Pablo and I had a great night. He invited me to sleep in bed with him—an upgrade from the 'don't talk, don't touch me' days immediately following his surgeries. The invitation itself cooled my tense nerves, and soothed that part of the parent me that wants—needs—connection with my son.
I read Pablo 'How The Grinch Stole Christmas.' To put a finer point on it, we read it together. The dude knows the whole book, line for line. He kept cutting me off, stealing the next line or two, then leaving me with the weird Seussian bits too complex for his kindergarten tongue. We snuggled, and I tried to accept his night moves: quick jagged body spasms (like the kind you have when you dream of falling), talking and quiet screaming, heart rate rising and falling (the monitor reminds us). I say accept because my instinct is to do something, to help Pablo, to soothe him in some way. We have learned that leaving him alone during those micro-episodes is best. He doesn't remember anything when he wakes, and, of course, he is safe. It's easy to assume (or invent) that these are chemo dreams, or the subconscious horrors of surgery evaporating from his body. But that's just my intellect and emotion in a tug-of-war. Pablo's new repertoire of night moves could also be a natural evolution with no connection to his cancer treatment.
As we slept the night away, he woke around 3 a.m., grasping at his belly. His face was all scrunched up and his eyes were saying 'help' although his voice was silent. 'Do you have to poop?' I asked him.
'Yes, but I don't want to,' he said. 'I'm tired.'
After a moment of breathing through it, Pablo agreed to sit up in bed. A minute later, we were making our way to the bathroom—the two of us, and our constant companion the I.V. pole, with and all its cables, cords, beeps and blinks. What happened next was the first step of Pablo's hospitalbreak: a bowel movement! I am proud of the work Pablo did on that toilet. This is not potty humor in any way. He was scared to let it go. He didn't say why, but I imagine it hurt, or felt odd, to let loose after two weeks of being poked and prodded, cut and sewn. I asked him to trust me; I locked eyes with him; we breathed the way Jo Ann and I taught him to breathe (big inhale, slow release) through pain and fear. A few repetitions of breath and his hands loosened in mine. His scrunched up face fell back to its normal position. And then—plop—history was made.
We got back in bed. I pushed the NURSE button on his bedside monitor. 'It's all yours' I said. And we shuts our eyes, snuggled, and fell out like a scout on a new route.
Since waking this morning, he's gone poo again. That, as we promised him, was his ticket to getting the NG tube our of his nose/stomach. Six days with a plastic tube taped to his face—a record for Pablo. And now it's gone. Somewhere in between poo and tube removal, Jo Ann and Patricia took him on a big walk. He is happy and ready to kick back in his bed and watch more 'Planet Earth' and play with Legos.
Tonight is slated to be another Polly sleepover. Dr Mascarenhas called the room last night and spoke to Jo Ann. He mentioned the idea of starting the new chemo regimen on Tuesday—if Pablo is well enough. We will keep you posted on this.
We are also hoping to have the pathology results back by end of day Tuesday. In addition to the pathology study being done at CHLA, slides of both tumors have been sent to Dr Elizabeth Pearlman, professor of pathology at Northwestern University Feinberg School of Medicine, and the head of pathology at Children's Memorial Hospital in Lincoln Park Chicago. She is the head of the National Wilms' Tumor Study Group Pathology Center, which is located at Children's Memorial. Dr Pearlman has studied more Wilms' tumors than anyone in the U.S., so her opinion and view on Pablo's tumors is of great significance for us—both scientifically and emotionally.