Monday, September 29, 2008

Radiation Is Over If You Want+Pablo Pic Post

At 8:30 a.m., we walked out of the radiation oncology lab for what we hope will be the last time. Radiation is over! The only thing that will bring us back to that location is to visit our friends who work there. From our first day there, they treated Pablo like family. Even today, when he and I were inadvertently 30 minutes late for our appointment!

Our work is not done though. At 7:30 a.m. tomorrow, we will start the multi-hour process of a GFR, a kidney function test that goes down in the Nuclear Medicine lab at CHLA. After that, we see Dr Mascarenhas. He's going to check Pablo out, to be sure he's ready to start the five day in-patient chemo treatment that's scheduled to begin Wednesday. We will check into the hospital Wednesday morning, and if everything goes to plan, we'll be on the way home Sunday or Monday.

Meantime, check out these cool Pablo pics that Grady and Polly sent me today:


Never one to walk when he could run, Pablo can ascend the stairs in a few swift strokes. Photo by Grady.

Polly caught Pablo reading the morning paper the other day. How adorable are these pics? Note: these shots are not staged.

Sunday, September 28, 2008

...And After All You're My Pillow Wall

We've had a totally relaxing Sunday. When Jo Ann got home from mass, we put another hour into weeding through the books and toys and miscellaneous human artifacts that came out of the play room of old. Following that, Grady and Jimmy went to play basketball, and the rest of us brunched at Town and Country on Sunset Boulevard. Pablo excitedly agreed to go, stipulating that they should have strawberry jam for his pancakes. He ate well, and kept it down. These days, it's not enough that the food tastes good; it has to remain in his G.I. tract in order to get a full-star review.

After brek, P donned a face mask, and I took him and Mommy next door, into our new building. I wanted to show them what Peter and I have been up to with all of our meetings and appointments at the mysterious corner of Sunset and Lucile. Jo Ann was pleased to see the progress. Pablo was pleased to see a hundred things he could jump off of.

From there, we drove to the charity resale shop of LA, Out of the Closet, to drop a load of books 'n things. Then we zipped over to Eagle Rock to deliver a chandelier to Carrie and Dan and made our way home. When we got home, Pablo and I shaved our heads. His short hair was starting to thin and bald spots were beginning to appear. I had a two-week-old mohawk—which is about as long as a 36-year-old dude can rock such a look. Plus, I have a meeting tomorrow afternoon with a prospective management client. You know, it's hard out there for a pimp, and I don't want to blow the vibe of the meeting looking like some sort of a diet punk Travis Bickle.

In a few minutes, Clint and Rachel and baby Jonah are bringing dinner over. They live directly across the Silverlake valley—we can see their house from ours—so when they sit with us at the dining room table, they can eye their crib. Last Sunday, G and P built this impossibly huge wall of pillows in our stairwell. When it was completed, they screamed through the wall, up the stairs, to get our attention. I walked halfway down the stairs, my eyeballs popped out of my head and all parties on both sides of the wall erupted into laughter. I want to convey that in the past eight days—since the close of Pablo's pain-laced tummy-tastic abdominable snowman period—we have had some serious fun around here.

Here's a pillow wall photo:

...and video:
video

In an organic way, Pablo and Grady have caught up on months of missed play and laughter. It's worth noting that Pablo does not openly yearn for his old ways of play in the back yard, at the park at bottom of our hill, and at school. He has found new ways to exercise his mental and physical muscles—namely games, reading and physical props like swords, knight vests and ships.

This morning, P and I played multiple games of Candy Land (he creamed me every time). Polly plays countless games with Pablo every day. When you play a game with Pablo, he sort of narrates the proceedings, offering up spicy commentary on his moves and yours. It's hilarious and adorable. I often hear Pablo's newest terminology while playing a game with him. A few months ago, he called me a 'sassy freak' during a game of Uno. The final point I want to make is that Pablo, like his older brother, has inherited Jo Ann's perfect balance of gaming skill, luck and shrewdness. I posses none of those characteristics and often play the role of witless opponent.

A look at the week ahead:

Tomorrow is the final day of radiation (can I get an FFFFFF yes?!). We have an appointment with Dr Mascarenhas on Tuesday, and a test or two. We're expecting to be at CHLA most of the day. Wednesday, we turn ourselves in at the front gates of CHLA for a six day (minimum) stay for chemo. Jo Ann will write a post with the details on what will be pumped into P's body during that time, and why we'll be there for so long.

Hope you are had as much fun as we did this weekend....

Saturday, September 27, 2008

Saturday Night's Alright

It's hard to write this post, and not for the usual reason. The culprit tonight isn't cancer, or emotional drain, or anything to do with Grady or Pablo. It's Chris Rock and his new HBO concert special 'Kill The Messenger.' I turned it on, and, at the same time, being a full-blown multi-tasking addict, I reached for my laptop to write while laughing.

I figured the show would take a few minutes to get up to speed, and that I could crank out a quick blog entry before the fun kicked in. I was wrong. 10 minutes in, I had written exactly zero words. Chris' rapid-fire commentary on everything from safari guides to Sarah Palin (the only diff is that one kills the animals) had me doubled over from the opening line. 15 minutes in, I turned it off. It felt great to laugh. It'll feel even better to do it with Jo Ann. She's going to join me after she puts Pablo down for the night. Then we'll get into some serious business up in here.

Earlier this evening, I went for a bike ride with Peter. Afterward, Jo Ann and the boys met for dinner at Michelangelo, a neighborhood staple that recently relocated from Silverlake Boulevard to Rowena Boulevard, a few minutes from our house, at the end of the reservoir. Grady's been going to this spot since it opened in '97. Pablo's been hitting it since the '0-3. We haven't been there since they moved. The food was better than ever, and the new location looks and feels great. We're happy for the three brothers who own it—they lost their lease and, last time we saw them, were on the verge of shutting for good. It's cool to see the good guys persevere. Pablo at spaghetti and meatballs and a slice of bread. He ate well, and, so far, has kept it down.

This afternoon, Cassiel came over for a play date. He and P had a fun-filled day while his mom Tracy and Jo Ann chatted and made lunch. It was wonderful to see Pablo hanging with someone his own age. The sight and sound of him and Cass running around and interacting on a five-year-old level warmed my heart. Sometimes, the saddest part of P having cancer is how it keeps him away from his lifelong play and recreation routines and locales. Kids are the best playmates for other kids, and parks and schoolyards are the best location for the play. But there's a spanner in the works: kids carry germs that could be seriously bad news for P's compromised immune system. So Jo Ann carefully planned this play date; she verified and re-verified with Dr M that it was OK for the date to happen.

All week, Pablo asked Jo Ann about the status of the play date. 'Did you call Cassiel's mommy?' 'Did Cassiel's mommy call back yet?' 'Is today Saturday?'

When Saturday eventually did turn up, Jo Ann made the final call to keep the date. Just yesterday Pablo had a blood transfusion, so the germ thing is not, like, a theoretical risk. With radiation and chemo rocking simultaneously, Pablo's white blood cell count is slipping and sliding all over the place. We were happy that it worked it. Most important, Pablo had a killer time.

Grady, Pablo and Jo Ann slept in the parental bed last night. No, not because I was in the Fred Flintstone dawg house. Because I was feeling a tiny bit funky on Friday, and did not want to mess around with passing it to Pablo. There's a bug going around my office, and I was sure it'd hit me. With a lot of rest, and a lot of water, I've been able to keep it at bay. I feel a ton better than I did 24 hours ago. Let's hope that trend increases.

That's the news from our house. Let's go out on a good note:

Friday, September 26, 2008

Ball Of Transfusion

Only one more day of radiation!

Today's treatment was smooth and simple. Arlene, our Child Life friend, gave Pablo an end-of-week reward: homemade yellow Play-Doh! He loves it. We were out of there in record time—45 minutes. The treatment was so fast, we left CHLA before Pablo's blood labs were complete.

On the way home, Jo Ann and Pablo dropped me at our new, still-under-construction HQ on Sunset. They were home by 9 a.m. At 10, Sally from the Radiation Oncology clinic called my mobile phone to say Pablo's lab report was in, and to bring him back to CHLA for a blood transfusion. Not a surprise. In fact, while Pablo was in the zapping chamber, we went to the blood clinic to verify the number of directed donor pints we had in stock for Pablo.

Before packing Pablo back into the car and heading back to the hospital, Jo Ann slathered lidocaine cream on the skin above his chest port (they had just de-accessed the port at 8:45 a.m.), covered it with Saran Wrap (a state of the art medical supply), and made a calorie-packed lunch. They swung by to see me at our new building at 3801 Sunset Boulevard, then made their way back to 4650 Sunset Boulevard where a pint of blood labeled with Pablo's name was hanging on an I.V. pole awaiting his arrival.

The transfusion should be complete by around 4 p.m. Pablo will be tired when he comes home. Hopefully, we will all have a nice, chilled out evening at home while Grady tries out for the freshman basketball team at St. Francis.

I'll full you in on G's tryout and any P developments tonight or first thing in the morning.

Thursday, September 25, 2008

Today Is Thursday And All Is Well. Only Two More Days Of Radiation.

I have to admit, it always feels strange to say 'Pablo's doing well.' People ask after Pablo a thousand times a day, and I always feel the need to frame the 'well' response with a tinge of the horror of it all. If I break off a little horror crumb for everyone to carry, the load won't be so heavy at the end of the day. Plus, I feel guilty saying 'he's doing OK' when he's the one with a length of plastic tubing coming out his chest, and target marks tattooed on his chest, wrists and throat. No matter my response to this question—always posed in a loving, caring way by loving, caring people—Pablo is still fighting cancer.

The fact is, he is doing well. He's happy, smiling, laughing, eating, drinking, playing. All his bodily functions are working great. More than that, he understands what he is going through every morning at the hospital. His eyes are open as the nurses and doctors position themselves around him. Curious and sober, he watches every major movement in the room. When others are around, he speaks to Jo Ann and I with his eyes and with hand gestures. He is curious. He is not scared.

This morning, Pablo woke up early and joined me at the dining room table. He sat in a chair that traditionally Grady's seat, because I was sitting in his seat at the head of the table. I was reading two newspapers, my email and four websites and getting nowhere. It was nice to have Pablo join the party. After a moment, he looked at my bowl of yogurt and granola. 'Oh s**t,' I thought. 'He can't eat.'

'Papa, I'm hungry.'

I knew it. A guilty flush came over my entire body. This hasn't happened in the eight days we've been doing radiation, because I wake up early and eat before waking him. Even though there is a logical, legit explanation why he can't eat, I still felt bad telling him he had to wait until after his treatment to eat. I said the words, and he was OK with it. We looked out the window across the Silverlake valley. I was searching for something to distract his attention. He began playing with a few dinosaurs that he'd left on the table last night at dinner. The moment passed and we were out the door a few minutes later.

As we parked the car at CHLA, Pablo asked if we could race to the radiation oncology clinic after we got our sticky passes at the front desk. 'Can we race all the way there, but not too fast?' he asked. When his abdominal pain stopped on Saturday, all kinds of cute and interesting observations and questions like this began to emerge from his ever-growing brain. In the absence of kindergarten knowledge and cute school drawings, it's a delight to witness.

We are down to two final days of radiation. Monday is the last day Pablo will be woken early, driven to the hospital, and put into a chemically-induced sleep. The party at the finish line Monday morning will be sweet as it will be short. We check Pablo into CHLA Wednesday for five days of in-patient chemotherapy.

Monday, September 22, 2008

Monday Love

I walked in the door at 9:15 p.m., took off my shoes, dropped my bag and quietly headed downstairs. Pablo was surely asleep, I thought, as I touched down on the first stair. My hand touched our bedroom door knob. I turned it as quietly as possible, pushing the door open. Inside, the lights were low; I saw Jo Ann, awake, as expected. There was one other creature stirring in our bed, and his name was Pablo. His eyes lit up, his smile thrust forth like the heat of a blast furnace. I felt my smile mirror his, and I felt my heart slow down, warm, then melt. He stood up. I went over to the edge of the bed, hugged his frail, 16 kilogram body as tightly as I could, and told him I loved him a zillion times. Without uttering a word, he smiled a smile that communicated 'you always say that, Papa.'

I could tell P wasn't tired. Or, perhaps he saw a willing playmate who could keep him from having to go to bed when Mommy wanted him to. Either way, I hadn't seen him since parting ways with him and Jo Ann at 9 a.m. at CHLA. I missed him, and I wanted to hang with him. So, I invited him to tag along with me as I went upstairs to take my nighttime vitamins, and prepare his post-radiation food.

Pablo was so eager to participate in the prep of tomorrow's breakfast snacks that he pulled the honey nut Elmo-O's out of the cabinet all on his own. A Tupperware container filled with a box of that stuff is still quite a task for him. Then, he snagged a rather large Tupperware container to hold tomorrow's portion captive until he can get his hands on it. I enjoyed watching him make the decision on which container to use. I enjoyed watching him hold the container as I poured the O's. And I enjoyed asking him to say 'when' at the point where we'd poured the correct amount. When that task was complete, he opened the refrigerator and implored me to take a guided tour of his 'sport drinks'—the organic fruit drinks that Jo Ann bought for him at Whole Foods. There must be four different flavors of the stuff. Each flavor is filled with electrolytes and all kinds of other replenishing ingredients—just the kind of drink you need when your body is being zapped and juiced up by radiation and chemo.

Pablo's always such a good sport. Once he heard the term 'sport drink,' that became his flag to fly. He has always been so willing to latch onto a phrase or sentiment and run with it. When he was younger, we thought it was adorable, and a sign that he had good 'processing skills.' We still think that, and we also think that it's wonderful to see Pablo accept so many new drinks, foods, medicines and procedures into his life. This playful, exuberant acceptance is like a soothing elixir to me and Grady and Jo Ann.


Without saying the words, Pablo is saying to us, 'I get it, guys. I'm in on it, I'm with you, and I get it.'

One other thing P was in on today: pushing the syringe of milky Propofol at the radiation oncology clinic. No, he didn't hijack the anesthetist! The doctor who worked with us today (we'd never met him, and I forgot his name) offered Pablo the syringe, and encouraged him to push it. Like a total pro, P placed his thumb on the back end of the syringe, positioning hi index and middle fingers on the sides of the tube. He pushed it in. In an instant, his hand and arm went limp. He tried to regain his grip on the syringe. His eyelids drooped. I could feel him heavy against my chest. He grabbed at the syringe again, ham-fisted like an Everclear ballad. No luck that time. He was out.

And that's my exit segue. It's late, and I, too, need to be asleep, sans the wicked white milk med.

Happy Monday

It felt odd not posting yesterday. What didn't feel odd was the GREAT DAY we had Sunday! Pablo slept soundly on Saturday night. No pain, no screaming in the night. Nothing but sawing logs. When he woke on Sunday, he was happy as hell. It was like the prior nights of tummy terror had been wiped clean. What a RELIEF!

A good night's sleep lead to a day of play, laughter and all kinds of other indoor recreation. It's remarkable how one's true thoughts and personality comes out when hours of grimacing and screaming go away. I noticed it constantly on Sunday—I kept thinking, without all that pain taking up his spiritual bandwidth, Pablo's personality is on FIRE today. His sentences seemed huge. His observations and jokes and stories were that of a true raconteur. He offered up a steady flow of ideas for playing games and reading stories—none of the 'get away from me' stuff.

The word 'relief' comes up again and again for me as I write this. Relief that his pain didn't go on forever. Relief that, without medicine or going to CHLA ER for hours and hours of questions and waiting, the pain worked itself out. Relief that our constant email and phone contact with our AMAZING doctors, Mascarenhas and Stein, we had the courage to work Pablo through his pain. Relief that Pablo's body is still strong and sturdy. For me, I appreciate the four or five days of pain, because it was a physical embodiment of all we've been through, and all we're going through.

Utilizing a simple kit of tools like simplifying Pablo's diet to small bites of bland foods and b r e a t h i n g through the pain, we were able to eradicate the whole mess. With the tumors gone, the enemy we are now fighting is invisible: the possible microscopic cancer cell is our target. We're not even sure these enemies are real. Yes, it's great that the tumors are out. But when you're fighting a foe without a face, there's no scoreboard. In an all-out situation like this, a scoreboard is helpful. It is the carrot on the stick. Our lost week of tummy-wrenching gave us a feeling of accomplishment. It pushed us further down the road. There's a lot of power in that.

I could write for days about this. It's fascinating to me.

We are due at CHLA in an hour, so I better run. Today is radiation day six of 11. The treatment to the left side is complete. From here out, it's all about the right side. We are making progress. Pablo and I studied the numbers yesterday. He now knows how to subtract from 11. Even though he's missing over half of his first year of kindergarten, we're teaching him the basics using the tools we have.

Saturday, September 20, 2008

Friday Night Fright

Last night was one of the scariest times we've had since becoming a cancer family back in May. The nagging intermittent pain in his abdomen kept him up all night writhing in pain, screaming, wincing, violently vomiting. At some point, he began shooting down all of our comforting suggestions. 'That doesn't work!' he'd scream after each request that he lie on his belly, breathe through the pain, or just shift his position in bed. At times, he didn't want either of us to go near him, opting to lie between us, alone on his pillow. This went on all night, hour after hour.

As midnight turned to 6 a.m., we saw the sunlight peeking in through all the cracks in our curtains. I was scheduled for a 7 a.m. bike ride with my friend Piero. So I went upstairs to email my cancellation, and to email Drs Mascarenhas and Stein. They have been monitoring Pablo's condition all week, and we like to use email to communicate with them in real time, so they have a clear sense of what's going on. Stein emailed back at 8:15, and Mascarenhas called shortly after. Both responses mentioned the possibility of going to CHLA ER for tests. Stein is in surgery at CHLA this morning, and could examine Pablo if we get there in time. Thing is, Jo Ann and Pablo are sleeping (he is laying on top of her—the ultimate comfort position for a child), so the world is going to have to wait until they wake up.

¶ Living under the cancer cloud has not been easy by any means. Laying in bed last night, holding P's hand under the sheets, helping him breathe, I realized we haven't had to deal with oblique physical pain until now. In that moment, 'not easy' got harder.

What's been brewing in Pablo's gut this week is terrifying stuff no matter what age you are.
Pablo's gut is kicking out the kind of unpredictable, sharp pain that underlines the dawn of fear in a boy. It's an unfair battle, this kind if pain. You can't see it, you can't ice it, you can't pop two Tylenol and fall asleep and forget about it. Kurt Cobain cited his chronic abdominal pain as a source of lifelong trauma. And we've heard the soundtrack to that ab pain: angular, jagged, propulsive and, oddly, lots of lyrics about wanting to be left alone. Sounds familiar?

Fear is often coupled with future-tripping (adults know this all too well). Now, when a doctor or a nurse enters the room, we can see tension and terror enter his body, and he frequently says 'I'm scared.' This level—any level—of fear is natural. We all pass through this ring of life, and we all need fear. It's a protective emotion that tells us to proceed with caution, to make our boundaries known to others, or, as Mike Myers taught us, to RUN! That said, it is heartbreaking to witness Pablo's organic personality nodules blossoming under the light of a radiation machine, or the florescent tubes of an oncology clinic.

It implies that Pablo is beginning to understand that he is his own person, and although his Mommy and Papa can protect him, he is having his own experience with his own body and with his own mind. I would have preferred to see my little boy come to this realization when we dropped him off at kindergarten and drove away, or at some other such moment. But this is his life—our life—and the one thing I am not is delusional. I understand that Pablo is going to grow physically and emotionally during his year of treatment. We can't push PAUSE on the tape deck of life and transpose all the developmental growth moments onto next year.

As I type, I'm learning a bit more about how I feel (love when that happens). I'm also realizing that we're just having an ordinary, unpredictable, zany day in the life of a cancer family. The only way to stay sane is to expect insanity. The funny thing is, I could apply that line to each era of my life leading up to this one. I've had a lot of practice with the sane/insanity couplet, having learned it a long time ago in a galaxy far, far away.

Why do I keep forgetting that?


¶ Pablo and Jo Ann just woke up. Pablo has no recollection of last night's events. Strange and mystical how the mind works. Someday when he's older, we'll tell him all about it.

We are going to call the docs right now, and see how our day's going to unfold.

Thursday, September 18, 2008

Radiation Day 4+Malibu Triathlon Report

I am so happy to be laying in bed, with every member of my family also on the bed. My clothes are still on; everyone else is in pajamas. Pablo has a hot pack on his belly—that mysterious abdominal pain is still nagging him. Grady is studying, sprawled out at the foot of our bed. Jo Ann is playing a word game on Facebook. And I am typing on my BlackBerry. If our bed were a raft, the entire family would be floating safely and contentedly toward some remote island.

This is my ideal night. While we were residing in 4 West, I longed for a night like this.

Dr Mascarenhas was on the phone to Jo Ann this evening, reviewing a couple theories about the origin of this pain, and the gurgling noise coming from his intestines. Dr Stein is going to meet us in the Radiation Oncology clinic at 7:30 a.m. to examine Pablo.

We want to get to the bottom of this before the weekend. No reason to be back in the U.S.S.(E.)R. on our two precious days OFF from CHLA! Forget that!

Radiation treatment #4 was the smoothest and easiest yet. Sitting on the gurney in the Rad Room, Pablo leaned his back against my chest automatically. Moments later, Dr McIlvaine pushed the anesthesia syringe, Pablo's eyes rolled back and his head fell back into my waiting hand. Monday, Tuesday, Wednesday this brought me to tears. Today, I was OK. Something about P's nonchalance and comfort in that room transferred to me. If this brave little boy ain't freaked, why should I be tweaked?

For the first time, I asked the docs if I could watch the radiation treatment on the video monitors-a pair of Panasonic Cathode-ray screens from the mid-80s. An identical pair of monitors were likely housed in the broadcast studio of the Reagan-era White House. The upside to the antique monitors is that I wasn't able to make out fine detail. All I could see is an oblique human figure laying on a table, draped in a white sheet, with a mask on his face, and red lasers shooting off in all directions. My curiosity was satisfied nonetheless—I saw P getting radiated. I don't ever have to look again.

On the way to CHLA today, I asked Pablo if he recalled rolling into the treatment room the day before. Each day, he sits up on the gurney, and 'drives' it into the treat room. He told me he had no memory of that. I asked him a series of questions related to our pre-treatment routines, searching for any rays of memory. He had none.

Somehow, this makes me feel better.

I went to the office today. It was wonderful to be back. Fun, loud and lots of laughs. Plus a load of good work. Rode one of my bikes and had to change my shirt when I got to the office. Riding in street clothes with a shoulder bag feels weird, but is also cool. Makes me feel like a teenager/college student again-like when I used to ride my bike everywhere, with heavy loads of books and music in my bag.

Hold up! All this talk about riding reminds me that I have not given the Malibu Triathlon update!

Adam, Brandon and I had a fantastic time, and we did pretty darn well! The race was half mile swim, 18 mile bike and 5 mile run.

Here's how we fared:

• 1 hour 42 minutes total time

• 14th place among the relay teams

• 42nd among the entire field of 3000+ athletes

• I came in SECOND among cyclists on relay teams, finishing the 18 miles in 46 minutes 11 seconds!

I'm VERY PROUD of the work we did at Zuma Beach. We got up at 4 a.m., and started the race at 7:30. Insane. No one in their right mind would do it. But who said you needed to be sane to kick the PANTS out of cancer?

I saw a ton of CHLA athletes out there, including Dr Mascarenhas, who ran on a relay team with Dr Marcio rocking the bike.

The event raised $950,000 for the cancer research and treatment of CHLA. Jennifer Lopez raised $127K of that, and at the finish line, she stated that she "hoped the money would go to good use."

OK, will update you more tomorrow.

Wednesday, September 17, 2008

Day 3: Radiation + Chemo + A New Appreciation For Home

Three days of radiation down, eight left on the docket. It feels like we are in full swing with this little bridge called Radiation. That feels good.

Pablo and I arrived at the Radiation Oncology clinic at 8:15 a.m. As we walked in the door, the nurses rushed us into the prep room, flushed his port, popped his electrodes on, and wheeled Pablo down the hall to the radiation room. It was cool that we didn't have to wait.

While all the prep stuff was going down, Arlene, one of the CHLA Child Life Specialists who joins us every morning, turned up a giant poster board calendar. There's a whole team of Child Life Specialists who roam the hospital, interacting with children in a playful/therapeutic way, and helping parents understand how to deal with what their child is going through. Like the docs and nurses at CHLA, the CLS staff know their stuff. They make a huge difference. They are the mortar to the doctors' and nurses' bricks in the 'you're not in it alone' wall.

I have to say, this thing lit him up today. He was tired, and although he wasn't in full-blown cranky mode, he was not a happy camper. When Arlene rolled in and introduced him to the sticker game, and he saw his name, and all those Batman stickers, his eyes widened and his beautiful smile filled his grill.

In the mornings, our trick is to let him sleep as late as possible. Usually we wake him 15 minutes prior to our CHLA appointment. I have his clothes at the ready when I wake him, my bag in the car, his shoes ready at the front door, so we can run and gun. Since he can't eat after midnight the night before any radiation treatment, we don't want to have him awake, watching us eat breakfast. It's torturous for him, and a real bummer for us to be screamed at by a little boy who doesn't understand why he can't eat.

So, Arlene, our CLS radiation angel, came in with this giant calendar, which she made by hand, with Batman stickers all over the borders, and Pablo's name written at the top. The calendar grid covers each of the 11 days of his radiation treatment. Every day, he gets to put a sticker on the calendar. And at the end of the week, he gets a prize. On the one hand, Pablo is receiving the benefit of billions of dollars worth of technology, medical training, medicines and procedures. On the other hand, this age old game of sticker/reward is helping just as much as all the hi-tech stuff. I love the poetry of it all. And I can't wait til he's old enough to appreciate the story.

Jo Ann came to the hospital after dropping Grady at school. We hung in the lobby until P was ready for us. Our radiation nurse, Sally—a lovely, empathetic, supportive woman—gave Pablo his chemo while he was still asleep, and before we came in to see him. Pretty cool. When P woke up, he was READY to go home. He makes no bones about it—it's quite funny, actually. He never said things sternly before cancer. Now, he just busts out, 'I. Want. To. Go. Hooooooome!'

The rest of our day was very nice. Aside from minor tummy pains, which came and went all day, Pablo had a great, chill day at home. Polly was here, and they got into their normal at-home groove of games, books and talking. Jo Ann had a million things to do in and our of the house, and dug into all that. I worked from my laptop and Blackberry, and eventually went out for a couple meetings. Grady came home, started his homework, and sat down to dinner with me and Jo Ann (P was sleeping).

The workers are almost—almost—done with the play room. Although most of the workers are buddies of ours, after working on various projects in our house over the past few years, we are eager to have our house back. That said, the play room is looking incredible, and we are grateful that we're able to do such work on our home.

What I'm saying here is that our lives are getting back to normal. It's forever a new 'normal,' and the constant newness surrounding the word has become normal itself.

We are not thinking we will have to be in the hospital for a prolonged period of time for the rest of Pablo's treatment. The 28 day extended stay we just got through is a significant chapter in the story of our family. It cut a deep, wide impression into our family's psyche, and toughened our moral fabric. I feel closer to Jo Ann than I ever have. Although I still find plenty of ways to be a brat to her, there is a renewed efficiency and respect in our teamwork.

Now that we are home, and nearly two weeks past that marathon in-patient stay, I can say I appreciate the experience. And that I hope we never have to repeat it.

Home From The ER

We are home from CHLA, exactly eight hours before our radiation/chemo appointment Wednesday morning.

The docs checked Pablo's blood and urine and took X-rays of his abdomen. No sign of a blockage in the images, and no sign of any probs in the blood or urine.

After nearly four hours in medical captivity, they gave P a dose of liquid Tylenol and sent us home.

He's already in bed with Mommy. And that's where I'm headed. She'll be up in six hours, to start our day and get Grady to school.

Will check in sometime tomorrow.

Tuesday, September 16, 2008

Paburglar

While the docs are theorizing about what's up inside Pablo's belly, he decided to put a burger inside it.

John ran to the McD's in the lobby. Pablo is happy!

In The ER

We are in the ER at CHLA. Pablo's got abdominal pain that won't leave him alone.
We're in a nice, quiet exam room, watching 'Enchanted.' The docs came in to see him, and are now calling Dr Mascarenhas and his on-duty Fellow. Our pediatrician from 4 West, Dr Daniel Bruckner, ran down to see us when he saw P's name show up on the computer. He is the best. I explained to P after Dr B left that what he did by coming down to see Pablo was an act of love. It was also a huge help to me, because when he walked in, I was in the middle of explaining P's entirrrrrrrre medical history. Dr B was able to pull the ER doc outside and fill her in on everything. At this point, reciting P's med history is like reciting the Old Testament!

My friend John Millhauser is back in town from Chicago and just joined us in our room. We're gonna catch up with him.

Will keep you informed.

Polly's Pix / Radiation Day 2 Report

Pablo and I arrived at the Radiation Oncology lab at 7:15 a.m. We read a few pages out of a book, and the nurses came out to get us. Since his port is already accessed, we had about five minutes of prep work to do (blood pressure, sticking sensors on his body) before rolling his gurney into the radiation room. The treatment took about 20 minutes. Pablo woke from the anesthesia without any puking or gnarly stuff. Thank God. That only makes it harder on him, and on us.

We were on our way home at 8:45 a.m.

As I placed Pablo in the car, he stood up in the back seat and screamed, 'I've got to peeeeee!'

In that frantic moment, we had two options. One, go round the back of the car and pee on the wall—but, really, you have to be drunk to do something like that. Although being jacked on chemo and radiation is pretty intense, it doesn't quite qualify you for the public pee-pee Olympics.

The second option? Pee in Papa's brand new Velo Pasadena water bottle that's SO new it hasn't even made it onto his bike yet!

We went with option #2. I ripped the top off, flung the water out of the bottle, and let him rip. The great thing is that Pablo went from a pretty rough mood to, well, as they say, pissing himself laughing!

I'm glad I was able to be of service with the bottle and all.

Since coming home, P ate rice, strawberries and sushi. He let me eat his seaweed. (I devoured it. MMMMM....24 calories!) We snuggled in bed as he watched 'The Secret of Nimh' and I worked on my laptop. We had fun talking to Mommy, and saying goodbye to Nana (she is flying back to Houston as you read this), and saying hello to Polly, who is hanging with P now.

On a side note, I met a mother in the radiation waiting room this morning. Her little boy Darrell is 13, and is in, like, day five of a 14 day radiation course. I saw him yesterday, and again this morning. He has been at the chemo game for a month longer than P, and is a few days ahead of P in the zapping chamber. Darrell looks GREAT, and, other than the fact that he was standing in the waiting room of a radiation clinic at a hospital, you would have NEVER known he had cancer.

His mother and I talked about the joys and the challenges of having a son with cancer. Like us, Darrell's mother has found that her son's Hodgkin's Lymphoma has united her family, her neighborhood, and her faith in life. I didn't expect to meet any new friends this morning, and I'm glad I did. Relating my experience, strength, hope—and all the yucky stuff that goes with those things—was very helpful.

On a lighter note, Polly snapped some cool pics of Pablo and Grady last night. Here they are, with her captions (the actual skeleton image is courtesy CHLA Radiation Robot):


Insane Clown Pablo

The real skeleton de Pablo, as photographed by the radiation machine at CHLA.



P and G brawlin'

P and G in skulls

P and G skull thugs

Just a couple of guys hanging out

Monday, September 15, 2008

Delaydiation

Pablo's body mold. Once he is asleep, five people gently lift his body and place it in this mold.

This is the radiation machine in the test lab. The real one is MUCH bigger.

We love CHLA. They are always looking out for us. Jo Ann noted today that we get at least one phone call a day from someone at the hospital. It's usually someone offering us an earlier slot in the oncology clinic or the CT lab. Today's call was from the scheduler in the radiation oncology lab; she had a 7:15 a.m. slot, which we exchanged for our 9 a.m. We'd always—always—rather be the first ones in the door. Because we live close and wake up early anyway, this is never a prob for us.

Jo Ann will drive Grady to school in the morning, and Pablo and I will cruise over to CHLA to get his zap on. His port is accessed, and we know what we're doing now, so we should be able to get out of there within an hour. It's amazing how fast Pablo adapts to all of this. I guarantee he will be excited to go to radiation by the time the 11th treatment rolls around on September 29.

A funny story about this morning. The anesthetists had just come into the prep room to get Pablo when out of nowhere, the lights dimmed, went out briefly, and came back on. The computers followed suit. There were beeps and blips happening all over the joint. A power surge had rolled through the hospital. I've never seen this kind of thing in a giant institution. Hospitals, airports, prisons, military bases have redundant circuits to protect from that sort of thing. Technoredundance aside, it happened. And, yknow, the radiation machine runs on a giant computer, which, like your laptop, needed a restart before it could spray lasers into our little boy's abdomen. So, our first trip to get Pablo's tummy zapped was a giant case of delaydiation.

The surge delayed us an hour or so. During the wait, Pablo dominated a couple games of Uno. Luck for us chemo doesn't make him want to gamble.

He woke up from the procedure quite well. An hour after returning home, he was back in the swing of things.

OK, it's time for bed.
Good night!

Up And Atom: Radiation, Day 1

We are up and atom for radiation treatment #1 of 11. Jo Ann is on her feet, out of the shower, teeth brushed. Pablo is still sleeping. Well, actually, he got up, went potty, and jumped back in bed. Jo Ann is calling his name to wake him. His eyes are tightly shut, and he is smiling slyly. We call this Pablo's 'Pirate Booty' mode (long story, I will explain later).

I am somewhere in between these two goons: still laying in bed, with a laptop in my, uh, lap.

Last night, Jo Ann explained to Pablo that we were going back to CHLA, to the lab where we were on Friday. She told him he would get the sleeping medicine, and that they were going to put light rays into the spots of his tummy where the bumps used to be. He listened intently, and shook his head affirmatively, and continued eating his dinner.

Then, while Pablo was showering last night, Jo Ann explained that his port would be accessed today, and that it would remain accessed until Friday. He knows what that means—he can't shower or go in the bathtub all week. I forgot exactly what P said, but like the radiation talk, he was fine with it.

Awwwwright, Mommy is now hollerin' at me to jump in the shower. Duty calls.

Sunday, September 14, 2008

Sunday Night Update

All is well in Silverlake this evening. Pablo has had a great day of chilling, playing with .027% of his toy collection, getting a foot massage from Nana, and eating. The new chemo has taken the pep out of his step in terms of appetite. He is ambivalent about many of his favorite foods, and he often asks for a particular food, only to sit and stare at it blankly, without taking a bite, when it's put in front of him. I remember this from when Scott was doing chemo. I'm glad I have that experience. It'd be confusing otherwise.

I saw Dr Mascarenhas at the triathlon this morning. The first thing he asked me (after inquiring how I rode) was how Pablo was getting along at home. I told him that P had trouble getting up from sitting on the ground Saturday, and fell down the bottom step on Friday night. In general, his legs are shaky and feeble. Dr M suggested it might be from laying in hospital bed for a month. The inactivity factor is huge, and is a sound hypothesis. Soon, the Vincristine could start to affect his walking and his grip. Dr M has assured us that this is a known side effect, and goes away when the Vincristine ends.

After dinner, Pablo and I embarked on a walk. We went down our hill, and up Castle Street, the looped over to upper Redesdale, which is a giant hill, about twice as high as ours. We call it 'Pablo Hill,' because it's where Jo Ann walked during her late pregnancy with Pablo. After four-and-a-half years of smiling at the mention of Pablo Hill, Pablo has renamed it 'Beans Hill,' after the puppy Santa brought him and Grady.

Tonight's walk was Pablo's first outdoor excursion. I was determined to get him out on his feet, and get some exercise into his legs and respiratory system. He was excited about it, until we got his shoes on. At that point, he stared at the ground, and went inward. He turned his back to me, and put his head on the couch. He said he didn't want to go. I figured he just wanted to stay home and play with his toys. Jo Ann came over, and got his attention. She asked him if he didn't want to go because he had to wear a mask. 'Uh huh,' he replied.

We reminded him that Papa was wearing a mask too, and that he could decorate his with a drawing. In an instant, he was focused on taking a marker to his mask. Ultimately, he instructed me to draw a mustache on his. He was happy. And, after grabbing a skeleton and a couple knight action figures, we were on our way.

Jo Ann took our picture at the start of the walk:


Below: We stopped to play with Pablo's knights and pirate skeleton heads on this wall.

I am so tired right now, but I want to come back to the feelings and experience we had today around the walk, and some of the interesting (read: fun, funny, hilarious, sad, heartbreaking, real) experiences we have had since coming home on Friday.

PS: in the triathlon this morning, our team did very well. The official results will be posted online Monday or Tuesday, so we don't know our exact team time. I know that I came in roughly the same as last year. I also know that I passed Matthew McConaughey on the road, and that he crossed the finish line on Adam's heels. The dude is an incredible swimmer and runner, that's for sure. The event raised $950,000 for the pediatric cancer operation at CHLA. Can I get a HELL YEAH? Jennifer Lopez raised $127k of that herself—incredible.

All I can say is, I cursed cancer for 18 miles. I figure I had 4,000 more miles in me this time last year. And a LOT more races and centuries leading up this event. Although I felt great on the road, and felt in good form, I definitely could not access that 'turbo' button. Every time I went for it, a cellular ache pushed back, reminding me that my ride for cancer started on May 17 and hasn't stopped. That said, my overall average speed was exactly the same as last year. The only way I can explain how I matched last year's time is to attribute it to Pablo—his energy, his fight, his love.

That's my story and I'm sticking to it.

Standing On The Beach: 2008 Malibu Triathlon

Right now, I am standing on Zuma Beach in Malibu, about to kick off the 2008 Malibu Triathlon. It's early, it's cold, and I wouldn't want to be anywhere else in the world. Why? This event is a benefit for the Pediatric Cancer Research arm at CHLA.

Just standing here with Adam Harrison (runner) and his buddy Brendan Carroll (swimmer) is sanding up to kick cancer in the pants. Last year this event raised over $700,000 for CHLA's cancer research efforts. I hope it tops $1M today. We'll see. Money is key ingredient in the fight on cancer—it takes greenbacks to pay the researchers, run the administrative aspects of a study, and to buy insanely expensive equipment needed to examine and process data gathered from kids. The first time Jo Ann and I met Dr Mascarenhas, he asked if we would allow Pablo's tumors and treatment to be part of the National Wilms' Study. Without hesitation, we said Yes. And that was before we knew what it was all about.

Somewhere on this beach are nearly all the doctors that are working to save Pablo's life—Drs Mascarenhas, Marcio Malogolowkin, Stein, Austin. And Terry Green from the CHLA Foundation. I don't know how many other CHLA people are here, about to compete beside me, but I understand it's over 150. Last year there were only 50. I like the uptick. These people fight every day on the front lines of the cancer war, and they all woke up at 4 a.m. today to fight in a unique way.

Last year, I did this triathlon with two other friends. I didn't raise a penny. Not because I didn't care about CHLA, but because I'd raised money for another event earlier in the year—a ride from London to Paris to see the finish of the Tour de France. I couldn't fathom hitting up all my friends for a second dip into the wallet. As I write this, I know that the Pablove Foundation is good for $100,000—including the 'Give Listen Help' CD compilation. And we still have some big ticket donors waiting to write checks (waiting for our official IRS Non-Profit Organization number to be granted). While that money was not raised specifically for this event, this is one of the many many ways I plan to support the donations you all have given us.

I can speak for our entire family when I say that we are determined to back the cash that's been given to the foundation with action. How can riding a bike 18 miles and bone-crushing speed help anyone, you might ask? Simple: me being here, along with thousands of other people, is a giant energy field buzzing along the coast of California. Among the masses this morning, there are parents of cancer kids, like me, and there are cancer survivors of all ages. There are all these docs, nurses, administrators, development (fund raising) folks—who, arguably, have the most gut-wrenching vantage point of all, cos they see all the cancer kids. There are friends of cancer survivors. There are loved ones of those who didn't make it (I am also one of those). And, of course, there are people here who are just along for the competition. No matter what, we all come together, and we create a massive source of intention, light, determination. POWER. It's freakish.

If you have never competed in an event like this, or witnessed it as a spectator, I can tell you it's like nothing else. I have done dozens of races, time trials (since I am doing only the biking part of the triathlon, this is a time trial, or sprint, for me), centuries and double centuries. But there is a part of what
I'm about to embark on that is unknown for me: knowing that my son is asleep at home, about to embark on the full throttle cancer treatment of radiation and chemotherapy. I am a little scared that I won't be able to access the 'right stuff' out there today. Fear is something I grapple with every hour of every day, and I know it never does me good.

On this side of my first pedal stroke, I can also feel a six-letter rage inside me: c.a.n.c.e.r.

If I can control my breath, and relax on the bike in the first .5K, I will be able to utilize that rage. If I get all up in my head, and the rage comes spewing out all over the place the moment I settle into my saddle, I will be angry at something else—my brain. Riding a bike very fast, like so many other things in life, isn't what it seems. It's not about brute force or going Koo-Koo for Cocoa Puffs. For a trained athlete, it's more about grace and surrender than the grinding of teeth and the mashing of gears—
some 'wax on, wax off' s**t. This is what Lance Armstrong has mastered in his career (that link shows one of Lance's TdF time trials).

No matter what happens out on the road today, I am reminded once again of the mirror image that exists—breathing, grace, acceptance—between riding my bicycle and being a cancer papa.

Pix and tricks later today.

Saturday, September 13, 2008

Urban Outfitters / Filter / Pablove Foundation 'Give Listen Help' CD Compilation

Shirley Manson very graciously took time out of her interview on KROQ last Monday to announce the Pablove Foundation's first public fundraising project—the 'Give Listen Help' CD compilation. Our friends Alan Sartirana and Alan Miller at Filter Magazine/Filter Marketing asked us to participate in this music charity project that they do once a year with Urban Outfitters. You can listen to the Pablove parts of the interview here.

The comp is a limited edition, double-disc set, and will be sold exclusively at Urban Outfitters stores. It is filled with unreleased or exclusive tracks (including live versions and remixes). The first disc opens with a brand new Garbage song that was recorded specifically for this release. Other artists who have contributed to the cause include Radiohead, Jack Johnson, Oasis, Bloc Party, CSS, Decemberists, The Faint, Of Montreal and others. Some of these artists are friends of ours, or we are friends with their managers, marketing team, lawyer, etc. Whatever the case, there are 16 artists on the first disc who have given us royalty-free tracks so that we can use their music to beat the hell out of cancer.


The second disc includes every artist on Dangerbird Records. This one is all family. These bands have seen Pablo grow up. They've heard him speaking his first group of words. They've looked on as he took his first steps. Pablo's been in the studio with Peter Walker / Eulogies many many times. He was in the studio a few times when Silversun Pickups were recording their album 'Carnavas.' (One funny story is that he hit a MUTE button the mixing desk when no one was looking, and after P and I left, they spent hours trying to fix the 'no sound' problem.) For a few weeks back in 2006, La Rocca had contemplated shooting a black and white portrait of curly-headed Pablo for the cover of their debut album (the idea was nixed cos we all thought it might look too close to the 'Boy' album cover by their Dublin forbears U2). Hrishikesh from The One AM Radio has babysat Pablo, and spent dozens of hours with our family. And with his rifle range ear muffs, he's seen most of the artists on the label play live (I usually take him and Grady to sound checks). I am humbled by the powerful the love and support we've received from our home team. I know that this would be the case no matter who in our large Dangerbird family needed help. It's just the way we roll. We've got each other's backs.


The Pablove Foundation will receive every penny after minor manufacturing costs are paid for. More important than the financial aspect, this comp—and all the media attention it brings—will help to raise awareness and consciousness around Childrens Hospital Los Angeles. A big, big deal for us.


We are not sure that we can sell the disc on our site—still working on that. Will keep you up to date.

Friday, September 12, 2008

New PABLOg Look, New Phase Of Treatment

It was time for a new look—something to signify that the tumors are out of Pablo's body, and we are now on to the next step: eradicating any microscopic cancer cells that might still be lurking around. Jo Ann chose the new front page picture, saying it's the best picture of Pablo in months. Within minutes of getting our email, Hrishi redesigned the PABLOg logo, and changed the background color.

As I write this, Pablo is sitting next to me—AT HOME! When we walked in the door, Pablo got down on his knees and hugged both Chili and Beans. Then he descended the stairs—something he normally does dozens of times a day—and ran to his room to get DRESSED! Can you imagine you EXCITING that is for him, after 28 days in hospital gowns?

Right now,
Pablo is watching a DVD on his laptop. Mommy and Nana are making lunch for us. Arianna has a crew of workers toiling in the play room. From the chilled out position where P and I are sitting, we can see our beautiful, tree-filled back yard, and the overcast LA sky. Beans is on the back deck, staring at us through the window. This is great. I am SO GRATEFUL to be home with our little boy. This is where he belongs:

MINUTES AWAY FROM GOING HOME!

28 Days. Can you believe it? An entire MONTH up in this joint! And now, we are minutes away from busting outta here! The nurses just de-accessed his port. The bags are packed. Pablo's street clothes are at the ready. We're ready for the freedom run.

This morning, we went down to the radiation oncology lab. They knocked Pablo out, and dropped him in the body mold and ran a radiation-free test on him. The goal was to verify the laser alignment. We are happy to report that everything went perfectly well.

Jo Ann and I spent about 30 minutes with Dr Wong, the radiation oncologist. He reviewed every detail of every aspect of the treatment. I have some photos of the mold, the radiation machine, and some CT scans that Dr Wong gave me.

Will post all that later.

We have somewhere to go right now!

Thursday, September 11, 2008

A Great Day Makes A Huge Difference

It's been a great day. Period. Pablo was 100% all day. We played another inning of in-room flashlight rules baseball. The kid was beating me 16 - 0 when I had to leave for my speaking gig at Paramount Studios. When I got back from that, he was still smiling.

Jo Ann and Patricia went home when I got to CHLA this morning. They spent the day preparing the house for Pablo's arrival on Friday. They picked up Grady at school, hit In N Out Burger on the way home, and then headed back to CHLA for the night shift. They are pulling back-to-back overnights. And I ain't gonna complain! There was a different vibe in the room all day today. And this evening.

On the way back from Paramount, I realized I haven't been west of the hospital in 27 days. Insane! The city looked different, but still the same. Terry Green from the CHLA Development office drove me. Great man who is part of a great team of people; they raise $100 million a year for CHLA. They have to—or the hospital couldn't survive. Imagine if George Bush's war machine were a research and treatment operation for the five deadliest diseases in the world. Then Terry and his colleagues could all retire LOL!

Terry and I had a great carb loading dinner with the Paramount Triathlon team, who, like me, are doing the Malibu Triathlon on Sunday. It's a a two-day event, and a benefit for cancer research and treatment at CHLA. A bulls eye for me: cycling and supporting one of my kids. What could be better? I am on a relay team with Adam Harrison from Dangerbird (runner) and his friend Brendan Carroll (swimmer). One thing was odd though—they didn't have dinner plates—we piled our 'carb load' on dessert plates. Oh well. Carb loading is a myth anyway. It was great food, and I got to tell the story of Pablo/our family/cancer/CHLA. I made a point to look into people's eyes when I spoke. There were about 200 eyeballs to look at, so it wasn't hard.

When I finished speaking, they gave me a giant Paramount gift bag. It was filled with DVDs, two 'Love Guru' tees and a Team Paramount tee—all masssssive size L. I gave them to Patricia to give to Harry. I'm not sure if he'll rock the Mike Meyers/Guru tees, but who knows?

This afternoon, we met a new oncologist dude who stopped by to say hello. His 17-year-old son had Wilms' Tumor when he was 3.5 years. They are from Calcutta, India, and still lived there at that time; they traveled to Chicago for treatment. That was back in the 9-4. In the world of cancer treatment, the 13 year difference in treatment and technology is colossal. Although his son had Wilms' in only one kidney, he had radiation and chemo, and is happy and healthy now. I talked to the guy as long as I could. At some point, he clearly didn't want to talk anymore. So I kept talking. And then I said Goodbye and let him see his next patient. The man is not our doctor, and I believe he came by just to relate to us. Another CHLA angel. I was walking on air after hearing about his son.

Boy, was that baseball game fun. We have to keep that rolling when we get home.

Pablo 7, Papa 0

The baseball
The batter

Don't tell anyone, but Pablo and I have pushed the beds to the sides of the room. The guest bed is blocking the door. Pablo's holding the nurse's white flashlight like a baseball bat. He is sitting on his legs on top of his bed. I am pitching him the rubber ball that he and Nana just bought in the gift shoppe. The dude only swings at balls he can whack out of the park. He even got a home run (sinking the ball into the wash basin) with bases loaded. Prior to cobbling together our intra-room baseball league, we we playing catch with the rubber ball. That lead to Pablo laying on every crazy spin he could come up with. To keep the needle in the red, I showed him how to throw the ball super hard at the floor so it'd hit the ceiling. He laughed as if Tim Conway were putting on a personal show for him at the foot of his bed. So, you know, I kept doing it...and doing it...and doing it.

OK, enough typing.

Pablo's done eating his lunch (proof below)—time for second inning.

Wednesday, September 10, 2008

The Countdown...

The countdown to going home is officially ON. Yesterday we received a high security med delivery of Neupogen, a drug to be administered at home to help Pablo keep his blood counts up. We just recently heard about this part of the process. Insurance covers the drug (thank goodness, it's $7,000 a shot) and a one time home care nurse to come over and teach us how to administer it. Most parents give the shots to their kids, but I just can't imagine that happening at our home. Jeff faints at the sight of a needle... seriously, I always thought he was joking, but I can tell you from first hand experience... the dude goes down and needs smelling salts! And, although I don't faint, the idea of giving Pablo an injection is so overwheming emotionally, I start to feel anxious just thinking about it. So, I called Penelope, one of our lovely nurses from the out-patient clinic to see if she would be interested and willing to help us out. We met Penelope on our first tour of the clinic back when Pablo was diagnosed. In the not-so-strange way that things happen, our friends Justin and Corinne had told us about their friend Penelope who is a parent at their daughter's preschool. Then upon meeting Penelope we discovered a long long history of mutual friends and that we are actually neighbors. I could go on and on, but the point is - we are sorted on home injections thanks to her! She will be coming over every 3 weeks to give Pablo his shot.

Dr. M stopped by to see us this morning and gave Pablo the go-ahead to start on the new 24 week/6month treatment plan. It's a lot of information, a lot of drugs, a lot of nervous energy jumping around inside of me...

Today Pablo gets Vincristine, Doxorubicin and Cyclophosphamide (Cytoxan). We have had the V and D with our last round of chemo (remember RED DEVIL?), so we know how Pablo handles those, but the Cytoxan is a great big unknown with all kinds of crazy new potential side effects, including the most common, bladder bleeding. UGH... in order to prevent that it is given in combination with another drug, Mesna, and it is administered over the course of an hour. Then we get 2 more doses of Mesna every 4 hours. This is why Pablo is receiving chemo in-patient. He needs to be monitered throughout the night.

As if that's not enough, we actually start all of this doping with a Benadryl/Reglan combo shot to be followed up every 6 hours as needed for nausea and vomitting, and a syringe full of Zofran, to be continued every 6 hours for 8 more doses... and then we go HOME...

That's right, we are getting kicked to the curb on Friday. Some of the hospital staff thought we could go tomorrow, but Dr. M has the final word and wants us to stay until Friday... which works for me because I feel safer here!

As for today, our 4W nurse took Pablo's fluids off this morning because he's eating and drinking, so we went on a "freedom run" (more like a nice stroll) around the hospital. Pablo's new favorite spot is the gift shop. Seriously, he loves it there. Right now, he's out with Polly and a bowl of berries. They are headed to the front courtyard for a book and a snack.

We are all good today and will keep you posted on how Pablo tolerates his chemo this afternoon.

love,
Jo Ann

Tuesday, September 9, 2008

We Are Winning The War On Cancer

Pablo's so excited to have food in his mouth he wants you ALL to see it.

While we were eating dinner in the conference room-cum-mess hall, Dr Stein came to see us. He had a message regarding the pathology of the right kidney—the last bit of the organ that he removed in the operation last week. The message was great, great news: the tumor did in fact have tumor cells in it.

As I said in a post last week, we would prefer that Pablo NO cancer in his body, ever. But since we are engaged in a war with an invisible opponent (sorry, had to go there), we feel vindicated that there
was cancer left in that kidney and that we were determined to get the kidney out of his body. Jo Ann was especially determined. I followed her lead (something I am learning to do more and more). Dr Mascarenhas also strongly urged us to remove the small bit of right kidney after he returned from a conference where he reviewed Pablo's case with two of the main Wilms' Tumor authorities in the U.S.

The bottom line is, a large part of cancer treatment is a guessing game. So, like sinking an opponent's vessel in
Battle Ship, knowing that our hunch was correct, and that we averted danger, is, like f**kin' great!!!!! There's another layer of great news. The two lymph nodes that were removed in separate surgeries are totally clear of cancer. This is a fantastic indicator that the cancer had not yet spread anywhere else in Pablo's body. Excuse my super un-technical description of all this. If I get any of this wrong, I will correct the text immediately. As I understand it, the lymph nodes are typically the first organs to carry tumor after the primary originating organ. No matter what, this is all GREAT news!

Plus, Pablo is up and at 'em today. He's been smiling, laughing, cracking jokes with Polly, playing with Grady, telling stories. He hasn't been as shy and withdrawn. He's walked all over the shop with Jo Ann, then Polly.

And, to celebrate this amazing day, he and I are about to dig into some Pinkberry.

We have the official word from Dr M: chemo will resume tomorrow. More on that later.

Goodnight.

Pablo Pancake Palin-ed

Many people are waiting to win the lotteria. Or for the second coming of Jesus Cristo. Mick Jagger's waitin on a friend. And John Mayer, the great guitarist and BlackBerry spokesman, is waiting for the world to change.

Here in CHLA room 429, bed B, we've been waiting for something a helluva lot simpler: for the word 'food' to reunite with the name 'Pablo. ' He hasn't eaten in six days. Six long days and many many tearful 'I'm huuuuuuunnnnnnnngry' episodes later, and our wish has been granted, and I am running (as I type this) down to the cafeteria, to get the following order for Pablo:

1. Pancakes
2. Jam (no syrup!)
3. Yogurt
4. Orange juice

What makes this diet change super sweet for us is that we didn't even see it coming. Seriously—we thought P's digestive tract would have to be a lot more active before he'd see real food. But, our doctors conspired this morning, and Palin-ed us. (Palin: the sudden introduction of a heretofore unknown person, object or fact into a seemingly stagnant scenario, as in "Sarah Palin, the Great American Patriot and Politico, deserves your vote for VP of the United States of America.") Pablo couldn't have been happier. The dude was pretending not to listen to our nurse as she told us the news. But a giant smile gave him away. His eyes lit up. Man, I will NEVER forget that smile. The innocent precious happiness in his eyes. Moments like that recharge my faith batteries. Seeing Pablo's smile and that brightness in his eyes and face is his spiritual self winking at us, letting us know he's OK and he is not going to lose this battle.

I know all that because our lovely nurse came in and said Pablo could eat his favorite food. I've gotten good at spotting high forms of energy. And I don't second guess them. Second guessing is for people who have the time to guess again. Me and my family, we don't got time for that. We have learned to just believe.

We spent the morning getting to know our new friends in the radiation oncology lab. We'll get to know that team very well. Pablo starts a 12 day radiation course on Monday. For reference, we had done 12 weeks of chemo leading up this in-patient run, and we know almost every nurse, doctor, receptionist up in the Oncology Clinic.

Today, Pablo was sedated in the test lab (a mini version of the radiation room he'll be in for his treatments). The team made a mold of his body, which he will be placed in for his rad treats. He will be knocked out for each of the treatments. This is good, even imperative, cos P has developed anxiety during this long stay in the hospital. He'd never be able to have his body bound in the giant mold, with the massive radiation machine whirling around him (it looks like the robot man on the cover of Queen 'News of The World'). While he was out, they placed clear medical tape on his chest and abdomen, and drew reference lines on his body. In addition to his scars, tape sutures, blisters, cables and sensors, Pablo's front elevation now looks like a bombardier scope. It's kind of cool. Kind of freaky. If we'd have started at this part in the story, we'd be mortified. But, having ramped up to the bombardier body, it's somehow not a big deal. By the way, on adults, the lines are actually tattooed on the body. We have many friends who'd need white tattoo lines cos their bodies are already covered in colorful ink.

Lastly, Pablo will get the first injection of the new course of chemo tomorrow. This course is 24 weeks of five drugs, in higher doses and frequency than the prior 12 weeks. I am going to ask Jo Ann to write a post detailing all the drugs and details. She is on point with that stuff way more than me.

At home, the playroom is progressing. Our friend and designer Arianna Sabra has kept the job site moving (while planning her wedding AND nursing her little baby girlee). She has seen Pablo grow up since redesigning the downstairs of our house over three years ago. So creating a fun space for Pablo to be in while he kicks the crap out of cancer is a deeply personal job for her. Friday is the target finish date—good a** news, cos we are hoping to drive our little baby boyee home that same day! (Fingers crossed.)

More later....

Monday, September 8, 2008

Day 22 in CHLA

I just asked my mom if it's possible that we have been in here for 22 days... which means that she's been away from her home with us for 24 days. It is, in fact, true. We started here 22 days ago with Dr. Stein removing the big bump on the right kidney. As everyone knows, there has been quite a lot of activity since then and here we are!

Pablo POOPED today! This is great news. He has lost a lot of weight since he hasn't eaten in 3 weeks and now we start our new chemo regimen. It has me nervous that he's so frail and we're about to blast him with heavy duty chemo and radiation, but seriously, what are our choices? We want the cancer to go away forever. Never to return. And we know that this is the way to do that! So, WE ARE IN!

Dr. M came by this evening and examined Pablo. I asked him a bunch of questions for the umpteenth time and he patiently answered every one by saying, "As I told you..." in the most kind way.

We did learn some new things tonight about home care, daily shots for low blood counts, anti-nausea meds and appetite stimulants. We are swimming in information and are at the point where we need to figure it out and get it sorted. We are scheduled to start the new chemo plan on Wednesday. It is in-patient and we hope to go home on Friday.

That's it from 429-B this evening. Oh, wait! Pablo has requested a slumber party with Nana and me - so we're both here for the night tonight.

love,
Jo Ann

Big News

At 6 a.m., Pablo f.a.r.t.e.d.!

See the big smile on his face on the Pablog banner photo? Imagine that, sans the ice cream cone, and plus a giant green cloud in the room.

That is all.

Actually, no it isn't. A friend just sent us a fart video from the UK—a nation obsessed with the activity. I figure we could all use a little levity at this point in the program. So, if you want to see a totally hilarious and totally immature fart video, click here.