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Mariko B., Parent, Pediatric, Transsphenoidal Pituitary Surgery

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Monday, August 12, 1996 was another hot summer day in Los Angeles. We had just returned from Los Angeles Children’s Hospital where my son, Dylan, had just had another MRI on his head. Because Dylan had to undergo anesthesia, he was feeling very tired. The phone rang. It was Dr. Thomas Roe, head of the endocrinology department, with whom we had spent the morning. He had some bad news. He gently broke the news that Dylan had a tumor on his pituitary gland, a condition called Cushing’s Syndrome and that he would require brain surgery. He had already contacted Dr. Martin Weiss, Chairman of Neurological Surgery at USC University Hospital.

With Cushing’s
1996, Age 8

With that news, everything in our lives changed. Dylan had just turned 8 years old. My sixth sense was on overdrive and I had known that there was something very wrong physically and emotionally with my son. His father and I had begun a nasty custody battle a year prior and within months, Dylan had gone from 75 pounds to over 125 pounds. His skin color was orangish, he had a mustache, and he could hardly run while playing softball. I kept on wondering if Dylan was eating for emotional reasons but as spring of 1996 rolled on, I knew things were very, very wrong.

In the days after getting the news, the person who made me realize what reality meant was Dylan himself. The telephone was ringing constantly and I was hiding in the pantry or closets talking to whomever. Dylan opened the door after one of these calls and said to me, “Mom, this is my life. No more secrets.” With that statement, Dylan became the focus again and he helped us plan the next six weeks as we awaited his surgery day. On October 3, 1996 Dr. Martin Weiss and his extremely talented team operated on my 8 year old son. When it was over and he was in the recovery room everyone in the room held hands circling Dylan and prayed for total recovery. The surgery was a success. The recovery was very long with set backs and baby steps. After staying in the hospital for 5 days, Dylan was discharged. He was in third grade. Prior to surgery, we had arranged to have a tutor come to the house for three months. There were days when Dylan was so sick, he would be in a fetal position crying and the tutor could only read him a story. His third grade pals stopped by a couple of times a week after school to cheer him on. And on Halloween 1996, I drove Dylan lying in the car from house to house to trick- or- treat as he was too weak and ill to walk. By January 1997, Dylan was well enough physically to resume school.

How long was recovery? We saw Dr. Thomas Roe for the last time in December 2000. He felt that Dylan was totally on his way to complete physical recovery, with both his height and weight in the normal range for a child his age. However, his emotional roller coaster continued through his middle school years when we finally got him help for anger management and to provide a place where he could safely talk about what had happened to him and about how scared he had been.

The best medicine Dylan received was playing football for his high school, John Marshall High School in Los Angeles. He started as a freshman learning about physical conditioning, teamwork and leadership. During his senior year as co-captain, he led his football team for the first time in the school’s 75 year history, to the City Finals played at the USC Coliseum. Quite an accomplishment for a child who beat the odds with Cushing’s Syndrome. Football gave him confidence and control which the disease had taken from him at a very young age.

Dylan graduated from John Marshall High School on June 28, 2006 with a 4.3 GPA. He was chosen and gave one of the graduation speeches to his 900 classmates at the Greek Theatre in Griffith Park in Los Angeles. His message was “NEVER, NEVER, NEVER GIVE UP!” A message he offers to all of you.

2006

2006

Dylan is now an 18 year old freshman at the University of California at Berkeley, majoring in molecular cell biology. He hopes to become a doctor. He was accepted by seven colleges (all the University of Californias, USC, University of Michigan, Claremont McKenna and Occidental) and wait listed at Darthmouth and Pomona College. He has been honored by Children’s Defense Fund’s “Beat the Odds Program,” College Match, National Football Foundation (his name is forever inscribed into the College Hall of Fame at Notre Dame), Tim & Tom Gullikson Foundation Scholarship (for survivors of brain surgery), and selected as one of the Gates Millennium Scholar for 2006 ~2007 which offers him scholarships for 10 years … making his dream of becoming a doctor a possible reality.

The following is an essay Dylan wrote on his college application last year summing up his feelings about where he has been and where he intends to go. Dylan is one of the lucky ones. His diagnosis 10 years ago changed all of our lives and have made us grateful for what we have. Ten years to the day Dr. Roe called to let us know Dylan had Cushing’s Syndrome, Dylan gave an eulogy and read scriptures at his grandpa’s funeral in Barre, Vermont. How proud my father, an anesthesiologist, would have been!

I know the sheer fear of going through pediatric Cushing’s Syndrome and if anyone is in need, please feel free to contact me. Back in 1996, there was no one I could talk to which made the journey so much more terrifying and lonely. To those of you who are battling this disease, just remember that it took a long while for the tumor to grow and it will take time for the body to readjust to being Cushing’s free. It does get better … much, much better.

A complete essay by Dylan responding to the following question on his college application:

Describe a setback or ethical dilemma that you have faced.

  • How did you resolve it?
  • How did the outcome affect you?
  • If something similar happened
  • in the future, how would you react?

During one’s life they are bound to face setbacks. In my life, a major setback I faced was being diagnosed with Cushing’s syndrome. Because of that disease, I was a short, fat kid and I would constantly be teased and harassed by my fellow schoolmates. My parents would put me on diets and there would be no change. My mom then took me to several physicians, each of whom had no explanation to why I was not growing and why I could not lose weight. Finally, at age seven, one doctor conducted an M.R.I. on my skull and discovered a tumor growing on my pituitary gland. I was then told that the tumor was causing my pituitary gland to produce hormones in an unbalanced fashion. These wrong amounts of hormones caused my height to be stunted and to prevent my body from losing weight. I was also told that I would have to have a brain surgery to have the tumor removed or I would be dead by the age of twelve.

The idea of having brain surgery is scary for anyone but, as a seven year old being told they are going to cut open your head is terrifying. Despite being as scared as I was, I had no choice but to go through with the operation. In the weeks leading up to the surgery, I went to Los Angles Children’s Hospital on a weekly basis to have blood work done. Then, in the two days prior to the operation, I had to stay at the USC Hospital and have more blood work done on me every three hours or so. I was told the surgery went well. The only worry the surgeons had was that they might not have gotten all of it. From there on, I was in a recovery stage. Everyone would have to wait and see if my body would balance itself out. Since then, it has. I now stand at 5′ 11″ and weigh in at 170 lbs. I am fit, athletic, and even am the defensive captain of my school’s football team. I made a full recovery.

I would say that the outcome of this setback gave me the ability to look at what I would want to do with my life. I first reflect on the elementary kids who made fun of me. I have put all of that in the past and am now good friends with those who attend my high school. Then, I think about how it changed my mindset. Rather than living a life scared to try something, I am always looking for new, exciting challenges. I was given a second chance at life and I want to live life to the fullest. The last way that this setback has affected me is that I have an increased desire to help people. When I see my friends feeling discouraged, I do my best to help them through their problems. I also try to give back as much as I can to the community. I volunteer at my church and I am a member and officer of several community service oriented clubs at my school. Most of all, it has made me want to pursue a career where I would be able to give as much as I could, just as the doctors who gave me a second chance did for me.

Lastly, if this were to happen to me again in the future, I do not feel I would be terribly bothered by it. I have decided to live my life to fullest and to the best of my ability. All we, as human beings, can do is strive to live our lives the best we can and to enjoy them. I have been given an opportunity to do this and I will take advantage of it. So, in the event I was to face this setback again, I would have no regrets. I will have lived my life to the fullest. It would just be another challenge to overcome.

Note – Dylan was videotaped and interviewed at UC Berkeley by the Tim & Tom Gullikson Foundation and all his medical papers have been donated to the Children’s Hospital in Los Angeles in hopes that medical students can learn from his case.

Member: 80703
Newsletter: Summer, 2007
State: California

 

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