Happy Monday

Pablo slept like a baby last night. Sleeping in the same bed with Pablo is a wonderful thing—he always has a foot or a hand on me and Jo Ann. Such a simple sign of his love and need for us. Even when he is zonked out, totally asleep, his hands and feet make this connection. I have never known love like that before meeting Pablo.

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.

Clean Kidney + We Are Home

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.

The Donut Spiral

Pablo's been dreaming of having his very own top hat. Mommy and Grady made that dream come true this afternoon.

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.

MRI On Tap

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.

CAT Scan Fever

This morning, Pablo had a routine Ultrasound of his abdomen. We were scheduled to do this as an out-patient procedure—it's coincidental and convenient that Pablo woke up at CHLA today and was able to roll downstairs without putting his shoes on.

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.

Childrens Halloween Los Angeles

Pablo had a good day. There was a Halloween party in the Castelar conference room in the basement of CHLA (see photo above). He had a blast there. He scored candy and loads of stickers. The kids did spooky and scary art projects. Pablo got his picture taken, and decorated the frame with his name spelled in glow-in-the-dark letters.

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.

A Rush Of Blood To The Head

In the 4 West play room this afternoon. Photo courtesy Pollyphone.

This evening when I returned to the hospital, Pablo had just woken from a nappy nap. He was happy, smiley, and in good spirits. He'd spent the day with Polly and Jo Ann (who was in and out of CHLA all day). From what I could tell when I checked in throughout the day, the time passed swiftly and with the help of lots of games and some homemade Play Doh, brought in by our Child Life friend Arlene.

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.

You Can Check Out But You Can Never Leave

Just like that old Eagles song, we are singing our famous refrain cos we're checking back into CHLA. Pablo has a fever of 100.4 - the low threshold for admission into the revered halls of 4 West, CHLA's exclusive cancer ward. Fever, and the potential for it to be coupled with infection, is the single worst scenario for a little boy in Pablo's compromised position.

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.

Transfusion Monday

Our week began with a bang. Grady's alarm didn't go off. And Pablo woke up with gut-wrenching pain for the third day in a row. After a brief moment of grumpy freekout on my part, we got a plan together. I drove Grady to school (which was complicated by the massive traffic back up caused by the Little Tujunga / Angeles Forest fire), and Jo Ann took Pablo to CHLA. His abdominal pains did not slow down over the weekend, and our plan Sunday night was to bring him in first thing.

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.

Back On The Bike

Pablo on his new BMX bike. He looks like a GIANT on that thing!

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.