of loneliness into the patient and parents. 

On a lighter note, Pablo's meds have been administered-900mg of Ceftrixone-and we're chillaxin for another 30 minutes, so they can be sure he's OK.

Jo Ann is cracking up, doubled over, laughing at my hair. Not surprising. Yesterday, Fred and our friend Bryan Erwin were debating whether I had a "Beethoven" or an "Amadeus."

Maybe you'll agree that my locks look insane. If you laugh, I'm OK with it. Here's a pic from Jo Ann's Blackberry:

Jo Ann is still cracking up. We can see Pablo's smile from behind his mask. His eyes are lit up. "I like the grey in your hair," Jo Ann says.

"I like the black," is Pablo responds, laughing hysterically.

It's 2:30am and we've gone from racing through green lights to laughing about Papa's kooky hair.

What a difference 90 minutes makes. Have a feeling we're gonna get used to this.

GRADY'S HOME!

Our boy, choosing tonight's movie selection off Apple TV–world's greatest invention for a child in Pablo's shoes.   Please note the Third Eye eyepatch, part of his pirate treasure box gift from Peter, Brie and Lennon!

Grady's home from his weekend with his dad, Jimmy. When Grady's away with his Poppy, Pablo kind of becomes an only child, and then switches back to his role as the little boy with an adoring big brother who is nine years older than him.  It's fascinating to see the excitement in both boys when their paths rejoin after Grady's long weekends away.  When I came home this afternoon, they were snuggled up together on the sofa.  Life doesn't get much better than that, for them or for us.

This afternoon, this evening....

After a brief appearance at school, for circle time and to sing along with Carole, Pablo took a nap for a few hours.  He is a bit warm, but nothing to worry about.  Dinner went down well, and all his body functions (if you know what I mean) are working well.  We have to take note these simple, ordinary things while he's undergoing treatment.  When Pablo announces he has to go potty, we all cheer.  Two weeks ago, that would not have been the case....

Picture time!

Pablo's so stoked to hang with his bro, I even got him to take some pix!

The dragon and the crane.

The dragon runneth.  "I'm outta here, Papa. No more pictures!  Note Grady's strong Waldorf Eurhythmy skillz–he didn't move an inch!

When Pablo heard G and I laughing and loving the pix, he ran back in for a look-see.  He ALWAYS does that lol!

Chemo Treatment #2 Is Ouuutttttaaaaa Here!!!!

Pablo at Santa Monica Beach a few months ago.

Chemo treatment #2 is knocked ooooouuuuuuttttttaaaaa the paaaaaark!!!!! Only 16 more to go!

Today's Oncology Clinic visit.

It was cool to see Dr. Mascarenhas our oncologist.  He is a sweet, gentle man, who has a way with children.  It feels good to see the goodness in all the people who help us at the hospital. Feeling their care and expertise makes each minute in the hospital so much easier. 

The doc checked Pablo over–vitals, nodes, tummy, etc.  All good.  He did a rough external measurement of the big tumor using a paper tape measure over the skin of Pablo's belly. Though it was an approximation only, he felt that the tumor was smaller.  And it felt tougher to him–exactly what he was looking for on both counts.  Jo Ann and I both felt that the bulge looked smaller as well, even though neither of us had said it to the other until Dr. M. measured it.  We have both been trying to avoid hype talk, opting to stick with learning and becoming conversant in the facts of Pablo's disease.  So far, it's feeling good.

Let's talk about chemo.

Chemo.  Everybody knows the term.  We talk about it, hear about it all the time when someone around us has cancer. It's this miracle drug that makes the patient feel yucky and rips through the body like a freight train.  A necessary evil that can hurt as it helps.  Until you find yourself in a situation where you're exposed to what chemo actually is, it's just this mythic thing.  In our case, we didn't know if chemo meant he'd be hooked up to a machine, how long it would take or what it looked like.  (When my bro was sick, I was not in Chicago on his chemo days.)

In the spirit of sharing our experience, strength and hope–and the sights and sounds of our this whole game–we thought it'd be helpful to show you exactly what Pablo's chemo looks like.  

The picture above is a vial of the famous treatment.  The one on the left is Vincristine, the actual chemo drug.  That little tube took about 5 seconds to upload into Pablo's chest port.  Not bad!  It didn't register a reaction from him at all.  He said he couldn't feel a thing.  The tube on the right is Heparin, an anti-clotting medication, which is given after any use of the port to avoid gunking up the line.

School today?

We are eating lunch, talking about the idea of Pablo going to school today.  If he goes, it'll be a 30 minute hang, not a full day. Carole, the music 'n' songstress of Walther, is at school today. Music and friends–and a shot of normalcy in this unusual time–will be very, very good for Pablo!

We'll keep you up to date on this.  See you later!

Off To The CHLA Oncology Clinic

Good morning.  A short post: we are off to the clinic for Pablo's chemo treatment.  It's all we've been able to think about since leaving the hospital.  We just want to get the show on the road.  

As always, Pablo is in good spirits this morning.  When we told him we were going back to the hospital, he was not happy.  

"But I don't want to go back there," he said.  Totally get it.  

And as always, Jo Ann put it in suuuuuch a great way to him that he was all smiles a moment later.  She told him, in a simple way, that the medicine was going to make his bump go away so he could play as hard as he wants to very, very soon.

He got that!

OK, more later.  And, as long as the boy allows it, we'll have pix later today.

Pirate Takeover On The Rocky Waters Of The Silver Lake

Pablo channeling Johnny Depp channeling Keith Richards. Thanks to the Gevrikyan family–Hrach, Nevrik, Matthew and Angela–for the Cap'n Jack Sparrow tricorne 'n' dreadlock combo. It was an instant hit with Pirate Pablo. Hrach owns Velo Pasadena, Papa's beloved bike shop, where Pablo speeds around 4,500 square feet on any training wheel bicicletta he wants.

In fact, just hours before his diagnosis, Pablo was cruising around on a killer Specialized dirt bike with yellow lighning bolts on the seat and crank.

A battle is won on the rocky waters of the Silver Lake. Jolly Roger is hung from the mast of HMS Play Structure.

Pablo can't get enough of Fred Gillich. Plain and simple. We will miss our dear friend Alfred after he leaves this evening. We'll catch up with him in Milwaukee this summer, or back here in LA. To get a glimpse inside Fred's dome, check out his pop culture blogospheric apparatus, thechignon.com


OK, we're off to bed. Sweet dreams. Buonanotte.

Mommy And Papa Go Outdoors

Pablo has put a moratorium on photos–he's over having his pic taken!

So here are some shots of Jo Ann and I getting our physical fitness in this morning, in preparation for tomorrow's chemo treatment. It will be our first time going into the oncology clinic for outpatient chemo treatment, so we have no idea what to expect during and after. Tuesday is going to be allllll about Pablo–his comfort, his heart, his need to snuggle... Not too much different than every other day, but you know what I mean.

BTW, before we get into the pix: we are having a great Memorial Day. Clare Crespo dropped off etouffee for dinner. How INSANE is that? Can't wait.

OK, the pix:

Jo Ann and Dorrie at the Silverlake Reservoir

J and D with Chili, our yellow lab, and Beans, our flat-coat retrieverdoodle. Both dogs hail from New Orleans.

Self-portrait from the road. Thought about looking H.A.R.D. Ultimately, I decided to smile. I was happy in this picture.

Climbing this mountain is a helluva lot easier than what Pablo's going through. This thought made my ride so much easier.

My shadow self.

Misty Mountain Hop

It has felt strange leaving Pablo. We've talked about that.

I normally ride my bike 250 miles a week, and Jo Ann does Bikram yoga every day. In order to get in the kinda miles I like to do, I have wake up early, to create more time in the day. Don't want to be away from my family unnecessarily.

This morning, I'm up early. In a moment, I'm off on two wheels to Angeles National Forest. If you know that area this will make sense; if you don't, now you know: gonna ride from our house in Silverlake to Sunland, climb all he way up Big Tujunga, to Angeles Forest Highway, to the Clear Creek Ranger station, and then drop down Angeles Crest in La Canada and home. Will snap some pics along the way for posting later.

Jo Ann and Dorrie LaMarr are going out to walk to Reservoir at 8:45am. Exercise, the doctors have stressed, is going to help us physically and mentally. It's SO hard to get out and do anything. But, tomorrow is treatment #2, so we need to get rockin today.

Last night, feeling a bit odd about going out for more than an hour, I asked Pablo if he'd be OK for me to go. He said yes, "As long as you brush your teeth. I never see you brush your teeth before you ride."

"But, Pablo," I responded. "You're asleep when i go out early in the morning."

"Oh yeah. But, Papa, just brush your teeth."

See you later.

Pablo And His Ladies

Jo Ann found this captivating photo late last night.

Polly, Pablo and Mira O'Brien, Pablo's babysitter prior to Polly. Mira retired from munchkin duty to go to Yale grad school for painting. One of her paintings hangs in our TV room (I'll post pix later). She graduated this month, and we're hoping to see her sooooooon!

A Discussion With Susan Baxter, Childhood Ed Specialist: Kidmunication, Art, And When To Take Shhhh As An Answer

Susan talks about letting our kids express their feelings through art. This afternoon, we received this beautiful expression on our doorstep. It arrived with a basket of organic strawberries. We send a missile of gratitude out to our strawberry fairy! If you want to ID yerself, drop a comment!

Jeff has asked me to contribute my thoughts to this fantastic pablog and I am happy to do so.

I was talking to Jeff yesterday about the last week's journey and the road ahead. While we were talking, I was watching Pablo hop around on the couch with Fred, living in the moment. That is what 5 year olds do. This is not to say that Pablo is not tuned in to the shift in mood, experiences and his health over the last week. What he is not doing is worrying about the next few months; 5 year olds do not do that. They are still sorting out the ideas of how today, yesterday tomorrow and in a minute works. The other part of communicating with a 5 year old is they are really smart and can memorize and repeat everything we say (even the don't- repeat -that -in –front- of- my- mother-in-law stuff). Just because children can repeat what we tell them, it doesn't mean they understand what we mean.

In child development one of the ways we gain better insight into what a child understands is by examining the child's art for direction and understanding of what he or she is really thinking. When children are going through challenges of any kind their art can often guide you to understanding their perception of something. Their art often reveals their fears, their wishes and the most important things in their lives. I remember when we had a kitten die at birth; my son was 5 at the time. The next day, he drew a picture with the mother cat, the live kitten and the dead kitten in the picture. The mother cat and living kitten were walking along the ground catching a bug. The dead kitten was with them only was in the air with a halo and wings flying above the mother cat, catching a bug. This told me what he understood that the dead kitten was an angel but still did things like the living kitten and was part of the family. Another way we have used drawing is when 2 of my children were having nightmares around the age of 4 and 7. I asked them if they would like to show me what the monsters looked like by drawing me a picture of the scariest part of their nightmares and they both drew these hideous monsters. We took the pictures and told them we didn't want them in our dreams any more and threw the pictures into the fire. The nightmares stopped. The children felt powerful.

There are other ways that we can tap into young children's thinking process but, their paintings and drawings are easy to accommodate and you can take the supplies anywhere. I recommend that children come to the art as they wish. There is nothing wrong with inquiring if they would like to draw pictures with you or say for example "let's draw a picture of a time in the hospital." If the child does not want to, then just leave it alone. When a child does do a picture and you want to find out more information it is typical to use phrases such as, "tell me about your picture" or maybe "I see you have lots of red and blue can you tell me more about that." Stay away from the standard question "What is it?" That is just irritating! I know it sounds like this stuff is right out of a parenting manual but the deal is you need to make it your own and not like you are giving your child a teaspoon of medication. This is about building a relationship through seeing your child from their point of view, not about a clinical diagnosis. Whatever they draw or paint is their truth and their reality. It is their perspective and needs to be honored as such.

And so that is my little bit of whatever it is in support of Pablo's healing.

Peace, Susan

Meet Polly, The Fifth Member Of Our Family

Polly Harrison, our beloved babysitter, and a constant source of light in Pablo's eyes, was planning to move back to Sacramento at the end of June. She has been with us for almost two years. Polly works with us part-time and works for another family in Pasadena when she's not with us (which is quite a lot of hours).

On Sunday, I asked her if she could talk with her other family and see if she could scale back her hours with them and come on with us full time until she leaves for Sacramento. She had the whole thing worked out in minutes.... Knowing that Pablo's treatment would be a long-term scenario, I started to feel the weight of Polly's departure and how it would affect Pablo's spirit (he asks for her every day). I asked her if there was any possiblity that she could push her move for one month. Again, within moments, she agreed to stay in Los Angeles and changed her life plans to accommodate us and be with Pablo. Geez–really...how blessed are we?

One funny anecdote about Polly is that her fave band is the same as Jeff's: The Smiths. Two of Jeff's former management clients play in Morrissey's band; a few months ago, when the Moz played the Palladium, we felt t e r r i b l e asking her to babysit so we could go to the show. A total Cinderella story. We were going out to the last night at the fair, and she was stuck home, working. But just like that old fairytale, it all worked out. We laced her with tix for the next night, and she got to reel around the fountain.

Pablo's Self Portait

The set up: Pablo. A camera. Mommy and Papa's bathroom mirror.

Specifics on Pablo's Treats OR The Chemo Barista, The White Blood Cell Drop and The Seven Nation Army

Left: The Chemo Barista.
Right: White Blood Cells, by The White Stripes. Read on to unlock the mystery.

Hi everyone. Another post from Jo Ann (with a little sprinkle of Jeff), covering the background on Wilm's Tumors, and the spec on Pablo's treats-ment.

Pablo's treatment and schedule: After we had our CT scan to see if there was any cancer anywhere else and it came back clean, we decided–with or oncologist, Dr. Leo Mascarenhas and a nod from Dr. Michael Jensen, the head of pediatric oncology at City of Hope (who is parent at Grady's school)–to start Pablo on chemotherapy treatment right away. Everyone agreed a biopsy was pointless. It would prolong the start of chemo. And the docs knew what he had, so there was no need to put his little body through an invasive surgery and recovery at that stage.

This is what I know about Wilm's Tumor: there are two kinds: a good one and a bad one. The good one is the most common. Wilm's Tumor can be found on only one kidney, or it can be bilateral - both kidneys.

Bilateral is rare, and THAT IS WHAT OUR PABLO HAS. Of all the bilateral Wilm's Tumors out there, it is extremely rare for bilateral tumors to be the bad ones. The docs kept stressing they didn't want to talk about Pablo as if he were a number (ie, getting into statistic talk). But some of the stats are welcome and helpful. One of the key metrics in the Wilm's game is that almost all of the bilateral tumors take to chemo like a champ. This is a simple goal post to hang onto when thinking about Pablo's condition. SO - we are moving forward as if his tumors are the good ones.

This is our best case scenario and we are asking everyone to hold that in their daily prayers, meditations and thoughts.

Our treatment plan:

• Chemo for six weeks. This Tuesday will be week two.

• CT scan on June 26 to see that the tumors are responding to the chemo.

• If that checks out, we will head into surgery to remove BOTH tumors and save as much of BOTH kidneys as possible.

• Then, we follow up with 12 more weeks of chemo.

The actual chemo cocktail: is a combination of Vincristine and Dactinomycin (Actinomycin-D).

Vincristine = V
Dactinomycin = A

EVERY WEEK: Pablo takes V
EVERY THIRD WEEK: Pablo takes V and A

This is the national (and possibly international?) protocol for treating Wilm's Tumors. Not a lot of trial-and-error or theorizing going on with this cocktail. As we have written before, Wilm's is one of the most heavily researched and most successfully treated forms of cancer around. Dr. Mascarenhas is confident in his cocktail. He is pullin shots like a mad-skilled barista, and we are confident he's got our order right. Also, compared to the drugs given for other kinds of cancer and to adults, this protocol is pretty tame. It is regarded as minimally invasive. It will not render any long-term effect on Pablo's physical body or his organs.

During the treatment cycle, the A drug will be very tough on Pablo's body. He will need to become a seven nation army to fend off its gnarly effect. A will wear down his white blood cells the way Jack White wears down his fingertips riffing and rawking. There's a chance we'll have to wear masks around the house, and visitors will be off limits. Our hearts are hoping that this won't be too hard on Pablo. On the logistical and mental front, we're prepared for all this simply by knowing it's a possibility.

Where will Pablo receive his treats? He will receive chemo as an outpatient at the CHLA Oncology Clinic EVERY Tuesday. So, we are planning for very quiet Tuesdays and Wednesdays over here in Silverlake!

A Message From Jo Ann!

One week... Dang - one heck of a week.

Jeff has been asking me to write something all week and I have just been having such a hard time. I do not have that gift - writing... I've got the gift of gab... always have, even before I kissed the Blarney Stone. But, I do have the mommy's perspective on this past week––and I want to share that.

On Saturday May 17, Jeff and I did what we call the "divide and conquer." Jeff went on his big 75 mile Saturday morning ride and I hung out with the kids.... We hooked up in Pasadena, where Jeff and our friend Tony Hoffer grabbed Pablo; Grady and I headed to Sierra Madre to WORK. That's right... Saturday was Grady's big music video shoot for his 8th grade project (he finished the edit two nights ago–we'll be premiering the vid in a few days here on the Pablog).

Grady chose The History of Music Videos and MTV for his written report and chose to direct a music video for his artistic element. Early in the school year, he asked our good friend, Scott Henriksen (cinematographer extraordinaire), to be his mentor...and Saturday was the day for Grady to head out with his A-List DP to shoot his friends' band, The Conscripts (temporary name). I can't even get into how much fun we had shooting. It was awesome... Grady and Scott were a great team!

After the shoot, we came home for a quick change before heading out to Jeff's birthday dinner at Malo. As soon as we walked in, Jeff asked me to look at Pablo's tummy. My reaction was instant. I know Dr. Fleiss' number by heart, so I grabbed the phone and paged him. Then, I called our dear friend Brie Grousbeck – she is the wife of Jeff's business partner, Peter Walker, and is also a DOCTOR! She had just given birth days earlier to their gorgeous son, Lennon. I started describing what I was seeing on Pablo's belly. She spoke to me in her usual amazing, calm way. Whatever she said, there was something in her voice that told me to get in front of a doctor right away... Fleiss' office beeps in. It's Miriam, Fleiss' nurse-practitioner. Within five seconds she's telling me to hang up and stay by the phone for Dr. Fleiss. Seconds pass and Dr. Fleiss calls. It's quick and I'm told to meet him at his back door in 15 minutes....

Jeff takes Pablo to the doctor's office. I took Grady to Malo, where 35 people are meeting us for dinner. The rest of the evening is a blurry-eyed, nauseous haze. I can't eat. I can't think. I can't talk. I leave with Pablo and get to Childrens ER. Now, if any of you have ever been to the ER at Childrens on the weekend, you know–it's overflowing with kids and their families needing medical care and you can expect to be WAITING all night. Fleiss had called us in and we were whisked through all of the steps - and in an ER room in 15 minutes.

This was making me crazy - because I knew that it could only mean one thing - something SERIOUS was going on in my baby's body. Jeff got there within minutes and remained calm, cool, collected. Pablo was cuddling and sleeping when he wasn't being poked and prodded and I was a mess. No one would give a diagnosis without a scan, but the word tumor was put out there and the word cancer was put out there. Once we had the CT scan and the Wilms' Tumor diagnosis was given, Jeff had his breakdown and I became Mama Bear. "This is my baby and he will be OK. We just need to get information and get a game plan!"

The rest of the hospital stay is outlined in Jeff's posts and the only thing that I can add is how completely blown away we have been by the outpouring of love, thoughts, prayers, wishes, physical HELP, etc....

xo,
Jo Ann

Anyone can post

a comment now. you don't have to have a google account or any other blog account to send my main meng, jackton sparrow, some lovey lovey comments on the posts. GO FOR IT!

Pablo's In Kyoto, We're Watching 'Singles'

Pablo is spending the night with Nana and Boo at the Kyoto Hotel downtown (formerly New Otani). Jo Ann and I are hanging at home with Fred and Polly, Pablo's nanny, watching "Singles" on Apple TV. It's a big night for Pablo. He's seen his big bro Grady go off to the fairytale land of hotel hot tubs and room service for years. Whenever Jo Ann's parents are in town, we know Grady's packing his bag. Now Pablo's getting a piece of the action. The little gremlin taking up temporary residency inside him tummy was not gonna squash his excitement for the hotel rendezvous with Nana and Boo.

Under normal circumstances, we'd be just as excited to let the 'rents take over on kiddie duty for the night. Tonight was not so easy. I had a hard time agreeing to it. Our snuggly nights in bed with Pablo have become ever more important to me, and to Jo Ann. More than that, we just want to be with him all. the. time. I went for a bike ride today and didn't stop regretting leaving him.

Anyway.... soon, after the initial intensity and focus fades away, and we get into the swing of things, we'll be grateful to have had this night off. And we'll be glad that we green lit Pablo's away night with Harry and Patricia. It's just...so...different now.

Everyone keeps reminding us we're running a marathon, not a sprint. We just don't want this experience to turn into some 'Loneliness of the Long Distance Runner' stuff. All the help that all YOU are giving us right now is helping to pace us as we get into this phase of life. What we're working on today and tomorrow is sorting out the house, particularly to make the areas Pablo will be in as comfy and clean as possible. Still, it's strange and odd and more than anything I keep thinking that any minute I'm going to get a glass of cold water in the face and somebody is going to wake me from the dream. I often don't know how I feel until I write. So this blog is helping to keep me sane and decompressed.

On 'Singles': Nobody has mentioned it, but kickin' it old skool is strangely comforting to all of us. I know it. This movie is a walk down memory lane for all of us. For a start, my bro Dean and I had hair like Eddie Vedder in the '90s. I was a music journalist back then and interviewed Ed twice before the debut Pearl Jam album came out. In fact, the first time I interviewed him, I walked into a sound check b-ball game with: Ed and Jeff from PJ, Billy and James from Smashing Pumpkins and Flea and Anthony from Red Hot Chili Peppers. That was ill. OK, back to the moooveee talk: Cameron Crowe is so cool; he nailed it in this pic. Dillon's character carries the angsted out ego blubber of so many singers. The soundtrack is flawless. Some of the best songs ever by Pearl Jam and Smashing Pumpkins. The Paul Westerberg score and theme song still gets me. The script is a highly stylized version of how things really were back then. Seattle was a lot like Milwaukee. Lots of bands, lots of beer, lots of apartment building life. And lots of old time analog courtship. Picking up chicks before cell phones, text, voicemail, email, and–ahem–blogs. Those were the days. People actually had to tawlk.

And take it from me - none of the actors look any older nearly 20 years on. In fact, Jeremy Piven (he plays the drug store check out guy–remember?) actually has more hair now than in this flick. Matt Dillon has clearly made a pact with the devil. Oh, and now we know the guy who was viciously making out with the chick in the cafe: Paul Giamatti.

OK, with that Giamatti makeout image in your head, I have just two more words for you:

1. Gute
2. Nacht