What is VHL?

Susan has a rare, genetic disease known as Von Hippel Lindau, or VHL, for short.

A brief explanation of VHL:
The human body has lots of chromosomes and there is one in particular that is responsible for preventing random tumors from developing in the body. If a person has VHL, this chromosome is either damaged or completely missing. These tumors can develop just about anywhere, such as the kidneys, the liver, the pancreas, the spine or the brain. It can affect your eyesight or, even your hearing. A person with VHL can have a tumor in just one location or they can be in several places. Usually, only the tumors on the kidneys are cancerous, but that doesn't make the others any less serious.

Her experience with VHL:
She hasn't been genetically tested for VHL but it's really not necessary. She found out a little over two years ago that she has a tumor on her spine that is consistent with the manifestation of VHL. She goes to the doctor every 4-6 months to follow-up and for monitoring. While she has had some issues such as nerve sensitivity in her left hand or some discomfort around her spine area when overexerts herself, for the most part, she's done well and lived a normal life.

Recent Developments:
She noticed earlier this year that her neck and shoulders would get tense and hurt. For a long time, the pain would come and go. However, eventually, it got to the point where it was constant. She would hurt to some degree constantly...some days a little, others a lot. However, as stubborn as she is, she just thought it was stress and being overworked.
When she went to the doctor, she told him what had been going on. He told her to cut back on work for a month and come back and we'll see what happens. She did as instructed and the day she went back, she hadn’t gotten any better. He sent her the next week for a MRI and she went back the next day for the results.

The Results:
Her tumor has produced a cyst. The tumor and the cyst is on her cervical spine. The cyst has gone down her spine a little and it has gone into her brain stem. The cyst is interfering with the flow of fluid that comes off her brain and goes down her spine. The human brain has canals that this fluid flows through to get off the brain. The largest part of her cyst is at the last canal. With continued, and certain growth, the cyst will block the canal and the result will be fluid on the brain. This is not good!

Her doctor told her that the cyst and the tumor must be removed surgically. There is no medication or alternative treatment available, such as radiation. The tumor is not cancerous but the situation is serious.

Her Dilemma:
At first, she made the decision to wait for surgery. Her decision was based on timing and finances. Not her health. She figured that if she could make it to the first of the year, she would have time to pay some more things off and make some changes to her insurance. Over the next several weeks, she went back and forth about what she should do, wait or not wait. She couldn't help but to think of the financial burden this would have on her and her mom, who will be her caretaker during her recovery along with her best friend. She struggled with this burden and responsibility. She figured that as long as she wasn't getting worse, then she could wait, but the thought of the pending surgery and the affects the tumor/cyst have on her physically have been very overwhelming.

The Decision:
She finally made the decision (with the help of her mom and best friend) to not postpone the surgery for the beginning of the year and to make the appointment to schedule it. She made the appointment for Nov 2 to tell her doctor her decision.

The Doctor's appt:
She went to the doctor on Nov 2 with her mother. They scheduled the surgery for Nov 27th at 530am. This is a very serious surgery as the doctor will have to remove the cyst from her brain as well as the tumor from her spine. She'll be in the ICU after surgery for 2 days and then a regular room for 3 or 4 days. Once released from the hospital, she will begin her recovery at home.

What can you do:
Pray - Susan has been in prayer since before this has begun. Prayers are always welcome and necessary. Please pray with Susan for strength during the time leading up to the surgery. Pray for the Doctors and nurses and hospital staff that will take care of Susan. Pray for Susan's mother who is worried about her only daughter. Pray for her family, and pray for her friends who love her.

Support - Susan's family does not live in this area. Most of them will not be able to come down for her surgery. As Susan recovers, her and her mother will need support.

Scarves - While Susan recovers and is able to travel and go places, she'll need scarves for her head. Because of the incision location, she won't be able to do anything to her hair for a while. If anyone knows of a place to find scarves, please let me know at melodybailey@gmail.com.


What's next:
I'll update this leading up to her surgery. You can leave your prayers for Susan here and she'll be able to see them as well.