This page is dedicated to
Joseph "Joey" Scullen
who passed away in early
September 2004 from
complications of brain
cancer and diabetes.
Thank you for visiting
Joey's memorial page.
Joseph was 14 years old when he was diagnosed with Glioma. We were told there were 5 tumors on his brain.... two of them were on his brain stem. They were inoperable because of the critical location in which they dwelled. Joseph went through radiation treatments and different types of chemotherapy. We all put a lot of faith into these treatments. There were so many different types. Joseph and his family never lost hope and never stopped trying to find "the cure." Joseph survived 20 months with this illness... and he fought until the very end.
perched on my cheek,
that it would stay.
but with a gentle
it flew away.
He was the most beautiful child I have ever seen. His hair was thick and dark, like the night sky. Darkest brown were his eyes, like glistening marbles against his tan skin. He grew from a beautiful child into a handsome young man. I was very proud of him. But on September 9, 2004, he passed away from complications of brain cancer and diabetes. He was 16.
This is the story of my son, Joseph, or "Joey" as he liked to be called by friends. He was born on a hot near 100-degree day in July, the same day as my wedding anniversary. I thought that was a very special event, having two celebrations in one day.
Joey was a very smart child. The teachers always said he had potential to do anything. They had put him in gifted classes because of his ability to see things and how they work. Things came easy to him. All of his schoolwork was simple to him. He never missed an honor roll for his good grades.
One hot summer day in August, Joey was playing outside and he came in and fell asleep. I couldn't wake him. At 9 years old, I thought this was unusual for a very active child. I took him to the hospital and the doctor said his blood sugar was 800 and that it was critical. He would have to stay and during that time, I was told he was a Type I diabetic. I knew nothing about diabetes. I never knew anyone that had it. The doctors told me that Joey would be on insulin for the rest of his life. I cried and cried because I had no idea what kind of disease this was.
Everything had to change when he came home from the hospital. My husband had the job of giving him the injections, and I was in charge of his meals. He was no longer to have sweets and junk food, which he loved so much. He had to develop a taste for diet pop and healthy snacks.
After a while, he adjusted to eating right. But his blood sugar levels would not go down. The doctor adjusted his insulin accordingly. Over the years, the adjustments just kept going up. He was getting four injections a day. But he was also back into the habit of eating junk food. He knew he wasn't allowed it, but he at it anyhow. He was very good at hiding snacks all over the house. I found candy wrappers and pop cans everywhere. He just loved his goodies.
At the age of 13, he was interested in the game Yu-Gi-Oh. He started playing the game with his friends and then started competing in tournaments. He got very good at this game and that's all he wanted to do. He still played his Playstation and other video games, but Yu-Gi-Oh was his life. That's all he cared about.
At 14, I started to notice a limp in his walk and a tightening of his right arm. It looked like a muscle cramp so I thought nothing of it. But after 6 months, I noticed it happening more often. I made an appointment with his endocrinologist, but Joey didn't want to go. Every appointment I made, I had to cancel. Joey didn't want to go.
Finally, in March, almost a year later, we went to the doctor. By now, he was having these “seizures" regularly and quite often. We were referred to a neurologist that made him have an EEG and an MRI. The EEG showed nothing, but the MRI showed a mass in his brain. We were then referred to an oncologist for cancer. The oncologist then told us it was a tumor but they needed more tests. A tumor the size of a golf ball in my baby's brain. I cried and cried. It was affecting the whole right side of his body. The MRI also revealed other tumors, which were smaller. They needed a biopsy to find out if they were malignant and what was to be done.
In May of 2003, we were told the terrible news of my son's life. He had a class IV brain tumor that was cancer and fast spreading. The doctor started him on chemo and radiation. By now he was unable to walk or talk. He was hospitalized again in June of 2003 and he couldn't eat or drink. He was getting worse by the day.
He was on steroids and seizure medicine. The therapist had given me thickener for his water so that he could swallow the pills, which were crushed. He was having a very difficult time just getting the pills down. His food had to be ground up to baby food consistency. When he was released from the hospital he was in a wheelchair. He couldn't speak. He had to write with his left hand the best he could. It was our only means of communication. He went to radiation therapy daily and had chemo daily for 42 days straight. He lost his hair where he had the radiation. Gradually he was sitting up with help. Physical and occupational therapists came weekly to work with his right side. He had no movement at all in his right side. They said he looked like he had a stroke. The months passed and he was doing better. He was walking with a cane with assistance from us. His eating was improving. He ate so much that he gained 50 pounds in two months. He got some movement back in his hand and he was able to play video games again. He was so happy. He always told me, when he gets better, he's gonna do everything he can and that he didn't get to do. I was so happy for him.
Then in March 2004, things started happening right after another. He got a cold and was on antibiotics and cold medicine. His blood count was low. Then he lost his balance and fell. He hit his head when he fell. In April he started drooling and he couldn't eat. He went into the hospital again and was dehydrated. He came home and we didn't know what to do. He couldn't eat or drink. Everything had to be ground again and had to use the thickener to drink. But he just wasn't getting enough. The home health nurse had told us they were going to start IV on him to hydrate him. After a few weeks, he was unable to eat anymore, so the nurse inserted a NG tube in June of 2004. Now, he was on a liquid diet of 5 cans per day. The doctor told me there was nothing more he could do because the MRI showed the tumors had gotten bigger and out of control. From that day on, we never stopped crying. He was on oxygen now and he went into a coma. They gave him morphine for pain.
For three months, he was helpless. There was nothing anyone could do. He had just turned 16 and didn't even know it. I remember when I was 16. That is the most fun time of your life. And Joey had no idea what he was missing. He slept so peaceful all these months.
Then on September 9, 2004, he was having trouble breathing. He started to moan as if he were in pain. The nurse was here and she said it wouldn't be long now. His breathing was slowing down. That afternoon, I watched him take his final breath. I cried and I still cry to this day, and I always will cry. I miss my baby so much. My life will never be the same.
I think about him every day and how I miss him. I think of all the things he would be doing right now. It's a very sad feeling because he is missing out on the best years of his life.
This story was written by Susan Scullen (Joey's mother)
((THANK YOU FOR VISITING... PLEASE LIGHT A CANDLE FOR JOEY))