Part Three: Surgery

I cannot honestly remember how long it was before they removed the tumor, but they did, along with the surrounding bone. I remember waking up in the ICU thinking that I was watching Tom and Jerry cartoons on the television. Funny thing though, there wasn't a television in the room. I would see it, and then just see some cabinets. Every once and a while a nurse would come in to see how I was doing, or because I was pushing the call button thinking it was a remote for the non-existant television.

My little sister, who was around 7 at the time, was too young to come onto the unit. But one of the nurses was nice enough to let her stand at the door to see if I was okay. "Michael" she said in her softest, worried voice. I remember hearing, but not responding. She was worried about her big brother. Years later I would do the same thing to her after she had open heart surgery. Although, I made the silly mistake of asking how she was while she had a trachea tube. The more she tried to answer, the worse I felt, because she couldn't and she was choking. Lesson learned.

Ice chips were all I could eat. I'm not sure how long I was in the ICU. They removed several drains from the inside of my head, and I was ready to be moved up to the third floor, which then, was the pediatric unit. My Mom and Dad would come, trying not to look scared or sad. The incision was about 8-10 inches on the top of my head, and the doctor had instructed my family not to react to the sight, and they were told that the swelling would go down. They did not want to scare me. After a couple of days, my Mom was taking me in a wheelchair to the playroom. I caught a glimpse of my head and it looked as horrific as I could imagine. The incision actually looked like someone had embedded an axe in my skull and removed it. Of course, after a few weeks, the swelling did go down. Through the course of my stay, many people would come to visit. From family to Friends, to Friends from school who I didn't know I had. My room was filled with so many flowers, cards and gifts that it didn't really feel like a hospital room. My grandparents Johnson would come to visit and bring me Legos, and sit and watch television with me or read a book. My grandparents Keehn would come from the city and my grandpa would watch the Cubs game.

But they all knew that the tumor was malignant, and that their little boy had cancer.

Biopsies of the tumor were sent to several different clinics for evaluation. All came back with the same results, Ewing's Sarcoma. Which is a bone tumor which usually occurs in the long bones of male teens. But the tumor was at the parietal bone of the skull which, as of 1998, only 17 cases of cranial ewing's sarcoma had been reported. Although, these were facts that I did not know as a child. It was only when I was in my late teens that I found all the documents and read through them to find out I had a exceedingly rare cancer, with a survival rate of only 20%.

Part Two: Visit to the Hospital

So, my Mom, sister and I got up early (EARLY) on a weekday, before school, and went over to the hospital ambulatory care (which now, I would think, would be Day Surgery). After an hour or so of signing in, getting a room, and prep work, my doctor comes in and is ready to withdraw the "fluid" from the large, egg sized bump on the top of my head. He injects a little bit of an anesthetic to dull the pain, and then uses a wide-bore needle to do the aspiration. After 15-20 minutes of poking and trying to withdraw ANY fluid, my doctor decides to make a small incision to see what the problem might be. For me, it sounded like he was cutting through leather, and I could feel little pokes, like he was making a dotted line. After a worried, "Oh", he tells me that he needs to get a neurology consult and leaves the room to go talk with my mother, who is in the waiting room with my sister. He comes back into the room a few minutes later with a neurologist and after a serious amount of mumbling and checking, the neurologist leaves and my doctor starts closing the wound. Before the last 5 stitches, the anesthetic was starting to wear off and I could feel quite a bit of pinching. I told the doctor that it was really starting to hurt and it needed more anesthetic. He told me that I was a big boy and there were only 4 more stitches to go. It was really painful. Even after he finished, there was throbbing and sharp pains at the top of my head. My doctor told me that they were going to do a couple of tests and that I would be staying in the hospital for a while. There was also talk about doing surgery right away to remove whatever it was that was on the top of my head.

The nurses wheeled me down to the radiology department where I was to get a CT Scan. I got into the room with this seven foot, doughnut shaped machine that had a table coming out of the hole. Very frightening, I remember seeing something like that in a movie once and thinking to myself, "I hope I never need to have a test like that". The radiologist asked me if I'd ever had a CT scan before, and I hadn't. He started an IV (which, at the time, I did not have the extreme phobia of needles that I do now), and put me up on the table that was part of the CT Scan machine. He told me that I'd have to lie very still, and to make sure, a couple of techs put straps on my calfs, thighs, chest and arms. They also put my head in a plastic cradle and strapped my head down at the forehead and chin. After 45 minutes of loud buzzing and the table moving an inch or so every 2 or 3 seconds, they stopped and had me wait for another 15-20 minutes, never telling me exactly what they were doing, still lying uncomfortably on the table. When they were done, they came back they told me I had to lie on my stomach so that they could get the back of my head. They did the same thing as before, except this time I was on my stomach. Same straps across my legs and back, and this time, they had a special piece for my chin where the plastic cradle was for my head. The piece my chin was in looked like a mouthpiece from a football helmet, and because I couldn't keep my head still, they put rolled up blankets on either side of my head and strapped the back of my head down, very tight. It was the longest 45 minutes of my life. They also had me wait another 10-15 minutes while they did whatever they did. Although, every 5 minutes or so, they would say, "Ok Michael, just another couple of minutes." I've had several more CT scans since then and that was by-far the worst. But also the most important. After they wheeled me out on the stretcher, my mom put her hand on my head, and I remember telling her if at all possible, could they wait until the next day to do any surgery.

Part One: The Begining

When I was 12 and at Lively Junior High in Elk Grove Village, I bumped my head, on more than one occasion, on the top shelf of my locker. I had an egg shaped knot at the top of my head for weeks that would not deflate.

My parents, who were divorced at the time, both were worried and took me to my general practitioner that was just around the corner. We were told that it was just a bump that had filled with fluid and he just needed to aspirate it with a needle. My doctor said that he didn't have time to do it then, and to come back in a couple of weeks if the swelling hadn't gone down.

A few days later, my Dad brought me back in and told the doctor that he needed to do something right away. Again, he said he was too busy, but he would see us at Alexian Brothers in the Ambulatory Care center and he would remove whatever fluid was in there, and that it would be a very short procedure. I remember him saying that he would do it, early in the morning and I would only miss a half hour to an hour of school.

Hello,

The whole concept of this will be to leave some sort of legacy/stories for my daughter. My life has been quite interesting, and with a daughter, I expect it to be way to overwhelming for my, already, full brain to contain. So I'll just be writing down different thoughts and some memories from the past.