Life in a “Bubble Room”, Part 1
After receiving the first dose of chemotherapy, the doctors talked to us about the rest of my treatment plan. With any kind of Cancer, the doctors will place the patient on a specific protocol of chemotherapy, or radiation, or both. These protocols are meant to be specific to the types of Cancer that the patient is dealing with, since it would be impossible to treat them all the same. My protocol would be very strong in the beginning to try and start remission, and would most likely last a year or more.
The AML caused my blood cell counts to be scary low, so the doctors wanted to place me in a protective, sterilized environment where I could stay as far away from infection as possible. Children’s Hospital of Los Angeles (CHLA) had a wing in the back of their pediatric oncology floor that they called the Laminar Airflow Unit. This would become my home for as long as needed.
I very clearly remember the day, January 19th, 1988 that we moved in to my new “home”. By most standards, the room looked mostly like a lot of the other rooms in the hospital. Same fluorescent lights on the ceiling, same cream, shiny tiles on the floor. The bed was the same as the other I had just down the hall. This room had a large window in the back that brought in some light from the back side of the hospital. There was also a small sink and mirror in the corner, next to a large cabinet standing against the wall. There was a small whiteboard on the back wall near the window and a stainless steel shelf that sat empty for now.
One of the first things that caught my eye was the makeshift toilet sitting against the wall next to the bed. It looked more like a chair with a toilet seat on it and a yellow bag attached underneath the seat. There was no room to go into, or curtain to sit behind. I realized immediately that this room was wide open with no space for privacy at all.
The most distinct difference with this room, compared to the one I had just left down the hall, was the front wall. There was no wall. Instead, in it’s place a transparent curtain hung from the ceiling to the floor. In the middle of this curtain was a hard plastic shell in the shape of an oval that rounded out into the room. On either side of the shell were two armholes with white plastic gloves attached to the ends. It all looked so foreign to me and I had no idea what it was all for.
The small opening where the door would be was blocked off on the floor by a few large pieces of green tape. The tape made a square on the floor and I was told that I was not allowed to step past this tape at all.
The nurses were very thorough before I was allowed to step into the room for the first time. I was stripped down and washed off inside the small green square. The nurse that was cleaning me was already inside the room and was dressed in what I could only describe as a spacesuit. Anyone that grew up in the 1980s had most likely seen the movie ET. I happened to love that movie. When I saw the nurse, my first thought was that she was dressed like the men that were trying to take ET away from Elliot.
Her body was covered from head to toe in a white, chalky suit, blue head cap, gloves covering her hands and white mask over the front of her face. The only thing that made this nurse even resemble a human, was the fact that her eyes were still visible.
She continued to wash me down and make sure that I was as clean as I could get, and then dressed me in a green hospital gown that was laying on the bed. I was given strict instructions not to leave the green tape. I was then told that all my clothes and toys that I wanted to have in the room had to be washed and sterilized in a large machine in the hospital in order for it to be safe for me to have. She handed me a few packages of things they had already had sterilized.
The packages were white envelopes with a clear airtight plastic over the top. Only myself or someone dressed to be in the room could open the packages inside the room. I remember waiting every day for a new package to arrive to open. It was the most exciting part of most of my days.
Over the next days and weeks, the routine of people getting dressed to come into the room became the new normal. If anyone, including family, doctors and nurses wanted to come into the room with me, they had to take a good 15 minutes to get properly dressed first. Sometimes I was allowed to help a little. The gloves and mask were sealed inside the same “packages” as my belongings and could only be opened once the person was fully dressed and inside the room. If any step was skipped or not right, they were not allowed to enter.
The hardest part of staying in a hospital in another state than you actually live, is that the family was always separated. My dad had to stay in Las Vegas to continue working and he kept my younger brother, Aaron with him so that it was easier for my mom to focus on me and my treatments. He came down every weekend he had a chance and brought Aaron with him. My mother’s parents, my Grammy and Papa, stayed with her through most of the stay in Laminar. They all lived a couple blocks away at the Ronald McDonald House.
Every once in a while when Aaron came for a visit, he would “suit up” and come in the room to play with me. I cherished those brief moments and tried to make them last as long as I could. Sometimes I would get dressed up too so that we could be silly and take pictures. The biggest problem with the suits is that they had no room to breathe. They got very hot, very fast. As you can imagine, Aaron didn’t last very long. He tried, but even I couldn’t stand keeping that suit on for long without sweating a good amount underneath.
My days consisted of exercise on the stationary bike, sponge baths in the makeshift tub and lots and lots of sitting. I did have a television that I could watch, and my favorite male nurse, Rob, would come in most days to lay next to me and catch up on the latest episode of Days of Our Lives. There wasn’t much on daytime television that was more appropriate for a 9 year old girl, so I watched what I could.
I had a strict regimen of pills and medicines that I had to take around the clock. The nurses were there to make sure that I always stuck to my schedule.
I had a little finger brush to use for brushing my teeth. It didn’t work well, but kept my gums from bleeding too much without having very many platelets in my system. I was not allowed to have anything sharp or pointy in my room for fear of getting hurt.
The days were long and the nights were lonely. Once my mom and grandparents left to go sleep at the Ronald McDonald House, I was left with my empty room and the night nurses, who rarely came inside the room. They wanted to disturb me as little as possible so that I might get some sleep and rest.
I remember most nights lying in bed holding my favorite stuffed animal, Boone, the Furskin as close as possible and staring at the others on the shelf. I would say prayers almost nightly that God would allow my stuffed animals to come to life so that they could play with me and keep me company. I cried for hours, believing that if I wished and prayed hard enough, it just might happen. The spirit of an imaginative little girl is a hard thing to break.
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