9 p.m. and Nick is in ICU recovering from the insertion of tubes to drain his lungs of fluid. He hallucinated on a drug called Ketamine. I was told that after he woke he looked up at a nurse, and said – –you have a face like a monkey’s butt.
I laughed out loud. I can’t be blamed for that one – it’s not one of my sayings. He’s a respectful kid. Maybe he just said what he saw because the drugs took away his filter; what we learn when we are young so we speak of only half of what we think.
Apparently, all the kids get to speak their mind after receiving this drug. One tiny patient told her surgeon, his brow damp with sweat after a complicated surgery, – -you’re really dumb. The group in the operating room roared – must have been a good stress buster. I want some of that drug.
Nick’s surgery removed 860cc of fluid from the pericardium (sack around his heart (I’m learning)) and 900cc of fluid from his right lung. That is about the same as one carton of milk! Each lung is draining bloody fluid through a tube the size of my thumb. The tubes come out from under the covers on each side of him, and then drain into a “Pleura Vacuum” hanging on each side of his bed. Light suction is created by running air through water in a separate little reservoir on each device. The bubbling noise is white and soothing. He is exhausted. I want to lift the covers and look, but I’m almost scared to touch him and I don’t want to wake him.
I spent the night on a mat in a corner of a playroom in this huge hospital. I met another mom named Debbie. Her son Justin has osteo sarcoma, a bone cancer. He is the oldest patient on this ward (a mere eighteen) and they have been here for months. She has been awesome, answering my endless questions and keeping me from the edge, where I might jump because my brain melted, and my heart broke.
Thursday Jan. 28, 1999
Nick’s breathing is not as rapid. This awful sickness has been brewing for months. There were the reports of his falling down at school for no reason, his fatigue and sporadic nausea so I took him to the doc, a couple of times, but the disease was in his bone marrow, and simple blood tests couldn’t find it.
I remember watching him while he slept the night before he was diagnosed. Swollen tummy and shallow, quick breaths; I felt this was something bad, and maybe he would be hospitalized, but never for cancer! That only happens to aging smokers. But look at this place! It’s full of children with cancer. If I had waited to take him to the doctor they tell me he would have died. His heart might have quit beating from laboring so hard with all of that fluid around it. Where did this fluid come from? I don’t know how this works.
I’m so glad I grabbed Nick’s stuffy bear when we were running out the door on our trip between hospitals back home. He loves his bear and asked for it this morning in ICU. I got five hours of sleep on the mat last night and was in ICU at 4 a.m. I’m so grateful they let me in to be with him, and I can live here in the hospital. I walked to the grocery store a couple of blocks away and bought a few things to eat. There is a parent lounge with a microwave. It’s too expensive to eat in the cafeteria.
I’m told that Nicholas needs to be stable enough to start chemo. CHEMO – the stuff of nightmares, of other worlds and in other lives; there has been some rip in the universe, and the madness has leaked into our lives.
They took another 100cc from the sac around his heart.
Nick is sleeping in ICU. It’s quiet except for the pumps and machines that whir and beep in the room. The same nurse comes in every few minutes to inspect the various wires and hoses he is connected to, then she writes down the numbers and letters from the numerous digital screens. I’m afraid to speak in case I’m deemed in the way, or move, in case I set off an alarm. I’m burning with curiosity but feel like an alien that isn’t sure of this species’ etiquette. Can I ask questions?
–How do they take the fluid from around Nick’s heart?
–They insert a needle into the sac that surrounds his heart and suction the fluid.
–How do they get the needle into the sac? Do I really want to know this?
–They push it right through the chest wall. Here. And she indicates by pointing to a spot slightly to the left and just below the middle of her rib cage.
–And he’s asleep? My voice squeaks.
–Yes, Don’t worry, he can’t feel a thing. She is smiling at me.
I look at the dark circles under his eyes, the pale skin, his lifeless body except for the rise and fall of his chest, and realize a bomb could go off and he wouldn’t move. My busy, happy, little boy taken down to this level – I keep trying to swallow the big lump stuck in my throat.
Evening January 30
There are all these procedures they want to do that need an anesthetic so he can’t drink anything, and then they make him wait. He’s thirsty, precious lamb and that drives him nuts! He wants out of here. He can’t figure out what is going on. He’s only eleven years old, I can’t figure out what is going on and I’m 37 years old. I want to wake up. This isn’t happening to us!
I haven’t been able to talk to my husband driving the semi- truck in the southern U.S., but my brother-in-law got a message to him and he is on his way. He must be sick with worry. He will pick up Frankie on his way through from Calgary. I’ve talked to friends from home. I called Bonnie S. at 3 a.m. I had to talk, she had been sound asleep but she listened while I spilled my guts. Bless our friends; we are going to need them.
