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Brain Tumor
Facts
Read about facts and statistics of brain tumor.
In Honor of all brain tumor patients.
The amazing people featured below are all part of the San Diego Brain Tumor Foundation Family. Their continuous courage and endurance during their struggle with a brain tumor is an inspiration to us all.
For easier navigation, please choose a person below:
Ted A.
Name: Ted Abel (age 60 as of 08/08/10)
Home: Poway, CA since Nov. 2005
Family: Married 32+ years to Debbie
Occupation: Freelance Graphic Designer, TA Creative Art & Design since 1991
Hobbies: Hiking, walking, working out, socializing w/friends, creative arts, listening to music, and enjoying simple pleasures
Ted’s Story: I was diagnosed with a Brain tumor in August of 1988 after a first focal seizure episode on Jan. 10, 1988. It was located on my right parietal lobe about the shape and size of a thumbnail. The Pathology came back as a a benign Oligodendroglioma. I then had chemo treatment and was observed until Dr. Gene H. Barnett, Director of Neurosurgery at the Cleveland Clinic, OH recommended I have tumor resection surgery on Jan. 11, 1993. I was seizure free for 10 years thereafter until late 2004 when I had a recurrence and started a new chemo treatment in Feb. of 2005, a brief Accutane pill treatment protocol in Apr. of 2005, and then radiation therapy later on in Aug. of 2005. At that time we were also in the process of selling our home in OH and moving to CA. I was introduced to the San Diego Brain Tumor Foundation's support group after attending the NBTS SDWalk in 2007 at Mission Bay Park. I have been involved with SDBTF ever since.
How SDBTF Has Helped: SDBTF has helped me share my experiences and advocacy by giving hope for survival at our BT patient support group meetings and within our BT community. I help SDBTF by offering my assistance in collaborating with other local businesses and organizations and reaching out to the San Diego County community to increase SDBTF awareness. SDBTF has been there for us with financial assistance for my medical premiums and co-pays, plus partial mortgage payments a few times when we needed them the most. SDBTF direct assistance programs and support for BT patient's day-to-day needs is an invaluable resource for many patients who would be in dire straits without such. SDBTF has also been there for me during my most recent BT recurrence with a new lesion diagnosis in April of 2010 and the participation in a new Clinical Trial administered by UCSD Dr. Santosh Kesari, Director of the Neuro-Oncology Program, Dept. of Neurosciences.
Ted’s Advice for Others: My advice for everyone is to cherish each moment you have with close friends and family, stay positive, and advocate for yourself and others in medical crisis mode. Advice to supporters: Give to Give...not for the write-off.
Lecinda B.
Name:Lecinda Bennet
Home: Coronado, CA
Lecinda’s Story: On July 14th, 2011 I went to sleep thinking about how good my day had been, hadn’t thought much about the next day other then what to do in my rented apartment on the east coast. However when I woke up on July 15th, my life changed forever. I had a grand mal seizure and nearly bit through my tongue, I had no idea what had happened or why this was happening. My family came to my rescue and got me to a Doctor and an MRI. This MRI showed a lump. My family brought me back to San Diego and started contacting Doctors who could help me. I met with an amazing Neurologist who was the first to actually tell us that I have a Brain Tumor. We had a slightly huge hurdle to cross, I didn’t have insurance, didn’t have a full time job and wasn’t able to pay for any of this. Someone told us to contact another Cancer Society in hopes of getting funding, assistance and information. However after hours on their phone trees, attempting to register, we were told that all spots have all ready been taken for Brain Tumor funding.
After 5 days I was blessed to remember that a very amazing person in my life was involved with a San Diego foundation. I reached out to a member of the Board Directors and told her what had happened, and immediately I was blessed and the amazing team came to my rescue!
During all this when I was awaiting my actual resection/removal surgery I didn’t know if my life would ever be the same, if I would be ok, or if I could ever be controlling my own life. Overall I was positive and knew that I would be ok, but a few times I would have sudden moments where I would burst into tears freaking out about it all. Then, I would breathe and remember that I have people here that are helping me find out everything and help me stay me strong through all of it.
September 28th, 2011 I had my removal surgery. For two days before my operation the doctors had me look at different photos for me to recall during surgery. What an intense, interesting, and amazing experience surgery was as I was awake for 2 hrs of the 8.5 hours. I was luckily able to get stronger and better every day as they removed the majority of my tumor.
How SDBTF Has Helped: They set up payments for my seizure medication, pain medication and helped me get involved with the best team at UCSD, Moore’s Cancer Institute. With the help of this amazing group and my family, my flights to San Francisco were organized, where my surgery was. The grants from SDBTF also covered housing for me and my family. San Diego Brain Tumor Foundation does so much everyday for those of us that have a new way to look at life, through the bad, the uncertain and the good. They make sure you know that they are here for those in need, and those that need someone to talk to. They bring awareness of what a hurdle this disease is, and most importantly SDBTF helped me get across the hurdle to find myself, my freedom and my dreams again.
Lecinda’s Advice for Others: What the future means for me is still uncertain, but the most important thing I cherish everyday is to wake up next to those that I hold dear. Through it all, the past, present and future, I am thankful and humbled by the hard work everyone does to help me.
Dan C.
Name: Dan C.
Home: La Mesa, CA
Family: Married for 7 years with 3 kids, ages 12, 9 and 5
Occupation: Electrical Contractor
Hobbies: Anything outdoors- climbing, mountain biking, hiking, enjoying the beach
Dan’s Diagnosis: First tumor was diagnosed in August of 2001. The second tumor in 2006 and it metastasized in December of 2007
How SDBTF Has Helped: SDBTF has definitely helped financially especially with rent assistance. Last year at this time, I was turning away work because I was going through chemo and could only do so much. This year there isn’t much work anywhere so the help with rent has been wonderful. The support from the monthly group has been a big helpas well. The other survivors are very inspirational- I have gained a lot of knowledge from the group.
Dan’s Advice for Others: One piece of advice is to stay active, especially during chemo- keep moving around. Keep a positive attitude. The most important thing though is probably to be patient. Fighting and beating cancer doesn’t happen overnight so you have to have patience. The doctors and medicine are so good these days so trust them!
Anna E.
Name: Anna Espinoza
Anna's Story: On Thursday, December 11, 2008 I was diagnosed with a left acoustic schwanoma. The brain tumor was growing in the left balance nerve. I elected to have surgery on March 4, 2009. As a result, I’ve lost hearing in my ear and now have a severed balance nerve. With the severing of that nerve I’ve had severe vertigo for several months. To this day I still experience various levels of dizziness. It’s a daily challenge to walk or talk but it’s important for me to continue to work and get back to a daily schedule. Unfortunately, after a few months a new tumor appeared in the same area. At this time I am evaluating all options available. In closing, I look to staying positive and making each day count. I have no regrets of the choices I’ve made personally or professionally. From those choices I’ve gained lots of experiences which have made me a stronger person. I am grateful to my family and friends for their support and I look forward to the future come what may!
How SDBTF Has Helped: SDBTF provided financial assistance within the foundation’s guidelines and prepared my family for the upcoming months of my illness by explaining the process of this medical procedure. I thank everyone who has made donations to the SDBTF. Without those donations, the services that I have utilized would not have been available to me or the many others that have been stricken with a brain tumor.
Karon H.
Name: Karon Haze
Karon's Story: Even though it was over two years ago, we remember it like it was yesterday—Karon suddenly developed double vision and started getting headaches. At first we thought it was her eyes/contacts, so she went to see her eye doctor. From that visit we started to realize it was something bigger. We were referred to a neurologist and Karon got her first CT scan on a Friday afternoon. I remember sitting in the hospital with the kids not knowing and not understanding what was happening. The results were not going to be ready until Monday and we had to wait through the weekend. While it was only two days, it seemed like 100. Instead of waiting for the results via the phone, we decided to pay the doctor a visit first thing Monday morning. This is when we found out that Karon has a benign brain tumor on her brain stem.
Once we got the results we were referred to neurosurgeons Dr. David Barba and Dr. Kevin Murphy from the UCSD Medical Center for the next step. We came to find out that the tumor had damaged the optical nerve, therefore causing Karon's double vision. We also learned that brain tumors are more common than people realize.
Our next step was for Karon to get stereotactic radiosurgery. Stereotactic radiosurgery (SRS) is a form of radiation therapy that concentrates high doses of radiation on very precise areas. Unlike other forms of radiation therapy, stereotactic radiosurgery better focuses the radiation beams on the abnormal cells, and limits impact of nearby healthy tissue. This is particularly important in the brain.
Our hope was that this would kill the cells and stop the tumor from growing. Dr. Murphy and his team were amazing through this whole process. Once this was complete, Karon had to get CT scans every six months to ensure that the tumor was not growing (she now has yearly scans). During this time she also got eye muscle surgery from the Shiley Eye Center in La Jolla. This was necessary as the optical nerve was permanently damaged from the tumor. This surgery helped correct the double vision she had been living with for more than a year.
During this whole process Karon remained strong in faith and in life, and continued to be a great parent, wife and elementary school teacher in Chula Vista.
With this tumor never going away, we realize it is a blessing for us. It is a constant reminder of how important life is and how the people around you make such a difference. Our faith and the support of people around us have really helped us understand the bigger picture in life situations.
This is why the time is now to share this family story with you. Karon found out about an event coming up on September 22, 2012; it's the San Diego Brain Tumor Foundation Walk.
The San Diego Brain Tumor Foundation is a non profit foundation that brings comfort to those who have brain tumors. This comfort and support comes in the form of bringing meals after surgery, helping with medical costs, driving people to doctor appointments, and many other things.
We saw how important this is first hand.
Maybe you know someone who could benefit by this foundation, or maybe it's a cause that you can get behind. I have enclosed the link for the walk and the link about the type of surgery Karon received.
We know this could have been much worse and that people suffer every day. This is why we want to be proactive and use this everyday reminder as a blessing to get the word out to others.
Thank you!
Joe, Karon, Angelica, Jordan. "The Haze Family"
Please visit the links below for more information:
Eve-Clair H.
Name: Eve-Clair Hetzel
Home: Chula Vista, CA
Occupation: Realtor
Eve-Clair's Story: I was diagnosed with a Meningioma in middle of my head with tentacles on the optic nerve and right eye and ear. This was discovered during my treatments for recurring Breast Cancer. Dr. Ghosh at Alvarado Hospital September 2004 was able to remove 97% . The remaining 3% was removed by Novalis Shaped Beam Radiation. No recurrence as of yet. My recovery was slow to moderate. I experienced one-two seizures after the surgery until August 2007; none since. I am no longer on anti-seizure meds. My balance was off for about 2 years, which made me walk like a drunk. Deficits in speech and typing skills diminished as time went on, and now very little deficits exist.
How SDBTF Has Helped: SDBTF helped me as I went through this and during my recovery. I needed the support to assist in dealing with the deficits after surgery and during recovery. I attended the support groups until my husband passed away two years ago.
Eve Clair's Advice for Others: My advice is to always believe that God will never leave you and He will help you through in various waysNikki N.
Name: Nikki N.
Home: San Diego
Family: Married
Occupation: Retired healthcare
Hobbies: cooking, gardening, running, sewing, reading, fitness, dog, hiking
Nikki's Diagnosis: Subependymoma tumor in my left ventricle. Diagnosed in 2007 and now a 3 year survivor.
How SDBTF Has Helped:
The Foundation has helped me a great deal by providing a support group. Knowing there are others survivors to talk to is very important in your recovery.
Nikki's advice for Others:
Stay positive and active physically and mentally. Never give up hope and try to get back in a regular routine as soon as possible.
*Nikki was featured in The San Diego Union Tribune in June of 2008 for her participation in the Aflac Iron Girl Del Mar event. http://www.signonsandiego.com/uniontrib/20080620/news_1s20breakout.html
Valerie R.
Name: Valerie R.
Home: Currently living in La Jolla
Family: Husband, 2 year old son, and soon to be newborn son. I'm originally from Las Cruces, New Mexico where the rest of my family lives.
Hobbies: I'm a clinical psychologist in private practice and hobbies include running, hiking, reading, and staying busy with family activities.
Valerie’s diagnosis: I was diagnosed with a menigioma in 2002 in the right temporal lobe. It was successfully removed a month after diagnosis by craniotomy.
How SDBTF has helped: The SDBTF has served as a great inspiration to me. The support groups have been a wonderful way of connecting with others and sharing emotional support as well as gaining practical advice about navigating ones way through the often complicated medical system. I have met incredible, giving people and am constantly motivated by other people's stories.
Valerie’s Advice for Others: My advice to others would be to take people up on their offers to help. It's easy to feel like you would be a burden on others, but they likely would not be offering unless they genuinely meant it. Also, involvement in the support groups is extremely beneficial.
Chuck R.
Name: Chuck R.
Home: San Diego, CA
Family: Married with 2 kids
Occupation: Landscape Business Owner
Chuck’s Story: I’ve owned my own landscaping business for about 32 years. While working with my crew on January 15, 2010, around lunchtime, I started experiencing double vision. I ended up in the emergency room at Sharp Memorial later that day where I was examined and given a CAT scan that revealed a brain tumor. Ten days later an MRI revealed two tumors: one in the left frontal cortical region and a smaller one nearby. In March, I had a biopsy that determined that the larger of the two was malignant-an Anaplastic Astrocytoma Stage III.
Unhappy with my neurosurgeon’s attitude and prognosis for long-term survival, we secured outside medical opinions from Dr. Keith Black at Cedars-Sinai in Los Angeles and Dr. Kesari, a neuro-oncologist at UCSD. Both hospitals have an advanced approach for treatment of brain tumors. Dr. Black ordered a Functional MRI which showed his Tumor Board that the speech and motor areas were affected; thereby indicating that surgery was not advisable at this time. I have completed days of radiation, Temodar and chemotherapy, and I am on the road to recovery.
How SDBTF has helped: Both Renee’ and I are grateful for the advice, support, and friendship we have received from the SDBTF meetings every month, particularly the advice that patients need to be proactive regarding their care and that having an advocate is imperative. It would be really impossible to go through an illness like this on your own!
Chuck’s Advice for Others: Throughout this illness, I have learned that emotional support is very important. I have always been on the “giving end” and have now had to be on the “receiving side”. For me, that has been hard to accept. I appreciate the many hours/days my wife, Renee’, has spent researching information on doctors and insurance issues. I’m also very thankful for our family, friends, and our church that have supported us so faithfully during this challenging past six months.
Scott W.
Name: Kenneth Scott ( age 46 )
Home: El Cajon, CA
Family: Single father of two since 1985 (Scotty, 28 and Tony, 24)
Occupation: Chef until September, 2002
Hobbies: Cooking, riding my Harleys, collecting and listening to music, and going to the gym
Scott’s Story: I was first diagnosed with a Brain tumor on July 20, 2001 and had surgery on July 24, 2001. It was a large mass in my right temporal lobe about the shape and size of a bar of soap. The Pathology came back as a malignant Astrocytoma grade 2-3. I chose to skip radiation and chemo so I could return back to work as a Chef by October 5th. It was at this time I was introduced to the San Diego Brain Tumor Foundation's support group.
How SDBTF Has Helped: SDBTF has helped me understand and learn about my affliction and how to live with it by sharing my feelings and concerns with other people who also live with brain cancer. The SDBTF has been there for me with financial help for my medical premiums and co-pays a few times when I needed them. The SDBTF was also there for me during my latest diagnosis and surgery for a second brain tumor in June 2007.
Scott’s Advice for Others: My best suggestion for someone in this situation is to find a higher power, maintain a great sense of humor and reduce as much stress as possible