Spinal Cord Tumor Association, Inc.

Ben’s interests:

Ben is the President of our business, he likes playing on his 4 wheeler, and he loves AIRPLANES! He loves to fly on his workdays and off.

Children:

Jacob: 18, is in the 12th grade. He is from Carol’s first and short marriage. He has a Black Belt in Tae Kwon Do, loves to read, hang out with his friends, golf’s and has a great part time job He will attend college next fall. He is also computer genius!

Cally: 10, is in the 5th grade. She love animals and is involved with The Gift and Talented Program, is Class Rep., Is in 4-H, The Academic Team and also plays Soccer and swims.

Brayden: 7, is in the 1st grade. He loves to ride his bike, is great with math, spelling and reading, likes to play video games, collects Pokemon cards, coins and plays baseball and swims. He also loooooves money! Is always looking for way's to make it!

All three kids do very well in school so we are very proud of them!

SCTA Volunteer:

Years ago Carol bought toys and sent them to Dr. Kothbauer's office for him to have on hand for the children who were about to have surgery. She wanted to do something to help take the stress off these special young kids. Her children love stuff animals and find great comfort in them. That’s how she came up with the idea. Our president, Linda really liked this idea and asked if she would be interested in doing this for the SCTA group. So now, instead of doing this on her own, SCTA helps. They send a check, she shops and sends the box of goodies to John Hopkins and it's something that her younger children love to help her do!

A “Family” Love Story, by Carol:

When I was 27 I met my husband, Ben. He was training with the Boise, ID. Air National Guard. We hit it off right away. He took me to dinner and we have been together ever since. We were married in the winter of 1991.

My husband’s job brought us to KY, where he still flies for The Air National Guard and for a commercial airline. Until recently, I have been a stay-at-home mom. We just opened a business where I will now work part time.

What can I say about my family, other then the fact that I would not be here without them?

My husband is a “get things done” type of guy and, boy, did he get things done. There were times when he had to carry me, clean up after me, and even feed me. He was always there for me for me. (Too much sometimes. ha! ha!) He went out of his way to make sure that I was okay and he still does that today. We just recently celebrated our 13th wedding anniversary. Ben surprised me with a trip to the Biltmore Mansion. It was a nice and romantic little get away. Being in a wheelchair hasn’t changed our relationship too much. My husband still makes me feel attractive. He tells me that I’m pretty and that he loves me every day.

After my surgery, my children were scared but strong. My oldest son, was 14 at the time, and became a little man right before my eyes. He helped take care of the younger children and took on more responsibilities around the house. I know it must have been hard on him, but he never complained. My daughter was great at providing me with lovely little notes and drawings that she proudly displayed around my bed. She even decorated my walker with “Cool Mom” stickers! I was walking in style! My youngest, who was only three at the time, did not really understand

the changes that were occurring around him but he handled it well. He would come and lay with me on the bed and there we would play games, read books and tell each other stories. He would tell me the most amazing spiritual stories. He encouraged me to walk, sit up and play outside with him. He never let me rest for very long and this really helped me to heal.

We lead a pretty normal life now. We’re busy with work, children and we travel a lot.

It wasn’t always easy, but we have learned to adjust and make the best out of the situation.

I thank God each and every day for all that I have. Especially for my family and friends that give so freely. All things change, and this change has made us stronger and more aware of the life around us.

A love note to Carol from Ben:

My name is Ben Miller and I am Carol Miller's husband. I wanted to take this opportunity to write a few things about Carol that most of you would never know unless you met her personally. Carol is a relentless optimist by nature. Her inner strength and will power are so natural that it will astonish most people. Complete strangers will seek her out in her wheelchair with a big smile on her face and they stop to talk. Why? Because she always exudes a triumph over adversity and a zest for life. They speak of their problems and they ask small questions of her ordeal but they never ask what they really want to know. They want to know the secret! They want to know how do you face such a challenge in life and come out on top? I, for one, like the strangers, often wonder how I would cope. I understand when you see a person like Carol you want to ask, ‘what is the answer’? Only Carol really knows the answer, but I but I believe it's simply because Carol is a special person with special attributes that are enviable to most of us. Her unwavering dignity, strength and grace have been an inspiration to her family, friends and complete strangers. These are the things I love about Carol.

Thank you again, for the opportunity to write about Carol and thank you for honoring our family on this Valentines Day.

Carol’s Spinal Cord Tumor History:

When I was about 18 years old, I started noticing strange sensations in my arms and spinal cord area, and had trouble urinating. My mother took me to the doctor, they ran several tests, but they all came back normal. The strange feelings never lasted long, but they did continue to happen though out my life. In spite of all this, I was able to lead a very normal life. I was very active with camping, hiking, cheerleading, volleyball, swimming and I loved to run.

In the winter of 2000, I started having those strange sensations again, only this time, they were in my left leg. A slight tingling sensation. It never hurt, but it was constant. I ignored it and never really told any one about it. Then in early spring my left leg went numb. I knew something was wrong so I went in for some testing. At first, my doctor thought I had MS. He sent me for a MRI. The test came back showing a tumor at the T-3 -T-6 area in the spinal cord. I’ll never forget that day....

In June I flew to NY to have my surgery by Dr. Epstein at Beth Israel Hospital. The surgery went well. They were able to remove roughly 80% of the tumor. The test revealed that the tumor was showing some activity, very little. They recommended radiation. The doctors were very surprised that I was still able to do all that I was doing up to that point. They believe that I had had this tumor since childhood. The tumor was graded a 2-3.

Right after surgery I flew home, and went into rehab. I did very well and was to the point of walking with a cane, but then radiation treatments started and I have not been able to walk without a walker ever since. After the treatments my legs felt different, more pain and had a very heavy feeling to them. Radiation was very hard on me. There were days when I didn’t think I was going to make it. I was tired and on a very heavy dose of steroids. I hated those steroids. It was a very hard time for my family.

In January 2002 I started having back pain and the MRI results showed that I had developed a small cyst. So, once again, I flew off to NY to have surgery. This time, my surgery was performed by Dr. Karl Kothbauer, a wonderful man with whom I still keep in contact today.

It has been almost three years since my last surgery and I am doing well. I am still unable to walk without assistance and need the wheelchair or scooter for outings, but I am okay with that. I lead a pretty normal life really, just glad to be here. I get MRI’s on a regular basis and every one of them shows that the tumor is stable.

Survivor's Spotlight

By SCTA Volunteer Joanne Glosser Jaeger

A Valentines Day story about a special SCTA volunteer, Carol Miller, and the special love that bonds her and her family ….

Carol & Ben and Family:

Carol’s interests:

Grew up as a Military Brat and lived in Japan and several different States. Hobbies include my family, faith, reading, gardening, being outdoors, crafts, my business and travel. (We travel a lot). We now live in Kentucky.

We have a lot of faith, and have great family and friends!

Happily married to Ben for 13 years.