Wednesday, August 27, 2008

We Have A New Home

After nearly two full days of waiting, we have a new home–a nice, quiet room at the end of the hallway in 4 West. Quiet except for the poor little baby next door who has been wailing on and off. I have come to expect that every few hours, I will learn or be exposed to something new in this place. I hadn't considered what it might be like to have a small baby with cancer. When I hear our baby neighbor, I appreciate that Pablo can speak, and can understand what we are saying. If crying were still his only way to communicate, and he were still nursing...well, I can't even imagine.

Pablo is settled in, savoring his second consecutive lemon lollipop as he takes in 'Dumbo' for the 1,052nd time. The lights are off; the only light in here is from outside and the computer screens. In our new room, we have a view. Through three window planes (an atrium and a hallway), we can see all the way down Sunset Boulevard. I am sure real estate agents have a bouge term for this kind of view, but I don't know what it is. (If you know, please email me.) Oh! I almost forgot to mention that we have a parent BED up in here! Yes, an actual bed. Not a 'sleeper' or a 180 degree chair. A bed.

Which brings me to my next topic.

I am full of gratitude tonight–for so many things, starting with the bed, and going on to Jo Ann, Grady, Pablo and Polly, Jo Ann's parents Patricia and Harry, Jimmy, Francine, Helen, and on and on. When I think of the army of support we have, it floors me. Every day, there is so much love directed at Pablo, and at our family. It is humbling. Seriously. When this is over, all the love and time and dedication and selflessness that all of you have given us will be turned over, and reflected back to whomever in our world needs it. Another way I want to give back is to have Pablo give speeches with me at CHLA events (like I did two weeks ago), to tell his story in his own words. It will be up to him. If he wants to do it, I'll be right there by his side. If not, he can sit next to Dr. Fleiss, like I did last week, and he can watch me in front of a crowd of people, talking about the wonder of this giant complex of buildings we call CHLA.

When I think how lonely I felt yesterday, last night, and this morning, I realize it must have been a precursor to the warm glow of gratitude I'm feeling now. You know, a darkest before dawn kinda thing. A clearing of the decks, so I could get perspective. I am one of those people who has to feel like I'm stuck in a thunderstorm once in a while, only to realize I've been standing in the sunlight the whole time.

There is a dude who is an intern here, a pediatrician named Dr. Bruckner. His parents are pediatricians in Encino, and, like him, went to USC Med School and interned at CHLA. He is our pediatrician when we're in 4 West, so we're back in his orbit as of now. I ran into him in the elevator yesterday, and he followed me to the PICU to see Pablo. He pulled me into the hallway last night, and again this evening, to give me his feedback on Pablo's condition as well as his perspective on what all the medical services are saying in the reports, and in the hallways. Back channel stuff we'd never know about. I'm not talking confidential stuff–more like subtext and fine details that create a more vivid picture of what/how/why things go down a certain way. Tonight, he told me that Dr. Mascarenhas' orders in the computer are a page long, as opposed to the 'three sentences' that most docs at his level throw into a patient's chart on the hospital server. That makes me feel great about a man we already love, adore and respect. It's really something to feel that human connection with the doctors and nurses here–to feel how their calling in life–to help others at all costs–is linking in with our little boy's fight for life.

I mean, how many times have we gotten excited about our travel agent getting a sweet upgrade on a flight or hitting a home run on a business deal? Or, in my business, a chart position making me feel alive. Ugh. Those things all have their place in life, for sure. But the feeling I get when we connect with someone here trumps all of that. This s**t really matters. And I know it would for any of us. Our kids are everything. They are us, and we are them. They have come into our lives. Some believe they have chosen us. To take it a step further, some believe that our children come to us to guide us down the path. Jo Ann and I believe this is the case. Grady and Pablo hover and sway in life in a way that is undeniable. This is all counterintuitive to the 'do as I say' form of American parenting. But we ain't in the bidness anyway.

In case you missed it in my post from earlier this evening: the pathology department is taking more time than expected to do their tests on the left tumor. Dr. Mascarenhas told us to we'll have the histology tomorrow or Friday. He has instructed the pathologist to email him the report, because he is out of town on the east coast, giving a speech this weekend. The minute he gets the email, he is going to call us.

OK, I am going to finish watching 'Red Belt,' the excellent latest David Mamet film I downloaded on iTunes last night. (By the way, it's no surprise that Steve Jobs is a cancer survivor. iTunes/iPod movies are the PERFECT, practical, user-friendly companion to long days and nights in a hospital.)


Dawn: said...

Just want to again send all my love and prayers to your family tonight and wishes for good rest and the best possible outcome on the histology.

And Jo Ann...we're all thinking of you and missing you in class.

Charlotte said...

Hi, it's Steph.

We are thinking of you constantly. I just talked to my mom. She plays piano every Sunday morning for the prisoners in LA County Jail. She has asked those men she cares deeply about to pray for Pablo. She knows those men's prayers are powerful. We are sending our prayers too. Hugs to all of you.

Big Love,

Steph, Pete, Charlotte, Oona, Roddy and Josephine