Today was business as usual at CHLA. After changing to his own room yesterday, Pablo had to move to an entirely new room today. This time with a roommate. His solo room was needed for a child who required isolation. We've been in that position before, and we knew that at some point the tables would turn. That's how it goes. It's very nice when we get our own room—especially for the parent sleeping over with P. The built-in parent bed is way more comfy than the biz class sleeper chair. And, for me, although I love snuggling in bed with P, his bed isn't big enough for me, and my legs cramp all night, and usually the next day. Pablo's urinalysis came back negative for blood and infection today. It's been going back and forth since we checked in on Friday. There was a chance that a micro-plot was going to develop if there was an infection, or if the presence of blood persisted. It's a relief that this is no longer a concern. At least not today. Enough small talk.
I've been thinking all day about how to write about this. There are very few things I am hesitant to talk about on the Pablog, and this is one of them. What I am about to write about is our experience with another family's journey. Baby Luke, and his mom Laura, dad John and big sister Gracie. We have been inspired by Laura and John's grace. Simple as that. When you live on the cancer battlefield, you notice grace when you see it. It stands up and demands your attention. We got to know Laura and Luke in the hallways, in the waiting rooms, waiting for the restroom. Random 'hellos' turned into much longer conversations. Jo Ann and Laura have become quite close over the months. Seems like every time we've been in the oncology clinic at CHLA or in-patient up in 4 West Laura and Luke have been there too.
Beyond all the interaction we've had with them, Jo Ann and I have talked a lot about them. Our hope for Luke became synonymous with our hope for Pablo. Their progress
became synonymous with Pablo's progress. Luke was always on our minds—especially Jo Ann's—and if they had a down day, we would download about it at the end of ours. To use the battlefield reference again: to us, Luke's family was like a unit fighting next to us on the front line. In a war that matters.
We knew that they were at a critical juncture in Luke's treatment. There was a very long surgery to remove a tumor that had recurred. We figured it would be like clockwork: do the surgery, remove the tumor, and continue with the treatment plan. Keep the front line strong and steady. But on Friday, Laura and John got some very, very tough news. All the minutes and hours and days and weeks and months—all the life and hope and prayers and dreams they have put on the line to kick the s**t out of the cancer in that little boy's body—hinged on one central factor: that the cancer would go away. Forever. And it appeared that that would be the case. For a while.
On Friday, Luke had another scan. They wanted to verify that their plans for the next round of treatment were sound. What the scan revealed was cause for the kind of conversation that stops a man in his tracks when he knows he has to have it with another person. Especially the parents of a precious, darling little boy. It's the kind of conversation that when you see it in a movie, you are glad it's in a movie and not in your calendar in the TODAY column. It's the kind of situation Morrissey was talking about when he wrote the great Smiths lyric 'I've seen this happen in other people's lives, now it's happening in mine.' I could go on, but you get what I mean.
What the scan revealed, and what the doctors had to tell the parents, was that Luke's cancer had come back. Strong. And more of it than before. In an instant, the plans for a future battle were dashed. The discussion shifted from more chemo and possible stem cell transplant to a plan to create lasting memories for Luke and and his big sister Gracie? Go ahead, read that sentence again.
Last night after dinner, I came upon Jo Ann in the hallway. She was talking to Laura. She was holding Luke. With an NG tube down his nose and taped to his face (a common sight on the fourth floor of CHLA), Luke was so cute, and sweet as ever. He seemed tired, and Laura remarked that he was always like that. Since his last surgery. When I walked up to the conversation, Laura was talking about how they were going to sleep in the same room as a family. I thought she was referring to maximizing the space in their room in the bone marrow transplant unit. I had missed a beat—a giant beat. She was talking about how they were going to all sleep in the same room at home. She and John decided it'd be best to set up a blow-up camping mattress and sleep in the kids' room. They have created a family bedroom so that all of them: Dad John, Mom Laura, sister Gracie and Luke, would be together for every moment.
At some point, I excused myself from the conversation. I wasn't actually in it, and anyway I was on my way back to Pablo. As I walked away, I didn't quite grasp what they were talking about.
A few minutes later, Jo Ann caught up with me. Grady and Pablo were playing elsewhere, and we had a rare private moment to talk. Jo Ann was beside herself. She told me that Luke—our friend who has been around constantly over the past few months, his journey, his hope intertwined with ours—was finished with treatment. A second flashed by: what did that mean, finished? Her next sentence filled in the gap: after weighing the options, the family has made the decision to go home and create as many enduring memories as possible. Based on what they saw in that scan, they estimated that Luke has a week or so to live.
I remember hearing air. It wasn't windy in the room. But I could hear nothingness passing through my head. White noise that wasn't white noise. It was far from white. I knew the noise. And I had seen this happen in my life, when Scott was that close to death. With Jo Ann's compassionate encouragement, I have let Scott go. So I was not going to go down that massive road of memory again. But the simple fact is, while I didn't want to stroll down that road, I knew the block I was on.
A little while later, Grady and I were leaving CHLA to go home. In the underground parking structure, the elevator door opened. Laura was standing there. I grabbed her and gave her a giant hug. I wanted to weep. But I did not. I mean I wanted to—my intellect was in the way. She went into the elevator and went on her way. It was clear that she was at peace with the news. You would have to be. People like us, we aren't dealing with flash news. This cancer stuff has controlled our lives for months—almost a year. The news, it comes with a very—loud—bang—but it's not a shock in the way that getting hit by a car is a shock. So the mom was peaceful and I felt it.
As G and I turned to our left and walked toward the car, we saw John packing Luke and Gracie into their car. I've only spoken to John twice. He, like me, has to work, while Laura, like Jo Ann, did 24 hour duty at CHLA. John too seemed at peace. I wanted to hug him. But he was on the other side of a thick concrete parking lot pillar. So I shook his hand. It was a rare situation where I did now know what to say as I shook his hand. I don't recall what I did say, but I recall saying something. John gripped my hand firmly. His hand was strong as hell. The energy he transferred into me was real, powerful, did not need words. John, like me, had packed his little boy and his little girl and all their bags and pillows and books into the family car countless times in that very parking lot. His hands were strong because his journey of packing the car in that parking lot had come to an end. There would be no more parking lot packing for him at CHLA. The look in his eyes I will never forget.
We love our little boy friend Luke. We love his family and their grace and serenity and dignity. We have asked you to turn your consciousness in our direction so many times. This time, we ask you to turn it to our friend and his amazing family, in Calabasas.
Love is real. Light is real. Your thoughts, intentions, prayers are real. They are felt, and they make a difference in the world. Take a moment today to send love to Luke, Gracie, John and Laura.