My Story: Persistence Brings Answers

Kyle Killeen

My name is Kyle Killeen, I’m 17 and in my senior year at Mater Dei High School in New Monmouth, NJ. Being a teenager is a lot of fun, but it can also be pretty stressful sometimes, especially if you feel that you’re different from all your friends.

That’s how I felt for a long time.

I stopped growing when I was about 13 and the headaches that I had lived with most of my life became unbearable. Most mornings I could barely lift my head up, the pain was so intense. On several occasions the headache was so severe my parents took me to the emergency room. As I got older, things just kept getting worse.

At 15, as a sophomore I weighed about 90 lbs. I tried everything to gain weight and grow but no matter what I did, nothing changed. My mom was really worried; she took me to all kinds of doctors. We saw an ear, nose, and throat specialist who determined I needed sinus surgery. He was convinced the reason for the terrible headaches, my pale skin color and the black circles under my eyes was a combination of allergies and closed sinus passages that continually became infected. I had the sinus surgery in August of 1996; to date this is still the worst experience of my life. The post surgery pain was awful but it was nothing compared to the visits to his office for post-operative maintenance. And worse still was that after enduring all that pain my headaches were still there.

As a family we didn’t give up the search for what was making me so ill. We continued to see doctor after doctor. One diagnosed me as having allergies. So for two years every Wednesday I went for allergy shots. The headaches not only persisted they became worse. Some doctors thought I had an eating disorder, some thought I had asthma. I saw a pediatric cardiologist to see if there was anything wrong with my heart. One doctor even thought I was depressed. Which of course I was becoming, because no one knew what was wrong with me. I couldn’t play soccer anymore and when my friends wanted to go out I had no energy. Schoolwork seemed impossible. I was pretty scared. I knew something was really wrong with me and I thought we would never find out what that something was.

My family physician, Dr. John Haddad was great. He always believed me when I told him how I was feeling. He was convinced that something was medically wrong and frustrated that so far we had no answers. Thankfully he never gave up, he’d say "Kyle I want you to see this specialist or take this test… I promise we will find out what’s going on with you." When I was 15 and my health continued to decline, Dr. Haddad sent me to an endocrinologist. It was a terrible office visit. The questions were so personal, and I felt like I had answered the same ones a million times. It was a teaching hospital, so a lot of medical students were in and out of the room, staring at me, examining me, I felt like a freak. The good thing was he was a smart guy and he sent us for another MRI, this time with a contrast agent.

The next morning he called my Mom and said the MRI showed that I had a brain tumor. My mom thought there was some mistake, but I knew right away that he had to be right. He diagnosed the tumor as a Craniopharyngioma. We couldn’t even say it much less spell it. We called Dr. Haddad, as always he was great. He told us to pick up the films and come to his office. By the time we arrived there that afternoon he had contacted a surgeon at Columbia Presbyterian and had set up an appointment for the next morning.

This was how I came to know another great doctor, Dr. Neil Feldstein. As soon as I met him I really liked him. He talked directly to me and answered all my questions. He told me I needed to have surgery to remove the tumor and gave me all the details of what it would be like, how long it would take, and how I would feel afterward. He let me know what my recovery would be like. He even told me all the things that could go wrong. It sounds funny but after I talked to him I was so relieved. It was okay that I had a brain tumor because at least now I knew what it was and how it could be taken care of.

My surgery was on March 19, 1999 at Columbia Presbyterian Babies & Children’s Hospital in New York City. It lasted almost eight hours just like Dr. Feldstein said it would. The hospital was great and everyone took really good care of me. All my family was there. My mom slept there every night. She never left the whole fourteen days. My Dad came back and forth every day and so did my Nana and my Aunt Peggy. My uncles (I have five) also came to visit. My cousin Joseph is a New York City fireman in Harlem, and he bought me N.Y.F.D. tee shirts. Everyone at the hospital wanted one. Having all my family there really helped a lot. A lot of people sent me cards. Everyone at my school, at my church and in my neighborhood prayed for me to get better.

I met a lot of doctors at Columbia and they were all really nice, but one in particular was really great, Dr. Barney Softness. He was my endocrinologist. I learned a lot from him. When my hospital stay was done and I had to choose an endocrinologist to see, I told my mom it had to be Dr. Softness. As a result of the surgery my pituitary does not function at all, so Dr. Softness and I see a lot of each other. He has a cool office in Greenwich Village, and I really like going into the city to see him.

The surgery was a year and a half ago. My pituitary gland is still not functioning so I have what they call Hypo-Pituitary Syndrome. I also have Diabetes Insipidis, so I take a lot of medicine. Every day I take Hydrocortisone-Steroid, Synthroid for my Thyroid, and DDAVP for the Diabetes Insipidis. I used to get a testosterone shot once a month, which was awful. It was painful and having a full dosage all at once really affected my personality. I told Dr. Softness about it and he checked into the patch. Now I wear a testosterone patch every day and that’s working a lot better. I also give myself a daily injection of growth hormone. It was scary in the beginning but I’m pretty used to it by now.

Most days it’s really OK, I don’t think about it too much. But sometimes it’s a little overwhelming, and I just wish I didn’t have to deal with it all the time. If I get sick I have to double my steroid right away, because my body just can’t adjust itself like most people, I have to help it along.

All in all though I’m pretty lucky. I have three great doctors, and there is medicine that can help me when my body can’t. Although the tumor can come back at any time, it’s not something I worry about, except when I go for my MRI every six months.

A lot of good things came out of this experience. My family really pulled together to help me. They organized a group called Kyle’s Heroes. Kyle’s Heroes has an annual golf outing and in just two years we have raised close to $ 20,000. We donate a portion to the Childhood Brain Tumor Foundation for research. We use some of the money raised to help with my medical expenses, and we have also donated to other charity groups as well. Being able to help other people makes all of us at Kyle’s Heroes feel really good.

At the end of January I am going on a trip to The Hague in the Netherlands with some of my classmates. I will spend a week with a Dutch family and go to the model United Nations every day. When we leave Amsterdam we’ll go on to Ireland for a week. I've been to Ireland before; it’s such a beautiful country I can’t wait to see it again. In March my senior class is going to Disney World in Florida. That should be awesome. Before I know it I’ll be graduating and going away to school. I plan to study Industrial Design because I love art, and I love to build things that are 3-dimensional.

Sometimes I think about how I felt before the surgery. If I still felt like that now, I know I never would have been able to do any of these things. Now I’m happy to be growing (5’6 and 120 lbs.) and feeling better every day.

I guess what I’m most grateful for is just feeling good when I wake up in the morning and being able to have a normal day.

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