Stuart Casey Lee

casey_1April 20, 1982 to March 6, 2000

I spent an entire afternoon reading all the stories listed for all the children on this Meningitis website. My heart goes out to each of the families. I have come to understand their pain.

I lived the past twenty years in constant protection of my children- worried about strangers, about car accidents, about drugs, but never about something as freakish as a bacteria that misses millions of people but found my son. This horrible disease took our Casey. Why? I am still in such disbelief.
I see my husband cry on a daily basis. Something I hadn’t seen in twenty-three years of marriage. The death of a child is such a sad thing. What is left of them when they go?

What is left of them to say they were here? Pictures? Videos? Memories? They are not enough, but they are all we have.

The day before Casey died keeps playing over and over in my mind. Us going through our day running errands not knowing that this would be our last day with Casey; not knowing what awaited us just hours later.

The day had been very busy. Our oldest son, Pete, was preparing to go to Miami for spring break from college. Our youngest son, Dylan, had his Boy Scouts Pinewood Derby Race that morning. My father had undergone emergency heart surgery the day before and I had been talking to my mother off and on all that day.

Casey had gone out the night before (Friday) and spent the night out. He was to be home at 10:00am on Saturday. He called us while we were at the Pinewood Derby letting us know he had made it home on time, but nobody was there to see it. We arrived home just a short time afterwards.

Casey told us he had a good time out with his friends, but his legs were sore. He said he danced too much. We kidded him a little saying we couldn’t believe at 17 he would be sore from dancing. I gave him some Ibuprofen to ease the aching.

He stayed in his room most of the day, but we really didn’t think much about it since he had spent the night out that night before. We just assumed he hadn’t gotten much sleep and was just tired. Some friends came to the door to see Casey around 2:00 that afternoon. He went outside to talk to them and then came inside and lay across the couch and watched “Urban Cowboy” on television while I was talking on the phone with my mother.

The next few hours were spent running errands and when I got home I went upstairs to check on Casey to see if he wanted anything to eat. He said he had a headache and he wasn’t hungry. I brought him some orange juice and some tea. I checked on him again after dinner. It was dark in his room and he didn’t answer when I called his name, so I assumed he was asleep. This was around 10:00pm.

I finished cleaning the kitchen and then started trying to get a flight to my parents in two weeks. My father was going to have another surgery and I wanted to be there. I finally got off the phone with the travel agency around 1:00am. As soon as I got into bed I heard Casey calling for me. I ran upstairs.

He said his head was hurting really bad. He didn’t have a temperature. He said his legs were still hurting and his lower back was hurting too. I asked him if he had taken any more Ibuprofen and he said no. I wanted him to sit up to take the pills. He said it hurt, but he needed to take the pills.

After he sat up he started to get sick. He threw up a couple of times. I said we should go to the emergency room, but he didn’t want to go. I was afraid to leave him alone so I lay down with him. I rubbed his head for a few minutes. He said “Mom, if I feel this bad on Monday, would you stay home with me?” I said, “Sure I will, Casey”. Then I saw a tear come out of the corner of his eye. I told him I didn’t want to argue with him anymore, but we needed to go to the hospital.

I helped him get a shirt on and helped him down the stairs. His head was hurting so badly that every movement in the car was torture. He threw up again in the car a couple of times. When we got to the hospital they saw him almost immediately. It was about 1:30am.

The nurse said he looked dehydrated and said she was going to start him on fluids. She did and they took several vials of blood for tests. Its so strange, I was so in tune to Casey’s pain and wanting them to make it stop that it really didn’t register that they were doing tests to see what was causing the pain.

They gave Casey Demerol for the pain and phenergannagrin for the nausea. I asked how long it would take before it would help Casey’s headache. The nurse told me 10 minutes. I looked at the clock so I would know when he would feel better. He continued to throw up several times in the emergency room. I wiped his face and cleaned out the trash can we carried with us from home. I must have repeated this six times while we waited.

The lights were off. The only light was coming from the hall. Casey said the light hurt his head. I wanted Casey to go to sleep so he wouldn’t hurt anymore. It hurt Casey’s head to talk so we didn’t. Casey was drowsy, but I knew his head still hurt because every once in awhile he would move his hand up to his head and then put it back down.

The doctor came back to tell me that Casey’s white blood count was high. He wanted to do a spinal tap to test for meningitis. I helped them get Casey into a ball. It hurt him terribly. I could hardly stand seeing him in such pain. The doctor said it looked cloudy and said he thought it was meningitis. He said he needed to do a test to see if it was viral or bacterial. They started Casey on antibiotics immediately. It was now about 4:00am.

After the doctor was gone, the nurse said she felt it was viral and we began talking about what his treatment would be. The doctor came back about an hour later saying he felt it was bacterial meningitis. I called my husband to tell him he needed to come to the hospital.

The doctor had called an infectious disease doctor and he wanted them to do a chest x-ray and a CAT scan. They did the chest x-ray and then took Casey down to do the CAT scan. I was sitting there alone in the room when I heard someone say, “Someone should tell the mother”. I knew I was the only mother in the emergency room, so I walked down the hall.

Casey had become unresponsive while they were starting the CAT Scan and they were putting a breathing tube in him in case he stopped breathing. I went over to the side of Casey and yelled his name. He opened his eyes for a moment and them closed them. I had no idea then that it would be for the last time.

The doctor became concerned that I was getting upset and asked if I wanted to leave. I didn’t want to leave. I knew I had to be quiet and still or they would make me leave. My husband, Jeff, arrived while they were finishing putting in the breathing tube. I was scared. For the next 30 minutes to an hour we talked with the infectious disease doctor.

We of course were told about the seriousness of this disease, but in his next breath he was saying that everything looked good at this point. We had gotten Casey to the hospital early, they diagnosed him quickly, they had gotten him on antibiotics quickly, his chest x-ray was clear and now his CAT scan showed no swelling. Everything was positive.

Casey was being taken up to CCU and we waited to go in. The nurse was great. She talked about what she was doing, as she was doing it. She told us about what had been happening. She said Casey was breathing on his own, that the breathing machine was just going along with Casey’s normal breathing.

She said he would be in the hospital about a week. She said they would probably take the breathing tube out the next day. I remember telling the nurse that if anyone could make it through this, it was Casey. Things just always seemed to work out for Casey, with little or no effort on his part. I just knew everything was going to be okay.

Casey had so many things stuck in him. I was worried about how he would respond when he woke up. He hated doctors and hospitals. I’m not sure why. He was sick so few times in his entire life. About 1:30pm the nurse went to clean out the breathing tube.
not sure why. He was sick so few times in his entire life. About 1:30pm the nurse went to clean out the breathing tube.

She warned me that Casey would probably become agitated and I commented that it was a good thing they had restraints on his arms.

Casey didn’t move. She became concerned and checked his eyes. I asked her what was wrong. She said the eyes were no longer showing normal response. The doctor ordered another CAT scan.

It took them awhile to get Casey mobile and then they took him for another test. The test showed a rapid rate of swelling around Casey’s brain. They wanted to drill a hole in Casey’s skull to relieve the pressure and to monitor for swelling. They ran a blood test for clotting, but Casey’s blood would not clot, so they were not able to do the surgery.

They continued to give Casey antibiotics, fluid and also a diuretic to help reduce the collection of fluid from Casey’s brain, but they were not hopeful. They told us Casey’s brain had been without oxygen for several hours and he was already gone.

We left Casey that night around 10:30pm knowing what we would be facing the next day. That night I slept with Dylan, our eight year old. I woke up around 2:00 and it was so dark. For a single moment I thought, “maybe it was just a dream”, but then I felt my son in bed with me and I knew it wasn’t.

When we arrived at the hospital at 6:30am the next morning, they were running tests to see if there was any brain activity. There was none. Casey was gone, but he still looked so alive. His beautiful face, his rosy cheeks, he still looked so alive. We had to remove the breathing tube, but I had to wait for my mother. I had to let her say goodbye to her grandson. After she arrived and spent time with Casey, it was time to take out the breathing tube.

They wanted us all to leave, but I couldn’t. It was Monday and I promised Casey I would stay with him. I held Casey in my arms with my hand on his heart feeling his heart beating, waiting for it to stop. It took twenty-five minutes for Casey’s heart to stop beating. He was so strong.

I was not prepared for the movement and sound that would come from Casey as his heart stopped beating. It was so hard to keep holding on, but I couldn’t let go. I wanted to die too. I wanted to go with Casey.

I said goodbye to my son at 12:00 on Monday, March 6th 2000. Just hours later Jeff and I were in a funeral home picking out

his casket and walking a cemetery to pick the place where Casey would be buried. Nothing in the world can prepare you for this, nothing.

Friends and family were wonderful during this time. I’m not sure what we would have done without their support. You really do see your true friends during a time like this.

Many of Casey’s friends came to the house Monday evening to help Pete tape music for the viewing and for the funeral. I wanted Casey’s music playing for him. Casey had so many good friends. It was hard to choose eight of his friends to be his pal bearers. Pete helped me decide who to ask.

We had visitation at the funeral home Tuesday. The people at the funeral home were not prepared for so many visitors. There were almost 1,000 people who came to pay their respects. They were lined up all the way out of the funeral home. We hugged one after another continuously for almost three hours. It was overwhelming.

Friends of Casey’s, friends of his brothers, and friends and coworkers of my husband and I. All either loved Casey or felt our love for Casey. I looked into their eyes, each one feeling just a piece of what we were feeling. Parents who were there to support us and feeling so blessed they weren’t burying their child. I could see these feelings as I spoke with each one of them.

The funeral was Wednesday. His friends had gone to the river where they used to hang out and his friend Carly took the picture of all 23 of Casey’s best guy friends. They enlarged the picture and put in on a poster board to set at the funeral. It was such a gift. One of his best friends and his girlfriend of over two years each spoke. They were both so wonderful. There were twice as many people there than could fit into the chapel. Over eight hundred people attended Casey’s funeral.