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Flower Mound mom concludes long medical journey

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Alecia Everett of Flower Mound hoped for an uneventful, normal holiday season for 13 years. This year her wish came true.

In 1999, Everett began experiencing mysterious medical symptoms. They began as chronic headaches and eventually expanded to include earaches, an irregular menstrual cycle and continued lactation following the weaning of her third child. The symptoms started a medical journey in search of a definitive diagnosis.

“We’d just moved from California in the spring [of 1999] and initial medical opinions were that I was just tired from the move with three young children and getting settled someplace new,” said Everett.

After a few years of living in North Texas with unsuccessful diagnoses and treatments– including several for allergies—Everett began experiencing tingling in half of her face, which increased in frequency.

A 2003 CT scan found nothing and lab results came back normal.

Finally, a 2005 test for Acromegaly, a rare pituitary disease, came back positive. The disease, affecting only 60 of every one million Americans, releases abnormally large amounts of human growth hormone that can cause benign or cancerous tumors and a condition commonly known as giantism. The test result led to the discovery of a 2-mm sized benign tumor on Everett’s pituitary gland.

“The small tumor on the left side of my carotid artery was surgically removed and I thought things were controlled and life would be normal,” she said.

Outwardly, Everett’s appearance has never displayed anything other than an attractive wife and mother involved in the daily routine of her family.

“I’m not a tall woman and the human growth hormone had caused only a very small growth in the size of my hands and feet … nothing like André [René Roussimoff] the Giant. Unless you’re medically savvy and looking for a symptom of Acromegaly, you’d never notice anything.”

It was during post-surgical monitoring in 2007 that new problems were diagnosed.

The surgical mesh used during her surgery had become dislodged leading to spinal fluid leaks and a fungus infection. Removal of the mesh would now mean going up through the nose into the sinus cavity and a “cave”under the brain.

Everett began her search for a neurosurgeon.

“The skill of the surgeon is vital to maintain the functioning of the pituarity,” she said.

Researching specialists led her to Dr. Daniel F. Kelly, director of the UCLA Pituitary Tumor and Neuroendocrine Program until June 2007, then director of the Brain Tumor Center at the Saint John’s Health Center and John Wayne Cancer Institute in Santa Monica, Calif. He is an internationally recognized neurosurgeon in the field of minimally invasive transsphenoidal and transcranial removal of brain, pituitary and skull base tumors.

Once Everett was accepted for treatment by Dr. Kelly and her insurance company approved, she went to California prepared to have surgery. That’s when life took an unexpected turn, again.

“We’d driven to California and I’d started the prep for surgery when we were told I was pregnant with our fourth child,” Everett said. “We had no idea that was even possible, because my husband had had a vasectomy. So, our ‘miracle baby’ put the surgery on hold.”

After the birth of her daughter, Dr. Kelly reviewed her updated tests and determined surgery was no longer possible.

In 2009, Everett’s continuing research on her pituitary condition led her to Dr. Ian McCutcheon, President of the Texas Association of Neurological Surgeons and in the Department of Neurosurgery at MD Anderson Cancer Center in Houston, where he heads a pituitary tumor program with a caseload of more than 100 patients annually.

“By 2011, it was found that the tumor had returned and it was very aggressive; growing to four-times its original size,” said Everett. “The tumor was still benign, not cancerous, but was 8-mm in size and was now really close to my optic nerve. It had to be treated or I could go blind.”

Because surgery was no longer a viable option, external radiation therapy was the medical diagnosis.

External beam radiation therapy is the treatment of cancer and other diseases with penetrating beams of high-energy waves, or streams of particles, delivered via machines.

The use of photon therapy is intended for precision targeting by uncharged particles of tumors which have spread, but can damage healthy tissue surrounding the target tissue when exiting the body.

It was determined that a better option for Everett was proton therapy, a particle therapy in which the dose of energetic protons increases while penetrating the targeted tissue, but then drops to (almost) zero as the beam retreats.

“I was really nervous about brain radiation, and the newer robotic Cyberknife treatment required the tumor to be at least 4-mm from my optic nerve; mine was only 2-mm away,” said Everett.

“Then I met Dr. Anita Mahajan, the director of MD Anderson’s Proton Therapy Center. She put me at ease with my decision immediately. Proton therapy didn’t scare me like other types of brain radiation. I was able to maintain my normal routine during treatment.”

Between Sept. 10, 2012 and mid-October, Everett had 28 treatment sessions of 20-minutes each on a Monday through Friday schedule.

“We were very lucky to be able to relocate the whole family temporarily down to Houston,” said Everett.

Her husband was able to work from Houston and she was able to continue home schooling her children in between treatments from temporary housing nearby.  The entire family was also able to meet the doctors and staff, who answered their questions and gave them a sense of assurance.

“I was concerned that I might lose my hair or have other side effects, but I only used eye drops for a little dry eyes and I did get pretty tired; not too bad, though,” she said.

The proton therapy gantry is housed in the pediatric wing of the hospital, so Everett developed emotional ties with other families who had someone undergoing therapy.

“We met a family from Denmark whose 8 year-old son had a brain tumor,” she said. “We’ll probably remain friends forever. It was a good experience in a bad situation.”

The reason Everett has chosen to share her personal story is to tell people to do their homework about their health and to get second, third, or as many medical opinions as necessary to feel comfortable with a medical decision. She points out that pituitary tumors are quite common.

“I spoke to eight doctors before the tumor was found,” she said. “Focus on good things that can help keep a good attitude. Find the blessings in the bad. This year I am most thankful my kids stopped worrying about Mom’s future.”

 

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