Thank God for my Family

Alexandra Morais, New Jersey

I was diagnosed with VHL in the year 2000 after a long clinical history. I recall my first brain surgery back in 1985. I was in my home country of Colombia, South America. I was getting out of college and thinking I had my whole life in front of me. The doctor told me it was a benign tumor. I had surgery to remove the tumor, then physical therapy, and soon after I was dancing again like nothing ever happened.

That same year I came to live permanently in the United States. In December of 1986 I got married and in 1988 my son was born. At the end of my pregnancy I experienced some health problems. I had pre-eclampsia along with some neurological problems. Thank God my son was born healthy.

Ten days after his birth I went back to Colombia for another surgery leaving behind my newborn child and my husband. That was one of the most difficult decisions I ever had to make. I knew I needed to care for my health, and my neurosurgeon in Colombia was then the best option. I stayed there for two months, had surgery, and came back to the U.S.

In 1991 I had an MRI follow-up and what a surprise: I had two tumors in my brain. This time I was referred to a local neurosurgeon. He recommended surgery right away. After that surgery my mobility was no longer the same, but thank God I was still able to live a normal life. The neurosurgeon recommended that I have yearly MRIs to follow up on the progress of the tumors, but there was still no diagnosis. In 1992, after my routine MRI, I had to undergo a surgery in the thoracic spine, and six months later I was back to work.

In the year 2000 I went for a physical and complained to the doctor of a lower back pain. He ordered an ultrasound of the kidneys and after that came a CT scan. Right after that CT scan my primary doctor diagnosed me with VHL, a disease that even he was not familiar with. He recommended that I go to the internet, and that is how I found out about the VHL Family Alliance.

My primary doctor referred me to a surgeon at Columbia-Presbyterian Hospital in New York City who recommended surgery in both of my kidneys. I had surgery in my left kidney first, as the doctor wanted to make sure that at least one kidney would be working properly in case he needed to remove the other one. Six weeks later I had the second surgery and thank God my kidney was spared. It was explained to me that the tumors in my kidneys were cancerous, but that I did not need any special treatment because the tumors were contained.

Three months later I had brain surgery due to a cyst located in the lower part of my brain, the cerebellum. I mention the location because mostly all my surgeries had involved the cerebellum, which is the balance center. The brain tumors left me with balance problems (ataxia) and I now have more difficulties walking. Due to my poor balance after so many surgeries I now walk with a cane.

After my husband went to the internet and looked in the website for VHL, we finally understood the reason for all my surgeries. Since VHL is a genetic disease I went for a DNA test to confirm the diagnosis. There is no apparent history of VHL in my family. Recently I began the stressful wait for a second opinion, as my kidney surgeon thinks my right kidney needs to be removed.

When I was first diagnosed with VHL, I wished that I had not gotten married and had a child. However, throughout the years I learned to thank The Lord for my husband and my son. I truly believe I have been able to overcome these trials due to their loving support and hard work. Of course I have to mention the support of my parents, brother and my little nephews (2 and 3 years old), who with their innocence make me forget the difficult times. There is no question in my mind that God had a purpose to put me around people that truly love me. I have learned to appreciate the simple things in life. Even though family has always been important to me, now more than ever I believe with the support of a loving family one is able to overcome any obstacle.

I also want to thank the VHL Family Alliance for the encouragement and support through the newsletters. By reading the newsletters I learned that I am not alone in this battle and that we need to support each other.

A year ago I started to answer the hot line in Spanish as I felt I needed to do something to help people that were in similar conditions as me. So far the response has not been what I anticipated, but I want to take the opportunity to invite the Spanish speaking population to call me at 1-800-767-4845 or to write to info-es@vhl.org. This toll-free number works from the U.S., Canada, and Mexico. I welcome ideas on how to publicize this service to members of the Hispanic population who may be struggling with this illness.

As I finish this entry I want to inform you all that the doctor from the National Cancer Institute contacted me a couple days ago and I was told that currently there is no need to have my right kidney removed. My thanks to VHL Family Alliance for referring me to the NCI.

Finally, I advise all of you to trust God during your hard trials and you will find comfort.

As printed in the VHL Family Forum  12:1, March/April 2004.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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