Sunday, November 30, 2008
Saturday, November 29, 2008
Mommy's gone home. Pablo and I walked her to the front door of the hospital a short time ago. On the way, the three of us stopped to look at the giant Christmas tree in the front garden of CHLA. It's lit up in white lights and covered with ornaments. Pablo's entire being lit up when he saw it, and, in turn, so did mine and Jo Ann's. Such a simple thing can make a kid happy, especially when he's been confined to a 20 x 12 foot room all day.
P and I are now in our PJs, and the previews on the 'Harry Potter' DVD are winding away. By the time the actual movie starts, my laptop will be stowed away, and we'll be snuggling in bed. While I type this note to you, Pablo is laying on his back, swinging the yellow nurses' flashlight from one side of our darkened room to the other. He's been loving him some flashlight lately. I want to pick up a book that can show us how to make hand shadow shapes with a flashlight. If you know of one, please pass along a recommendation.
The main attraction is about to start, so I will wish you and yours a good night.
We're realllllly hoping to be outta here in the morning. It's all dependant on the white blood count. More in the morn.
This is slightly tough news. Jo Ann and I thought we'd be home by noon. Just a reminder that we are in the block-and-tackle trenches of cancer treatment. We are living our lives by these tiny scientific metrics—blood counts, medicine doses, body weight, kidney function tests—and our plans and expectations are governed more by the sometimes good, sometimes disorderly behavior of microscopic bits of our little boy's system than by our whims and desires. And in a way, we're very lucky to be going through cancer treatment in 2008. Dr Finley was telling me about the 'dark days' before the digital age of science, and before white blood cell boosters like Neupogen. Sounds like doctors were flying without instruments back then.
I'm headed home for a shower and a change of clothes. Then Butch and I are gonna grab a coffee at Intelligentsia.
Pablo didn't want me to take pix of him this morning, so here are two random shots from our waking hours today:
Friday, November 28, 2008
We didn't have a bedtime book to read, so I told him a story about a little boy called Frankie who built a snow fort with his friends. One night, when the kids were piled in the fort, huddled around a candle telling stories, a baby black bear named Blackie came in and wanted to join them. Frankie started talking to the bear, and the bear spoke back. While they chatted, all of Frankie's friends blasted through the walls of the fort and ran home like madmen.
Look, it made Pablo laugh, and got him to sleep!
OK, time to watch 'The Untouchables.'
Dr F is the man who counseled us on Pablo's cancer the first day we were here, way back in May. He is a grey-bearded man from England, sounds like he must be from Liverpool, but is, in fact, from elsewhere in that fine nation (I forgot where, Birmingham maybe?). Every time I see him in the hall or in the lobby, I feel safe. Why? Because he's a good doctor—filled with knowledge practical and theoretical, an expert at doling out both in equal portion. How you tell parents that their child has cancer is significant. What you tell them about that cancer and the universe of treatment is significant. On Sunday May 18 2008, Dr Finley just made Jo Ann and I feel safe. He set us up mentally, helped us get through the hazy, please-punch-me-so-I-know-I'm-not-dreaming first 48 hours. He foretold the genius and acumen and authority of his colleague, the exotically-monikered Dr Mascarenhas. Like a guy on a sports team whose job is to set up the ball for the guy who will drive it home, Dr F drove us—our paralytic sorrow, our dazed and confuzedom, our disbelief—down the court so we'd be ready to meet the man who would be our hourly and daily guide in the wild, wild 4 West of chemo, surgery, radiation, and more chemo.
I didn't say this earlier in the post, but what I'm getting at is gratitude for these medical dudes. Jo Ann and I were out when Dr Finley came to see Pablo. When Polly mentioned his name, and that he'd looked in on P, all of the above shot to the front of my brain.
The platelets just arrived. The opening scene of 'Dinotopia' is sizzling on the screen (Pablo rarely watches 'real people movies' these days, favoring cartoons). I am about to go home to ride my bike on the deck outside our dining room. (On a trainer, so I don't duplicate—as Grady pointed out yesterday—the Ferrari crash scene in 'Ferris Bueller's Day Off.') When I'm done at home, I'll return to CHLA and pull the overnight shift again. Jo Ann is still not 100%, so she will head home for another night of solid sleep. Have to admit, I am lucky—it's a helluva lot easier to sleep over when we have our own room.
Have a great Friday night. My next post will be tomorrow, unless there's a development. Our love and light to you and yours.
Right now, I gotta run. Jo Ann parked in the underground parking lot, and there's a 15 minute FREE window, which I can hit if I hustle. Just think of what we can do with that $10?
Jo Ann is still not 100%. But she wanted to stay with us until we got int our room. She was in bed all day Tuesday and Wednesday and spent the first half of today cooking. Thankfully, she spent a couple hours this afternoon relaxing with a book while the rest of played Dread Pirate (for the record, I won). Not long after that is when Pablo started heating up.
I am going to snuggle up in the incredibly luxurious reclining 180 degree super flat blue chair bed simulator, and attempt to simulate sleep.
Thank you for staying up late with us.
Thursday, November 27, 2008
Jo Ann says we will be here for five days. That rings a bell to me, but I disagreed with her because I do not want to accept that that is our fate. I want to cry. Nothing busts my serenity and gratitude quite like this.
A year ago today, I would not have guessed that our home would be 56 or so people less crowded for T-day 08. But it was, and it was wonderful. We are some grateful dudes, and we are having a gratidudinal Thanksgiving. Jo Ann noted that she was excited to jump out of bed and start cooking this morning—a pleasant surprise. Another unexpected turn that's expanded our horizons. Another thing was that we ate at around 1 p.m. It was cool to start the food coma so early in the day. We ought to be back to normal blood flow by 7.
Our day started with Grady and Pablo inviting me into a Dread Pirate war. That game took at least two hours. While we were sailing the high seas, Jo Ann began preparing our feast. Midway through our game, she had the turkey breast in the oven. A few minutes after that, we heard a knock on the door: it was John and Shana delivering a cranberry upside-down cake. It was delicious, and my first foray into cranberry cake—right-side up, or upside-down. While we were chatting with J + S in the front hall, Scott and Cathy delivered mac n cheese. For a minute, we had a flash mob on in our front yard.
After the first wave disbursed, Dorrie made a solo appearance with a killer square format apple pie. A short time later, Polly arrived with two pints of Haagen-Dazs (choco and vanil), and it was game: on. 8,124 calories later, we sat down for a family style game of Dread Pirate, which, I swear, lasted two more hours and elicited 14 arguments from our teenage debater, Cap'n Pirate Grady.
At the moment, Jo Ann is out, driving G to Jimmy's house, for T-day, part II. Pablo and Polly are playing hide n' seek, and I am about to wrap up this post to join them.
Our day has gone sooooo fast. But not so fast that we missed the opportunity to be grateful. At dinner we went around the table and stated a few things each of us was grateful for. The common theme: we are conscious of what we have in our lives, and that we are fully aware of who we are, and where we are as a family. We have been robbed of thousands of hours this year. So what? All those days and nights in CHLA have only sweetened this handful of hours we called Thanksgiving. This year, we actually had something to give thanks for: being together, at home.
Oh, and the party will continue next year. You have my word. Just try and remember all the celebrity names you woulda dropped into the bowl this year. I was going to go with a theme—see if you can detect the pattern: Sarah Palin, Track Palin, Bristol Palin, Willow Palin, Piper Palin, Trig Palin.
Wednesday, November 26, 2008
To kick off the season, I have a pretty unique announcement to make:
Tonight at 8 p.m. LA time, I will be a guest on KCRW, talking to DJ Jason Bentley about the Pablove Foundation / Filter Magazine / Urban Outfitters charity compilation. With the double-disc set finally being available online, and the holidays coming, we are launching the second phase of our marketing effort for the project. Erin Chandler, our college radio promotion guru at Dangerbird, pitched Jason to have me on, and Jason loved the idea. Thank you Erin! I love it when things are that simple. This is an especially gracious invitation from Jason—on Monday morning, he will take the reins as the station's music director, and host of its world famous morning show 'Morning Becomes Eclectic.' Not sure how long we'll chat, but I hope to talk about the amazing spirit of the music project and how it lines up with the positive, loving energy of our community (you!) and Pablo's treatment and recovery scene at Childrens Hospital Los Angeles. We'll spin at least a couple tracks from the comp as well.
To tune in on your computer via browser or iTunes, click here.
• To listen via the KCRW media player, click the LIVE tab to the right of the KCRW logo
• To listen via your iTunes program, click the LISTEN TO iTUNES link to the right of the red LIVE CHANNEL button
On a related note, Hrishi from The One AM Radio/Dangerbird is spearheading a holiday party to benefit Pablove Foundation at the new Urban Outfitters on Cahauenga/Sunset. It will go down from 6-9 p.m. on 16 December. A handful of Dangerbird artists (tbc) will perform very short sets. There will be some food and drink. And, of course, the Pablove Foundation comp will be for sale. We'll post full deets closer to the date.
OK, now for today's regularly scheduled post....
What a night we had here in Silverlake! Mommy was sick in bed all day yesterday. Grady spent the night in his room studying for a big test. Pablo and I finished out the night with two gnarly rounds of Sorry! (we each won a game). Toward the end of the second game, Pablo said those magic words—'Papa, I'm tired. After this game, I want to go to bed'—that make any loving parent jump for joy inside. But my post-Pablo recreation time was not as fruitful as I'd hoped. An hour after getting him into bed, the power went out. At first, I didn't realize the power had gone out. I was upstairs, alone, talking to Tony on my mobile phone. The first thing I noticed was that the light outside had changed. As the house lights and street lights in Silverlake valley went off, the moonlight took over as the predominant illumination. It was a once a year moment, and I'm glad to have witnessed it.
Downstairs, Jo Ann and Grady were fishing around under my side of the bed, looking for my emergency Maglite flashlights. We found both of them. Jo Ann took the biggest one, and shined it on the pages of 'Twilight' and kept reading. Grady took the other and returned to his desk to continue studying. That left me with...the light shining off my Blackberry screen. Which was enough to get me up the stairs to look for the LED cycling light in one of our kitchen drawers. The light I found was mainly red, but it gave off an incredibly powerful light. So, I snuggled up on the sofa in the playroom, and red a run of pages in the new Malcolm Gladwell book 'Outliers.' After about an hour, the power came back. I kind of wanted it to be off all night. It's exciting. In a strange way, it felt like a relief to have something to fix other than Pablo's cancer.
In the middle of the night, Pablo woke up screaming. 'Papa! Papa! I had a bad dream!' It was 3:30 a.m. I jumped out of bed, shoulder blocked the door jamb in our room (as I have many times before) as I flew down the hall to P's room. He was standing on his bed, crying his eyes out, snotting everywhere, gasping for breath. As soon as I gathered up the pieces of the scene, I sat on his bed, grabbed him and held him in my arms, and began crying too. I am not sure if I am supposed to cry when my son cries, but it happens—it's a natural response that comes up in me. And I do not swallow the tears. F that. It's taken me a coupla decades to to feel my feelings, and I'm not going to get all stony with my boy, and turn him into a freezy freaky feeler. On the other hand, if Pablo invites me to a therapy session in 20 years to tell me I'm a wuss or that I ruined his ability to laugh at men who cry, I'll work it out then. In 2028. When he's 25, and I am 56. For now, I'm gonna stay with the tears on demand program.
Once Pablo breathed through his fear, and nestled into my arms, he was ready to go back to sleep. There was no way he was gonna let me tuck him back in his bed and walk away. He wouldn't talk about his nightmare. Without prodding, I could tell it was a real mutha for ya. We couldn't sleep in Mommy and Papa's bed since Jo Ann was sick—worse than I was—and we can't risk him getting ill while he's on chemo. It'd be a bad scene. So, we went up to the playroom and set up shop. The sofa in that room is actually meant to be a guest bed (the cushion is a Tempurpedic mattress), so all we had to do was grab our pillows and hit the hay. As we laid down, I told P the story of the power going out, and how we searched for Papa's emergency flashlights. He liked the story of those mysterious and revered heavy torches being put to use—finally, after all the times I told him he couldn't play with them. When I finished, he revealed a bit of detail about his nightmare. I hadn't even asked (even tho I waned to). 'There was a giant bunny. It was a bad bunny.' And that was all he'd say. The omerta of Pablo and the giant nightmare bunny.
When we woke this morning, the first thought on P's mind was to rip into his new fave game, Dread Pirate. I felt like a guy with a paycheck hangover who was being cajoled by a Jazzercize-crazed girlfriend when that one hit. Ouch! Once we got the game up and running, it was incredibly fun. Dread Pirate is a complex game that P and Polly started playing, um, yesterday. The dude was dropping terminology on me about skirmishes, dies (as in the singular of 'dice') and all kinds of intricate rules of the sea. I've said this many times before here at Pablog HQ: I love to see this little boy's intellect and wonder develop. Somehow, I think he's just fine missing kindergarten this year....
Tuesday, November 25, 2008
Thanksgiving 2008, like many other annual traditions this year, will carry an asterisk in the record book. This is shaping up to the year we learned to love the love bomb, and T-Day will be another in a long series of D-Days in this campaign of service from our friends. It sounds like we have a small army of friends delivering a complete Thanksgiving dinner Thursday. And, for the first time in nearly two decades, our gas meter won't get a workout. We will post pics and a full report on Thursday. Wouldn't want the asterisk to go without narration.
Grady came home yesterday after spending over a week at his other house, Casa de Jimmy. Pablo was elated. The simple, pure happiness that those two generate in one another just by hanging out in the house—it's the real deal. One of the unsung difficulties of this cancer treatment scenario is how much G and P are separated for unusually long periods of time. When P is in CHLA for one of his multi-day chemo treatments, Jimmy has offered to have G stay with him for the entire time. This means that G gets out of our orbit for a long time, which always strains our hearts. But this is life during wartime. Along with all the other sacrifices and adjustments we are making as a family, it's par for the course. I want to put my hand up and say that Jimmy has made all of this a helluva lot easier. In the instruction manual for divorced / post-nuclear / post-punk / new wave families, we are writing a new and improved chapter on how to maintain operation of regular life when the offspring of the New Jack dad and the O.G. mommy has a life-threatening disease and the O.G. baby still has to eat, sleep, shelter and get to school on time. Jimmy, as the O.G. baby daddy in my strange white guy play on street terminology, has offered to keep Grady at his crib for long stretches—a huge thing in the 'my weekend, your weekend' life of a divorced family. What's more: every single day when we are in CHLA, Jimmy calls and offers to deliver Pablo's fave Fred 62 brekkie, Billion Dollar Pancakes.
Big news this morning: Pablo is watching 'Little Bear.' We are getting a welcome break from the other animal in his life, Scooby Doo, whose show has burned a hole in our TV over the past few weeks. I could not believe my ears this morning when P asked to watch 'Little Bear,' his first TV love. It's been one Scooby show after another for many, many days. Jo Ann and I both love Scooby from our younger days, and still enjoy singing the theme song with Pablo. The aspect of the show I do not remember from my childhood is the laugh track. Kids probably don't notice the canned laughs punctuating—jabbing out—at the director's desired moment of every funny (and some not funny) scene. To my adult ears, it's a brittle, often annoying device of '70s television that, on our over-the-top surround sound system, chases me down in any corner of our house. I don't like to be told when to laugh, especially when the visual is animated, narrated by Casey Kasem, and doesn't involve either Larry David, Benny Hill or Sarah Palin.
Other than chemo, blood counts and an unheard-of T-Day dinner delivery, life is pretty much biz as usual here in LA: the wildfires are out, and it's threatening rain. Lots of rain. Which only happens 7.28 days a year here.
Only thing is, as is typical for this city in the desert that has no business being a city, the rain predicted by our oh-my-gawd-is-that-really-his-name freakazoid TV meteorologists is still not here. As a midwest transplant, I'm only happy when it rains.
Monday, November 24, 2008
We are taking Pablo to CHLA at 2 p.m. for a blood draw, and, I hope, a quick check up from Dr M or a pediatrician. We want to be sure that his sneezes aren't anything to be worried about.
Will check in later....
Sunday, November 23, 2008
Our day has been governed by Pablo's need for low-key, low-impact activity. When he woke this morning, he ate an orange cream frozen yogurt stick and some banana chips. His nose would not stop running—and didn't until early afternoon. He went through an entire box of tissue while watching his morning 'Scooby Doo' episodes. The half-life of a tissue around a runny-nosed Pablo is about 120 seconds! Good news for the Kimberly-Clark corporation, bad news for our bank account and the environment.... When he wasn't looking, I put the unused tissues back in the box.
P and I played two high-intensity rounds of Sorry!—and I lost both. The dude is ruthless from the jump.... We have a lot of fun playing card and board games. Pablo's game face is sinister and cute, and I can't get enough of it. I truly enjoy seeing him strategize, scheme and strike. It's a glimpse into his future personality, I think.
This afternoon, I went up to Angeles Crest and rode. Not a great ride. It was cold and foggy here at 350 feet. Last year, I foolishly rode up AC with summer clothes on a cool day. On the ascent, the sun went behind some clouds and the temp dropped. A lot. On the descent, I felt like my hands were going to fall off. When I got up there today (2,000 feet+), I was above the fog, and it was hot and sunny. The problem? I was wearing insulated knickers and an insulated long-sleeve jersey. And winter gloves. Ugh! It was unpleasant. Like sitting at a baseball game in August wearing a snow suit and moon boots. On the positive side, it was gorgeous up there today. Clear and peaceful.
When I got home, Jo Ann took her turn to go out into the world. She got a mani-/pedi- and stopped at Intelly for coffee and a ginger cookie treat for the little Wookie—a different kind of treasure. Right now, I'm running out the door to pick up our Sunday dinner at Malo. Pablo's order: cheese enchiladas—and a spicy mint from the big glass candy bowl on the hostess' desk. To be honest, I think he'd be happy if I picked up only the mint. He loves those things.
Saturday, November 22, 2008
¶The tiniest little dark hairs are sprouting up randomly on Pablo's bald dome. In other areas, vast fields of peach fuzz are forming. A few minutes ago, I guided P's hands over his head to feel the new topography of his scalp. He giggled under the influence of the tickly sensation caused by his chemo-darkened hands lightly bristling over his new fuzzy stuffs. We snuggled in our bed, putting our heads at the foot of the bed, so we could see out the big rectangular window above the headboard. We did a visual check on all the cool stuff we could see from that view (beautiful tall trees in our neighbor's yard, the neighbor's porch, and lots of blue sky). Then I told P stories—embellishing tales on each of the animals I saw on my ride this morning. Pablo knows I am making things up, but he doesn't seem to care. He laughs heartily at the adventurous turns of squirrels, coyotes, lizards and birds that are (actually) always nearly flying into me.
¶Last night as we went to bed, our goal was for Jo Ann and P to sleep in, and for me to wake early and ride. Jo Ann had to give P some medication at midnight and 6 a.m.—even when she is planning to sleep in, she has a work agenda. She deserves an award for her fearless and tireless guidance of our family in this bizarre time. She will get many, I am sure. The one she will really care about is Pablo's biological dystopia getting itself in order, and returning him to complete and total biological sanity and a normal, healthy life.
I was a bad boy and stayed up watching the note-perfect Al Pacino tour de force 'And Justice For All' on the new streaming movie feature on Netflix. Because I am getting over being sick, I slept in Grady's bed (he is with his dad Jimmy this weekend). I hadn't even heard of this movie until last night—probably cos it came out in 1979, the year that I was seven, and not in the edgy urban political drama market. The only two movies I recall seeing in the '70s were 'Star Wars' (my dad fell asleep), and 'The Shaggy D.A.' (Scott took me to see it; I think we walked miles each way to see it). Once 'Justice' started, I couldn't believe how amazing it was. If you have a Netflix home delivery account, you can download the Silverlight program onto your computer and watch up to five hours for free, in addition to your regular DVD mailings. It's pretty insane. Plus, instant and free are both a good deals. What wasn't a good deal was going to bed at 1 a.m. and trying to get up at 7 to ride. Most nights, I force myself to stay up and cram in reading or TV—anything to feel like I've given myself time to either tune out or feed my mind. 8 a.m. proved to be the magic get-up time. The upside: it is warmer hitting the road an hour later.
¶Penelope just arrived. Post-shot, Pablo and I are going to climb up into his tree house in the back yard. We have not been up there in months. I went up a few minutes ago and swept out all the funky tree droppings and knocked out the many cobwebs. We are taking Uno, Sorry! and Labyrinth up there, along with a big round tray of snacks: tortilla chips and tuna salad, punkin bread, two lollipops and drinks. We are planning on getting hungry up there!
I came up with the tree house scheme during my ride this morning. I was hoping P would find it as alluring as I did. When I came home, I sat next to him and told him the plan. As as soon as he heard 'I was thinking we could go out' he was like, 'YES!'
Penelope is getting ready for the sure shot. Gotta go hold my boy.
Friday, November 21, 2008
Thursday, November 20, 2008
Wednesday, November 19, 2008
I went to the store to buy him a DVD of 'The Little Rascals' since he seemed to like it when I popped that VHS tape into the deck last week in the nuclear medicine lab. Lo and behold, the long tail wasn't working for me and le petit rascals, so I got him the next best thing, a show he'd never heard of called 'Leave It To Beaver.' On the short drive from the store to the hospital, I let myself win the debate over the question 'will he like the Beav?' Central to this argument was the relationship between an older brother and his precocious younger bro, a mom who likes to cook and a dad who pulls his pants up past his belly button. In short, the winning argument held that P might see the Cleavers as a black 'n white version of his own family. Most of this is a joke, of course—everything except the big/little bro part.
When I showed him the DVD set, he looked at is dismissively, saying something along the line of, 'I'm not going to like that. Where's "Wallace And Grommit?"' I was slightly crestfallen. But not about to miss my mark. After dinner, while P continued to protest, I popped in disc one, and let it rip. From the first note of that wonderful, familiar theme song, P locked his attention on the screen. As the show's simple plot arc played out, peppered with Wally and the Beav's pretty damn amazing old skool linguistics, P snuggled into my shoulder and relented. Three episodes later, he was a recounting to Mommy what was going on in the show. Then I started coughing, and had to go home.
By early this afternoon, it was clear and official: I'm sick. I loathe being sick, especially at this juncture in our lives. I want to be active, getting s**t done, present. Being sick means I can't be with Pablo in the hospital—the number one item on our agenda this week. Feeling like I was coming down with something last night meant I had to leave Pablo's room and go home. Many people I know have what I have—funky intestines, dry throat, coughing, feeling on the verge of sick, but not quite committing. Hopefully it will subside with a good afternoon and night of rest.
Jo Ann encouraged me to take a super hot bath, and get in bed. So that's what I'm doing. When I get sick, I get dumb (some people would argue it's not just when I'm illin'), and I need Jo Ann's direction cos I have no idea how to take care of myself. In fact (psychoanalyst alert: on), when I get sick, I crave all kinds of things that are not conducive to repairing the human body: chocolate, going to the movies, anything sugary, anything to check out. This is the first real sicky thing I've had since Pablo started treatment. Something two months ago was verging on a cold, but never took root. So this is new.
One thing that comes up for me is that the thing in me that wants to check out and makes me forget how to take care of myself—that thing—Pablo will not know that in his life. He knows how to accept peoples' help, and how to just be when needed. Me, I'm actually learning from Pablo. So, like so many aspects of parenting, we just have to stay out of the way, and observe, and the lessons come to us.
This afternoon, Jo Ann shared with me that one of our old CHLA roommates is not doing well. We've become good buddies with her mom, who we see all the time in the clinics, in the hallways, waiting for elevators. It seems like every time we are at CHLA for anything, they are too. Our old roomie (it wouldn't be appropriate to use her name on out blog) is a beautiful, amazing, sweet teenage girl, whose cancer was discovered—like so many people's—when she went to the doctor for something simple, like a back ache. We have been hangin around the cancer ward at CHLA just long enough to see that not everyone is winning the battle. It's easy to witness a fellow patient/family's tough day or a tough week when there's a rise of spirit, energy and prognosis at the end of it. Facing a sustained loss of ground affects us on a cellular level. Like most of you might think from time to time 'How would I feel if my child were diagnosed with cancer?' It's a common, healthy contemplation when you are orbiting around our universe as we go through this. For Jo Ann and I, we have a tangent of that thought when we hear of a fellow patient having a tough time, or the loss of a child's life—except the question for us is, 'How would I feel if that were Pablo.'
I am weeping as I write this. I f**cking hate that I have to confront that ugly question in my mind. As optimistic and positive as I am, and really work at being, I'd be a robot if those kinds of dark questions didn't pop up in my mind. Jo Ann and Polly have both experienced this as well. Maybe it's actually a healthy pressure relief mechanism for the human brain? Regardless, when we hear of or see another child losing the day's battle, or losing the ultimate battle—the battle for life—it hurts. Not in a theoretical way. In a very real way. And at those moments, I realize how short a distance my heart has to travel to hit the ground. These days, it's not far at all.
If you don't know the full deets on the double-disc collection, click here to check out the earlier post. The basics are: tracks from Garbage, Radiohead, Jack Johnson, CSS, Oasis, Silversun Pickups, Darker My Love, The One AM Radio, Eulogies and maaaaany more—all in support of the Pablove Foundation's mission to fund research and treatment of children's cancer at CHLA.
Over 90% of the purchase price goes directly to the foundation, so we need your help to actually sell out the limited edition printing....
Tuesday, November 18, 2008
Night number one of chemo went very well. Pablo slept through the night. Actually, he woke every two hours to pee, but he has become an expert in peeing in the hand-held plastic urinal - without waking up.
In the pic above, you can see Jo Ann's detailed log of each medicine that entered Pablo's body, from 5 p.m. Monday until 6:30 a.m.
On my way into CHLA this morning, I picked up a full Billion Dollar pancake breakfast, scrambled eggs and bacon from Jimmy at Fred 62. Jimmy has continued to be an incredibly solid member of our family team. When I got to F62, Grady was sprawled out on a chair in Jimmy's office. He's sick. Poor kid - even with his brother holed up in a chemo den a few blocks away, it still hurts to see Grady hurting from a cold.
When I got here, Pablo was in full Johnny Carson 'on' mode. He'd just bought a Tasmanian Devil doll in le gift shoppe, and excitedly shoved it in my face to show me his new friend.
Then Jo Ann told me the good news: P had pooed when he woke up. She described it as being 'this long,' placing her hands in the air like a fisherman telling a tale of the one that got away. As much as I'm always game for potty humor, this was a serious conversation between two consenting adults. As long as Pablo's laying logs, we know his intestines and bowel are in good working order.
And that's all I've got for now. Will check in later.
Monday, November 17, 2008
We're at CHLA. Pablo's port was accessed in the oncology clinic, and now we're admitted, and things are rolling, starting with an echocardiogram. We always start this phase of chemo with one of these - the docs need to be sure Pablo's heart is in proper shape.
We are back in room 429, our old room at the end of the hall where we lived for weeks during Pablo's surgeries. This time we have a roomie.
The blood bank is sending a pint of blood up for us. Room service of a different kind. If we start the blood transfusion by 5 or 5:30, it'll be complete by 10 p.m., just in time to start overnight chemo.
We're assuming this week's in-patient stay will kick off with a blood transfusion, since P's red blood cells were low on Thursday, and dropped even more by Saturday. We'll keep you up to date on all this as the day wears on....
Meantime, here's another round of Polly's Pablo pics to kick off the week.... Polly captures his smile like no one else—and nothing makes us smile more than seeing his loving grin....
Pablo and the oncology clinic playroom dollhouse
Saturday, November 15, 2008
Pablo is OK. His blood test showed no infection, so instead of a fast-track to 4 West, he's getting a vial of industrial-strength antibiotic and some fluids.
I brought Grady home so he could start his homework and will head back to CHLA in a few to pick up mommy and Pablo.
Will check in Sunday....Have a safe and fun Saturday night.
Friday, November 14, 2008
On a physical level, Pablo is doing well. No major stuff to report in this realm. His body is bruised in pretty much every region, and some of the bruises are getting up in age. It's taking longer and longer for simple things like bruises to go away. Dr M has cautioned us to engage Pablo in simple play, and to keep him chill as much as possible. This is the hardest thing for him, and for us. Pablo is a crazy little dude whose normal life rhythm involves jumping off couches, stairs and beds. He has to work hard at slowing down. And we have stairs in our house—stairs that are super fun to fly down. We have set a new rule for Pablo—he must turn on the stairway light, and hold the railing. Obvious stuff, but he's not used to physical limitations. So far, he is abiding by the new rule. And he understands why the rule is in place. It helps that Dr M told him this as well. Sometimes, Pablo will get that 'fear of God' look in his eyes when we remind him that a rule is 'because of what Dr Mascarenhas said.' Whatever it takes.
After the exam, Pablo and Polly went to the play room. Once Polly got P outta the room, the topic changed to the big issue at hand: the clinical study, and how its findings affect Pablo's treatment plan. Overall, Dr M feels that we are on the right track to give P the best chance of survival. He frequently stresses the danger of reading things on the Internet, or attempting to superimpose details from another child's story onto Pablo. It turns out this was somewhat–not entirely—the case with our interpretation around the clinical study. Still, the mere fact that three children passed away, and a few others had abdominal probs (similar sounding to Pablo's) scared the hell out of us. Dr M understood this (of course), and then got to the specific business of Pablo. Here are the pertinent points from that discussion:
Dr M wants to reduce two of the chemo drugs by 20%. This is for a number of reasons: to reduce Pablo's recovery time between treatments, which will in turn, decrease risk of infection, and general liver problems caused by the toxicity of the meds. This is the one area where Dr M wants to align Pablo's treatment with the revised clinical study group. The silver lining in this change is that it knocks his five-day in-patient treatments down to four days. One less day in the hospital is a big win. There are three of these long treatments remaining. We check in Monday for the next one. After that, only two left.
That was the easy half of the discussion. What came next was a show stopper.
Dr M wants the Doxorubicin (Red Devil) dosage to remain at the same level as planned. This is the gnarly drug, one drop of which puts Pablo in the red zone for heart failure. Pablo is going to receive a high dose of this (for his body volume)—far more than a drop. The heart failure risk will be with him for the rest of his life. The risk is not tied to physical exertion or anything like that. It is just a general, all-around risk. On an emotional level, this is scary s**t. As cancer parents, we have to put emotion aside sometimes, and put science in the front seat. This is one of those times. Dr M feels that reducing the Doxo could reduce the effectiveness of P's overall chemo treatment—the chief aim of which is to reduce the chance of Pablo's cancer recurring anywhere in his body. If the cancer comes back—anywhere—it is not a good thing. Period. Jo Ann and I have decided not to relay recurrence survival statistics at this time. Our best shot at Pablo ridding this bad stuff from his body is now, on the first go-round. If we knock this cancer to infinity and beyond, he has the best chance of total remission. TOTAL REMISSION IS POSSIBLE, AND THAT IS THE ONLY OUTCOME WE ARE FOCUSING OUR HEARTS AND PRAYERS ON.
To that end, the goal is to kill any cancer cells that may be hanging around and growing in Pablo's body, and Doxo is thought to be a major asset in this war. Keep in mind, we are at war with an invisible, but very real enemy—recurrence of cancer—and there are no easy, risk-free plans of attack in this war. This is the part of the game where we're flying blind, in a hail storm, over a mountain range. Nothing short of that. The questions flying around in our hearts and minds include: Do we agree to have our son's body injected with a high dose of a drug that could stop his heart with no warning, or do we insist that Dr M pull back on the dosage? If we insist on the reduced dosage, and the cancer comes back, will we wonder for the rest of our lives if we did the right thing, if we did enough, if we should have done more? There is no easy or right answer on this. And we don't have to answer the question at the moment, so we will keep discussing. If we want to reduce the Doxo dosage, we'd simply cut off the final dose in February.
As Jo Ann and I have been writing this post, Pablo's been watching his Friday night surprise gift on Apple TV: 'Kung Fu Panda.' Two years ago, we thought of ourselves as a non-media family in terms of our child rearing. To see Pablo's face light up while watching this movie, you'd never know it. Of course, the sea change in our relationship with big media is kind of a necessity—Pablo would go crazy not being able to watch TV. No point in treating him like a Victorian Age cancer patient!
OK, time to get our little panda into bed....
Thursday, November 13, 2008
Wednesday, November 12, 2008
This morning, Pablo reeealllllly didn't want to go to the hospital. I can't recall him ever, sort of, dragging his heels like he did this morning. P wasn't the reason we were late. The culprit was 80% me (trying to hammer out hours of work in 30 minutes), and 20% Jo Ann (a lady's got to tend to her hair and make up, for God's sake!). Overall, he has developed a heightened anxiety around having his port accessed, and around pulling shirts and masks over his head. He has drastic freakouts around that stuff these days. Hope it all goes away when treatment is over in March.
Speaking of dragging heels, P's feet and legs have been heavy for the last week or so. Most days, it's worn off by mid-morning. Not the case today. By dinnertime, P's left foot was actively hurting. Thankfully, we see Dr M at noon Thursday for a check-up and an intensive meeting on Pablo's status in the physical, medical, and treatment realms.
Late this afternoon, I attended a hard hat tour of the new CHLA hospital. Let me say this: I hope Pablo only ever walks through the front doors of that place to share his experience, strength and hope with other cancer kids. I hope he never has to actually reside in one of the spacious, truly giant, private rooms. But, boy, is the new hospital gonna be SIIIIIIIIICK.... Oh boy, I just said that, didn't I?
The tour was for the hospital's board of directors, several foundations who've donated large sums of money (the Johnny Carson Foundation announced a $5M donation this afternoon), and members of the neighborhood fundraising committees. I was invited to make remarks on behalf of the Los Feliz/Silverlake committee. We've raised $750K toward our goal of $2M. Every penny that any of you have donated to us in the form of checks, cayyyysh, or via the PablovePaypal page is counted in that figure. I was proud as hell to stand up there and speak today, and to receive a round of applause on behalf of the entire Pablove community. I tried to think of as many of you as I could while I was standing at the podium. Mostly, I looked into the eyes of this room filled with business execs, philanthropists, and the amazing, bright CHLA development staff, and I thought of Pablo.
Here's a pictorial tour of our morning:
In the pic above, P is eating a travel-size box of Cap'n Crunch in the CHLA cafeteria. He is 5.5 years old, and today was the first time he'd had Cap'n Crunch. Like the rest of humanity, he went mental for the stuff. Jo Ann told him that we needed a rule around sugary cereal: we can only have it at CHLA. She is a sage parent: if she hadn't done that, Pablo would demand it at home. He is becoming an expert negotiator!
Tuesday, November 11, 2008
By the way, counterintuitive is a word I use a lot lately—and not just cos it's a 24 point Scrabble word. We get far more points sitting in our fear and sweating through the intellectual burn in moments like that. On a lighter note, have I mentioned that our neighbors launched an energy drink this summer? It's called Transphusion—every time I see their sleek black van covered with Shepard Fairey-designed logos, I wish P could simply knock back a tall boy of that stuff when his cells go low.
The balance of Monday was bidness as usual in Pabloland. His color came up, and his energy and play level were normal. Grady had the day off school—a special treat for both of them. They watched some bloob toob last night, and played in la sala giochi until (gasp!) 10:40 p.m. Jo Ann and I didn't realize it was so late. The beautiful sound of their happy voices and play patter coming through our bedroom ceiling (the play room is directly above) was so alluring, it could have gone on all night as far as I was concerned.
Things got off to a great start this morning. Pablo went on the drive to drop G at school—a rarity these days, cos he's usually sleeping late. I have a business brekkie at 8 today, so we're glad he woke up happy.
A look at the coming days:
Tomorrow, we have a GFR test. You might remember this one from last month—it's the one where they inject nuclear goo into P's body and scan his brightly illuminated kidney. This test is a walk in the park for Pablo. The machine is not intimidating, and the room where it happens is big and open and unintimidating, and big enough for Jo Ann and I to hang out with him while the scan is going down. The scary part for us (here comes the intellect again) is the nuclear goo.
Thursday noon we have a meeting with Dr Mascarenhas. He will do a full examination of Pablo, and this time he'll see that P's feet and legs are not walking like they used to. He told us in the early days that one of the chemo drugs P is on could have this side effect. It's here, and we're eager to see what Dr M will offer up to remedy it. P fell down a couple stairs Saturday and bonked his head. Nothing too bad (you would have heard about it), but we'll be glad to get Dr M's guidance on this.
Monday we check into CHLA for another five-day in-patient chemo run. I am inhaling deeply as I type this. The novelty and newness of hanging round the hospital has worn off. Thankfully, it's gotten easier for P to be there. That's the important part. And the part that brings about massive massive amounts of gratitude in our family.
Monday, November 10, 2008
Pablo wrote the line above. When he finished typing, he handed my Blackberry back, and asked, 'What does it say Papa?'
We aren't sure what it means, but we had some belly laughs making up silly words out of that string of letters. Please feel free to offer a translation.
Today was a quick day at the Oncology Clinic. We snagged an apple juice and a biscuit in the CHLA lobby. None of the food at home sounded good to P - it only brought on tears. The suggestion of a lobby biscuit brought a smile to his face. So it was an easy stop for us to make as we cruised thru the lobby.
Once we arrived at the clinic, we got our file and his ID wristband. A few minutes later, we were in triage getting weighed (16.9 kg - up from 16.7 kg), blood pressured and tempted. A few minutes later, we were in a treatment room, getting P's port accessed. Once the line was in, our nurse, Jamie, drew blood for his labs, flushed the line with Heparin, and then injected the skinny vial of Vincristine.
On an average week, we'd have his port de-accessed and get outta here. Today, we are hanging around for an hour, until the lab results come back. We are fairly certain Pablo will need either a blood or platelet transfusion. You can tell by looking at him. And his body is covered with bruises from this weekend's play. No matter how many times we encourage him to slow down, walk not run, etc, it's impossible to avoid the bruising - or the falling, tumbling, skidding. When P's white blood cell counts are as low as they were this weekend, I love playing games with him, or watching a movie. Anything involving sitting still.
We had two marathon Uno games this weekend. One with Grady on Saturday, and another with just me and P on Sunday. That one lasted 90 minutes. Insane. In my kooky brain, I figure any block of time he's not scampering around the house is well spent.
Speaking of time well spent, I am headed down to the pharmacy. We need more Lidocaine, the white cream that numbs the skin above his port so he doesn't feel the needle stick. When we do our family's 2008 Best Of list, Lidocaine will deffo be in the top 10, along with In N Out cheeseburgers and Scooby Doo, caffeine, Dr Mascarenhas and all of you.
Saturday, November 8, 2008
Our friends Gretchen and Anne are here for the weekend from New Orleans. They snatched Jo Ann this morning to go out for a ladies' afternoon of mani/pedi treatments, brunch, and shopping...so I don't think we'll see them anytime soon!
We're having a great time back at the ranch, and now that I'm over the initial sting that we didn't get to accompany them, I'm happy that J is getting some fun time outta the house, and without the pressure and responsibility load that she carries eight days a week.
An update on Pablo's treatment:
Dr M and his colleague Dr Marcio Malogolowkin have assured us that they reviewed Pablo's treatment plan when the changes to clinical study came about. We have been speaking to them on email (Dr M is in Brazil for a conference), and the detailed information we have is limited. We have an existing meeting scheduled with Dr M on 13 November, and he's assured us that we can get into the fine details of the treatment plan at that time. No matter what, this news came at a good point in Pablo's chemo cycle: he is on his two weeks of out-patient Vincrsitine, a drug he's been getting from day one that is not addressed in the At this juncture, Vincristine is an appetizer, a snack, compared to the three- and five-drug cocktails P gets on his in-patient stays.
Hope you are having a great autumn Saturday. Talk soon....
Thursday, November 6, 2008
What is the news?
The treatment protocol that Pablo's on has caused serious complications and deaths in an alarming number of children who are enrolled in a national clinical study. Pablo is not part of this study, but his treatment is following the exact same protocol and he is subject to the same risks. The head of the national study has closed the trial and has decided to alter the chemo doses in an effort to reduce the toxicity and the number of complications and deaths from the treatment.
Here are the facts we learned: six of the 53 kids in this study have experienced life-threatening complications (gastrointestinal problems and bowel obstructions), and three kids have died as a result of the chemo, not the disease — two were directly linked to Red Devil Doxorubicin's rugged treatment of their hearts. One of the stated risks of Red Devil is heart failure (not just during treatment, but at any point in his life). We have been assured it's a slim risk for Pablo's healthy ticker. Fair enough. But on an emotional level, this new news throws all statistical probabilities out the window. We all know Pablo has had intermittent and often unexplainable gut aches and pains for a long time, which is in line with the kids in the study group. I don't know what signs—if any—would precede heart failure, and kind of can't even go there.
I've heard other parents talk about checking their young kids at night, to be sure they are breathing. I had grown out of this as Pablo got older. Last night as P was sleeping, I found myself staring at his abdomen to be sure it was moving. My mind was racing, contemplating what I'd do if it weren't. That's one of those pinch tests the intellect loves to engage in at a time like this.
This is a lot of information, for sure. This does not mean that Pablo will experience any of these challenges, or that he could lose his life to the very treatment that's aiming to cure him. I am not a doctor or a researcher, and it is not my place to assign an absolute connection between what has gone on with Pablo and the reduction of the protocol's chemo regimen. What I am qualified to do (as is Jo Ann) is to be deeply concerned about this turn of events.
The fact is, this cancer s**t is scary on a good day, when you think everything's in its right place, and all will be over soon and we can get back to our normal lives. When information like this lurks up on us—info that says the treatment itself could harm or kill our little boy—I kind of go into free-fall. We've gotten used to being OK with the un-OK-ness of P having cancer, of P's treatment extending five or six months, of P not being able to start kindergarten, of P being home bound. There is a simplicity in the chaos. When you find that simplicity, you cling to it. Any sudden change of course is jarring.
This news is more than a change of course for Jo Ann and I. It's the addition of mystery to our lives. And mystery is a real mutha fo' ya. It's a turbo-charged shot of not knowing, and not knowing equals pain. When it comes to our boys, we don't like not knowing. When it comes to our little boy, Pablo, we thrive on things going according to plan.
There's nothing more to say today. I'm ready for this day to be over, so I can tuck Pablo into bed and fall asleep with him tonight.