My Story

I am presently a ripe young age of 47. This is my story “in a nutshell.”

Life was normal as a child until my Dad died. I was almost 7 years old. He died October 24, 1968, at the age of 30. My Dad died from what we now know as VHL. Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels (please click on the sidebar link "What is VHL" to learn more). On autopsy, my Dad had multiple brain/brainstem tumors, spinal and kidney tumors, as well as being blind in one eye. The brain/brainstem tumor is what eventually caused his death following surgery.

I was diagnosed at age 13 with retinal lesions. I had many laser surgeries and many major surgeries on my left eye, with ultimate blindness in 1990. After many years of pain in the dead eye, it was eventually removed in 1992. Surprise for those of you who didn’t know! I now battle with retinal lesions on my good/seeing eye and also have a large optic nerve tumor. This is untreatable presently, as all methods have failed or caused worse vision, and the nerve is connected to your brainstem. Recently (2009), I was diagnosed with a macular hole, affecting the area of the eye that controls central vision. Unfortunately, I only see about one half of faces, have difficulty reading, telling time, etc…

My “terrible twos” came in my 20’s, at the age of 22, after dizziness, headaches and many falls. I had my first brain surgery. In and out for 48 days, I was eventually released from the hospital only to find there was another tumor directly behind it. The following summer, the “zipper” incision was reopened and this time I felt much better. What a way to spend my college summers! I still remember going out to the bars and my hairpiece falling in to a puddle or shifting on my head with a gust of wind. It was actually quite humorous.

My head was reopened two more times to remove a tumor from my left inner ear that had caused deafness and dizziness.

Over the years, I have had three partial nephrectomies (removal of the kidney) for renal cell cancer. Lastly, I tried a new technology where they burned the tumor. I have a total of one kidney left.

One lesson I’ve learned is you much be your own advocate. Another is not to always think that “no news is good news.” When my daughter, Alyssa, was six weeks old I had spinal cord surgery. Unfortunately, my neurosurgeon and internist failed to check my MRI scan and reports (each thinking the other had done so). Once they finally reviewed them weeks later, they wanted to do emergency surgery. What a scary, messy nightmare. I still have a lot of upper back pain, numbness and shouldn’t lift over 10 pounds – like that was easy with a new baby!

Lastly, I had brain stem radiation in October 2006 to treat a tumor connected to a 2-inch cyst in my cervical spine area. So far, so good – recent scans show that the tumors show no growth and are stable. I love that word “stable.” The down side is because the tumor hasn’t gotten smaller, I still deal with the symptoms of severe nausea, headaches and lightheadedness. My adrenal glands have stopped functioning because of the long-term use of steroids and now I take Prednisone to replace the cortisone your body naturally produces. Prior to discovering this problem, I was a “couch potato” for months and had difficultly focusing. Even a “venti” from Starbucks couldn’t get me moving!

So that about covers my life in a “large nutshell.”

Along my journey, I lost my mother in May 1999. She was the most wonderful, positive person. I don’t know what it must have been like to watch all four of your children suffer and go through many life-threatening surgeries. The only positive note of her death was she got to die before she had to watch her children die first. Ironically, she died from sporadic kidney cancer, found by trying to donate a kidney to my brother. This is probably why our kidney cancer is so prominent.

The medical bills were insurmountable and eventually our story went a bit public. Some of you may vaguely remember my family’s (Kolinsky/Willman) story being covered by Carol Marin on NBC Channel 5 news. She did a series of special interest stories and followed our family for many years during the late ‘90’s.

My sister, Lisa, passed away on September 9, 2001, from a complication related to her brain stem tumor and steroid use. My dear sister had just turned 37 years old as she lay in a coma. I’ll never forget how surreal it was writing her eulogy on 9/11/01. She had many friends/family at the service, but those out-of-state were unable to fly.

I have two brothers that are living with VHL. Steve is 48 and resides near Schaumburg. Jeff, 42, lives near Denver, CO. Both have lost their kidneys to VHL and have had kidney transplants over the last few years. Presently, they are otherwise stable. I also have a half-sister, Robin, 38 in PA. She is unaffected by VHL as she is from my mother’s 2nd marriage, but has cervical cancer to deal with instead. We are all there for each other, especially during a crisis, but otherwise we try not to make health issues our focus.

My goal for now is to seek out possible treatment for both my optic nerve tumor and macular hole. I’m always open to alternative medicine and am trying to focus on a healthier lifestyle.

I am blessed to have so many wonderful, giving friends. You’re all like angels on earth for me. I am also blessed with a great immediate and extended family. Most importantly, I have a wonderful, supportive husband, Steve. In addition to the normal stresses of life, he has the added stress of dealing with my situation. I am doubly blessed with two beautiful children – Tyler (13) and Alyssa (6).

I have no plans of checking out soon and have no time to pity myself. I have grown to appreciate life differently and try to enjoy each day as if it’s my last. I am a SURVIVOR.