Just days before Christmas in 1989 it came back. It came back in the same place, the same way and at the same time of the year. The cancer I’d fought and licked for seven years came back. I was devastated and so was my family. I knew the routine. Surgery was the first step. My family was waiting for me in the corridor as I went into surgery, something came over me and I took advantage of the hospital gown and “mooned them” saying? “Just a walk in the park, guys…a walk in the park.”
And it was, relatively speaking. My second brain tumor operation and my sixth surgery as a result weren’t too bad. The radiation is more specific now, so I haven’t lost all my hair, but I’m older and maybe I can handle it easier. I recovered quickly enough to take those final exams at Bishop Miege and graduate with my class from high school…but wait, I’m getting ahead of myself. Let me go back to B.C. – before cancer and catch you up on my story. The park I’ve gotten through is something else!
B.C…..(before cancer) What a Life !
I wasn’t the best, but I was real close. I had it all! Good grades, good friends, good family and soccer, basketball, football and baseball to keep me busy. I felt unbeatable! I wanted to kill the evils of the world and make a name for myself. Awards and honors came easy for me and I tried to do my best.
I had a ton of friends – so many I never worried about it. Everybody always came to my house because they liked my parents. My Dad knows how to make everybody feel comfortable, including “kids,” and my Mom was like a second mother to everybody – she always cared and looked after everybody. No wonder they all wanted to hang out at my house…they were well-fed and well-loved. I loved my life!
I have lots of family. My two sisters, Emily and Ellen, and my Mom and Dad and I have always had a great time together. Actually, that’s all that’s important is to be together, and we were, on trip, at home and just about anywhere. My Mom has six brothers and sisters and Dad has two brothers and they all live around here. Everywhere I go, someone knows one of my relatives. My Dad’s father died when I was about five, but my Dad’s mother and her sister live close by. I have fun going to lunch or the races with “the ladies,” that’s what I call my Grandma Druten and her sister Adeline.
My Mom’s parents are looking for a house closer to us because all their kids and grandchildren are in the area. You see, that’s great, because we all have so much fun together. There’s always a birthday, so there’s always a party to go to! I love them all and they’ve always shown me great compassion and love in return.
I was at basketball practice when I tried for a three-pointer and saw two goals. I was seeing double and my head started to hurt. I went home and slept for 32 hours. We went to an ophthalmologist the next day and he knew immediately something was wrong when he examined my eyes. The next test, a C.T. Scan, showed a tumor on my brainstem, and the doctors were not too optimistic about my chances for recovery.
THE FIRST BLAST
I was in the hospital for Christmas. My first surgery was December 22, 1982. It took about four hours to remove the tumor and then more than three days to recover in Intensive Care. I stayed in the hospital about two weeks, then got out just in time to start radiation treatments.
I was ten and a half years old. I was just a kid and I didn’t know what I was getting into. Surgery was nothing compared to the first blast.
I call it that because the first time I had radiation, they wanted to make sure the cancer would not spread, so they irradiated my whole head. Each session lasted over an hour. I was always awake because the machines were so loud. I had to lie face down with my head in this box. Thirty blasts in six weeks. That’s one every day except Saturday and Sunday (they gave me the weekends off). But that was the easy part.
After treatments, I’d come home and be sick for four hours. I was really sick. I’d upchuck until there was nothing left. Nothing tasted good anyway, and I got really skinny.
As an extra precaution, they irradiated my whole spine and that’s what caused the stomach problems. The radiation worked its way down to my stomach and I was really uncomfortable for six months.
Then an infection put me back in the hospital. It didn’t show up immediately after the surgery because the radiation kept it under control. The infection was right where the surgery had been done and this time the doctors were scared. The infection had penetrated into my brain and it was hard to get rid of. After another surgery to scrape the infection out of my brain, they put a Hickman catheter in my chest that dripped antibiotics. You could almost see right through me, except for the tube in my chest. That was my Easter, 1983.
The headaches started after that. Sometimes it hurt so bad that I couldn’t open my eyes. The doctors wanted me in the hospital again to find out what was going on. I had another C.T. Scan (I’ve had at least one hundred of those) and they discovered I was developing hydrocephalus. That means too much spinal fluid on the brain with no where for it to go.
Surgery number three was the most painful. They put a shunt in my brain to drain the fluid and threaded the tube inside down behind my ear, down my neck, across my chest and into the peritoneal cavity (the lining of my stomach). I was really hurting. So much so that they gave me morphine shots right in the butt. I couldn’t decide which was worse, the shots or the headaches.
But there were some advantages to being in the hospital:
- I happen to look great in hospital pajamas
- I had unlimited ice cream and popsicles
- Lots of visitors came to see me
- I became a whiz at every imaginable card game (I could beat my Grandfather at Gin Rummy sometimes!)
- I read a lot of good books. I love to read.
So my fifth grade year was a real surprise. To get through the spring semester, we hired a tutor and sometimes I even made it to school. My mom would carry me and put me in my chair and I could listen for an hour or two. I remember the first time I went back to school. The teacher knew I was coming, but didn’t tell anybody else. When my Mom carried me in, all the kids stood up and clapped. Boy, that really felt good! My Mom cried. Everybody was happy to see me and asked to see my scar. All the boys thought it was really cool, but I don’t think the girls were too impressed!
It took six months to get over the six weeks of radiation but by my 11th birthday, things were looking up. It was summer and we went swimming a lot and I was feeling pretty good. My Dad started getting me on a workout schedule to get my body back in shape and things started looking better. We were planning a vacation in Florida, right on the beach and I couldn’t wait. Right before we got on the plane, I had another C.T. Scan and the doctors told my parents that the cancer had come back. I didn’t know any of this, but I do remember a quick flight to St. Louis for an MRI (it’s a test much more advanced than a C.T. Scan and there were no machines in Kansas City at the time). I thought I was just going along for the ride. We did finally get to Florida and I got better!
The doctors had mistaken some healthy cells, distorted by radiation, for cancer cells. What they thought was more cancer was not. I was O.K. and my appetite was coming back…especially for chocolate!
After I got back to school that fall, I also started my chemotherapy treatments. They weren’t too bad. I’d start the shots and pills and feel bad for about four days. I’d feel pretty good for about a week and then I got really tired and couldn’t do much. I had to stay away from everyone then so I wouldn’t catch some germ. As soon as I started feeling better, the whole cycle would start again. I did this for about six months until they had to stop because it (the chemo) was damaging my liver. Anyway, my hair fell out again, for the second time, just when it had grown back in from all that radiation.
I didn’t have cancer any more, but the cure had taken a lot out of me. Here’s a laundry list:
- the radiation burned a hole in my cochlea so my hearing isn’t so good.
- the radiation knocked out my endocrine system so I stopped growing, stopped producing testosterone and have little or no adrenalin.
- radiation blasted my olfactory nerves so I don’t have much of a sense of smell
- the radiation attacked the tumor on my brain stem and my coordination and balance will never be the same
Sounds bad, but it isn’t that bad. I’ve got hearing aids that work pretty well. If I don’t want to listen to someone like a teacher or a parent wanting me to do something, I just turn them off. It works pretty good.
I was one of the first people in Kansas City to use the synthetic growth hormone and it worked – I’ve grown 14 inches! I was four feet eight inches tall and now I’m five feet ten inches (well, maybe five feet nine!). I take one huge shot of testosterone each month and it does all sorts of things to my body!
So, I can’t smell so good . Sometimes there are odors that you would be better off just not smelling!
I know I’m not the most coordinated person and I miss playing soccer and basketball, but my Dad told me that I probably wouldn’t have ever been a professional basketball player anyway, so why worry about that?!
I can live with all of that, but I guess the hardest to take is my I.Q. Before all of this it was pretty high and school was a breeze. Now it’s dropped a bit and I have a much tougher time with studying. That makes me mad!
THE FIRST DANCE
I started 6th grade going part time to school, but I had to make all the Student Council meetings. I was elected President! It was a fun year, but a little tough. At recess when we played soccer, baseball or basketball, I’d try, but I couldn’t do what I used to be able to do. That’s also when I started the chemotherapy. But everybody was glad I was back and I was glad to be alive.
The kids started feeling comfortable enough to joke about my condition. Every year the 6th grade raises money so they can go to Wildwood. Wildwood is a camp in LaCygne, Kansas, where you learn teamwork, survival tactics and have a lot of fun doing it. “Don’t put Eric on our team!” they teased, “he can’t even see straight!” (I was started to have more double-vision at the time.) I got them back though. There was a drill that needed a feisty, little fellow to go first over a high barricade and then leverage everybody else over the top. Guess who that person was? And another thing. Wildwood was where I had my first dance with Poppy Cooper. I was having the time of my life when a teacher cut in and pointed to my Mom and Dad on the sidelines. They whisked me away for another blood test.
I’d had one just before I left for Wildwood and when the doctor saw the results he insisted that I come in right away. Something was awfully wrong! It was all for nothing, though. The test was bad and I was clear…but, darn it!…I missed the rest of the day at Wildwood and that last dance with Polly.
When summer started, something was going on. I was not quite right. My Mom knew it, but the doctors couldn’t find anything wrong. I was good for about two hours in the morning and then it was downhill after that when I had no energy at all and didn’t even know what was going on about me. My Dad started coming home in the middle of the afternoon to take me swimming. The cold water seemed to perk me up a little.
My Mom took me to see three doctors in one day, pleading with each one to find out what was going on. The oncology doctor said it just might be my “cortisol” level. My endocrine system had been knocked out by radiation and I needed some outside help. That’s when I started taking steroids and I’ll be on them the rest of my life…Now hold on! I’m not taking what the bodybuilders take, believe me. What I take just gives my energy level a fighting chance.
I needed that fighting chance to face middle school. What a difference a year makes. School was hard, but the kids were harder. They had all grown a foot over the summer. The steroids I’d been taking had made me pudgy (the dosage was too high and I am taking less now) and I hadn’t grown an inch.
The kids didn’t know what to do with me and I didn’t know what to do with myself. I was still throwing up every morning and getting to school was tough. I made up hundreds of excuses to leave school. My grades dropped to C’s and D’s which was nothing like the A’s and B’s I used to get.
Boys and girls were getting together for parties and I wasn’t invited. I think that kids that age are having a very difficult time trying to figure out themselves, let alone someone who has been going through something that is so foreign and frightening to them. But I didn’t care much anyway. My hearing was starting to go, so even if somebody wanted to talk to me, I couldn’t hear them anyway.
That year, 7th grade, was the pits. I felt little, alone and out of place. The best time of that year was after school was out in the summer when my whole family took a trip to Europe. We had a house for a week in the countryside in England and it was great. Fabulous food, beautiful flowers, exciting sight-seeing, and an absolutely great time with my whole family. We spent a fast-paced week in Paris, too. I loved that trip.
Even though I faced the same problems in 8th grade that I had in 7th, I had new recruits to help me out. My sister, Emily, was in the 7th grade and so was my friend, Mark Zukaitis. They both kept me up on everything. Emily made sure I looked as good as possible and that I knew what was going on. Her friends were my friends, I felt more a part of things. She always looked after me, though. And Mark was just the friend that he had always been. They both help out a lot.
I decided to go to Bishop Miege High School. It is a Catholic high school much smaller than Shawnee Mission East and it meant a sort of starting over for me. New friends, new situation, a fresh start.
Bishop Miege was not only a different school, but I was changed, too. I had grown some on the growth hormone and the hydrocortisone level had been adjusted so I felt better and wasn’t so pudgy and puffy.
The big change, however, was in the attitude of the people. The kids and teachers made real attempts to get to know me and not some “kid who has cancer.” I made lots of friends.
I felt good, too. I was still throwing up every morning (my mother wanted to build a special tiled room with a drain in the middle just for me!) but I made it to school by second hour everyday. Third hour I had study hall and then one at the end of the day for seventh hour. It was a full day for me and I was glad to be going. I liked school, I think, as much as anybody liked school that year and I had a good time!
I just can’t say enough about the teachers and staff at Bishop Miege High School. Mrs. Ulses, my “mother away from home” was always there with a hug and a word of encouragement. Mrs. Manning (the school nurse) helped me stay on track. She was always talking about my eating habits and trying to get me to gain weight. I spent a lot of time in that room with her, talking about everything. We became best of friends. I saw a lot of Mrs. Foley, we joked back and forth all the time. Those three made it possible for me to make it every day and they got me through the rough times.
There were so many special teachers who took extra time with me. Mrs. Lazzo and I became really good friends. After I graduated, she even asked me to come back and talk to her classes. I really enjoyed doing that. I can’t possibly list all of the teachers who took extra time with me or just took extra minutes to talk or listen to a good joke. If you’ve got to recover and jump some hurdles, try Bishop Miege because they know how to treat you.
I was feeling pretty good. I was finally growing and I had all my hair. People liked me for myself and that was the best feeling.
That summer didn’t turn out like I had hoped it would. My birthday is in June and instead of celebrating, I ended up in the hospital again. I had started having lots of really bad headaches and a high fever. I couldn’t move my head at all without a lot of pain and I became disoriented. I had encephalitis, an inflammation of the lining of the brain, and I ended back in Intensive Care for ten days. While I was there, my cousin Allison was born right on my birthday, and I didn’t even know it. Instead of having cake and ice cream, I had to lie on an ice mattress and be hooked up again to all sorts of tubes.
My parents knew I was feeling better when they heard from the nurse that I had asked for some food. After she brought me a tray and I had tried some of it, I then asked if she could bring me some “real” food! I guess I really gave the nurses a time of it. But what else are you to do while you’re in the hospital. You have to tease them and get them on your side, because they have to do some pretty embarrassing things to you!
HOLE IN THE WALL GANG CAMP
Toward the end of my sophomore year, I heard about a camp called “Hole in the Wall Gang Camp” in Connecticut. Paul Newman started it from all the money he made on his popcorn and salad dressing. It was designed especially for people like me and I wanted to try it out. I went that first summer it was opened and stayed a whole session – 10 days.
They had everything….a wood shop, an art place, a theatre, basketball court, tennis facilities, kickball, pool tables, ping pong tables and a swimming pool If you wanted to be a polar bear, you could get up and swim at 7:00 a.m. in the icy water. I never did that, but I did make it to breakfast by eight o’clock every morning. I loved the wood shop. I could make anything I wanted and the counselors were great. They were all college kids on summer vacation and they took good care of all of us.
I guess the best part was being on my own, making new friends and sharing stories with other people my age who had been through some of the same things that I had been through. It’s nice knowing that you’re not the only one who has to go through this.
I had so much fun that summer, I wanted other kids in the Kansas City area to experience it, too. The camp itself is free, but each camper had to come up with his own transportation costs. I talked my Mom and Dad into a fundraising campaign and we raised more than enough money to send eight kids, besides myself and one chaperone, Patsy Shawver (it would never have been as good without Patsy) to camp that summer.
Everyone had a great time and we’re still doing it. I haven’t been able to go back, but about forty kids from the KC area have gone thanks to the generosity of all my friends in Kansas City. It makes me feel good being able to give those kids a break from their routine. They need it!
My Dad even got in on the act. I guess I talked about it so much and had such a good time he wanted to thank them in some way. He gave up a week’s vacation and lived and worked at the camp for seven days. He mowed lawns and did whatever was needed. So “The Hole in the Wall Gang Camp” became a family affair.
One of the bonuses of going to the camp was getting to meet Paul Newman. What a great guy. I had numerous requests from friends and family to get his autograph, but they told us at camp that he didn’t like to sign autographs so we didn’t ask him. I got to see him again later that Fall when he and his wife were filming “Mr. and Mrs. Bridge” here in Kansas City. This time I brought my mother and sisters along and they haven’t bothered me anymore about those autographs.
ONE MORE TIME
My senior year started out great. Seniors get an hour off for lunch so that meant a couple of hours of school in the morning, a midday break and a few class hours to finish up the afternoon…A walk in the park! First semester of my senior year was the best it could be and then it happened. December came and I started getting double vision and headaches. It had been seven years! Five years free of cancer is supposed to mean a complete cure and that it won’t come back. It had been five years plus two extra and we were sure I had it made.
It wasn’t to be. The C.T. scan showed more tumor and surgery was scheduled for December 27. We tried to make Christmas the best ever. I really didn’t mind the surgery, but I hated the thought of going through more radiation and chemotherapy again. Technology had improved so much in those years that radiation wasn’t too bad. I didn’t feel sick at all and I didn’t lose all of my hair. The chemo was difficult and again we couldn’t finish all of it because it was doing some more damage. I think this time it was doing something to my kidneys.
I really didn’t miss school too much from the surgery. By the time Christmas break was over I was almost back in the swing of things. Each day after school I would go down and get my radiation, then make it home in time for dinner.
The love and support at Bishop Miege kicked in again. The kids and teachers were happy to see I’d made it though another “walk in the park” and things got back to normal pretty fast. I had to get ready to graduate. There were parties and a prom and finals to think about. I aced them all! Well, I got through them anyway.
Toward the end of school we had an awards assembly and I got “The Adult Christian Living” award. It is given to someone whom students and faculty feel has been “outstanding in Christian living both at school and away from school” (I guess they really didn’t know what I did all the time!). As I walked up to the stage, my best friend stood up and applauded, but he wasn’t the only one. The entire crowd in the auditorium got to their feet. I felt great, but it gets even better.
The Bishop Miege graduation ceremonies are held in the Municipal Auditorium downtown to accommodate all the friends and relatives of the graduating seniors. I had my share in the audience and I was so proud. When my name was called to walk across the stage and pick up my diploma, I felt a huge wave of energy and looked out to see the whole audience standing, clapping and shouting. I can’t express how I felt, but I’ve never felt so good in all my life. That was quite a “walk”! I had made it!
Eric would have liked to continue this story, but circumstances wouldn’t allow that. He went on with his therapies that summer and started college in the fall. He did quite well. After the second tumor, the doctors had said that he had a 20% chance of living two years. That didn’t stop Eric. He had beaten it before and he was bound and determined to beat it again.
But that wasn’t to be. He started having even more trouble with his eyesight and balance and we knew something was wrong. Two and a half years after the last tumor surgery, he had another surgery to remove yet another tumor. They could not get it all and so started another round of chemotherapy. He had a very difficult time, in and out of the hospital with blood infections, low energy levels, and finally we knew it was doing no good. Eric died late October that year when he was 20 years old.
Eric tells only half his story. Just like he lived his life looking at the big picture, he didn’t relate to you all the hundreds of shots he had, blood tests he gave, awkward examinations he was subject to, thousands of pills he had to take. He was the bravest and most courageous person I have ever met! He never complained or rarely asked “Why me?” Someone asked him one time how he ever got through all that he had been subject to and he said, “It really wasn’t all that bad!”
Parents are supposed to teach kids about life and lessons in living, but I have never had a teacher quite like Eric. He taught me more about the important things in life than I could ever have imparted to him or read in any book. He had fun and gave fun, he lived love, gave love and received so much love in return. As long as he was with his family, or with others that he loved so much, or helping people who needed extra help, he was happy. Little things were “no big deal”, because it was the big picture that he was concerned about. Of course, his “little things” were losing his hearing, seeing double most of his last three years, being in more doctors’ offices and hospital rooms than any one of us would ever imagine. He was happy and wanted to make his “mark,” he wanted to do something that would help others get through difficult times and he mostly wanted to just enjoy living.
I have to related what has just happened to me. I started retyping Eric’s story because many people wanted a copy, and he his had markings all over it. He had not kept a copy of it in his computer, so I started typing it over. I’m not a very good typist, and it was a long, arduous task. Well, way into the night, at the end of my patience, and at the end of the paper, I hit the wrong key and erased the entire manuscript! Instantly, I screamed and threw whatever was within arm’s length to the floor. Then I stopped and thought of Eric. This was how his whole life was. He’d get to a pretty good point and instantly was told he had to start again. Only his was not a simple four-hour task, this was his life. He never gave up or screamed or threw a tantrum. He accepted whatever was thrown at him in a very soft, quiet, understanding way. I am so proud of him and wish I were more like him. I can never begin to explain the pain of missing him.