Friday, October 31, 2008
Jo Ann wore a witch costume. Polly wore Grady's old sheep head mask/hood thing. Grady put on his old bear suit, eventually taking the body part off and keeping the head dress. Me, I wore a Dangerbird hoodie. I was just happy to be along for the ride. We piled into my Prius and cruised one mile down the Silverlake Reservoir, parked illegally on Tesla and hit treat street for some high fructose booty. Pablo understood that we were going to hit it and quit it. We talked about our plan all week, so he'd be OK with it when today came.
The candy-heist operation went off flawlessly. Pablo waited patiently for children to vacate the front paths of houses so he could scamper up and snag a candy drop without brushing up against others. He even said 'Trick or treat' this year—something he's been far too shy to do in the past. We were out for about 30 minutes. Pablo got 26 pieces of candy (he counted the moment we got home), and retained 23 after giving Grady three items that contained peanuts (he's allergic). We love when Pablo shares, which he does freely and sweetly. It's so cool to witness.
This is the start of the holiday season, and it's a helluva relief that we were able to celebrate Halloween. It's hard for me to feel warm and fuzzy about it, because I am sort of stuck in a gritty, tough place this week. But I know that I am grateful, without a doubt. If we were in-patient at CHLA, or if P's white blood cell count was too low for him to leave the house, I know we'd be down in the mouth right now. While we were out here, I kept thinking that next year we'll be out wrecking shop, for the whole night, without regard for germs, coughing coffins and sneezing ghosts. Next year we can think back to all that stuff we lived through. I'm looking forward to the one year marker—Halloween 2009.
Here is the pictorial story of our Halloween night:
Wednesday, October 29, 2008
Jo Ann, Pablo and Polly got home from CHLA late this morning. This hospital stay went by very quickly. They checked in around 3 p.m. Monday, and got home before noon today—less than 48 hours. Not bad, considering some of the long and unexpected stays we've had recently. After a tough Monday night of vomiting and interrupted sleep, Jo Ann put her exec producer hard hat back on on Tuesday, and got a plan together with the nurses. When she woke up Tuesday, she realized that the night nurse hadn't administered Pablo's Zofran (anti-nausea) meds at the proper intervals. Once she got the Z doses sorted, everything fell into place. He hasn't thrown up since Monday night.
Right now, Pablo is happy, alert and h.u.n.g.r.y. The dude has pulled me into the kitchen twice in the past 30 minutes to eat more food. When Pablo eats, the whole family feels good. Nothing tells us that P is doing well more than a fat appetite.
Back to Grady. He lost it when the Phillies won. Jimmy was on the phone with him two seconds after the final pitch. Jimmy's from P-town, so the World Series was serious business to him. Pablo recognized the Phillies' jerseys from one of Grady's old little league pictures. There was almost a TV war, but the last pitch of the game went off just as Pablo was starting to whine about turning the channel. Everyone won that game.
Trick or Treat is Friday night. Pablo's silver robot costume is ready to go. He's already broken in the mask. We live in the hills, and nobody trick or treats around here. There are no sidewalks, cars drive waaaay too fast to have kiddies prowling around in the dark, and the street lamps around here are spaced oddly, leaving giant dark patches in between over-luminescent ones. In our neighborhood, we hit up Armstrong Avenue, a quaint residential street a few blocks from here, at the end of the reservoir. The scene on Armstrong is insane. A cross between being at an all-school skate party and an all ages Goth night back in the day. The cops barricade the street so kids can safely cruise the pavement in the dark.
Every year for as far back as I can remember (read: two years lol), we have been late on the scene on Armstrong. One or two years before Pablo was born, we hit the pumpkin patch walk at Grady's old school, Pasadena Waldorf. By the time we got back to Sizzlerlake, the candy catch on Armstrong was weeeeeeaaaaak. I remember it being rough.
This year, we are doing the exact opposite. Our twin goals of giving Pablo the Halloween experience he has been fiending for and keeping his body safe are guiding us to a whole new plan. We gotta be the first people on Armstrong. We don't even know what time that is, but we'll figure it out. We gotta prep Pablo for the reality that we're gonna hit, like, only a dozen houses. And then we gotta get the heck outta there and go home. Halloween is the ultimate in hand-to-hand candy combat, so I've been rapping to Jo Ann about adding some industrial gloves to the robot costume, to keep his hands away from germs. I think we could get him to wear rubber gloves—he understands the need to keep his hands free of funk, and some sweet green rubber CHLA gloves would look kinda cool with that costume. We've also been talking about replacing his candy loot with fresh, sterile candy once we get home. Yknow, a switcheroo when he's not looking.
Our friends Murray and Natalia from the Dears (they are on Dangerbird Records and Management) are going to be joining us, with their beyond-cute daughter Neptune. They're from Montreal, and we are psyched to have an international angle to this year's festivities. By the way, the Dears are playing live tomorrow at 11:15 a.m. on KCRW's Morning Becomes Eclectic. If you have ears and enjoy using them to listen to cool rock music, tune in and check it out.
Awwwwright, that's a wrap. TTYL.
Tuesday, October 28, 2008
I will check in again later tonight. Gotta run....
Monday, October 27, 2008
For dinner, Pablo had rice and chicken and a Kefir yogurt drink. On the way here, I picked up some lemon cake and a kid's hot cocoa for dessert. Lots of calories for his skinny body. He weighed in today at 17 kilos (37.4 pounds), so he can eat with impunity. For days. For weeks. Lucky him!
As I am writing this, Jo Ann is reviewing Pablo's chemo schedule with our nurse, Willow. There are a lot of details to attend to. It's not as simple as pumping chemo drugs into Pablo's port. A carefully timed dose of Benadryl is required prior to some of the chemo drugs he's getting. Doses of Zofran are always on the menu—that's the stuff that keeps the nausea in check. Jo Ann has mastered the drug drill—the ultimate dedication of motherhood. When I see her in 'executive producer' Mommy mode, I am proud to be her husband, and always feel lucky to be her partner. I always feel this way, but you know what I mean—seeing my wife live up to that 'in sickness and in health' thing is truly a gift. It's nice to know you can field a full team when the game bell goes off for Monday Night Chemo. And that's the only way Jo Ann rolls.
Pablo is getting a blood transfusion tomorrow afternoon. He will get the blood I donated last week. If he needs more blood, the friend who donated directly after me will be up at bat. If you have donated at CHLA recently, we have seen the kids who will get your blood. They are in the hallways walking with their parents. They are in the play room at the end of the hall. They are walking through the lobby, masked and bald, one hand gripping a parents' hand, the other on an I.V. pole. They are lying in the beds that line this hallway in 4 West. Many of you who have donated blood at CHLA will never see the faces of the children who might get your blood. Trust me, they are rocking it up here, and they appreciate your biological generosity.
Alright everyone: Pablo is setting up the board for the three of us to play his fave game of the moment, Race To The Roof. Gotta go. Will check in tomorrow.
One great exchange I recall is this one, which went down after I kissed Pablo goodbye, on my way to the office.
GRANT: What is your dad's job?
PABLO: I don't know. He either drives his car or rides his bike to his office.
I was on the floor when I heard this. It was funny, and interesting to think that, in Pablo's eyes, I am a mysterious Don Draper type who just goes off to some office. I wish I had Don Magic Juan's wardrobe—and a client like Jimmy Barrett. As soon as I could find her in the house, I told Jo Ann about my unintentional eavesdrop. She found it as cute and hilarious as I did.
At 2:30 p.m. today, Pablo is due back at CHLA for blood labs and an exam by Dr Mascarenhas. If all is good with his blood numbers, he will be admitted, and will begin the first of two chemo treatments (three drugs) this evening. He'll be home on Wednesday, barring any unforeseen challenges.
Here at our house, we don't have any medical equipment. No meters, syringes, electronic devices from the R&D labs of Philips, Medtronic, or GE Medical. What we have here at home is love, life and the pursuit of playfulness. Sometimes, when we are home from CHLA, Jo Ann or I will comment that we wish we knew Pablo's blood count. It's cool to have a daily read of that while we're in-patient. And while P's activity level is not a scientific gauge of his health, the tone of his voice, and the intensity of his play is a very accurate measure of his overall state of well-being.
As I write this, Pablo is jumping up and down on our bed, playing with three cans of Kool-Aid. He is trying to entice Jo Ann to go upstairs and turn one of those cans into scented organic homemade Play-Doh. She doesn't need much convincing—they are already upstairs mixing their crazy concoction. She loves making that stuff with and for Pablo. He has as much fun making it as he does molding animals, faces and balls out of it. He'll get hours of fun out of one giant mound of that stuff. Where he's headed for the next few days, he's got nothin but hours.
We'll check in later, after we get settled at CHLA.
Saturday, October 25, 2008
All that aside, today has been a good day because Pablo has had a good day. His subjective processing has been blowing my mind lately. Translation: he has been making the cutest, most adorable observations—tons of 'did-he-really-just-say-that?' moments for Jo Ann, Grady and I. My amazement around all this is enhanced by the fact that for months P has not been interacting with other kids and hasn't been in a school setting. I have always aligned 'development' with those two things. It's refreshing to witness all this goooooood stuff in the face of all the challenging bits and bobs we face on a daily basis—and to know that cancer and cancer treatment has not affected Pablo's intellectual and sensory development.
Pablo's sense of wonder is growing by the day. His ability to discern the meaning of a complex situation is growing by the day. He remembers minute details about his medicines, what a doctor said, or a food that he can't eat, even when we forget.
I can wring the good stuff out of any day. Still, I keep anticipating the drop of the other shoe. It feels a lot like an inability to feel joy. But it's not. Which makes it more painful, awkward, niggling. Today, I went out for a bike ride. Mind you, my body wants to do nothing, but my mind is saying we have to get out and turn the pedals. So, I suited up, and hit the road. It was 90 degrees and felt hotter. Riding is no fun when it's that hot unless you've already got 40 or 50 miles on the odometer and you are heading into the second half of your ride, cruising along with friends in the mountains, and having a great time. I was by myself, on Sunset Boulevard, turning up Vermont and climbing it to its eventual end at the top of Griffith Park. The air was thick and pasty, the sun unforgiving. Something was not right with my lungs—or, maybe it was that knotty stomach/full feeling I get when I'm angsted out or scared. Why am I scared? Because every time I feel good or positive or happy, I fear that it's not fair to Pablo. Or that by being happy, I'm going to trigger some cosmic collapse that will result in some bad turn in Pablo's health. On more than a few occasions, I've made plans to be happy / do early morning activities with friends, and Pablo's had a rough night of sleep. Which has put the being happy / activity with friends out the window. On some of those occasions, we've ended up in the hospital. So I'm not crazy. It just feels like I'm headed that way.
While out on the bike, I dropped in at Trails Cafe in Griffith Park. Our friends Shana and Nina were running the Obama phone bank. People were calling North Carolina on their mobile phones (free weekend minutes working for the good guy) while sitting at picnic tables under 50 foot tall trees. It was beautiful for many reasons. When I got there, Hrishi had just left, and Polly was arriving. Shana talked to me in between giving direction to volunteers, handing them talking scripts and phone logs. It was fascinating. I asked her to help get us a lawn sign from the Obama office. She said yes. I have tried to locate the Obama office a few times over the past few months. But after seven total minutes of effort, I came up empty. Thank God for Shana.
OK, Jo Ann and I are headed out for the night. First stop is the Velo Pasadena 20th anniversary party. Second stop is dinner at Lucques in West Hollywood with Jo Ann's lifelong friend Paul from New Orleans. He was her general manager when she worked at the Esprit store on Lee Circle back in the '80s.
Kind of funny to go from the Barack Obama phone bank to Lee Circle. This is the modern world.
Friday, October 24, 2008
If you are using the old service, the updates will say they’re coming from:
You should unsubscribe using the link at the bottom of the emails and then sign-up again with Feedburner. There is a sign-up box on the PABLOg sidebar where you can enter your email address.
If you are using Feedburner — the current one — you should be getting all the day’s blog posts in a single email (I get mine at midnight every day), and it should say the updates are coming from:
CHLA's Blood Lab is a cool place, and they have great cookies. Our friend Raul, who runs the place, will make you feel at home. They have weekend hours.
An individual can donate blood every 56 days. Platelets can be donated much more frequently (like every seven days or something). Even if you are not O+, we ask that you donate—CHLA spends $1M a year buying blood from the Red Cross. Every pint donated at CHLA saves them money.
Francine McDougall will be commandeering this project—she will be scheduling donations so that we have a fresh supply at all times. Donations need to happen at intervals—if everyone donates in the same period, the blood will expire and go to other patients.
please email Francine your questions and/or commitments:
Thank you in advance for emailing Francine (not me and Jo Ann) about this!
Thursday, October 23, 2008
All of this good-day-ness makes the energy around our house shiny and happy. It's hard to stop and Zen out on it as it's happening—like any cancer family, we use the emergency-free days to catch up on all the hours and days we've lost to the emergency department, the oncology clinic and the 4 West ward at CHLA. Pablo has the most catching up to do, cos he can't play when he's connected to three different drips on an I.V. pole. When I sit down to write these posts, my brain slows down just enough for me to know how I feel. That's one of the reasons I keep writing—it helps me to process.
I don't want to jinx the three consecutive great days we've had this week, but I hope it continues through the weekend. Monday morning we check back into CHLA for three days of in-patient chemo. It's hard for me to commit that fact to writing. It makes me deeply sad and deeply angry. I love CHLA and all the amazing doctors and staffers—they are in the process of saving our son's life. F***********ck, am I angry that we have to go back there. That Pablo has to lay there. Sleep there. Listen to the crazy-making beep of the I.V. pumps. Share a room with another cancer sick child. This might be hard to get, but the thought of going back there after ALLLLLLL the time we've spent at CHLA in the past five months is like being forced to eat a pizza after eating a tube of Mentos and guzzling a two-liter of Diet Coke. It's just hard to get OK with it. Thank God I am jumping the gun. There are three more days ahead that won't involve the harrowed halls of CHLA. I am grateful for that.
Gratitude feels a lot better than anger. So I am going to sign off on a note of gratitude for all of you. The emails, blog comments, phone calls, cards, gifts and blood donations—all that stuff—keeps us going. We relay as much of it as possible to Pablo, and he always smiles a giant smile of happiness to hear your loving, kind words. So, thank you.
We are giving all of you a great big hug and wishing you a safe, sleepy night.
Wednesday, October 22, 2008
When I got home last night, we started a new book—'Charlie and the Chocolate Factory.' I could tell he wasn't into 'Lemony Snicket,' and, to be straight up, it was bumming me out. The kids' parents die in the first chapter. The last thing Pablo needs right now is a sad story. 'Charlie' is a much better tone for Pablo—fantastical, sweet, hopeful. A great story about a young boy changing his life, lifting himself and his family up on a chocolate-drizzled rainbow. You get the connection between Charlie and our gack-drizzled boy.
Tonight, before we start reading, I'm going to show Pablo a clip of my Milwaukee boy Gene Wilder in his Willy Wonka get up. For my generation, Gene was Willy Wonka. That movie was hauntingly, freakishly cool and engaging when I was a kid. I never thought about what it might be like to read the book to my son—partly because I didn't know the movie was based on a book, partly because I didn't know I'd ever be a father. I'm glad as hell that I am, and grateful as hell for the simple moments Pablo and I share. If this is as good as it gets, I'm down.
Tuesday, October 21, 2008
So, altho there is no magic pill that makes cancer go away, I will say that laughter is a good stand-in until scientists invent one.
Pablo had another good night of sleep last night. We don't know his blood counts, but we know he is eating at a nice clip, and that he is active and happy.
I will check in with more info later.
Monday, October 20, 2008
This morning, he woke up on his own, and crept up the stairs as quietly as he could. I was in the front yard fetching the morning papers when he made his move. I looked inside the front door and saw a large top hat gliding though the foyer. Underneath was our pale and skinny little fighter, setting up to scare his Papa. Even though I knew what he was up to, I walked into the living room and allowed him to spook me out. We laughed our arses off. Now, THAT'S a great way to start any day.
So far, everything's going great today—all that food he ate last night stayed down. The cherry fro yo he ate while watching 'Maggie and the Ferocious Beast' stayed down. It feels like Pablo is shifting into the next phase of his recovery. It feels like he is gaining ground in this strange game of chemotherapy, the magical cocktail of medicines that destroys fast growing cells in order to save his life. An hour of good news and retained food feels like a month of good days to us at this point.
When we see Pablo smile and jump around, we know that he is in the boxing ring, ready to hit his cancer square in the jaw. Hell, he could hit me square in the jaw. As long as he keeps that smile and that pep in his step, we are on the right track.
OK, gotta run.
Sunday, October 19, 2008
We didn't expect to be home this evening. But I am PLEASED as hell to tell you that I'm writing this from our TV room. Pablo is sitting next to me - he's got five days of 'Max and Ruby' to catch up on, and that's precisely what he's doing!
Dr Mascarenhas emailed Jo Ann and I regarding the MRI. Pablo's kidney is CLEAN!
We've been home an hour and P has already eaten a frozen yogurt, a small pack of trail mix, half of a giant chocolate chip pancake...and he just asked for ANOTHER fro yo. This is fantastic. There have been more than a few days over the past few weeks where we have to beg him to eat. His appetite has vanished. So, you can see that a request for food is one that's met immediately.
This evening, Dr Mascarenhas instructed us to take Pablo home and fatten him up over the next week. Of course, we are hoping all this food will stay down. That's the tricky part.
I wish you could all see Pablo laying on the sofa, snuggled up under his fave blue blanket, catching up on his world of Tivo'd toons.
Most of all, I'm glad we're starting the week with good news. We'll get a good night's sleep tonight for sure.
And we wish you the same.
We just returned from the MRI lab. Another major test checked off the list. Dr M recommended that we do the MRI without sedating Pablo. We agreed. Any time we can minimize the meds, we're for it. Plus, with all the experience P has had with the CT machine, our instinct was that he'd be OK with the general experience of the MRI. He was generally OK with the MRI machine, and with laying on the bed. When the tech strapped him across the chest with a thick white Velcro strap, his anxiety heightened. When she placed a giant padded sensor on his chest and strapped that onto him, he nearly backed out of the deal. When I tell you he freaked out, the words don't and can't convey what it felt like for him, or for us, to see him, helpless and mortified. The overall premise of our son having cancer is gut-wrenching, disorienting, and crazy-making. We are rarely so blatantly scared as we were today.
Jo Ann and I did our best to calm him, and it worked. The tech pushed a button and the bed slid into the donut.
Jo Ann stood at the receiving end of the donut. She stood with her arms extended, placing her hands on Pablo's head as the bed slid toward her. I kept my hands on his legs and feet. We held these bookend positions for the duration of the scan. The procedure was meant to take an hour. At the end of the hour, the tech came in and told us she had to do an additional 15 minutes of scanning. P slept for a large chunk of the time, except the start and finish.
Now, if you've never been in the same room with an MRI machine, let me describe it for you. The machine makes a constant pounding / thrumming noise, at about 140 beats per minute. Then there are a few other sounds each of which sounds like something off the second Nine Inch Nails record—scary, loud, menacing, like note-perfect industrial rock string stabs and horn jabs. Add in Pablo's screaming, and you've got a cacophonous fright-fest, just in time for Halloween. Just when it was getting unbearable for Pablo and for us, it was over.
All the spooky stuff was worth it. I went into the tech's cockpit to see the images. Three giant flat screen computer monitors showed various views of Pablo's body from all different angles. Some of his organs were pulled up in sub-view windows. I looked at the pics and said a prayer that they show conclusive evidence of a cancer-free Pablo.
Dr M and the radiologists will review the game tape, and let us know the real answer. In the meantime, we can all pray that Pablo is still cancer-free.
Friday, October 17, 2008
Dr Mascarenhas reviewed the CT scan, and showed us the imaging. His determination is that the spot on Pablo's kidney is not a new tumor growth. He believes that it may be a normal, healthy growth of the kidney itself.
To get a better look at it, and for our peace of mind, he has ordered an MRI. This will take place Saturday or Sunday. It will give the doctors an even clearer view of the kidney - the best imaging, short of going inside surgically, which we do not want to subject Pablo to again.
Thank you for your love in emails and comment posts. Your messages always make us feel like we are standing with the support of friends. That's what it's about.
Good night. We'll check in tomorrow when we have an update.
They examined his entire abdomen, his liver, the partial left kidney, and the blank space where the right kidney used to be. Dr Mascarenhas reviewed it, along with Drs Hardy and Stein. The spot formerly known as Pablo's right kidney looks great. No probs visible in the liver. All great news. The left partial kidney is a different story. There is a spot on it. And that concerns Dr M.
He ran Jo Ann through the list of what it could be. There are two plausible options on that list other than a recurrence of a tumor. It could be a blood clot. It could be the growth of the kidney lookin' funky on the Ultrasound. The third and least likely option is, in fact, a tumor recurrence. It's unlikely cos of the intensity of the chemo treatments, and the solid course of radiation Pablo received last month. It's also because the margins on the removal of the O.G. tumor were very good. Lastly, it's not likely to be a new tumor because it's statistically improbable with the favorable histology of that kidney. We like to use the stats only when they work in our favor. Otherwise, we don't have much use for the numbers. We take it one hour, one day at a time.
What is in our next hour is a CAT scan. This is the next step up the imaging ladder. They will inject a contrast fluid into Pablo's port, and scan his kidney. This will instantly give the doctors a high rez view of what's going on in there.
So...now that we have all the facts 'n figures out of the way, let's talk about the emotional part. This is the most important part. I feel like I haven't talked recently about emotions in motion. This is the stuff that truly rules the world. How we connect with ourselves, with one another. When we got Dr M's CT scan email at noon, I called Jo Ann. Dr M was already in the room talking to her about the situation.
I could tell from the sound of her voice that something was up. 'You should come back here right away,' she said. I had just walked into the office after being out at meetings all morning. I wolfed down a couple more bites of my lunch, grabbed my bag, and headed out. On the short drive down Sunset Boulevard, I cried. It started out slow, my eyes filling with tears. I let it happen. I did not hold it back. My welled-up eyes gave way to outright weeping. It felt good. I needed to express my sadness, my overwhelmedness, my f**cking why-can't-this-just-be-done anger. It was hard to drive. I was happy for each red light I hit. More time to let out the tornado before reaching my destination—my pale, bruised, skinny little boy...my happy, hilarious, lovely little boy.
When I walked into the lobby at CHLA, Hrishi was stepping out of the Blood Bank. I'd emailed him 90 minutes earlier, asking if he and his fiancee Lindsey could donate blood. He dropped everything and came over, bringing his friend Andy May. Seeing Hrishi made me feel safe, made me feel protected and looked after. He has that effect on people. Especially when he appears in front of you on a day like today. Hrishi, by the way, is the man who keeps this blog looking great, and functioning properly. He has designed all the 'cover pages' and fixes any technical glitches within minutes of my 'help!' emails. He is also an artist on Dangerbird Records—his band is called The One AM Radio. Check out his music. It's totally a view into his soul.
When I walked into the room, he and Polly were playing a game. He was laughing. Jo Ann was sitting in the big blue chair. I breathed a sigh of relief. The world is outside. I am here now, with three-fourths of my family. All is OK. In this moment.
We will keep you up to date on the result of the CT scan.
Please send your love + light our way.
Thursday, October 16, 2008
He decorated a small pumpkin with foil-y, reflective pumpkin stickers (see pic below).
He also decorated a cut-out paper pumpkin, and the hand-sewn ghost fella you see in the pic below. He wrote his name on the ghost, and fell asleep with it. When I got to the hospital this evening, Pablo was out like a light, with his hand-labeled ghost resting next to him. The skull and crossbones on his red striped shirt were covered in Halloween stickers. Cute and not at all scary to me. When Polly went home, I took off my shoes and climbed in bed next to my precious little boy. I put my arms around him, kissed his hot, bald little head and closed my eyes. I'm finally here, and he is sawing logs. This is as good as it's going to get today. No point in fighting it.
I was grateful for that moment of clarity. It's not always that easy for me. Much of the time, I do want to fight it. I do wrestle with the strange logic of being at work, pushing pushing pushing behind my desk, like a hamster on a wheel, and then wondering what Pablo and Jo Ann are doing down the road at CHLA. Jo Ann and I had dinner this evening on Larchmont, at her favorite Italian spot, Girasole. We talked about the guilty feelings I've been having when I am away from Pablo, at the office, or sleeping at home, so that I can get a solid night's sleep and go to work the next day. Jo Ann understood my pain, and explained to me that I'm supposed to be at work, and she is supposed to be here at CHLA, with Pablo, or with Grady. This might sound obvious to you. But when you mix in lack of sleep, over stimulation in the mental, physical and emotional planes, and a schedule that does not stop, 'obvious' goes out the window. Jo Ann's empathy made me feel a lot better. Instantly. That's why I love her. I think I'll keep her.
Good night, from our room to yours.
Wednesday, October 15, 2008
On the way to CHLA, I picked up Tomato Pie pizza for me and Jo Ann. That kind of real food doesn't interest P at the moment. Jo Ann suggested picking up lemon loaf from Starbucks for him. There was only one problem with that: lemon loaf is scarce at 7:30 p.m. So, I bought one of everything else in the pastry case: a blueberry oat bar, a banana walnut bread, some dry roasted almonds and a chocolate donut. This kind of food would normally never come near Pablo. Well, not all at once. Today, our single concern is getting him to ingest calories. He has lost so much weight that Dr M said if P doesn't start eating, he will have to drop the dreaded tube down his nose to inject food directly into the stomach. That didn't sound so good to Pablo. So when I arrived with Starbucks bags, he found one item to chow on. He also drank an eight ounce bottle of water laced with the laxative Miralax, which he downed while the three of us played a board game.
As we played, Jo Ann become increasingly concerned about the bruises on his body. One on his right forearm had formed into a tough green and purple lump, and one had appeared on the left side of Pablo's skull. We asked our amazing nurse Danica to call the pediatricians so they could take a look. When they arrived, they found another bruise inside his top lip—it looked like a large red dot, almost like he bit his lip. This is all to be expected when his blood platelet count is below 5,000 and his white blood cell count is below zero. I am learning that having a clinical or intellectual understanding of something is cool, but doesn't soften the emotional and mental blow when it actually happens.
The doctors (both were Residents) checked with their Fellow, and ordered a blood platelet transfusion. Pablo was asleep when the platelets arrived. It took 15 or 20 minutes. This will be Pablo's second transfusion in three days. He got a blood transfusion on Monday afternoon. Those two words 'blood' and 'transfusion' sound so hardcore. Six months ago, I'd have thought a blood transfusion or a platelet transfusion were two of the hardest things somebody would have to deal with. That perception is gone now.
I want to end on a happy note. Cos there's plenty to be happy about. Laughing with Pablo while we played our game this evening was the greatest gift. The perfect end to a hot, long, tough day at le office. He and his mommy kept calling me a cheater. I forgot why. Something about me wanting to re-roll my dice when I didn't like the number I'd rolled. It seemed perfectly justifiable at the time! And it didn't help me win. Pablo prevailed in one game. And Jo Ann won the other.
Good night. Please keep your love and your light focused and shining our way.
And if you've got any extra blood or platelets lying around, please come down to CHLA to donate. Seriously. If you are O+, you can make a Directed Donor drop, and Pablo will get your blood. If you're not O+, you'll be helping another child who needs your blood just as much.
Call our buddy Raul at the CHLA Blood Bank (323-361-2380). He will ask you some basic questions to be sure you're eligible to donate. If you are, they will hook you up with a plate of cookies and some OJ and you'll be ready to go.
Tuesday, October 14, 2008
I'm writing this from the Emergency Department, our temporary home until a bed is ready upstairs. I just returned from running up to 4 West to check on our bed. The first order of business was to be sure there is a bed available. There is a single, solitary bed opening this afternoon. Luckily, a little boy is going home in a few minutes. Lucky him, lucky Pablo. I don't know what would happen if there were no beds. I'm sure it would be a lot like getting to the Ritz-Carlton and finding out that your rez was for yesterday. Except, in this story, to punch up the scene, you'd have cancer, too.
Pablo's port was just accessed. He was totally asleep in Jo Ann's arms. Now he is awake and screaming cos his tummy hurts. His gut is still filled with poop and gas. I mean, everyone's is. But Pablo's gut is filled like the arrivals hall at Ellis Island in the spring of 1907. There's no room in there. No matter what he does, the pressure inside him pushes back. It hurts. And that's what causes his moans and screams.
Ironically, his special stool softener, Colase, just arrived at the CHLA Walgreens branch. This stuff will help. We need help. Because of the pain in his gut, and feeling full, P has eaten like a bird, and vomited like a first-week college student since Saturday. He has lost a kilo (about two pounds) since last week. Yesterday morning, Pablo sat on my lap and I could feel his tailbone on my thigh. I know this will all get better.
The blood labs from yesterday show a white blood count of less than 0.10. The clinical term for this is Neutropenia. He has bruises all over his body, including on the bridge of his nose. We think that one is from P scratching an itch. The weight loss, the porcelain white skin, the bruises-all this stuff reads 'sick' like nothing else.
I will check in lots more as things develop. Right now, we're waiting for our suite in 4 West, and for the mobile x-ray machine to get here to shoot Pablo's chest.
See you soon.
Monday, October 13, 2008
It seems that bedtime is the witching hour for us. And last night was no exception. As we were getting Pablo ready for bed, his temp was fluctuating between normal and high and he was writhing in pain. We called the on-call oncologist at CHLA to let her know what was going on. The question was, Should we bring him into the ER for tests, or try and make it through the night. For a moment, we thought we were heading to CHLA. As soon as Pablo heard those words, his writhing ramped into a full fit of crying, pushing me away, and screaming 'I don't want to gooooooooo.'
Thankfully, Jo Ann and the doctor on the other end of the phone determined that it was OK for us to monitor his temp through the night, and bring him in to the Oncology Clinic in the morning. They have been at CHLA all day. Pablo's white blood cell count was down to nearly nothing (literally). As I write this, he is over halfway through a four-hour blood transfusion. Prior to the transfusion, Pablo's abdomen was X-rayed. His entire G.I. tract is filled with poo and gas. Even though he has been 'regular,' there's more junk in his trunk that hasn't come out. They've prescribed a medication that will help him poop. Can't wait for that to start working. It's SO HARD to see him in pain.
Late this morning, Polly stopped at Mustard Seed cafe to pick up breakfast, and joined Jo Ann and P. At around 2 p.m., Jo Ann headed out to pick up Grady at school. He is heading to the Phillies / Dodgers game tonight with Jimmy and his dad, Tommy, who flew in from Philly for the game.
If Pablo spikes a fever, he will be admitted to the hospital. They are holding a bed for him in 4 West just in case.
While all this has been going down, I've been at the office working. Jo Ann has kept me up to date every 30 minutes. Polly has been texted me in between. It's hard to be here working, and not down the street, sitting with Pablo. But, five months into Pablo's treatment, we have found that it's important to divide and conquer. If I am at the hospital all day, it takes two days to get back to normal with biz stuff, which makes me more stressed out at home, etc.
For now, everything is OK—in our strange world where 'OK' has a new definition every day.
Saturday, October 11, 2008
Last night, Pablo and Grady built an insane fort in the play room—a small world to call their own. They slept in it, using two giant Mag Lights to illuminate the inside. They had a lot of fun. It's amazing to see their energy mesh—Pablo reaching up and out to be like his big bro. His voice toughens and his speech gets punchy when he's in sync with Grady. On the other hand, when he's playing with his little bro, Grady pulls out his old skool Waldorf sweetness, playing board and card games, building forts, playing hide 'n seek. If we were ever worried about the disparity in their ages (we weren't), the way they were playing Friday and today was proof that it ain't a thang....
I decided to skip my usual Saturday ride today. It's hard to admit, but I needed the sleep, the blank schedule, the day with no commitments. It was nice to wake up with Jo Ann and the boys and chill. After Jo Ann's pancake breakfast, Pablo and I decided to go for a bike ride at Griffith Park. Today was his first bike ride since Mother's Day. In fact, it's the first time we've even touched the topic. After a quick seat height adjustment, Pablo's new Specialized BMX bike—a gift from Hrach and Nevrik at Velo Pasadena—was ready for its maiden voyage. The setting for our ride was our secret road behind the Los Angeles Zoo. It's closed to traffic, so it's a worry- free place for us to ride together.
By the time we finished fitting him on the bike, and loading everything into the car, I could feel Pablo's energy diminish. Pre-cancer Pablo would have been jumping on me as I pumped his tires. I wasn't expecting that. But by the time I was ready to strap him into his seat, he was listless and quiet. We discussed the option of going back inside, and riding later or Sunday. He said he was fine, and wanted to carry on. Inside, I was hurting. I am so sick of hurting that I am starting to push it down. In only a single way, that's an important thing right now. Especially around Pablo. I wanted to have this experience with Pablo, and I wasn't going to let anything—save him wanting to go home—stop us.
On the way to the park, we stopped at Starbucks. He wanted a hot cocoa. It was cool outside (this will sound terrible to our friends in four-season climates: it was 70 degrees today) so I wanted to warm his insides. By the fifth month of cancer treatment, we are all used to Pablo wearing a mask when he's in public. His white blood cell count is so low at the moment that he has to wear a mask any time he steps outside the house. Pablo wore a pre-decorated mask, and I wore a plain one. He didn't want to talk about it when I asked how he felt about wearing a mask. After five months, we all think he's over the fuss. I was asking him so I'd know, for me, whether he was comfortable walking into Starbucks wearing it. He said he was.
I have to admit, I felt self-conscious walking into our local Starbucks with green and white striped masks covering our faces. And despite Pablo's claim that he was OK with it, I think he wasn't too into wearing the mask at all, anywhere. He is at an age where he is old enough to communicate subjective thoughts, and also old enough to keep them inside. And I think that is what was going on today. I could feel him hiding. And there wasn't a thing I could do about it except hold him in my arms.
Should I have avoided going into the coffee shop? Should I have kept him at home for the 125th day in a row? He's bored out of his mind sitting at home. Every game, every book, every TV show is just another hour passing by. He's done all that stuff, and the thrill is gone. So, I know that getting P outta the house had major benefits. Like anything in our lives right now, there are hang-ups, hold backs, risks. I will end this topic by saying, I'd rather have Pablo scared and retreating inward AND in my arms. That is breaking the generational pattern right there.
We ordered our drinks, and went to the bathroom to wash our hands. He drank his cocoa in the car. I drank my espresso in the car. We drove for two minutes down Riverside Drive, and entered the park. Along the way, I pointed at our favorite places, places he's been going since birth: the pony rides, the Merry-go-round, the Zoo. He didn't remember any of them. I gestured toward the Zoo, asking if he knew what it was. 'The museum?' he asked, staring blankly out the window.
If my heart hadn't already been breaking for the prior half hour, it would have smashed to bits right there. This is shaping up to be the Year That Wasn't. It's like, so many aspects of Pablo's life are on hold, and this cancer treatment stuff has inserted itself into the space vacated by everything we were supposed to be doing. P forgetting the Zoo is a very easy example of this. Anyone can understand why it's heart wrenching to see P forget one of his favorite places on Earth, a place he's been to dozens of times. We are not delusional. We know that this is all part of the journey.
With my heart open and raw, and Pablo's protecting itself, we got on our bikes, pushed our pedals and turned our cranks for the first time five months. I couldn't contain my excitement—screaming, cheering him on, telling him how happy I was to see him on his bike. He seemed happy to hear it. But not has happy as he was five months ago. After a few good runs on our secret road, we stopped at the car so P could snack on the nine jellybeans we'd packed as a treat. He gulped some water. We put our helmets back on, and shot down the parking lot (there were no cars in the area where we were riding). Halfway to our target turning point, Pablo slowed his pedal stroke, and said he was too tired to keep going.
We turned right around and went back to the car. By the time we rolled out of the parking lot, he was asleep.
Friday, October 10, 2008
To keep the spirit flowing, last night, while Jo Ann and I were out at a breaking-of-the-fast dinner, Polly guided Grady and Pablo in a spooktastic front yard decoration party. Now our crib is all Gothed up. I was scared to walk in the front door when we got home. This weekend, I might wire up a sound system in the shrubs...and put Bauhaus 'Swing The Heartache' on repeat. That'd really punch up the scene.
Wednesday, October 8, 2008
This morning, not normal reached a new height when we opened an envelope that Simon Baillie from La Rocca dropped off Tuesday afternoon. He brought it over with a delicious chocolate dessert made by his lovely chef wife, Patrizia, indicating that the dessert was from them and the letter was from Ireland. This did not seem unusual as La Rocca are an Irish band and only two members live here in LA. After dinner on Tuesday, we went straight for the dessert, and forgot to open the letter. In fact, I didn't even know the letter was there!
So...late Tuesday evening, at the La Rocca / Eulogies / Ed Laurie Dangerbird takeover at Hotel Cafe, I found myself in the dressing room with the Baillie brothers, Bjorn and Simon, after their stunning set. They practically wanted me to drive home to open the letter. They would not reveal what was inside the envelope, and they could not contain their excitement about it. I got home at 11 p.m., and could not find the mysterious envelope.
This morning, Jo Ann handed it to me. I opened it. Inside was this letter, from U2's guitarist The Edge. I was stunned from the moment I saw his name at the top of the paper. Unreal.
Back in the '80s, Jo Ann knew it was her destiny to walk down the aisle with him (as Bono sang 'Trip Through Your Wires' from a nave on the altar). Back in New Orleans, she spent an evening with him and his three band mates (and 100 fans) on the Riverboat President. The date was November 2, 1982 to be exact. U2 were on the 'Boy' tour at that time. She didn't get the fever for The Edge until later that decade when she moved to LA and became obsessed, along with her roommates, Brian and Nadine, with the film 'Rattle and Hum.' She has often described it as the soundtrack to their first year in LA—the year: 1989. The romance part didn't work out. But, 25 years later, her son got the letter you see below. (Click on it to make it bigger.)
We tried to put all the puzzle pieces together on how this letter arrived in our home. Simon explained that his sister, an interior designer in Dublin, works with The Edge and Bono. Knowing that The Edge went through a similar experience back in 2005—his daughter Sian was diagnosed with Leukemia)—Ms. Baillie told him of Pablo's illness and he gave her this note.
WOW, really... WOW!
Tuesday, October 7, 2008
Aside from a few bouts of vomiting yesterday and today, it's been smooth sailing since we got home. Pablo took a shower last night, jumped around the entire house, got reacquainted with his toys, and knocked out a few episodes of 'Max And Ruby' on Tivo. This makes us happy for the all the obvious reasons—plus, it's good training for when he moves into a college dorm.
Monday, October 6, 2008
We are expecting to be discharged from CHLA around 9 a.m. Full details on our freedom run coming later tonight....
Uncle Dean with Haley the hospital dog. She looks a lot like his dog Jet.
Sunday, October 5, 2008
Dean and I stayed the night. Pablo hit the rack around 9 p.m., and had a great night of uninterrupted sleep, waking only four times, to screeeeeeeeam 'Papa, I have to peeeee!' (Jo Ann had a different fate on Thursday and Friday nights, with bed wetting and all that other stirring I wrote about yesterday.) I slept in bed with P, and Dean slept in the reclining blue chair next to me. Three Castelaz men all in a row. I hadn't even thought about it until now, but the energy created by our alignment was powerful. Even though I didn't get a particularly restful sleep (the nurses are constantly coming in to check on P and his roommate Daniel), I am not tired. I think it's cos I felt safe and secure recreating between these two tatted up tough guyz.
Tonight is the last night of chemo for this stay. One of the oncology Fellows told Jo Ann that we should be out of CHLA around 9 a.m. Monday. That'd be amazing. We have two full weeks off of chemo after tonight. Pablo's body will be resting and recovering during that time. His white blood cell count will plummet over the next five or six days, and will then start to swing back up, with the help of Amgen's amazing WBC booster Neulasta, which will be injected into Pablo's thigh later this week, here at home. (In addition to this great med product, Amgen also brings us the Tour of California bike race. This year's ToC is in February, and will be Lance Armstrong's comeback debut in the US.)
OK, here's the d.o.g.g. pics:
Saturday, October 4, 2008
With children like Pablo, they do the chemo at night, while the patient is asleep. It's a good, efficient idea that allows the child to have physical and emotional freedom during the period of their usual waking hours. The fewer things we change in Pablo's schedule, the better. The fewer things Pablo remembers the better. It's the least we and the docs can do for him to aim toward a normal life.
This nocturnal transmission has a single downside: it sets a backdrop for the mid-night chemo screamos that I described above. There's nothing one can do about this. If the medicine causes Pablo to feel like he's coming apart from the inside, he's going to, a] wake up; b] freak the F out using his voice and his body to exorcise the chemo demon; c] go back to sleep and probably not remember his 'get behind me Satan' moment in the morning. It all sounds so logical and easy when I see it in writing. Somehow, seeing Pablo scream and oscillate wildly during daylight hours is easier to accept than the same happening in the darkest hours of the night. But, again, if this all went down while he was awake, he'd remember it. Since starting treatment, Pablo generally has no memory of stuff that's happened in the night. I hope this can be accurately attributed to sleepiness, and not the start of a traumatic disorder. I have PTSD from the country club lifestyle I grew up in.
Dean and I don't have many memories of childhood, period. It's the gift / curse of Post-Traumatic Stress Disorder. On the good hand, by design, PTSD shields you from some of the gnarliest memories. On the bad hand, I can't remember things like, well, if I ever had a birthday party. Most of my positive memories are from the few photos we have. It's weird. But it makes for a light load when the movers come.
Jo Ann and I are conscious of the PTSD stuff. We will have to address it with ourselves and Grady as well. But we aren't there yet. We have to get to the post- part before we can confront that.
No matter how level-headed I sound, I was hoping to spare our sons the experience of it, yknow? In accepting that Pablo won't be starting kindergarten as planned, I have begun to accept that there are many off-script things that are going to go down in his life. Grady is old enough to comprehend what's going on, and has plenty of outlets for his confusion or anger about his little brother's scene. Like any parent, I had hoped to give Pablo the kind of life I didn't have. I wanted him to feel safe and protected. I'm not talking about the the basic plan—I mean the kind of nurturing that would allow him to have balanced self esteem and not walk around battling negative self talk for the rest of his life. For a guy like me, that would be my greatest achievement in life.
I keep thinking that we didn't even get Pablo vaccinated cos we didn't want to had hoped to shield him from any sort of potential harm. 11 days of radiation and nine months of chemo kind of negates all that organic human body stuff. But I love that Jo Ann was so passionate about keeping the American cheese pediatric practices away from Pablo. I stand by her on it. And I make the juxtaposition to illustrate one of the great ironies of Pablo's cancer treatment.
¶ During the day, Pablo is a ringleader whose platform of operation is an adjustable hospital bed. Like the old school characters in my dad's old corner tavern in Milwaukee, Pablo is all about playin' some games to pass the time. He doesn't view it as passing the time, he just sees Room 438, Bed A as this week's location for kicking everybody's a**es in Candy Land, Uno and Sorry!. Like his big bro Grady, the kid is a fearless, ruthless competitor. And now that he has some verbal skillz, he lays a sassy Howard Cossell play-by-play over the board game beatings. It's really something to watch him operate.
Friday evening, after our funny and yummy Malo taco 'n chip dinner, I walked Tony and Joanna down to the lobby. When we left Pablo's room, he was awake, putting on his pajamas, jumping all over the place. When I came back a few minutes later Pablo was laying in bed, sweetly and soundly sleeping. He told Jo Ann and Dean that he was tired, and—remarkable for a five-year-old—laid down on his side, closed his eyes, and fell out. The lights were still on. His roommate's TV was blasting WWF wrestling. And there was Pablo asleep, with his Mommy, Papa and uncle Dean looking on. His eyes were about one-third open, and Jo Ann asked me to close them. I did.
As we were sitting in the room quietly chatting, our nurse, Lizelle, came in with a fat, juicy I.V. drip bag—the first chemo drug for the night. You can always identify the chemo stuff from the florescent WARNING stickers on the bag and tube—the kind of label you see on the side of a truck carrying a tank of liquid nitrogen. The nurse has to wear a special gown, a mask and gloves when administering the stuff. This medicine can burn the skin on contact. In fact, when Pablo wet the bed Wednesday and Thursday night, Jo Ann had to immediately give him a towel bath. Even Pablo's urine is toxic in the hours after a treatment.
An hour into the treatment, Dean and I went home. Jo Ann was ready to hit the hay, and so were we. When we go home, we watched Real Time with Bill Maher, which must be one of the greatest shows ever to be transmitted into the homes of our fine nation. Alec Baldwin was one of the panel guests. I could watch him eat breakfast and find it fascinating. Anyway, for 30 minutes Dean and I laughed and laughed and laughed. We needed that.
It is not lost on me that in the time we have been a cancer family, the world has changed, probably forever. I am not a 'sky is falling' type of person who recites the day's newspaper headlines and starts things on fire. But what I am saying is that the level of national and international fear and tension and uncertainty brought on by the financial gymnastics of late comes close—close—to that special feeling of 'FFFFF######*******KKKKK!!!!' that Jo Ann and I have been feeling since May 17. Know what I mean?
Does misery love company? In my case, no. Absolutely not. Well, maybe a little. I was happy when everyone else was happy, or at least comfortably numb. It was nice to, say, walk out of the hospital and get a shot of the real world—a world that included smiles and laughter (does anyone remember laughter?). Now, everyone's walking around with a frown. Over the past two weeks, it feels a little crowded in the pity party aisle at the grocery store. Being in the cancer ward at CHLA is like being on retreat.
One thing's for sure about the world today—the comedy's better. And laughter is a medicine that works every time.
Friday, October 3, 2008
Everything's going well today. Chemo treatment number three starts later tonight. More picks and tricks later on....
If you've been to our house, you know that P looooooooves him some plastic action figures from Target—animals, knights, gnomes. If you've been in our house in the middle of the night, you know that I scream and curse realllly loud when I step on one (or two) of those things. Just look at the 'ready for action' paw on that thing!
Thursday, October 2, 2008
At 11 p.m., Pablo was started on the anti-nausea medication Zofran. Then the real party began, starting with an hour of Carboplatin. An hour of Etopocide followed. Within the first few minutes, Pablo developed an allergic reaction. First, it showed as a cough; within minutes, his face swelled. His tummy hurt, and his ears and head got red. Within a couple of minutes, Pablo went from looking like a gaunt, skinhead Ian MacKaye to a puffy-faced '70s rocker, say, John Bonham on the '78 tour. In classic rock terms, he went from the debut album to the fourth album in five minutes. Unlike the dudes from Grand Funk Railroad or Motley Crue, there was an easy fix for puff daddy Pablo.
The nurse turned off the Etopocide immediately. The oncology Fellow was called in, and ordered Benedryl. After an hour, P's swelling went down, and the Etopocide was restarted, at a slower three-hour rate. As soon as that party ended, they added in a chaser of Cytoxin.
He's on a saline drip all day today, to keep his hydration in check. Chemo will start again at 10 or 11p.m. Pablo can (and does) eat anything he wants. So far today, he's had half of his red apple, half of my green apple (he eats around the whole thing, like a dinosaur eating a planet), turkey and broccoli and a tiny bit of brownie, compliments of our lunch angel, Dorrie. As I write this, he's playing with the toes on his right foot, and watching a cartoon on TV.
This is a lot easier than last time we were in CHLA. No gut pains, no drains drilled into his skin, no catheters hangin off his junk. The mood in the room is light and bright. Hell, we even have the less-than-desireable hallway side of the room, and we're still stoked. Most of all, Pablo's smiling face puts us all in the right place.
At 2:45 p.m., I am going on a hard hat tour (I just love saying that) of the new CHLA hospital, which is being built next door. Polly's coming in around that same time, and Jo Ann will head home to shower and chillax. At 5:30, we're gonna head up to Peter and Brie's to watch the VP debate. Everyone keeps telling us that laughter is the best medicine, and there will be no better comedic drama this year. Maybe Sarah Palin will invite Bob and Doug McKenzie to take the stage with her? You know, to fully flesh out the Queen of the Great White North bit for the Repulican cheerleaders, and to divert the nation's attention away from her PTA-sized political pallette?