Note: this entry was originally posted in January. I am reposting parts 1-3 since so much time has passed between those entries and part 4, which I will post tomorrow.
Part 3: I Dream of Oranges
It’s funny, but the time between the baby showers in February and Alexis’s fourth birthday in July just seemed to pass so quickly. In June, we had Caitlin’s three month portrait made. She was wearing a tiny rosebud print dress with pink trim on the sleeves and neckline. I remember that the sleeves were just a bit tight on her chubby arms. She had this extra crease in her arms like a lot of chubby babies do. I used to love to play with that crease in her arms.
On July 7, we had Alexis’s birthday party. I remember it was the birthday of Barbies. She had asked for several Barbie items, and the family pitched in and bought them. I remember taking one picture of the Ken doll sitting in a lawn chair, flying a kite. I told Alexis that Ken needed to go find a job and stop relying on Barbie to support him. Then we all started putting Ken in these ridiculous poses and taking pictures of him. It was pretty hilarious. Caitlin was sitting in her little blue chair on the floor, taking all of this in: the bright color of the balloons, the noise, the packages. I took a picture of her sitting in her chair. Everything seemed so utterly normal.
Pat and Winn weren’t at that party. I really don’t remember why. We didn’t see a lot of them that summer. Or maybe we did. A lot of that summer has become a blank to me. The last invitation I remember that summer were friends of Paul’s inviting us to go sailing, but we had to turn them down because Caitlin had some kind of virus and was throwing up. She was throwing up so much that we ended up taking her to the emergency room on Saturday. We saw a resident. He said that it was a virus and gave us pedialyte and sent us home.
On Monday, August 23, I was to begin my new job teaching English at Old Dominion University. It was a pretty exciting time for all of us. We had our two little girls. I had the job of my dreams. Paul was doing well at his job at the medical school. It seemed that life our lives were charmed.
That Tuesday was when our lives began to disintegrate, and they never recovered. When I went back to work, my mom and Paul’s mom were going to share in the responsibility of watching the girls. I was in my first faculty meeting when I was called out for a phone call from my mother. I was really perturbed that she would call me at work. I picked up the phone and it was the pediatrician’s office, one of the nurses who I knew very well. She was speaking calmly, too calmly. She said that she was going to put my mother on the phone.
I remember driving to the Children’s Hospital of the King’s Daughters, which was just down the road. I remember meeting Paul; the medical school was across the street from the hospital. I remember a CT scan showed blockage. I remember falling down a wall. I remember calling Kathleen in northern Virginia at work and saying the words, “Caitlin has a brain tumor.”
An operation to remove the tumor. Seven hours long. Pat was there with fresh oranges, talking to me. The tumor was the size of a small orange. Later, I would write a poem comparing the ependymoma to an orange. I remember nothing Pat said to me. Too many people were there. One of the women from the medical school gave me a rosary; it was red, like garnets. I just remember noise. I just remember wanting all of them to go away.
After recovery in the PICU, Caitlin was sent to the Progressive Care Unit. After a few days, she had another operation to install tubing which was going to be used for her medicines: chemotherapy, whatever she needed.
I was trained on how to flush and clean the lines because Caitlin was going to be allowed to go home. The plan was that she would come in for overnight stays when she needed chemo. We were going home on Labor Day weekend. In the meantime, ODU had given me the option of giving up my classes for the semester or taking a reduced load. I took a reduced load down to two classes. I was actually still hopeful that everything was going to be all right. After all, Pat had survived.
Caitlin stayed home for six days. I came home from school to find my mother completely distraught. The back of Caitlin’s head, which had been shaved for the operation, was swollen, the incision puffy. I called the neurologist, and he said to take her to the ER at the hospital. She was readmitted to the PCU with a staff infection, that dreaded infection that hospitals give their patients, one of the oxymorons of a sterile environment. The neurologists had to drain the fluid from the incision every morning.
They put Caitlin in one of the two private rooms in the unit, which had a pull-out bed because the nurses knew that I would be sleeping at the hospital whether or not I had a bed. I began to bring in personal things: a teddy bear, dresses. I didn’t want her to wear a hospital gown. The nurses, who already knew me from our previous stay, indulged my every whim.
Each morning, I gave Caitlin a bath, and I put her in one of the beautiful dresses that Pat had given us. I fixed her hair, at least, the hair that she still had. We took pictures of her. From the front, you couldn’t tell that they had shaved her hair in the back. She still looked beautiful with all of that dark hair. Each day a different dress, a different bow. I brought in more and more personal items. I turned the sterile hospital room into her bedroom. No one stopped me. The hospital closet held so many dresses, her red dress, green dress, blue dress. I brought in her booties and lace socks.
After her first round of chemo, everything changed. Her body became so weak, and she threw up repeatedly, non-stop. The nurses paged the neurologists. One of the younger men in the group showed up and said within range of my hearing, “She’s throwing up. That’s what they do when they have chemo. I don’t know what you expect me to do.” The next day I changed her primary care from the neurologists to the oncologists and had a note put in her chart that that particular doctor was never to touch Caitlin again. The oncologists gave Caitlin something for her vomiting and took blood samples every few hours to check her white cell count, which wasn’t good.
Her main oncologist, who happened to be a friend of mine, called me from out of town to give me the bad news. He told me that he had never seen a count that low from a chemo treatment. They were going to suspend her chemo for now and rethink how to treat her cancer.
That night, her monitor alarms kept going off. I had a new nurse who did not know Caitlin’s case. She would come in, look at the machine, and look at Caitlin, and say, “Well, she’s breathing just fine. I don’t know why the monitor is going off. There must be something wrong with the machine.” I asked her if she was sure. She looked at me as if I were just one of those pesky mothers. The other nurses had already learned to take my questions seriously as by then I knew how to reset all of the monitors, knew how to read results, and knew my daughter’s body signs instinctively.
In the morning, I gave Caitlin her bath, and I was rocking her when I happened to notice that her nails were blue. I knew that meant that she wasn’t getting enough oxygen. I had another new nurse, and she was nowhere to be found. I waited another half an hour. I had asked for a chest x-ray the day before, but no one had followed through, and between all of the chaos, I had forgotten about it. Now, I was kicking myself for not being more assertive.
I went out to the nurse’s station. They took one look at me and asked me what was wrong. I told them that Caitlin’s nails were blue. Within two minutes respiratory therapy was in the room and so was a portable x-ray machine. Caitlin had pneumonia, pneumocystic to be precise. The kind of pneumonia that AIDS patients get because their immune systems are so depressed.
One of the nurses who knew me the best told me and asked me about the pneumonia, and asked me to pack up all of Caitlin’s belongings. They were transferring Caitlin to PICU. I called Paul at the medical school. He and a friend packed up all of her things and met me in the waiting room for PICU. We couldn’t go in right away. When we were allowed in, Caitlin was in a hospital gown, and she was on a respirator.
There would be no more dresses.
end of part 3
3 thoughts on “Lives in Pieces: Vale et memini (Goodbye and I Remember)”
The writing is great. You have a talent for being able to draw the reader into your world and leave them wanting more.
You got to my emotions, created a reaction and left me anxious for more( as voyeuristic as that may seem on my part, wanting to read more about this tragic and very personal chapter in your life).
I am sitting here with tears streaming down my face. I cannot even begin to imagine what you and Paul were going through as you watched Caitlin go from a beautiful, healthy child, to being so very ill.Seeing her go through what no child should ever have to go through and then some.
I admire your inner strength, courage and determination to ensure Caitlin received the very best of care from the medical staff, when inside your heart must have been breaking into pieces as you watched her deteriorate before your eyes, knowing that you could not make it better for her, the way mums usually can.
I haven’t even gotten to the worst parts yet. That’s why I’m kind of spacing them out.
How’s the writing? Are they all right?