Going Home, Make A Wish and The End of Chemo
When I was at CHLA for a chemotherapy treatment in April, we had a nurse come into the room and talk to us about the Make A Wish Foundation. The nurse told me that I could make any wish I wanted and this foundation would try and make my wish come true. I remember my mom and I discussing trips and things I could wish for.
The first thing on my mind was a trip to Neverland. Yes, Michael Jackson’s “magic ranch” where sick kids could come visit. I was a huge fan of his and had heard that some kids were able to go to Neverland and even meet Michael himself. Unfortunately, with a transplant on the books, a trip was out of the question at that time. I was devastated but had to come up with a Plan B. The only other thing I wanted at the time was my very own Apple computer.
The computers were finally becoming “small” enough that they could become household items where kids could type and play all kinds of games. I had been playing The Oregon Trail on my computers at school and was so excited at the thought of having my very own computer to use. We talked to the nurse and she said she would talk to the Foundation.
Life was drastically different by the time I arrived back in Las Vegas.
I had been gone only three months, but so much had happened in that short amount of time. My dad had moved us out of the condo that I loved and into an apartment across town. I came “home” to a new room, new neighborhood and no school. My friends were all finishing off the 4th grade class that I had started the previous year with them, and I would not be allowed to return until my chemotherapy was complete.
I tried to feel as “normal” as possible. I hung up all my favorite celebrity posters and filled my entire room with all my stuffed animals. My parents even got me a tiny kitten, that we named Rosie to keep me company. My family had always called me “Snow White” when I was younger because I loved all animals. I would have owned a zoo if I could have. I was so excited to get my new kitten friend and she sure loved me. Rosie slept on my pillow every night and would purr in my ear until I fell asleep.
One day we were all home and a huge package arrived at the apartment. My very own, brand new Apple computer! Make A Wish had heard of my wish and delivered it to our home. It arrived with a large computer desk, monitor, keyboard and my very own printer. The Oregon Trail and The Print Shop were the two programs that came with it and I jumped up and down. Very few people that I knew had computers in their home at the time and I was so excited that it was all mine. Looking back now, I laugh at my simplicity and would definitely have gone more extravagant. However, I will always be grateful for the Make A Wish Foundation for putting a huge smile on my face and giving me something to spend my time on while I was out of school. (I couldn’t find a picture of the computer in our apartment, but I found one years later in my first apartment with my husband in 2000. I had that computer and desk for years until I finally had to upgrade. I got years of use and love out of that gift.)
(Sad, but we don’t have a picture that I can find anywhere of it)
Over the next several months, we traveled back and forth from Las Vegas to LA for chemotherapy treatments. We also spent a lot of time admitted in the hospital in Las Vegas for fevers and infections. My mom had a small notebook where she kept notes on which treatments I received, what dosage, when, where and how I reacted to them. She also kept notes on my visits to the hospital.
The next several months pretty much looked like this……
May 1, Admitted to University Medical Center (UMC) in Las Vegas for fever and nosebleed. This visit was particularly uncomfortable. The pediatric floor was still not use to dealing with pediatric cases of Leukemia and didn’t know how to work with my Hickman catheter. After several nurses drawing blood from my arm and telling my mom that they had never seen my catheter before, she complained and the doctors moved me to the adult oncology floor. I stayed for a week to get rid of my infection and went home for a few days before heading back to LA.
We traveled to LA every month for outpatient chemotherapy, bone marrow aspirations, spinal taps and blood work. Almost every chemotherapy treatment resulted in vomitting every 15 minutes for 10-12 hours straight. My parents had to consistently watch my fevers and keep track of my moods and behaviors.
In June, I was admitted to the hospital on three separate occasions for fevers, and low blood counts. I had to have many blood and platelet transfusions and several doses of antibiotics. Over the course of the year, I lost several pounds and was typically very lethargic and had no appetite.
Chemotherapy treatments are not easy to describe. For at least the first day or two, the vomitting was so often and violent that I could barely leave the bathroom or the couch without a bucket in my hand. The drugs are meant to completely deplete your immune system and kills off almost every cell in your body. As a 10 year old girl, many times I felt like I was dying, and sometimes wished I could.
I was treated with aggressive chemotherapy on what they called the Denver Protocol for one year. On January 7th, 1989, I had my last dose of chemotherapy. That was also our last monthly trip to CHLA. I had one more surgery that month to finally have my Hickman catheter removed.
At the beginning of February, I was given the okay to go back to school. I attended Paul Culley Elementary in the 5th grade and met my favorite teacher of all time; Mr. Barnes.
Right around this time, my parents had purchased a new home on Coral Isle Drive. For my 11th birthday, my parents planned a big party at our new house. Friends and family came and gave my parents hugs and congratulations and our entire house was full of people who had been worried about my family and I for the last year. It was a celebration I will never forget, to this day my favorite birthday of all.
Oh the difference one year can make! As a nine year old little girl, I loved Santa Claus and playing with my stuffed animals and Barbie dolls. One year later, I was happy to be alive and grateful for every morning I was blessed enough to wake up. I was terrified of every sneeze and cough and hated going to the doctor. I lived in fear of the cancer coming back and had nightmares and triggers that would bring back memories of procedures and friends dying.
Fortunately for me, I was born with a pretty happy demeanor. I was a rambunctious child with a very loud personality. Very little could keep the smiles off my face or take the bounce from my step. At ten years old, Leukemia tried to break my body, but it never broke my spirit. I learned at a very early age that life can change in the blink of an eye, and everything you’ve ever known can disappear. I had to grow up overnight and learned to be present, love the Lord and trust that He had a plan for me.