Friday, Jan. 1999
It doesn’t stop raining. Gray sheets of vertical water. Through the spattered windows the wet pavement is a reflection of black clouds. I feel a kinship with the dark, solemn trunks and empty limbs of trees.
Nick’s right lung is full of fluid again. The vacuums can’t keep up. Another 560cc is manually removed. Another ultrasound shows the lung is crowding the heart. Nicholas will receive packed red cells (whole blood) because his red blood cell count is low. Wow, a blood transfusion. The crazy leukemia cells are multiplying faster than the red blood cells that carry oxygen. His little face is stark white against his dark hair.
I’m an idiot. I’m outside the hospital puffing on a cigarette while my kid is upstairs being treated for cancer. I’m sick thinking that I may have contributed to Nick’s illness having smoked for years inside the house, exposing my two boys to poisonous fumes before I got educated and quit smoking indoors.
I wash my hands, rinse out my mouth and pop in a mint before I enter the ward, but the smoke permeates my hair and clothes. He hates how I smell, — Mom, you stink!
There is a lumbar puncture (needle inserted into his back) scheduled to check for cancer in Nick’s spinal fluid – an area called the CNS or central nervous system. The idea makes me queasy. He wants to know if it will hurt. A nurse gently tells him:
–The doctor will give you something to make you sleepy so you will feel very little, and, sorry Nick, you can’t drink any more.
5 p.m. He’s back on the ward, thirsty and tired. Chemotherapy is started by 5:30 p.m.; today will be called Day 0. I’m having trouble understanding – he is desperately ill, but well enough for the killing chemical?
The hanging of the bags of chemo on the IV pole is intense. Nick’s induction into the world of cancer and chemotherapy. Two nurses with low voices, and understanding glances in our direction as we sit together with fear on our faces, check the bags and Nick’s identification twice. Holding hands, we watch while the IV pump is set at the proper rate and click, click the wheel begins to turn, advancing the drug down the tubing and into a vein.
–I just want to get better.
–It’s going to make you even more sick.Dr W tells him.
How sick? I feel the ever more familiar twist in my bowels, but I smile gently into his frightened face. We watch the bag dripping into the IV tubing and imagine a toxic tidal wave washing over his cells, killing everything. He’s been given a sword and now he fights, but it’s very heavy and burns his hand.
Our first visitor arrives, but we have never before met. She is the aunt of a friend from home and she brings Nick a card and books.
We get the results from the lumbar puncture – Nicholas’ spinal fluid is clear, no cancer there!
Saturday, Jan. 30
The room is warm and I think he is sleeping.
–Mom, for Halloween I want to be a cop and Sam (our older black lab) can be my cop dog.
–Great idea, Honey.
Imagine your healthy future!
A nurse brings him a phone. It’s Melanie B. from his class at school, and she tells him that many of the kids cried when they heard he had cancer.
Big smile. — Really? Cool!
The sheets are wet. His left lung tube is leaking. The nurses replace the soiled towels with dry. The right pleura-vac bubbles quietly and I watch the rose-colored liquid rise inside the chambers.
His Dad phones and I say to him:
–The staff tell me to warn you about the IV poles, the pumps and hoses from his lungs because it looks so weird and scary to see him this way. Talk to Frankie so he knows what to expect.
They are here, arrived at 8 PM. Nothing matters. His Dad and brother move slowly through the cords, tubes and equipment and gather up Nick into careful hugs, relieved to finally be here, both of them looking exhausted.
Tonight, Nick’s Dad will stay with the little man. Frankie and I will move into the Ronald McDonald House. My oldest son sits on a chair near the bed listening while his dad and little brother talk. He leans in closer and laughs when Nick answers his Dad’s questions about the plane ride here.
— Mom looked like she was going to throw up.
I have a normal thought when it occurs to me that neither child has any school work with them.
A few blocks from the hospital in an older and stately neighborhood, Frankie and I turn the corner onto a tree lined street and park in front of an impressive three level house. Lights shine from almost every window, sending a golden glow into the yard as we climb wide and shallow rock steps between sleeping gardens that promise great beauty in spring.
One grand double front door opens before we knock and we are welcomed inside as warmly as family visitors from out of town. This massive house used to be a single family home, and Frankie and I joke that we would need walkie talkies to keep in contact with one another in case we got lost.
The rooms are individually sponsored and decorated by the donations of various organizations. Ours is on the third floor with comfortable beds, two singles and one queen, made up with clean bright sheets and duvets – our new home. The dormer window looks over the damp street at the front of the house. Stretched out on the bed in the quiet of the room, with no noises of a children’s hospital around me, I pray for us.
February 1, 1999
X-rays of Nick’s lungs and heart show an improvement and the leaking left tube is removed while Nick is sedated. Nicholas has an excellent adventure when his heavy hospital bed is stuck in the elevator for 15 minutes. The door is open but the elevator is 12 inches below the floor level.
He hadn’t been moved to a stretcher for the excursion because it was better to keep him still. I think of a favorite Disney movie in which three orphans during a war meet a witch and with a magical bed knob are able to ride on a flying bed. Bed Knobs and Broomsticks – I wish Nick’s bed could fly him away.
–How are you today, Nick? A nurse asks.
–Good. How ’bout you? Hav’n a good day?
He’s got them all eating out of his hand. This one has put her chart down, and is sitting on the edge of his bed while he tells her about his cat “Richard”.
There was a strange orb in the sky sending warm yellow light through an opening in the clouds. Frankie and I had dry shoes after we walked from the House to the hospital. A teacher came by Nick’s room and surprised Frankie with some school work. She has plans for Nick when he feels better. I wanted to kiss her when she said that.
Nick has been taken off the oxygen!