We just returned home from a great dinner at Malo. Even though Pablo threw up, we had a fun time playing 'I Spy' and chomping on chips. We ran into Christopher from Silversun Pickups and his girlfriend Sammy. It was great to see them. Reminds me that Malo is one the clubhouses of Silverlake—we always run into friends there.
After dinner, we went to Target in Eagle Rock to get a Christmas tree. Because Pablo is on immunocompromised, we can't have a real tree. Jo Ann and I kind of into having a fake tree. Just for this year. Pablo and I fell in love with the white ones. Guess we were in the mood to have a Chuck Berry xmas, or a Paulie Walnuts xmas. Somethin real off the hook, with gold ornaments and happy time lights. Our plans were short-lived though. Jo Ann and Grady said No.
We're about to build the facsimile tree (pix tomorrow). Pablo ran down and saw me typing and demanded that I allow him to type something to you. He tapped the keys, I gave him the letter instructions. Here you go:
merry christmas
Friday, December 5, 2008
We Have A Family Dinner Date Tonight!
We are having another great day. Pablo woke up happy and has been bouncing around the house ever since. Jo Ann and I had a meeting this morning. On the way home, she mentioned going out for dinner tonight. Haven't heard her say that in months! I immediately said Yes. She suggested my and Pablo's favorite spot, Malo. I said Hell yes. When we got home she asked P if he'd like to go out, and he immediately suggested Malo. Grady will be over the moon when he hears that we are going out—as a family—for dinner. I almost can't believe it.
Malo is where our journey began on May 17. You may recall (or you may have been there) that we left my birthday dinner at Malo to take P to CHLA.
We've been there many times since, so it's not like that crazy that we'll be there. The special part of going out tonight is that it's been at least two months since we went out for dinner with Pablo.
That's pretty much all there is for now. We hope you and your family and friends are having a great day, and are heading into a great weekend. We're awaiting Dr Mascarenhas' approval on getting a live Christmas tree. We'd like to get one this weekend. Mommy's got prezzies piling up already. A couple weeks ago, our dear friend Mary Collins brought a pile of Waldorf School Angel Room presents over, and Pablo picked out gifts for all of us. So, we've got a lot of stuff to arrange under die tannenbaum.
Malo is where our journey began on May 17. You may recall (or you may have been there) that we left my birthday dinner at Malo to take P to CHLA.
We've been there many times since, so it's not like that crazy that we'll be there. The special part of going out tonight is that it's been at least two months since we went out for dinner with Pablo.
That's pretty much all there is for now. We hope you and your family and friends are having a great day, and are heading into a great weekend. We're awaiting Dr Mascarenhas' approval on getting a live Christmas tree. We'd like to get one this weekend. Mommy's got prezzies piling up already. A couple weeks ago, our dear friend Mary Collins brought a pile of Waldorf School Angel Room presents over, and Pablo picked out gifts for all of us. So, we've got a lot of stuff to arrange under die tannenbaum.
Thursday, December 4, 2008
Ding Dong and Dum-Dum
I picked up a pair of venerable American tasty treats—a Ding Dong and a cotton candy-flavored Dum-Dum—for Pablo this morning at Fix, a new coffee shop on Echo Park Boulevard. He can't eat them until later or tomorrow, but they made him happy today.
His blood test from this morning came back—platelets are zero again, but everything else is looking good. We just have to keep him from bleeding. We can handle that.
Dum Dum
Ding Dong
His blood test from this morning came back—platelets are zero again, but everything else is looking good. We just have to keep him from bleeding. We can handle that.
Dum Dum
Ding DongMeet Our Family
The world's smallest top hatYesterday morning, Pablo and I decided to play with Play-Doh. I had no idea how happy it would make us. How much fun we'd have. And that it would fuel the first truly happy, not-at-all-sad post I've written in a long time.
At first, we made stuff out of it—little blobby objects. Then Pablo started playing with fruit from the fruit tray on the dining room table. That sparked an idea for me—something to make him laugh—and I popped two Play-Doh eyeballs and a mouth on an orange. He busted a gut laughing. Mission accomplished.
Then he made a face on another orange. And then he lined up five apples (counting them one-two-three-four-five) and made faces on them. We laughed the whole time. I almost felt like I was on drugs. It was genuine fun. And the look in his eyes as he was laughing—real, pure, sweet. One of us referred to the Dohed-up fruits as 'our fam.' That brought on more laughter. When Polly arrived, we introduced her to the family.
When we'd faced all the fruit, we shared the duty on his juice bottle. The last member of our family to come to life was the fake loaf of bread. Pablo noted to Polly that we had Mommy, Papa, Grady and Pablo oranges, and that there was no Polly. Then he remembered the loaf, and bestowed loafdom on her. That's true love.
This morning, I drove Grady to school and Jo Ann took Pablo to the CHLA oncology clinic for another blood draw. Dr M is going to run specific tests to be sure his major abdominal organs are working properly.
Here's some pix of le familia:
At first, we made stuff out of it—little blobby objects. Then Pablo started playing with fruit from the fruit tray on the dining room table. That sparked an idea for me—something to make him laugh—and I popped two Play-Doh eyeballs and a mouth on an orange. He busted a gut laughing. Mission accomplished.
Then he made a face on another orange. And then he lined up five apples (counting them one-two-three-four-five) and made faces on them. We laughed the whole time. I almost felt like I was on drugs. It was genuine fun. And the look in his eyes as he was laughing—real, pure, sweet. One of us referred to the Dohed-up fruits as 'our fam.' That brought on more laughter. When Polly arrived, we introduced her to the family.
When we'd faced all the fruit, we shared the duty on his juice bottle. The last member of our family to come to life was the fake loaf of bread. Pablo noted to Polly that we had Mommy, Papa, Grady and Pablo oranges, and that there was no Polly. Then he remembered the loaf, and bestowed loafdom on her. That's true love.
This morning, I drove Grady to school and Jo Ann took Pablo to the CHLA oncology clinic for another blood draw. Dr M is going to run specific tests to be sure his major abdominal organs are working properly.
Here's some pix of le familia:
This is our whole family—Polly is the loaf of fake bread, and we are the oranges.
Mommy and Papa
Grady and Pablo
Some of our early works—the whole gang.
Wednesday, December 3, 2008
Free Day
This is the easiest post I've ever written. It's a great morning. Pablo is home, happy, healthy. He looks and feels great. He woke up in a good mood. He's eaten two Fro Yos. He snatched the prizes out of both of his Advent calendars—the Lego calendar from Eli, and the Starbucks chocolate calendar from me. Both prizes brought a smile to his face.
Last night, Pablo and Grady talked and played and hung. Pablo adores Grady. Grady adores Pablo. When Jo Ann drilled G on his homework, Pablo sat there, watching and absorbing the entire scene. At the dinner table, their conversation flowed fast and furious. I sat there, watching them in awe. They are brothers. They love one another, and enjoy being with one another. That is real. Last night was a Polaroid in a vast sea of snapshots. I sat there thinking, These guys will look back in 20 years and recall, maybe, one of these nights at the table. I wonder which one it'll be?
We have absolutely no medical activity scheduled for today. We are free. That is a relief and leaves our family open to millions of possibilities. Somehow, I think we are too fried to take advantage of most of those possibilities. It's just nice to know we have options.
There is an update on Pablo's MRI and CT scans from Monday. It's all good—there is no sign of a recurrence of cancer in his kidney, or a new growth in his lungs or brain. There is a fluid build-up of some sort in his abdomen. And the scan shows that he is constipated—odd, because he has been going #2 regularly. Jo Ann just spoke with Dr M —we are going in tomorrow for a blood draw, which will be used to check major organ functions. We will see Dr M on Monday as well, for our scheduled check-up before the next in-patient chemo treatment. He will physically examine Pablo's body. We will get to the bottom of this fluid and constipation. But Dr M assured Jo Ann that neither was a cause for concern at this point.
Now, back to our regularly scheduled free day.
Last night, Pablo and Grady talked and played and hung. Pablo adores Grady. Grady adores Pablo. When Jo Ann drilled G on his homework, Pablo sat there, watching and absorbing the entire scene. At the dinner table, their conversation flowed fast and furious. I sat there, watching them in awe. They are brothers. They love one another, and enjoy being with one another. That is real. Last night was a Polaroid in a vast sea of snapshots. I sat there thinking, These guys will look back in 20 years and recall, maybe, one of these nights at the table. I wonder which one it'll be?
We have absolutely no medical activity scheduled for today. We are free. That is a relief and leaves our family open to millions of possibilities. Somehow, I think we are too fried to take advantage of most of those possibilities. It's just nice to know we have options.
There is an update on Pablo's MRI and CT scans from Monday. It's all good—there is no sign of a recurrence of cancer in his kidney, or a new growth in his lungs or brain. There is a fluid build-up of some sort in his abdomen. And the scan shows that he is constipated—odd, because he has been going #2 regularly. Jo Ann just spoke with Dr M —we are going in tomorrow for a blood draw, which will be used to check major organ functions. We will see Dr M on Monday as well, for our scheduled check-up before the next in-patient chemo treatment. He will physically examine Pablo's body. We will get to the bottom of this fluid and constipation. But Dr M assured Jo Ann that neither was a cause for concern at this point.
Now, back to our regularly scheduled free day.
Tuesday, December 2, 2008
We Can Check Out + We Can Leave
On the way to CHLA, Jo Ann called and said we might have to stay. The thought of another series of days in this place shot through me like an unwanted bolt of lightning. Or like the time I got electrocuted when I was a kid by touching
one hand to our trailer and one hand to the old skool metal refrigerator outside our trailer. Ouch. It shocked me just like that.
Alas, there is good news! All the shocks went away when I make my way to our little corner of the oncology day hospital. Jo Ann had just gotten the results of today's blood test. Pablo's ANC - a key metric for one's ability to fight infection - had risen above zero. This means we get to go home!
Lauren Katz's blood started dripping into Pablo's port 30 minutes ago. Three-and-a-half hours to go. Pablo is happy and having a great time with Play-Doh and some Scoob on the toob.
Now that we're all in a good mood, how about an E! Hollywood True Story? When I got in line for my CHLA sticky pass in the front lobby, there was a huge group of shiny happy people talking, smiling, shining. Definitely not peeps who were here to see sick cousin Timmy or whatever. I looked at the crowd and kind of recorgnized one guy: 'Is that dude on, like, an infotainment show I saw on a plane? Man, he looks familiar....'
Then I walked away and forgot about it.
When I got to our stall in the day hosp, Jo Ann told me that the crew of celebs in the lobby was Jessica Biel and her friends. How could I forget? Today is Jessica's holiday party for all in- and outpatients. Time to turn off my sassymeter and get with the program. The guy from the celeb gossip show I watched on Jet Blue is probably raising millions for CHLA, and is certainly gonna raise awareness of the good work being done here.
Now, I gotta run - have to track down my old buddy Justin Timberlake. Haven't seen him since Jo Ann made his first solo video. The one on top of 7-11. I was there. And Jo Ann made JT's day by making him the first ever singer to be granted access to an actual 7-11 for a music vid.
Lastly and most importantly, here's our shiny happy hero with his latest Play-Doh creation: finger warmers....
Monday, December 1, 2008
Home.
We are home. Pablo and Jo Ann are asleep. They need and deserve a good night's sleep.
So do I.
So do you.
Good night.
So do I.
So do you.
Good night.
Post-Op Bop
Pablo's two scans are complete. Mission accomplished. While he was in the machines, Jo Ann and I completed the items on our list. The three of us reunited in the nurses station - a giant room with curtained stalls. It's essentially a post-op room.
Pablo is still sleeping, and should be waking any minute. It's kinda freaky to see him in this chemically-induced sleep. For a start, P is normally bouncing off the walls and talkin a mile a minute at 3:30 p.m.
Our nurse from 4 West is incredibly sweet. She brought all of our discharge papers down here (two floors away) to help get us home.
Jo Ann says Pablo looks like one of the vampires in 'Twilight.' Not cos he has an insatiable bloodthirst. Because he is pale and gaunt and bald and his eyelids are mouse-ear pink.
Part of me wants to snap a picture of him sleeping. That part lost out to another part of me that thinks photographing my son under anesthesia is creepy and morbid. And to the presumption that Jo Ann would punch me in the neck if I snapped a shot in here. The reason for doing it is to show him one day when this era of his life is far, far away. I am sure he will have lots of questions, and will love this story. It's his story. But the one image that will be missing is the one above the caption, 'This was you on December 1 2008. You freaked out in the CT donut, so they put you under.'
Pablo Wants To Be Sedated
I'm standing at the technician's station looking through the glass. Just like a recording studio. Pablo's out. Jo Ann is helping to position his little body. They will only allow one parent in the room, torture for me. But that's the rules.
We tried to do the CT scan without sedation. Never needed it in the past. Thing is, today was our first scan in the brand new Philips donut machine. This thing is so cool it actually has two donut rings. Twice as cool to me, twice as scary to Pablo. He lost it when the bed began to slide in. 'I want Papa!' Tears. Screaming. Today's scan is of his chest, so he has to go in the machine all the way, including his head. He does not like. Not even a little.
He'll be in scanland for 2.5 hours, so we're gonna load the car, get our discharge papers in order, verify our blood transfusion (happening tomorrow cos the clinic is full today), pay for our new CHLA parking passes, and eat lunch.
Scan + Escape
Jo Ann pulled the overnight shift last night. Pablo slept fine, but she had a very tough night. At some point Sunday afternoon, we got a roommate—a boy younger than P who is loud and had piles of people in the room much of the day and evening. This happens. Children are loud, especially when they can't eat because of a surgical procedure the next morning, which was the case with our roomie.
Pablo will have an MRI and a CT scan this afternoon, and he will sedated. So he had an eating restriction as well. Most of the time he is OK with it. At five years old, he is old enough to understand. Plus, he's been through sedation a couple dozen times, so he's had a lot of practice. He knows that there's a beginning, a middle and an end to the process. And the end means one thing: food!
The MRI will give Dr M a 3-D view of all the relevant areas of Pablo's body. The CT scan will shoot only his chest—to verify that there are no growths in his lungs.
Today's schedule also includes another blood transfusion. Jo Ann told the nursing staff that she was going to unplug Pablo and walk him out of there today and that she wanted to do the transfusion in the oncology clinic downstairs. And their response was? 'OK.' I wish I'd have been in the room to witness that exchange!
The general plan for today is to pack the room and load our bags into the car. Pablo's scans will take probably 90 minutes to two hours combined. We will have food ready for him when he wakes up. We'll go immediately to the onc clinic to meet up with a bag o' blood. P can eat while he's being transfused. Depending on the drip rate of the blood bag, it will take between three and four hours. Which puts us in the parking lot to drive home sometime after 6 p.m.
Even though I slept at home for the first time in four nights, I feel like hell. Why? I stayed up too late reading the damn Joe Eszterhas book 'Hollywood Animal' that Butch lent me on Saturday. Can't put it down. Plus, I have this unrealistic habit of trying to make up for lost time when I get out of the hospital. I know better than to attempt that, but I do it anyway. Today I am paying for it.
More later.
Pablo will have an MRI and a CT scan this afternoon, and he will sedated. So he had an eating restriction as well. Most of the time he is OK with it. At five years old, he is old enough to understand. Plus, he's been through sedation a couple dozen times, so he's had a lot of practice. He knows that there's a beginning, a middle and an end to the process. And the end means one thing: food!
The MRI will give Dr M a 3-D view of all the relevant areas of Pablo's body. The CT scan will shoot only his chest—to verify that there are no growths in his lungs.
Today's schedule also includes another blood transfusion. Jo Ann told the nursing staff that she was going to unplug Pablo and walk him out of there today and that she wanted to do the transfusion in the oncology clinic downstairs. And their response was? 'OK.' I wish I'd have been in the room to witness that exchange!
The general plan for today is to pack the room and load our bags into the car. Pablo's scans will take probably 90 minutes to two hours combined. We will have food ready for him when he wakes up. We'll go immediately to the onc clinic to meet up with a bag o' blood. P can eat while he's being transfused. Depending on the drip rate of the blood bag, it will take between three and four hours. Which puts us in the parking lot to drive home sometime after 6 p.m.
Even though I slept at home for the first time in four nights, I feel like hell. Why? I stayed up too late reading the damn Joe Eszterhas book 'Hollywood Animal' that Butch lent me on Saturday. Can't put it down. Plus, I have this unrealistic habit of trying to make up for lost time when I get out of the hospital. I know better than to attempt that, but I do it anyway. Today I am paying for it.
More later.
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