My Story

In 1989 I was fifteen and just starting my freshman year of high school when I went to my regular local eye doctor to see about getting contact lenses. I had no problems of any kind with my vision.

During the eye exam the doctor noticed a spot “on the optic nerve of my left eye.”  He recommended that my parents take me to see a retinal specialist before he gave me the contact lenses, to make sure this wasn’t something that might be made worse by the contact lenses.

I asked members of my local church to pray for me, and I began praying myself.  I had always been taught “give it to God, for him to handle for me.”  I went to go see the specialist for more tests, with and without dilation.  He said he thought it was a small tumor on the optic nerve.  He thought it was okay to get contacts, and that he should look at it again in a year.  Neither one of my doctors seemed too worried or concerned about it at this time.

They did an MRI and CT scan of my body. They recommended I see a neurologist, Dr. Thaddeus Coin, who next sent me to Dr. Allan Friedman, a Duke University neurosurgeon.  

He told me that it looked to him like I might have a tumor condition called “VHL.”  He explained that this is a disease that affects different areas of your body, such as your brain, spinal cord, kidney, pancreas, adrenal glands, eyes, ears, and reproductive system.  The brain tumor was only 3mm, which was really small.  He suggested that we should wait six months to a year and then scan again before we talk about removing it.  If any more problems came up between now and then, we might need to remove the tumor before that time.  From 1991 to 1993 we did regular scans, and thankfully the tumor did not change very much.  I felt truly blessed to have gotten so far without the surgery.

In 1993 they noticed the tumor was starting to change just a little, and they wanted to see me back in six months.  That would put us into 1994.  I had been doing fine. This was my senior year of high school.  All of a sudden I started having migraine headaches, getting sick to my stomach, and was unable to keep down certain foods.  Even certain smells would upset my stomach.  I told my parents, “We need to call and go see Dr. Friedman at Duke!”  I would cry because of the headache pain and I was scared knowing there was a tumor inside of me that could cause all kinds of problems.  Clearly it was growing!

I went to see Dr. Friedman.  He ordered another MRI.  The brain tumor had grown from 3 mm in 1991 to 24 mm now, and needed to be removed as soon as possible.   I had only about three weeks of school left before my spring break. I asked Dr. Friedman if I could wait until then.  He held out his appointment book for the coming week and pointed with his pen.  “You may have any day of this week that you want for your surgery, but we can’t wait for your spring break in three weeks.  I’m sorry!”  So, with no more to say, I looked at the dates and picked the 23rd of February of 1994 to have my first brain surgery.   I couldn’t believe this was happening to me! Of all times, why now?  This was senior year of high school! My mid-term exam was going to be due, my graduation, etc., and what was I going to do now?  I continued praying.

My surgery and the time in the recovery room took a total of 16 ½ hours.  There were six feeder vessels to the tumor in my cerebellum.   Even though the surgery had taken longer than expected, Dr. Friedman was sure he had gotten the entire tumor.  My face was swollen after the surgery, but when I woke up my dad said that all I wanted was to get up!  I had things I had to do and time was running out! Everyone told me to rest.  The very next day after major brain surgery,  I was sitting up in my bed, with the laptop working on my mid-term paper for school!  The doctor was amazed with my progress.  My prayers had been answered.

In June I graduated with my class.  What a blessing it was to find I had the strength to heal from the surgery and complete all the work for graduation in spite of what I had just gone through.  I didn’t give up.  I didn’t let that brain tumor stop me from doing what the Good Lord had in store for me to accomplish. 

From 1994 until 1996, I just did regular follow-up MRI and CT scans to watch for any new tumors of any kind. Well in 1996, I was hit with another brain tumor in the same area and had to have it removed, also with Dr. Friedman at Duke.

I was blessed with three beautiful children in the next few years.  In July of 1997, I became pregnant with my first child. I carried him fine up until the last few months, when I got Gestational Diabetes. I had scheduled a C-Section due to the risk factors and all went well.  I named my first son Christopher Alan, to have “Christ” in his name.  My second pregnancy went well until at 32 weeks or so, when I was placed on full bed rest until time for the scheduled C-Section to be done at 38 weeks.  My daughter was born in May of 2002.  As I went through my third pregnancy I found out that I needed to check on my sugar levels.  They would drop low one minute and then would run high during parts of the day.  I was on bed rest as well, as my body began to go into labor early again.  But we managed to get to the scheduled C-section at 38 weeks.  Samuel, my second son, was born in March 2003. 

I was losing weight during this last pregnancy, was often tired and had no energy at all.  My endocrinologist thought we should do a CT scan of the abdomen.  The CT Scan results showed that my left adrenal gland had a tumor on it, called a pheochromocytoma, that was causing all of the current problems and that tumor would need to come out soon!  My doctor told me there was a place in Bethesda, Maryland, called the NIH Clinical center, where they had a large study of people with VHL.  He contacted them.

Well in July of 2003, I went for my first time to NIH. While at NIH, I was able to finally find out that it was definitely true, I was a carrier for the VHL gene. I was told at NIH after years of watching for any new tumors or cysts, that I had a tumor on my left adrenal gland that was rather big and that needed to be removed.  In October of 2003, just a little over 4 months after the birth of my third and final child, NIH removed the tumor on my left adrenal gland as well as the whole adrenal gland.  Everything went fine.  I thanked and praised God and I flew back home until the next visit.

In July of 2007 I underwent my third brain surgery.  The surgery went well, leaving me with a little paralysis in my left hand.  It’s hard to have only one hand that works when you need two!  But this is the time when you see how much we just take things for granted in our life and we don’t realize just what we do have when things here could be so much worse for us!

Another hard thing for me to go through was DNA testing for my children. In December 2007 I took all three of my kids to Chapel Hill, NC, to the Children’s Hospital, to have a DNA test done, to check them for the VHL Mutation in them!  When I received the test results, I just wanted to hold them and cry!! The results showed that my oldest son, Christopher, is a carrier of the VHL mutation and so is my daughter, Sarah!  My youngest one, Samuel, does not have the VHL mutation.  Other than losing my Dad back in July of 2001, these two things have been the worse things I’ve had to happen to me!!  I still cry at times thinking about my Christopher and Sarah, but I know that if they will only look toward the Lord for help they will receive it.  I have shared the VHL Handbook with their doctor and they are being screened to keep them healthy.

As of today, July 9th 2010, I have been free of tumors for two solid years.  Sarah and Samuel decided this year to compete in a pageant in our home town, Whiteville, NC, called the Columbus County Relay For Life, to help with finding a cure for cancer. Sarah won the title of  Tiny Miss and Samuel won Wee Master.  They both dedicated their efforts to the memory of their grandfather and in honor of me, their mother, and some friends who have died of cancer.  

Sarah saved the tabs from aluminum drink cans to send in to the Ronald MacDonald House as her way of helping to find a cure. (See note below)  Sarah had people calling me left and right, to tell her they had drink tabs for her.  Sarah’s dad and I helped her box them for mailing – altogether two large priority mailing boxes! 

I would like to thank My Heavenly Father and Lord and Savior Jesus Christ, my wonderful, loving husband, my children, Dr. Allan Friedman and all the wonderful nurses at Duke University Medical, and Dr Russell Lonser and all my nurses at NIH in Bethesda, Maryland!

That’s it for now, but it’s not the end of my life story – the adventure continues!

Note: The only charity currently collecting pull-tabs are some of the Ronald McDonald houses.
http://www.rmhccanisters.com/c-4-national-pop-tab-collection-program.aspx     

As printed in the VHL Family Forum 18:3, September 2010. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.