STORIES

One of UnlockingBrainTumors.org's core beliefs is that we can make a difference by putting faces and names to this dreadful disease. By sharing stories of survivors, and also those brain tumor victims who are no longer with us, we believe that we can continue to bring about the kind of awareness that will help us to reach our goals. If you are a survivor, we welcome your story and the inspiration it will bring to others. If you have a loved one that has lost their battle, we welcome the opportunity to honor and remember them. Please submit your story below.

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STEVE

Everything began to change for Steve Coffman, our Project Sponsor, in April of 2003, when he was diagnosed with head and neck cancer. In an instant, Steve went from a successful executive to another individual in for the fight of his life. Like all of his previous challenges, Steve was prepared to tackle cancer as well. Lacking the full stamina he needed to run a business and wanting to focus on his health, Steve stepped aside from work, and was successfully managing his disease. But during a routine cancer scan in 2005, doctors discovered a GBM brain tumor, one of the most serious and deadly brain tumors. Suddenly, Steve's battle had become that much more difficult, and his prognosis that much more serious.

When Steve was diagnosed with cancer and forced to step aside, a great many people were affected. In addition to family, friends and loved ones who were now a part of Steve's fight, hundreds of employees, colleagues and customers who had the pleasure to work with Steve over the years suddenly had to adjust to his absence. Cancer and a brain tumor didn't care that Steve was a very successful, well-liked executive...READ MORE ABOUT STEVE HERE

TOMMY

My brother Tommy had his first brain surgery at the age of six. I was nine at the time, and did not realize the graveness of the situation. My parents took him to New York, where he stayed for many weeks. When Tommy came home, his head all bandaged up, the only thing he cared about was the party we threw for him and the fact that there were signs and balloons! Tommy went through radiation, and every six months he returned to New York for follow-up MRI's and doctor visits. For 17 years, things remained stable. And then, in 1998, there was a change on the MRI. Another surgery in New York, followed by close supervision and additional MRI's, now done more frequently in Cleveland. Unfortunately, Tommy's brain tumor kept us on our toes, and more surgeries, gamma knife, and chemotherpies, and clinical trials followed. Tommy seemed to be able to stay one step ahead, but in October of 2006 Tommy's and our whole family's lives changed. Tommy suffered a brain herniation, and the doctors told us we had only a few days left with Tommy. But Tommy managed to hang on for 10 months! We were able to celebrate one last holiday,and birthday, with Tommy. Towards the end, Tommy lost most of his vision and hearing, and was confined to a wheelchair or bed. But to every visitor that came by and asked Tommy how he was, he responded: "Great! I love my life!" Tommy decided he had enough and went Home on August 31, 2007. His gentle spirit and infectious laugh are incredibly missed. We were honored to be a part of such a wonderful person's life.

SANDRO

Sandro Salvatore was born and raised in Italy where he lived and worked until, in 1975, he was hired as a mid-level manager by a company that was expanding its offshore oil services operations to the North Sea. He spent the next 5 years based in Aberdeen, Scotland, until, in 1979, he was hired by the world's largest off shore oil services company and, after spending a year at their Aberdeen office, was relocated to the company's headquarters in Houston, TX.

Shortly thereafter, Sandro was assigned to the Mexico City office where suddenly the company's operations had increased ten-fold after having been selected as the main contractor in charge of bringing under control the explosion of a major offshore oil and gas well in the Gulf of Mexico.

It was in Mexico, in April of 1995, that Sandro experienced a seizure which was later found to have been caused by an orange- sized tumor in the right frontal lobe of his brain.

An MRI done upon admission to a hospital in Texas confirmed his was probably an astrocytoma which required urgent resection. The surgery, performed later that month, was a complete success but the pathology report identified the tumor as a GBM. Back then, the protocol after surgery consisted of radiation followed by chemotherapy. After second opinions from specialists in Europe and at Johns Hopkins University, Sandro decided he would accept the radiation treatment but declined the chemotherapy. Alas, before radiation treatment could commence, a routine follow-up scan (MRI) revealed a tiny spot in an area adjacent to the location of the original tumor which the neurosurgeon recommended should be removed ASAP. This second surgery, so close to the first, put Sandro's body and his recovery capabilities to a serious test but it was another resounding success. He tolerated the 6-weeks of radiation pretty well and everyone was encouraged (if not amazed) by the continued good news brought by each follow-up MRI; all showing no sign of recurrence. After 5 years, celebrations were in order and everyone close to him thought Sandro had "licked" the GBM for good. However, in November 2006 (over 11 years after he was first diagnosed); he started having some disturbing symptoms which prompted his neurosurgeon to order an emergency MRI. It revealed another massive tumor that had formed in the same general location as the first. The third surgery was not easy and his neurosurgeon was only able to remove approximately 95% of the mass. Again, pathology confirmed this was a GBM.

At this point, Sandro moved to Houston (from McAllen, TX) and consulted the Brain and Spine Center team at MD Anderson Cancer Center. The initial perplexity at such long-term survival quickly developed into a plan of attack which contemplated everything from another surgery to more radiation and chemotherapy. Finally, after agreeing that surgery was not yet called for and that radiation may be a problem due to having received a full dose 11 years earlier, the team at MDA opted for a 2-year course of Temodar (chemotherapy) coupled with close MRI observation of the brain. This seemed to be very effective until, 8 months into treatment; some small shadows appeared on the scan. The follow-up scan, 30 days later, revealed a mass was once again developing in the right frontal lobe and Sandro was faced with a fourth surgery. After meeting his new neurosurgeon and having discussed and reviewed all risks involved, surgery was set for Nov. 14, 2007. Incredibly, in what had been Sandro's longest surgery to date, this 4th one was an almost total success with the surgeon reporting he had removed up to 98% of the tumor.

Currently Sandro is well into his final leg of radiation treatment combined with Temodar and anxiously awaiting for February 14, 2008 when he is scheduled to receive an MRI scan which will determine how successful his latest treatment has been.

An important footnote is that Sandro has remained an exceptionally motivated and well-informed patient throughout these many years facing brain cancer. He has missed very few days of work and is therefore still gainfully employed as a sales and marketing executive working in Houston, TX for a Utah-based public company.

Without taking anything away from the undoubted qualities of his medical staff, past and present, Sandro cites his network of family and friends, his spiritual life and his relentless will to fight as the main ingredients for his success.

ROCKY

Rocky Anobile was born at home on February 5, 1931 in Pittsburgh, PA. As a boy, he loved adventures, like rafting on the Monongahela River. He joined the Army at age 17 and served in Korea. He married Peggy in 1954 and had 3 children, Karen, Marilyn, Diane. After traveling to find good jobs to support his family, he worked at General Motors in Ohio for 28 years, retiring in 1994. He loved retirement until August 2005 when a fall in the driveway signaled what would be the end of life as he and his family had known and the start of the fight of his life.

He was diagnosed with anaplastic oligodendoglioma grade 3 with the genetic deletions. He had his treatment directed at UPMC Pittsburgh, starting off with radiation and Temodar. Nine months later, the monster tumor returned, this time growing deep into the brain. He had Gamma Knife treatment June 2006. Six months later, suspicious symptoms came back, this time with 3 new tumors. But the original one was still gone. Gamma Knife was applied to the three new tumors January 2007. Problems from steroid withdrawal started soon after with doctors disagreeing what was the cause of the declining symptoms. A CT scan showed nothing. Finally the day after Easter 2007 in April, it appeared he had a stroke and was rushed to the ER. An MRI done there showed his brain was swelling without the steroid and had caused stroke like symptoms and stroke like damage. Physical therapy, occupational therapy, speech therapy became new visitors to the family both in rehab units and at home. August 2007 brought about a colostomy after a bowel perforation. Doctors shared that steroids make persons more prone to bowel perforations. The colostomy was a setback, but PT and OT are close to getting Rocky back on his feet after being wheelchair bound since August. Coming from a totally independent person to one who needs help with everything now has been tough on Rocky and his family but they are determined to make it.

SARALIE & DARCY

In August, 2006 my 37-year-old sister Saralie was diagnosed with GBM. After recetion, she did well until the return of the cancer in November 2007. Seven months after my sister's diagnosis, I found out on my 40th birthday that I had a meningioma, a non-cancerous brain tumor wrapped around my optic nerve. I have a crainiotomy on April 9, 2007. An easy surgery for a non-cancerous brain tumor turned into a much more challenging situation as the meningioma was wrapped on my carotid artery. The surgeon told me that while my only symptom was vision loss, in a matter of week I would have had a stroke and it's hard to tell what the prognosis would have been following that. It's important for everyone to learn that all brain tumors, cancerous or not are life threatening, such as in my case. My sister and I are thankful for every day and our wonderful physicians. But, there is more research needed. Is it just a coincidence that sisters have two genetically different brain tumors? While doctors tell us there is no genetic link, more research needs to be done.

DR. WILLIAM H. KEHOE

Dr. William H. Kehoe, my step-father, was not only a man of great intelligence and integrity, but a man dedicated to the Native Americans in the Southwest. For 30+ years, he traveled the southwest, visiting various reservations and providing allergy and immunology services to the people. First as a civil service naval officer assigned to the Bureau of Indian Affairs and then, after retirement, as a private contractor to the tribes, he traveled a 5 state territory helping the Indians. His love for these people was immense. He chose to use his medical education to help those who probably would go without these services.

So when he started showing signs of confusion to space and time, we all wrote it off to job stress. Then it got worse. He would do things like go to work on a Sunday and wonder why nobody was there... he thought it was Tuesday. Or, when he flew to Albuquerque to see patients...and wasn't due there for another 10 days. In May '06, upon returning from one of his trips, we took him immediately to the ER and told the doctors that we thought it may be a brain tumor. Of course, at first, they thought that we were nuts. One night stay later and many tests, scans and imaging, we were informed that he, in fact, did have a brain tumor and that they wanted to schedule for biopsy ASAP.

The next day he went in for the surgery and when the surgeon came out, he was not smiling. And then, the news...a very aggressive and fast growing tumor grown into the brain. A few days later the pathology came back and we knew.... Astrocytoma Grade 3+.

We were blessed and very fortunate to be at Barrows Neurological Center in Phoenix and in the hands of some of the finest brain surgeons, neurologists and oncologists on the planet!! What followed was a craniotomy to remove what they could, months of chemo, a bout of radiation, and steroids that made him gain 40 or 50 pounds and age 30 years. Then we had the shunt put in his head to help with the fluid retention…then another hospital stay because they were afraid that the shunt had gotten infected.

Through all of this, he maintained his sense of humor and never complained or said "why me". He picked himself up and went to war with this thing in his head and never complained! That to me is amazing!!

On April 18, 2007 at 9:50 am, my father lost his battle and passed quietly in his bed at home surrounded by everyone he loved. Almost 11 months to the day of the initial diagnosis he was gone. BUT... Here is what is so wonderful though…we had 11 wonderful months together!!! Relationships that were once stressed were mended, things that needed to be said, got said and he was able to plan his memorial…right down to the song that he wanted played! And in the end while in a coma, our priest took his hand and verbally led him down a glorious path and then told him that it was ok to go and that we would all be fine. SO HE DID!!!

Here we are almost a year later, missing him terribly every day!! And then, out of the blue, the phone rings. My mother just found out that the BIA in Reno, NV is building a new library on the Indian reservation there and that they are naming it in memory of my father. That is the kind of person that he was!! He impacted everyone who crossed his path! Those of us who called him "dad" or "husband" or "friend" or, just simply "Doc" were blessed by his presence in our life. He will truly be missed!

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