I want to tell you about my experiences as I remember them as a child going through childhood leukemia in the late 70s. I am quite ill today but it has nothing to do with the leukemia that I faced as a child…that is for another blog.
Let’s start the Spring before diagnosis…I fell and hurt my wrist badly but not braking or spraining as the doctors determined. But the pain would not go away. It was so painful that I could not move it at times. The doctors more or less said that it was in my head and my parents were so young that they just didn’t know what to do. Finally, after I would not quit complaining our pediatrician sent us to a bone specialist. The specialist knew right away what the problem was and the pediatrician suspected something else. Hence, I was sent to Children’s Hospital in Omaha, NE.
A few days later after numerous blood tests and a bone marrow test on June 26, 1978, I was diagnosed with ALL leukemia. I was 7 years old. Back then, Leukemia was considered cancer and things were so different than now. My odds of making it through the next 3 years of treatment was 1 in 3, the odds of making it to 20, or even 30 years old were very slim. I am over 40 now, and been married 19 years.
But I had no idea what was going on except I was getting all kinds of needles put in me (this was before ports), put in a private room and told that I needed to stay there. At night I was alone, but my parents were there during the day (my dad had to go to work but we lived in the same city as the hospital). With a cast on one arm and IV in the other, I played with my stuffed animals a lot. Especially, I remember this big teddy bear my parents’ friend had brought me. I called him Teddy.
Just like today, nothing kept me down for long. I learned to write with my right casted hand. Lots of people came to visit and everyone seemed so serious, but I just liked the visitors. I guess what was happening was that I was getting chemo and drugs in the hospital. One drug made me especially hungry for shrimp!! I am not kidding. I remeber this!! So for almost 10 days I asked for shrimp. They said the hospital couldn’t get that for me. More blood tests and 2 weeks from when I was admitted. It was 4th of July. The hospital said they got some shrimp for me AND my doctor said I could go home early!! So I had shrimp for lunch and my parents got me Long John Silver’s shrimp for dinner!!
I felt so lucky!! One thing I should mention is that we did not have much money. My dad had to go to work every day and my mom worked at a candy store at night some times. But I never noticed it because we always had everything we needed and wanted for the most part.
After I got home, we had to go to the “big” hospital every other day for radiation. They would draw with a marker on my head each time so they knew where to shoot the radiation. And I went in 3 times a week for chemo (each time an IV was put in). After a few months of this, which seemed like an eternity to me, they did another BMA(bone marrow aspiration). This time as I was not in the hospital, and no drugs at all except the numbing on the surface, I felt what digging into the bone felt like. Not my favorite experience. But the results were good so I didn’t need another until January (this was July.) Plus, I went to twice a week with the chemo.
During these first few months, I also remember spinal taps. Where they drained my spinal fluid and put medicine in my spine then I laid upside down for a half hour trying to get the medicine to my brain. This was terribly uncomfortable, but my parents were great and played games with me to try to keep my mind off of the pain.
This might be a good time to mention the wonderful care that I received at Children’s Hospital. My doctor was so caring and the nurses so gentle. Most of my summer was spent in clinic(which was where the cancer patients went to be treated). I remember that being a fun experience not so much a terrible time.
My parents were so wise in trying to make my life as normal as possible. They went to talk to the school and teachers. Then I entered 3rd grade like a normal kid that fall except I had cancer and had no hair so I wore a wig.
I remember being tired a lot and even fell asleep on my teacher’s couch. Gym or PE was tough. I was still getting chemo every week and pills at home everyday and even at school. But the teachers and principals were also kind to me. The students were not. Many called me names, thought it was contagious, and even pulled my wig off. This was in the 70s so “leukemia” was not as heard of as it is today. But this kind of treatment was pretty traumatic for me.
This might me a good lesson til the next part.
Unkind words and actions are remembered more than kind ones. SO let’s make our kind words and actions stick out in a person’s mind and maybe be more careful about unkind ones.