In December 1982, when I was 15 months old, my mom noticed changes in my walking. I started leaning using walls and furniture to walk, and fell down a lot. Because it was December, my parents decided to keep an eye on me and see if it gets worse. It didn't, but it didn't get any better either. So when the time came for my fifteen month shots, my mom mentioned it to the nurse. This nurse wasn't too concerned, at first saying that all babies fall down a lot when they first learn to walk. My mom had already considered that (my maternal grandmother was a nurse) . But the nurse agreed to watch me walk across the room. Right away, she noticed that I hyperextended my left knee when I walked, and she thought I might have something wrong with my hips. She recommended that I be taken to a pediatrician for further evaluation.
After examining my eyes, this doctor expressed some concern that I might have a brain tumor. But after a CT scan on January 3rd 1983 showed nothing abnormal, he told my parents that he believed that I might have a viral infection of my cerebellum. He took some abdominal x-rays and the x-rays showed no calcium deposits. He then took a urine sample. After the urine test results came back abnormal, I was admitted to Children's Hospital in Seattle, WA on Tuesday, January 11, 1983, where they ran a 24-hr urine collection. Two days later, on my mom's 24th birthday, an ultrasound was done. A tumor was spotted on my right adrenal gland. I was diagnosed with neuroblastoma, and it was stage 4. There were cancer cells in my lymph nodes. My parents were told I had a 10-40% chance of living 5 years.
Surgery was scheduled on January 18th, but it had to be postphoned until the 24th because I came down with a bad cold. My surgeon spent hours slowly cutting away at the tumor that was attached to my right kidney, extended to my left kidney, and partially wrapped around my aorta. He removed as much of the tumor as he could.
4 days later, I started chemotherapy. Because the first doses of drugs were always so toxic, I had to have IV fluids for 24 hours so I would always spend the night (Monday nights) before in the hospital. The routine was always the same: Start the IVs, get medication for the nausea, start the chemo drugs thru the IV, spend the night vomiting until I finally fell asleep around dawn. For Tuesday thru Friday, I would receive a treatment of DTIC, cytoxin, and vincristine through the oncology clinic. After those 5 days of treatment, I would be given two weeks of rest before I would have to start it all over again: 5 days of treatment, two weeks of rest. A few times, I was given more than two weeks of rest, because my white cell blood counts or platelet counts were too low.
I soon began to lose my hair, something I was NOT very happy about, even at 1 year old! One of my mom's favorite stories to tell about me and chemotherapy is when she took me to McDonald's one time during treatment. I weighed only 19 pounds, and was only knee high, looked like a young baby, and with a bald head. I was a very talkative toddler, and really liked using big words (!!! early indication of my love for English class!). That day in McDonald's, two elderly ladies walked by our table, stopped and stared at me, totally astonished. They finally walked away, muttering, "Well, that's some baby!"
On February 24th, I was admitted to Children's Hospital again for a minor surgery to insert my Hickman line, which made it so the nurses didn't have to poke me every time they had to give me medication or draw blood. In early April 1983, I was again subjected to an ultrasound to see if the tumor had shrunk any. My doctors believed it had, by about 50%, but it was decided that I would start radiation the following Monday. My schedule for radiation was to last a minimum of 3 weeks, if it all went well. The first two weeks would be generalized radiation, and then the last week would be a lighter dose.
I was admitted to the University of Washington hospital for radiation Monday April 11, 1983. It had to be postponed because I fought the whole procedure and would not stay still. Finally, on April 13, they just about tied every inch of me down (can you imagine?) to get me to hold still. The next few days went easier with me crying less, though I still fought being tied down. I loved to say "All done!" and my own word for don't, which was "NON'T!" in my squeaky toddler voice.
Another story my mom loves to tell (and which embarrases me to death, but still) is one in which me and my mom are waiting to go into radiation, and a doctor in a white lab coat walked by, and saw me standing there wearing a bonnet. She squatted down before me and said, "What a cute bonnet you have there!" At this point, I was so very sick of people in white lab coats and so I reached out and slapped the lady's cheek. My mom was so embarrassed, and tried to explain to the doctor that I had been through a lot lately.
On May 3, I had my last day of radiation, because my doctors felt that if I had any more, it could retard my growth. Throughout April and May, I continued my chemotherapy treatment, with my usual routines, although sometimes it was altered by me sometimes just being given platelets and then being sent home. On June 20th, I was admitted for a second "looksee" surgery. The surgery's purpose was to get another look at the tumor and its size. Half of what was left was removed, and the doctors thought it could be benign, which was excellent news. All seemed to be going well, and the surgery was thought to be a success.
Unfortunately, on the evening of June 28th, I was taken to the emergency room because my stomach was swollen and tight. Blood was drawn, and my blood counts were good, but my potassium was low. X-rays showed fluid around my bowel, and they initially just thought it was a lot of gas (sorry!) and I was admitted to the hospital and given potassium. I was released from the hospital, only to be readmitted weeks later as my stomach just kept getting larger. My clothes were too tight, and my stomach hard and rigid. They drained all of the fluid out of my stomach, only to have it fill back up again. My doctors thought that I might have another tumor in my chest, which would cause a blockage in the lymphatic system. But an ultrasound showed no sign of a second tumor, and finally, my surgeon thought the fluid in my bowel was caused by my second surgery, and he was right. During the surgery, my bowel had accidentally gotten nicked, which caused the fluid to fill my stomach.
So, on July 19th, even though I only weighed 19 pounds, I was put on a low-fat diet for nutrition and weight issues to solve the fluid problem. My parents had to learn how to feed me through IVs, and soon I was able to be fed at home. My body eventually absorbed the fluid, and the nick healed after a few months.
December of '83 came with many blood counts and many delays in my chemo treatments. On the 15th, I was admitted with ear infections in both ears, and several blood tests were done, which each my blood count getting worse and worse until it was even worse than when I was first diagnosed. With Christmas coming, all my parents wanted for me was to be able to take a break from the hospital and be home for Christmas. Reluctantly, the hospital let me out on a pass, with a promise from my parents that everyone would wear surgical masks around me.
Delays, fevers, and several blood transfusions filled the months of January, February, March, and April of 1984. In May, I was admitted to the hospital with a very high fever and ear infections. The doctors said that I had viral encephalitis.
For 2 weeks after this diagnosis, I was in a coma-like state, where I wasn't really awake, though I would have moments where I would wake up and just cry. As my parents watched, my right hand - the one I used the most, started to curl into my wrist, and eventually, it became so tight against my body that my parents practically needed a crowbar to dress me (really).
As I started to become more alert and awake, my parents noticed I was no longer talking. I did show I understood what other people were saying around me by nodding my head yes or shaking it for no. I lost the ability to walk, sit on my own without support, or even hold my own head up. When I was asked if I wanted to be picked up or held, I would always shake my head no. The prospect of being picked up when I couldn't support my head was frightening to me.
The doctors told my parents that whatever I did not get back in 6 months, I would never get back. HAHA, yeah, right. A couple months after the viral encephalitis, my brother Ryan was born, and when the 6 month mark came and went, I was barely able to sit up by myself if I was surrounded by pillows. But still, I was alert and smart, and had my own way of doing things. When Ryan began to crawl, I began to drag myself across the carpet on my belly, eventually working up my strength to be able to crawl on my hands and knees. And when Ryan learned to walked, I would crawl over to furniture and walls and pull myself up with my arms, and I took my second first steps! At 3 years old and still only weighing 19 pounds, I started physical therapy. When I was four years old, I got my first walker. When I was 5 and a half, my mom finally discovered I had hearing loss. She first noticed that I didn't seem to hear people when I wasn't able to see their faces, and told my school her concerns. They tested me and said I could hear fine, and that I was just "mother-deaf." LOL! If only. My mother didn't believe them and took me to an audiologist, who confirmed I did indeed have a hearing loss. I got hearing aids (though they do not completely correct my hearing), and I still am a pro at reading lips. I never liked cartoons (though I LOVED Disney movies - don't know why they were different), got extremely bored watching Sesame Street, BUT I absolutely loved Mr. Rogers!
The radiation treatments that I received back then destroyed some cells in my spine, and as I grew, I developed severe scoliosis, I have had 3 partial spinal fusions, and finally, at the beginning of summer 2010, I had a full spinal fusion, and spent the rest of the summer recuperating from it. My parents also had to build me an extension on the main floor of our house because I cannot go up and down the stairs anymore (I've fallen down them a few times, and if I do it again with the full spinal fusion I would severely injure myself, if I didn't die first).
My mom says I have a "can-do-get-out-of-my-way" attitude about life, and I don't think she is wrong at all. I hate it when people tell me I can't do something and I usually set out to prove them wrong.
I do not want any other child to experience what I did growing up, and I was completely and utterly SHOCKED and SPEECHLESS when I discovered in early 2011 that NOTHING related to how they treat childhood cancer has changed basically since I had it, which means that what happened to me can still happen to other children. And I do not want that. I've been advocating ever since. It has never been very far away though. My whole life up til now, I have been searching, and asking God "why?" and I think I am finally on the right path.