I just asked my mom if it's possible that we have been in here for 22 days... which means that she's been away from her home with us for 24 days. It is, in fact, true. We started here 22 days ago with Dr. Stein removing the big bump on the right kidney. As everyone knows, there has been quite a lot of activity since then and here we are!
Pablo POOPED today! This is great news. He has lost a lot of weight since he hasn't eaten in 3 weeks and now we start our new chemo regimen. It has me nervous that he's so frail and we're about to blast him with heavy duty chemo and radiation, but seriously, what are our choices? We want the cancer to go away forever. Never to return. And we know that this is the way to do that! So, WE ARE IN!
Dr. M came by this evening and examined Pablo. I asked him a bunch of questions for the umpteenth time and he patiently answered every one by saying, "As I told you..." in the most kind way.
We did learn some new things tonight about home care, daily shots for low blood counts, anti-nausea meds and appetite stimulants. We are swimming in information and are at the point where we need to figure it out and get it sorted. We are scheduled to start the new chemo plan on Wednesday. It is in-patient and we hope to go home on Friday.
That's it from 429-B this evening. Oh, wait! Pablo has requested a slumber party with Nana and me - so we're both here for the night tonight.
love,
Jo Ann
Monday, September 8, 2008
Big News
At 6 a.m., Pablo f.a.r.t.e.d.!
See the big smile on his face on the Pablog banner photo? Imagine that, sans the ice cream cone, and plus a giant green cloud in the room.
That is all.
Actually, no it isn't. A friend just sent us a fart video from the UK—a nation obsessed with the activity. I figure we could all use a little levity at this point in the program. So, if you want to see a totally hilarious and totally immature fart video, click here.
See the big smile on his face on the Pablog banner photo? Imagine that, sans the ice cream cone, and plus a giant green cloud in the room.
That is all.
Actually, no it isn't. A friend just sent us a fart video from the UK—a nation obsessed with the activity. I figure we could all use a little levity at this point in the program. So, if you want to see a totally hilarious and totally immature fart video, click here.
Sunday, September 7, 2008
Shirley Manson To Announce Pablove/Filter/Urban Outfitters CD Compilation Monday Morning On KROQ/LA!
Someone sent Pablo a Whoopee cushion last week. As it sits dormant on the window sill of his hotelspital room, it has as much potential to let one rip as our little 16kg boy does. So far today, no farts. His belly is distended and he is in pain. The blisters on his tummy and back are healing, and have to be slathered with medicated creme to fend off infection. He has bed sores from laying on his back for three weeks (tomorrow is day 21). Pablo is sick and tired of being sick and tired.
He's also tired of being asked if he has to poop. So, we've made an effort to stop asking. Jo Ann brought up a good point: if he has to go, we'll know it.
Grady and Patricia were with P all day. Jo Ann and I had the new parents' day at Grady's school—we spent the day attending truncated versions of his classes, and listened to each of his teachers describe their class syllabus and general education philosophy. Back at CHLA, G and P played and snuggled and smiled all day—'cept the moments P was wincing in pain. Patricia hung with them and kept the nurses on their toes and gave P foot massages, and applied warm compresses to his belly.
Pablo's best friend Harry and his mom Kristal came by this morning—his first visit from a friend on this tour of CHLA. Jo Ann said the boys had a good time, but that Pablo was quiet. She said Harry seemed to be OK seeing his buddy in bed with no hair and tubes coming out from under his gown. It's so hard to know what to expect—do we try and maintain normalcy by having a friend pop by once in a while? What if Pablo doesn't feel like interacting (like so many days lately)? What if his friend has a hard time seeing Pablo, a wild, kinetic dude, laying in bed, so subdued? Jo Ann had a lot of feelings seeing Harry and Kristal, as you can imagine. Harry started kindergarten at Waldorf on Thursday. We have always imagined the two of them starting together. It's not a surprise we're not starting school, but it's also not shocking that we're deeply, deeply sad about it. All that said, today was a good test. On the whole, it was fine. And no matter P's energy level, he certainly enjoyed hanging with his pal Harry.
Dr Mascarenhas will check on Pablo tomorrow. He is looking to start the new regimen of chemo this week. Tuesday, we'll start the process in radiation oncology, beginning with the body mold and other tests. The actual radiation treatments will begin next Monday. More details on all that as we get them.
Oh, one FUN and IMPORTANT thing before I sign off.
Our dear friend Shirley Manson from Garbage will be on KROQ's morning show 'Kevin and Bean' tomorrow around 9:30 a.m. She is now one of the stars on the show 'Terminator: The Sarah Connor Chronicles' and will surely be talking about this amazing new aspect of her artistic career that while cracking up with K and B. She is also going to talk about a cool Pablove Foundation music compilation we put together with our friends at Filter Marketing and Urban Outfitters. Garbage went into the studio and recorded a song for their homie Pablo, and it's the lead track on the comp. Other artists who've donated exclusive tracks: Radiohead, Jack Johnson, Bloc Party, and all the Dangerbird bands, including Silversun Pickups, Eulogies, Sea Wolf, The One AM Radio, La Rocca—everyone on the label.
I will definitely do a post soon with the full details on this. The point is: if you are in LA (or know how to tune into the radio online), check out Shirley tomorrow morning!
He's also tired of being asked if he has to poop. So, we've made an effort to stop asking. Jo Ann brought up a good point: if he has to go, we'll know it.
Grady and Patricia were with P all day. Jo Ann and I had the new parents' day at Grady's school—we spent the day attending truncated versions of his classes, and listened to each of his teachers describe their class syllabus and general education philosophy. Back at CHLA, G and P played and snuggled and smiled all day—'cept the moments P was wincing in pain. Patricia hung with them and kept the nurses on their toes and gave P foot massages, and applied warm compresses to his belly.
Pablo's best friend Harry and his mom Kristal came by this morning—his first visit from a friend on this tour of CHLA. Jo Ann said the boys had a good time, but that Pablo was quiet. She said Harry seemed to be OK seeing his buddy in bed with no hair and tubes coming out from under his gown. It's so hard to know what to expect—do we try and maintain normalcy by having a friend pop by once in a while? What if Pablo doesn't feel like interacting (like so many days lately)? What if his friend has a hard time seeing Pablo, a wild, kinetic dude, laying in bed, so subdued? Jo Ann had a lot of feelings seeing Harry and Kristal, as you can imagine. Harry started kindergarten at Waldorf on Thursday. We have always imagined the two of them starting together. It's not a surprise we're not starting school, but it's also not shocking that we're deeply, deeply sad about it. All that said, today was a good test. On the whole, it was fine. And no matter P's energy level, he certainly enjoyed hanging with his pal Harry.
Dr Mascarenhas will check on Pablo tomorrow. He is looking to start the new regimen of chemo this week. Tuesday, we'll start the process in radiation oncology, beginning with the body mold and other tests. The actual radiation treatments will begin next Monday. More details on all that as we get them.
Oh, one FUN and IMPORTANT thing before I sign off.
Our dear friend Shirley Manson from Garbage will be on KROQ's morning show 'Kevin and Bean' tomorrow around 9:30 a.m. She is now one of the stars on the show 'Terminator: The Sarah Connor Chronicles' and will surely be talking about this amazing new aspect of her artistic career that while cracking up with K and B. She is also going to talk about a cool Pablove Foundation music compilation we put together with our friends at Filter Marketing and Urban Outfitters. Garbage went into the studio and recorded a song for their homie Pablo, and it's the lead track on the comp. Other artists who've donated exclusive tracks: Radiohead, Jack Johnson, Bloc Party, and all the Dangerbird bands, including Silversun Pickups, Eulogies, Sea Wolf, The One AM Radio, La Rocca—everyone on the label.
I will definitely do a post soon with the full details on this. The point is: if you are in LA (or know how to tune into the radio online), check out Shirley tomorrow morning!
Saturday, September 6, 2008
Weekend Update
Pablo stayed up late last night. He and Grady watched 'Ghostbusters II' and shut their eyes at midnight. Total party animals those two.
Waking at 11:30 a.m., Pablo was happy and smiling. The perfect demeanor for greeting the pain management team who came by to remove the epidural from P's spinal column. The thing was removing itself-the sheet of plastic film that covered his entire back was rolling up and, like the bandage over his abdominal incision, caused a blister. All is good now. Rather than a continuous drip of high-octane pain med, Pablo now has to ask for Morphine when needed. He did ask for it the minute I got here this afternoon. Then he fell asleep. Like any guy on junk, he has the itches, and he tends to sleep with his eyelids half-mast. When he's on Morphine, Jo Ann and I are constantly pushing his lids down. It's another of the strange things that one faces with a cancer kid.
Can't wait for this to be a distant memory. But, like a gaffer on 'Apocolypse Now,' we can only wish....
I rode this morning with brother Joe Scully. Many topics of conversation carried us through our 48 mile ride. I hadn't ridden since last Saturday (a rarity for me), so I was feeling clunky and slow. Together with my heavy heart and uneasy mind, I was phoning it in. All that aside, I am grateful as hell to Joe for getting me out there, and scouring the tough topics of the day along the way. This week, I have to ride-Sunday is the Malibu Triathlon! Adam Harrison from Dangerbird is running, I'm cycling, and a buddy of Adam's will start out our relay team with the ocean swimming part. The Malibu Tri benefits CHLA (specifically the cancer treatment part, I believe), so it's a deeply personal event for me and Adam. I have not done a time trial all year. My brand new TT bike is hanging in the garage with less than five miles on it. It came in at the start of the Summer of Cancer, and you know what I did last summer. The time trial is my strong suit as a rider, and I am gonna have to get out there and do my best. I did the event last year on a regular road bike, and hundreds more miles under my belt, and did pretty darn well. With my fancy new bike, and thousands of hours of pent-up aggression to kick out, who knows how well I can do? The course is PCH, from Zuma to Leo Carillo State Beach and back. And, like my walk to school back in Milwaukee (Jo Ann and Grady were just making fun of me at dinner for this), it's uphill both ways. Seriously!
The main point is, our team will be supporting CHLA. Almost all of Pablo's docs will be competing as well. I know that Drs Mascarenhas, Stein and Austin will be there. Can't wait!
N0w, while Pablo's sleeping in his room, we have been feasting on a Wisconsin dinner from Lauren, Chris, Milo and Desi. They just returned from their summer home in my home state (L + C are O.G. Chicagoans), and brought back a cooler full of the high calorie cuisine I left behind almost a decade ago: Italian Sausages (they grilled them!), German potato salad (not to be confused with the American and Polish varieties), cheddar cheese curds (Grady freaked out at the sight and thought of them) and horseradish mustard. All we were missing were seven-ounce bottles of Blatz beer with a little pepper sprinkled on top! The bow on the gift was an assortment of gift shoppe goodies from the Brat Stop, an actual beer hall / sausage stronghold off of I-94, at the midway point between Milwaukee and Chicago. Cheap Trick played there the day their debut album came out. I'm not kidding. The BoDeans signed their deal with Slash Records there. Seriously.
Pablo just woke up. Gotta run.
Waking at 11:30 a.m., Pablo was happy and smiling. The perfect demeanor for greeting the pain management team who came by to remove the epidural from P's spinal column. The thing was removing itself-the sheet of plastic film that covered his entire back was rolling up and, like the bandage over his abdominal incision, caused a blister. All is good now. Rather than a continuous drip of high-octane pain med, Pablo now has to ask for Morphine when needed. He did ask for it the minute I got here this afternoon. Then he fell asleep. Like any guy on junk, he has the itches, and he tends to sleep with his eyelids half-mast. When he's on Morphine, Jo Ann and I are constantly pushing his lids down. It's another of the strange things that one faces with a cancer kid.
Can't wait for this to be a distant memory. But, like a gaffer on 'Apocolypse Now,' we can only wish....
I rode this morning with brother Joe Scully. Many topics of conversation carried us through our 48 mile ride. I hadn't ridden since last Saturday (a rarity for me), so I was feeling clunky and slow. Together with my heavy heart and uneasy mind, I was phoning it in. All that aside, I am grateful as hell to Joe for getting me out there, and scouring the tough topics of the day along the way. This week, I have to ride-Sunday is the Malibu Triathlon! Adam Harrison from Dangerbird is running, I'm cycling, and a buddy of Adam's will start out our relay team with the ocean swimming part. The Malibu Tri benefits CHLA (specifically the cancer treatment part, I believe), so it's a deeply personal event for me and Adam. I have not done a time trial all year. My brand new TT bike is hanging in the garage with less than five miles on it. It came in at the start of the Summer of Cancer, and you know what I did last summer. The time trial is my strong suit as a rider, and I am gonna have to get out there and do my best. I did the event last year on a regular road bike, and hundreds more miles under my belt, and did pretty darn well. With my fancy new bike, and thousands of hours of pent-up aggression to kick out, who knows how well I can do? The course is PCH, from Zuma to Leo Carillo State Beach and back. And, like my walk to school back in Milwaukee (Jo Ann and Grady were just making fun of me at dinner for this), it's uphill both ways. Seriously!
The main point is, our team will be supporting CHLA. Almost all of Pablo's docs will be competing as well. I know that Drs Mascarenhas, Stein and Austin will be there. Can't wait!
N0w, while Pablo's sleeping in his room, we have been feasting on a Wisconsin dinner from Lauren, Chris, Milo and Desi. They just returned from their summer home in my home state (L + C are O.G. Chicagoans), and brought back a cooler full of the high calorie cuisine I left behind almost a decade ago: Italian Sausages (they grilled them!), German potato salad (not to be confused with the American and Polish varieties), cheddar cheese curds (Grady freaked out at the sight and thought of them) and horseradish mustard. All we were missing were seven-ounce bottles of Blatz beer with a little pepper sprinkled on top! The bow on the gift was an assortment of gift shoppe goodies from the Brat Stop, an actual beer hall / sausage stronghold off of I-94, at the midway point between Milwaukee and Chicago. Cheap Trick played there the day their debut album came out. I'm not kidding. The BoDeans signed their deal with Slash Records there. Seriously.
Pablo just woke up. Gotta run.
Friday, September 5, 2008
Meet The Rad Dudes
Today was a bridge day—both in terms of Pablo's recovery from surgery and in completing the treatment plan for the rest of the year. P woke from his 12 hour sleep smilin' and profilin'. He's not 100% yet, but he's 100% better than Thursday. We expect the same gain on Saturday. That said, we are not expecting to go home any time soon. The next round of chemo may start on Monday (if P is recovered enough), and we have to be in-patient for that anyway.
The chemo game gets a bit more intense from here out. It won't be as easy as it has been up to now. In general, the doses are higher, and he will be on five different drugs, up from three. Every three or four weeks, Pablo will receive doses—sometimes for consecutive days—that require him to be in-patient. A fever or any kind of cold or sickness will require immediate check-in at CHLA, as opposed to an ER or Oncology Clinic antibiotic injection. It's not all tough stuff: there are a few chemo-free weeks sprinkled in. Those are weeks where Pablo's blood counts will be so low he'll need the time to recover. In the coming days, we will cover the details of the new chemo protocol.
At 11 a.m. today, Jo Ann and I met the radiation oncologist Dr Wong, and the physicist Dr Olch—the CHLA Rad Dudes. They explained the specifics of Pablo's actual treatment, the myriad short- and long-term risks associated with radiation therapy (more on that later), and the general science and terminology of it all. What I was not expecting was the preparation for treatment, which includes having a body mold made, which Pablo will be dropped into for each of his 12 rides on the radio-coaster. This is a precise business, zapping organs and bones and guts and goo. They can't allow any variation in body position. Tuesday at 7:15 a.m., we go in for Pablo's fitting. Sometime later in the week, the rad dudes will do a test run on their radiation design, with Pablo in the mold, in a machine in their test lab. Prior to that, they will test their radiation design on plastic to be sure it's lined up properly.
They showed us the radiation machine. It's as big as two Yugos, one of which can swing 360ยบ around the patient. Good thing P will be asleep during the procedures. His ever-increasing fear would be justified if he could see that thing.
With Dr M's confident blessing, we have decided to stay in LA for radiation. We have decided not to pursue radiation treatment at Northwestern Memorial in Chicago. And, so, another bridge is crossed, and we are on our way.
Dr M says the next two months will be the hardest—the double blow of radiation and chemo. I am tired in every way imaginable, so I will write more about this over the weekend, along with the potential side-effects of rad treatment.
Tonight, Jo Ann and Grady are spending the night with Pablo. Patricia and I are at home with the d.o.g.g.s, the cat, and Grinchie the fish.
We will all sleep easy tonight knowing, at least, that our battle plan for the next 24 weeks is set.
The chemo game gets a bit more intense from here out. It won't be as easy as it has been up to now. In general, the doses are higher, and he will be on five different drugs, up from three. Every three or four weeks, Pablo will receive doses—sometimes for consecutive days—that require him to be in-patient. A fever or any kind of cold or sickness will require immediate check-in at CHLA, as opposed to an ER or Oncology Clinic antibiotic injection. It's not all tough stuff: there are a few chemo-free weeks sprinkled in. Those are weeks where Pablo's blood counts will be so low he'll need the time to recover. In the coming days, we will cover the details of the new chemo protocol.
At 11 a.m. today, Jo Ann and I met the radiation oncologist Dr Wong, and the physicist Dr Olch—the CHLA Rad Dudes. They explained the specifics of Pablo's actual treatment, the myriad short- and long-term risks associated with radiation therapy (more on that later), and the general science and terminology of it all. What I was not expecting was the preparation for treatment, which includes having a body mold made, which Pablo will be dropped into for each of his 12 rides on the radio-coaster. This is a precise business, zapping organs and bones and guts and goo. They can't allow any variation in body position. Tuesday at 7:15 a.m., we go in for Pablo's fitting. Sometime later in the week, the rad dudes will do a test run on their radiation design, with Pablo in the mold, in a machine in their test lab. Prior to that, they will test their radiation design on plastic to be sure it's lined up properly.
They showed us the radiation machine. It's as big as two Yugos, one of which can swing 360ยบ around the patient. Good thing P will be asleep during the procedures. His ever-increasing fear would be justified if he could see that thing.
With Dr M's confident blessing, we have decided to stay in LA for radiation. We have decided not to pursue radiation treatment at Northwestern Memorial in Chicago. And, so, another bridge is crossed, and we are on our way.
Dr M says the next two months will be the hardest—the double blow of radiation and chemo. I am tired in every way imaginable, so I will write more about this over the weekend, along with the potential side-effects of rad treatment.
Tonight, Jo Ann and Grady are spending the night with Pablo. Patricia and I are at home with the d.o.g.g.s, the cat, and Grinchie the fish.
We will all sleep easy tonight knowing, at least, that our battle plan for the next 24 weeks is set.
Jennifer Beals' Post-Triathlon Report
Jennifer completed her triathlon with beauty and grace AND reached her goal for CHLA!
She has posted an amazing Post-Triathlon Report with some fun pictures.
Congratulations, Jennifer! And thank you again for supporting our TEMPORARY home away from home.
love,
Jo Ann
She has posted an amazing Post-Triathlon Report with some fun pictures.
Congratulations, Jennifer! And thank you again for supporting our TEMPORARY home away from home.
love,
Jo Ann
Thursday, September 4, 2008
Into Action
I just looked up at the clock. 10:24 p.m. I feel like I didn't get anything done today. 'Anything' has a new meaning for me. It used to mean running around finding problems to call my own. (Well, it still does....) Today, 'anything' means talking to doctors, laying next to Pablo on the exam table as a cardiology tech slathers his chest with warm jelly and slides an electronic wand on his chest to obtain pictures of his heart. Or waiting for Pablo's surgery to end, sitting for hours in a room with awful chairs and four televisions yelping in Spanish. What I got done today was a full day of work. Lots of phone calls while pacing the back hallways on our floor, or sitting in the conference room. Peter and I met with the architect who is doing our new office building. We chose a glow in the dark laminate for the reception desk. And Peter wants a ping pong table to fit in somewhere. Awesome. I need to let him know I want a punching bag in our office!
All the work stuff was great. But it's even greater when P is at home chilling, healthy and happy, and I am at the office. Working while in hospital loses its charm after a few days. It's hard to muster the energy to drop four floors, walk the length of the building to the lobby and head outside to make a private phone call. This is the way it is, and I make it work.
Still, nothing feels good. Except being with Pablo. Talking about Pablo with Jo Ann, Grady, Polly, family and friends. Laughing with Pablo. Fighting for Pablo. And today was P's first post-surgery recovery day. So, not much to fight for. Just a lot of quiet and calm. Dr M came by and spoke to Jo Ann about radiation. We are meeting tomorrow morning with the radiation oncologist and the CHLA physicist. Much more on this tomorrow. The long and short: we are weighing two options for radiation: CHLA and Northwestern Memorial in Chicago.
¶ Jo Ann and I have been feeling the need to commune with other cancer parents. We have all the support two people could ever wish for. You, our incredible community of friends, have embraced us in your loving arms, and have not let go. But it is not fair for us to expect that you can carry all our weight. Most of us are experiencing cancer for the first time. The power of a group of people who are/have gone through a shared experience is like nothing else. In our case, we need to sit with other parents who are living (or have lived) the insanity, the emotional, physical, mental anguish that is pediatric cancer. The central question for me is: how do I withstand / tolerate / accept the great Guess that is cancer treatment? Only others who've trudged this path can answer that.
To this end, I reached out to Doug Ulman, the president of Lance Armstrong Foundation, to ask for ideas on a support group. Googling and noodling around online got me nowhere. You'd think there'd be hundreds of groups. Look for yourself. Type in 'childhood cancer support group parents.' Not much there. Except seeing lots of sad, sad s**t I do NOT want to see. Doug recommended a fine national organization, The Wellness Community, that has offices in Burbank and Pasadena. I will check them out in person very soon.
Nearly a decade in recovery has taught me one thing: a group of people coming together to solve a common problem have much more power than a man (or couple) sitting alone, trying to will away a problem. It works for me. So today, at 3 p.m., I stepped into action. I attended a meeting of the CHLA program called HOPE. It's a group for parents of cancer kids, facilitated by a psychologist. They have a sister program, Teen Impact, aimed at teens with cancer (and their families and homies). Interestingly, it's also Maroon 5's official charity (it says so on the back of the brochure).
The meeting I attended was all parents from the fourth floor. This floor has three types of cancer: soft tumor (like Pablo), Leukemia, and bone marrow transplants. Translation: the parents of the fourth floor have a lot of pain to release. The four mothers who sat at the table shared, I shared, and the facilitators made helpful comments, questions, statements, that either pulled more caustic matter from our hearts and minds, or ameliorated our general slate of confusion and despair. They served Girl Scout cookies and freeze-dried coffee; an interpreter bridged the English-Spanish gap for the two Mexican mothers in attendance. It was helpful. It was a first step for me to admit that this is really happening—that, once again in my life, I need specific help for something I can't handle on my own.
¶ This evening, a nurse came in to hang his new 24 hour nutrition bags on the I.V. pole. P and I laid in bed, zoning out, not saying a word (he's said maybe five words to me all day), looking up once in a while at the nurse's progress. For a couple seconds, I fell asleep. My face, his shoulder. A noise woke me. There are more noises in this place than Midtown Manhattan. I swear. (To wit: they come around at 10:30 p.m to take out the trash. In a children's hospital!) My fuzzy eyes opened. Pablo's bare chest, shoulder, arm. My little boy, five years old. This is sweet. Then: thread-thin electrode wires. Oh, yes: hospital, cancer, surgery. I forgot.
Pablo: quiet as a church mouse all day. Constantly inward. Eyes filled with shallow fright, pr maybe just tired. Hands always ready to defend the wound (this week's wound) on his abdomen.
It's bedtime for me. Tomorrow is going to be a big day filled with lots of 'anything.' I will feel good showing up to be a father and a husband. And I will feel good writing about it.
All the work stuff was great. But it's even greater when P is at home chilling, healthy and happy, and I am at the office. Working while in hospital loses its charm after a few days. It's hard to muster the energy to drop four floors, walk the length of the building to the lobby and head outside to make a private phone call. This is the way it is, and I make it work.
Still, nothing feels good. Except being with Pablo. Talking about Pablo with Jo Ann, Grady, Polly, family and friends. Laughing with Pablo. Fighting for Pablo. And today was P's first post-surgery recovery day. So, not much to fight for. Just a lot of quiet and calm. Dr M came by and spoke to Jo Ann about radiation. We are meeting tomorrow morning with the radiation oncologist and the CHLA physicist. Much more on this tomorrow. The long and short: we are weighing two options for radiation: CHLA and Northwestern Memorial in Chicago.
¶ Jo Ann and I have been feeling the need to commune with other cancer parents. We have all the support two people could ever wish for. You, our incredible community of friends, have embraced us in your loving arms, and have not let go. But it is not fair for us to expect that you can carry all our weight. Most of us are experiencing cancer for the first time. The power of a group of people who are/have gone through a shared experience is like nothing else. In our case, we need to sit with other parents who are living (or have lived) the insanity, the emotional, physical, mental anguish that is pediatric cancer. The central question for me is: how do I withstand / tolerate / accept the great Guess that is cancer treatment? Only others who've trudged this path can answer that.
To this end, I reached out to Doug Ulman, the president of Lance Armstrong Foundation, to ask for ideas on a support group. Googling and noodling around online got me nowhere. You'd think there'd be hundreds of groups. Look for yourself. Type in 'childhood cancer support group parents.' Not much there. Except seeing lots of sad, sad s**t I do NOT want to see. Doug recommended a fine national organization, The Wellness Community, that has offices in Burbank and Pasadena. I will check them out in person very soon.
Nearly a decade in recovery has taught me one thing: a group of people coming together to solve a common problem have much more power than a man (or couple) sitting alone, trying to will away a problem. It works for me. So today, at 3 p.m., I stepped into action. I attended a meeting of the CHLA program called HOPE. It's a group for parents of cancer kids, facilitated by a psychologist. They have a sister program, Teen Impact, aimed at teens with cancer (and their families and homies). Interestingly, it's also Maroon 5's official charity (it says so on the back of the brochure).
The meeting I attended was all parents from the fourth floor. This floor has three types of cancer: soft tumor (like Pablo), Leukemia, and bone marrow transplants. Translation: the parents of the fourth floor have a lot of pain to release. The four mothers who sat at the table shared, I shared, and the facilitators made helpful comments, questions, statements, that either pulled more caustic matter from our hearts and minds, or ameliorated our general slate of confusion and despair. They served Girl Scout cookies and freeze-dried coffee; an interpreter bridged the English-Spanish gap for the two Mexican mothers in attendance. It was helpful. It was a first step for me to admit that this is really happening—that, once again in my life, I need specific help for something I can't handle on my own.
¶ This evening, a nurse came in to hang his new 24 hour nutrition bags on the I.V. pole. P and I laid in bed, zoning out, not saying a word (he's said maybe five words to me all day), looking up once in a while at the nurse's progress. For a couple seconds, I fell asleep. My face, his shoulder. A noise woke me. There are more noises in this place than Midtown Manhattan. I swear. (To wit: they come around at 10:30 p.m to take out the trash. In a children's hospital!) My fuzzy eyes opened. Pablo's bare chest, shoulder, arm. My little boy, five years old. This is sweet. Then: thread-thin electrode wires. Oh, yes: hospital, cancer, surgery. I forgot.
Pablo: quiet as a church mouse all day. Constantly inward. Eyes filled with shallow fright, pr maybe just tired. Hands always ready to defend the wound (this week's wound) on his abdomen.
It's bedtime for me. Tomorrow is going to be a big day filled with lots of 'anything.' I will feel good showing up to be a father and a husband. And I will feel good writing about it.
Wednesday, September 3, 2008
TOTALLY Radical!
Pablo is sleeping in the post-op. Like, nighty-night sleep, not chemically-induced snoozing. Four surgeries in 16 days gives us a reliable data pool from which we can draw reliable conclusions about how P will react and recover to the drugs, the procedure, the physical re-upping, and the psycho-emotional aspect of surgery. We know he'll probably be laughing by Friday, walking strongly on Saturday, and eating pancakes on Sunday.
He was quite relaxed about it all today. Which made us relaxed. He had a smile on his face as we crossed the candy cane line. He kissed us goodbye and looked into our eyes. No fear. No tears. Just an I-got-it look. He was talking to the nurses and anesthesia techs as they escorted his bed down the hall.
The removal of a kidney is called a radical nephrectomy. In the '80s the parlance for the removal of all uncoolness and lameness was, simply, 'radical.' In both medi-speak and Spicoli-speak, Pablo is now a radical dude. At least the right side of him is. No kidney. No uncool, lame cancer. Totalllly!
The right kidney is now a pathology specimen. It will be tested thoroughly and we'll find out if there was any live cancer in it. If there is, I would feel vindicated-that we made the correct decision to resect it, to put Pablo through another surgery. If there isn't, I will still feel that we made the correct move.
Pablo is in his room now. His eyes are closed. He has just gotten home from the war. He is sleeping. What else would he do? I wrote yesterday about acceptance. Sleep is a sign of acceptance. The daily surrender to humanness. Machines don't sleep. Rust never sleeps. But living things all must sleep—to recreate, to reconstitute, to reconfirm the quiet covenant between the human body and the human mind. Even the most willful and contrary among us could never argue the beauty of sleep.
And most of those people ain't pint-sized, emaciated, bald 'n totally radical! little cancer fightin' bodies are they?
The Pre-Op Bop
Hello from CHLA pre-op room #21.
Pablo is totally chill about the surgery. He is laying in bed watching Nick (ugh—commercials!). Legs crossed, hands behind his head. Homie ain't worried about a thing!
Drs Stein and Austin came by to run through the procedural details with us. I signed the consent last night, so all the legal stuff is in the can. Stein is gonna look around inside P's body (why not check under the hood, right?) for any fishy lookin' nodes or any other odd bits. We are not expecting any surprises, by the way.
Dr Drummond the anesthetist is here. She is sweet and authoritative, and is presenting us with pain management options (epidural vs On Cue). We opted for the epidural. It has some downside (he may have trouble feeling the need to pee), but the upside is huge: it works; they will install it when he's under; and, did I mention, it works? This is the third time Dr Drummond has worked with Pablo, so she is speaking about what might work for him and how they will work with his body from firsthand experience. She knows what he ate yesterday cos she looked at his chart before talking to us. Of all the things we never thought about prior to 113 days ago, Pablo becoming a ubiquitous character around here was one of them. The sense of comfort and security this brings us is immeasurable.
On that note: many of the nurses said Hello to Pablo by name as we whizzed down the long hallways of Surgery and Pre-Op. Each time he would smile shyly and look into his lap. Or at the ceiling when I was popping wheelies in the wheelchair.
All this familiarity and warmth MUST have a profound, positive effect on P's emotional and psychological state.
We are lucky to be nestled in the arms of CHLA.
Looks like we're minutes away from rolling up to that candy cane line at the top of the surgery hallway. The one where we've said goodbye to our little boy three times in the past 16 days.
Twitchin' Limbs + Flippin' Babies
While we are waiting for the surgery transport team to come and grab Pablo, I have two stories for you: one scary, one funny. What else do I ever have?
What a night here at CHLA. Pablo went to sleep early. Jo Ann went home (after pulling back-to-back overnight shifts) to take a bath and sleep in our deluxe bed. Pablo wanted to have his bed all to himself, so I set up camp in the extra hospital bed I wrangled from an empty room the other day. This bed is not nearly as nice as our OG bed—I've never heard an air mattress squeak like rusty springs. Whatever my opinion of the bed, I wasn't in it long. Two scenes into this week's 'Mad Men' (thank you Steve Jobs/iTunes!), Pablo started screaming bloody murder.
I sprung (haha) out of bed and ran over to him. I already knew he sounded horrified. Looking into his eyes in the semi-dark room, I could see a perfect storm of fear, physical pain and something we haven't seen in P's eyes ever: terror. The impetus for all this emotion commotion? While he was peacefully snoozing, his legs began to twitch involuntarily. I'm not talking minor movements. It was as if his legs were doing the Charleston or some hop-scotch pattern. They were moving in a distinct pattern: left thigh up, knee in, ankle over right leg, thigh down; right thigh up, knee in, ankle over left leg. I was looking at this, looking up at his eyes, looking back down. Usually, when you see a human body doing something like this, you have a tub of popcorn in your lap, and you've paid $11.50 for the seat you're sitting in. Total horror movie material.
'Are you moving your legs?' I asked Pablo. 'Nooooooo Papa!' he screamed at the top of his lungs. 'My legs are doing that. They woke me up. They won't stop. I'm so tiiiiiiired! I just want to sleeeeeeep.' He was bawling, nearly hyperventilating. I put my hands on his knees. I could feel the strange current in his legs. Even with the downward pressure applied by my hands, the twitching continued. I started crying. I felt helpless. Useless. Ill-equipped to help my son. This is definitely not in the play book. I tried hard to think of what to do. My mind went blank. I scurried around above the pillows with one free hand, looking for the damn nurse call button. Couldn't find it. Pablo continued screaming. If we were in a battlefield, he'd have been screaming 'MEDIC!' But we weren't, so I held him in my arms, looked him in the eyes and spoke to him louder than his screaming. I told him I was going to run down the hall to get Danica, our nurse, and that he'd have to be OK without me for one minute. I told him I loved him and I was helping him. The whole time I was thinking, 'Oh f**k. This is how it goes. We get good news about the tumor, and then the endless stream of drugs they've been pumping into him causes nerve damage.'
When I got back to the room with Danica, he was screaming 'I want Mahhhhhhhhhhhhmeeeeeeeeee!' Good idea. I called Jo Ann. She was in the bathtub. At home. I barked the news into the phone and hung up. I knew she'd fly right over here. With all the screaming, I couldn't hear her anyway. It's 1.89 miles from our house to CHLA, so it'd only take a moment. Danica mentioned it might be a side effect of Zantac, a drug they give to Pablo to prevent stomach upset.
OK, I thought. Zantac. That makes sense. In a word, the wide world of nerve damage narrowed down to one simple, logical explanation. Moments later the on-duty pediatrician was standing before us. A vial of Atavan was on its way down the hall. It would calm him, and help him fall back asleep.
Jo Ann arrived during all of this, and jumped in bed with him. After 20 minutes, P was asleep, and she slipped out of bed. I slid a pillow into her place, and P snuggled up to it.
The placebo pillow worked, and so did the drug. But neither stopped the twitching. Withing 30 minutes, Pablo woke up again. Screamed again. I jumped up again, this time hopping into his bed. Cramming myself into one quarter of the bed space, I pulled the guard rail up behind me to hold myself up. I got Pablo to breathe with me. He was calming down. No matter what drugs he's given, slowing down via breathing is the best thing for him. It's that acceptance thing coming to life. I pulled his legs up toward my body, and wrapped my arms around his legs. And that's how we slept for the remainder of the night. The twitching slowed down, but it never stopped. In fact, his arms started twitching at some point as well.
When we woke up this morning, Pablo was bright and happy. He didn't mention the terrible episode, and I didn't either. He's been cracking us up all morning.
Jo Ann came straight here after dropping Grady at St Francis in La Canada. Before I went home to shower, we opened the shades, and sat on Pablo's bed. It was time to tell him that today was another surgery day. We took turns talking, alternating sentences or paragraphs, swiftly weaving our way through the description and explanation for today's procedure. While I was home, Jo Ann and a CHLA Child Life specialist did a play exercise with Pablo, in an attempt to increase his comfort with his fourth surgery in two weeks. They used a doll to illustrate what and where Dr Stein would be doing to his body. When I got here, the doll was sitting next to P in bed. The doll didn't look happy.
I asked him what was up with his doll.
'Flippin' babies!' he said, laughing his version of a sinister, sassy laugh.
'Whaaaaaat?' I replied. That was the funniest thing I'd heard, uh, all day.
The following photos illustrate just what he meant by 'flippin' babies.'
Step 1: examine the sweet baby doll
Step 2: embrace the sweet little baby
Step 3: make eye contact with le bambino
Step 4: flip!
Step 5: there you have it. flippin' babies!
What a night here at CHLA. Pablo went to sleep early. Jo Ann went home (after pulling back-to-back overnight shifts) to take a bath and sleep in our deluxe bed. Pablo wanted to have his bed all to himself, so I set up camp in the extra hospital bed I wrangled from an empty room the other day. This bed is not nearly as nice as our OG bed—I've never heard an air mattress squeak like rusty springs. Whatever my opinion of the bed, I wasn't in it long. Two scenes into this week's 'Mad Men' (thank you Steve Jobs/iTunes!), Pablo started screaming bloody murder.
I sprung (haha) out of bed and ran over to him. I already knew he sounded horrified. Looking into his eyes in the semi-dark room, I could see a perfect storm of fear, physical pain and something we haven't seen in P's eyes ever: terror. The impetus for all this emotion commotion? While he was peacefully snoozing, his legs began to twitch involuntarily. I'm not talking minor movements. It was as if his legs were doing the Charleston or some hop-scotch pattern. They were moving in a distinct pattern: left thigh up, knee in, ankle over right leg, thigh down; right thigh up, knee in, ankle over left leg. I was looking at this, looking up at his eyes, looking back down. Usually, when you see a human body doing something like this, you have a tub of popcorn in your lap, and you've paid $11.50 for the seat you're sitting in. Total horror movie material.
'Are you moving your legs?' I asked Pablo. 'Nooooooo Papa!' he screamed at the top of his lungs. 'My legs are doing that. They woke me up. They won't stop. I'm so tiiiiiiired! I just want to sleeeeeeep.' He was bawling, nearly hyperventilating. I put my hands on his knees. I could feel the strange current in his legs. Even with the downward pressure applied by my hands, the twitching continued. I started crying. I felt helpless. Useless. Ill-equipped to help my son. This is definitely not in the play book. I tried hard to think of what to do. My mind went blank. I scurried around above the pillows with one free hand, looking for the damn nurse call button. Couldn't find it. Pablo continued screaming. If we were in a battlefield, he'd have been screaming 'MEDIC!' But we weren't, so I held him in my arms, looked him in the eyes and spoke to him louder than his screaming. I told him I was going to run down the hall to get Danica, our nurse, and that he'd have to be OK without me for one minute. I told him I loved him and I was helping him. The whole time I was thinking, 'Oh f**k. This is how it goes. We get good news about the tumor, and then the endless stream of drugs they've been pumping into him causes nerve damage.'
When I got back to the room with Danica, he was screaming 'I want Mahhhhhhhhhhhhmeeeeeeeeee!' Good idea. I called Jo Ann. She was in the bathtub. At home. I barked the news into the phone and hung up. I knew she'd fly right over here. With all the screaming, I couldn't hear her anyway. It's 1.89 miles from our house to CHLA, so it'd only take a moment. Danica mentioned it might be a side effect of Zantac, a drug they give to Pablo to prevent stomach upset.
OK, I thought. Zantac. That makes sense. In a word, the wide world of nerve damage narrowed down to one simple, logical explanation. Moments later the on-duty pediatrician was standing before us. A vial of Atavan was on its way down the hall. It would calm him, and help him fall back asleep.
Jo Ann arrived during all of this, and jumped in bed with him. After 20 minutes, P was asleep, and she slipped out of bed. I slid a pillow into her place, and P snuggled up to it.
The placebo pillow worked, and so did the drug. But neither stopped the twitching. Withing 30 minutes, Pablo woke up again. Screamed again. I jumped up again, this time hopping into his bed. Cramming myself into one quarter of the bed space, I pulled the guard rail up behind me to hold myself up. I got Pablo to breathe with me. He was calming down. No matter what drugs he's given, slowing down via breathing is the best thing for him. It's that acceptance thing coming to life. I pulled his legs up toward my body, and wrapped my arms around his legs. And that's how we slept for the remainder of the night. The twitching slowed down, but it never stopped. In fact, his arms started twitching at some point as well.
When we woke up this morning, Pablo was bright and happy. He didn't mention the terrible episode, and I didn't either. He's been cracking us up all morning.
Jo Ann came straight here after dropping Grady at St Francis in La Canada. Before I went home to shower, we opened the shades, and sat on Pablo's bed. It was time to tell him that today was another surgery day. We took turns talking, alternating sentences or paragraphs, swiftly weaving our way through the description and explanation for today's procedure. While I was home, Jo Ann and a CHLA Child Life specialist did a play exercise with Pablo, in an attempt to increase his comfort with his fourth surgery in two weeks. They used a doll to illustrate what and where Dr Stein would be doing to his body. When I got here, the doll was sitting next to P in bed. The doll didn't look happy.
I asked him what was up with his doll.
'Flippin' babies!' he said, laughing his version of a sinister, sassy laugh.
'Whaaaaaat?' I replied. That was the funniest thing I'd heard, uh, all day.
The following photos illustrate just what he meant by 'flippin' babies.'
Step 1: examine the sweet baby doll
Step 2: embrace the sweet little baby
Step 3: make eye contact with le bambino
Step 4: flip!
Step 5: there you have it. flippin' babies!
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