This week’s story comes to us from Kelli, a member of the NBTS Patient Support Network. Kelli, age 35, is a survivor diagnosed in 2006 with a pilocytic astrocytoma. She describes her experience below.

Please tell us a little about what you were doing when you were first diagnosed or had symptoms.

The only apparent symptom I had was amenorrhea and my husband and I were trying to start a family. An MRI confirmed a tumor present in my hypothalamic area and attached to my optic nerves. Looking back, I did experience many headaches, but I always thought it was stress-related or from working at a computer all day. I was at work when I received the phone call from my doctor with the shocking news that I had a mass in my head. I immediately broke down.

What is one piece of advice you would have for someone who is newly diagnosed?

To let family/friends help you. It’s hard to take advantage of help when offered but when you are dealing with so many emotions you need to let others be there for you. Also, take advantage of organizations such as the NBTS. When I was diagnosed, I knew nothing about these organizations and never thought to look for them. I discovered them 3 years later and wish I had known sooner because they offer so much information and support.

What have you learned from this experience?

I learned what matters most in life. My perspectives changed and I made major changes in my life. I started working less hours and made more time to be at home with my family. The main thing I learned is that I needed a career change. I am going back to school so that I can enter the healthcare field which is where I belong. I want to do something more meaningful and fulfilling. You learn what type of person you really want to be. And I have no regrets because I eventually was able to have that child and she is the most amazing gift.

What is the most helpful thing someone has said or done for you?

The most helpful thing was having my husband and parents by my side every step of the way. They all took really good care of me before and after my surgery and were a huge support system. Also, it was just amazing the people that reached out to me to wish me well and took the time to send a card, call to offer their support, or visit me in the hospital.

If you use a creative outlet or form of expression?

The form of expression for me has just been sharing my experiences and being there for other people going through a difficult time no matter the situation. “Perspective” is a powerful word and I try to encourage other people to understand what finding it can do for you. I have also done a lot of writing lately about my experience while applying to schools and for scholarships and it has been therapy for me. I really enjoy writing about it and I seem to keep learning something new about myself.

Describe your experience/journey in three words:

Emotional; bittersweet; fortunate.

Did you name your tumor?

No and if I did, it wouldn’t be a nice name!

If you could pass legislation to help the brain tumor community, what would it be?

Obviously, more funding all around to find a cure but specifically to designate more research to finding a cure for young children diagnosed with low grade astrocytomas. It is the most common childhood tumor and also the most underfunded. Although they are classified as low grade, they can occur in very critical areas of the brain and be life threatening and often inoperable. Most of the treatments available to them will only cause long-term side effects and it doesn’t seem fair to me that they have to start living this way at such a young age. And being so young only means more and longer exposure to radiation and chemo.

If you could have your own personal theme song, what would it be?

“Walk On” by U2.

Did you or do you participate in any support services? If so, what are they and how have they helped?

It is something I wished I had known because 3 years later, I find comfort in knowing there are people out there feeling the same way I do. The online communities and social networking groups have been very helpful for me in finding support. I have found other people to talk to about our ongoing experiences.