Sophia Gettino

April 30, 2000

    - - - UPDATE by the Gettinos, April 1999 - - -

Ours is still the same happy story, except that Sophia now is 3 years old and has been on antineoplaston therapy for over 2 years. Today Sophia is strong enough to carry her medicine in a backpack. This photo is of a very special birthday.  Also, Sophia has a baby brother, Vinnie!

Joe, Jenny, Sophia, and Vinnie Gettino

In January of 1996, Jenny and Joe Gettino were elated at the birth of their beautiful baby girl, Sophia Breen Gettino. Both Jenny and Joe were raised in large close-knit families, so there was no lack of attention for Sophia. She delighted us all with her great sense of humor and superior intelligence.

On a family visit when Sophia was about 10 ½ months old, her grandmother thought that Sophia's eyes did not look right. We all assured her that Sophia might just be tired or that teething had caused her face to swell.

As it turned out, her grandmother's concerns were justified. Within a few days of that visit, Sophia became a different child. She was lethargic, had no appetite, had trouble maintaining her balance, and her eyes were not tracking. After a few visits to the pediatrician it was decided that she should have an MRI.

After the MRI, Sophia was sent home. Jenny and Joe were told that a neurologist would read the scan and contact them in a few days. They returned home with their sedated baby to find the phone ringing. It was the hospital telling them to bring Sophia back immediately. The MRI had shown a mass on her brain and acute hydracephalic fluid as well. That night, Sophia was operated on to relieve the pressure on her brain from the fluid. During the procedure the surgeons were able to obtain a biopsy of the tumor. From this point on the Gettino's world was turned upside down.

The scan and biopsy determined that Sophia had pineoblastoma, a deadly and very rare brain tumor. It was decided that in the next few days Sophia would have surgery to remove the tumor. In retrospect the amount of information that was being tossed around in those few days was unfathomable. The Gettinos spoke to neurosurgeons, oncologists, social workers, pediatricians, nurses, and a number of other professionals.

On the very long day of surgery, about 20 of Sophia's closest family members waited anxiously. When the surgeon came from the operating room, he said that the surgery was complete and he was confident the entire tumor had been removed. He also felt that because Sophia had survived the surgery, she had a good chance of recovery.

The day after surgery, Jenny, Joe, and their parents met with the surgical and oncology teams. The information they received came crashing down on them like a ton of bricks. Even though the doctors were confident that all of Sophia's tumor had been removed, they recommended chemotherapy but were unable to recommend radiation therapy because she was too young.

The prognosis was grim. There was a slim chance the chemotherapy would prevent the tumor from recurring. Chemotherapy without radiation therapy held little hope for recovery, and the side effects  from chemotherapy were so devastating that Sophia would surely spend most of her remaining life in the hospital. After a lot of anguish, thought, and discussion, Jenny and Joe refused the treatment. What sense did it make to make their baby sick and suffer. They pinned their hopes on the fact that the tumor had been totally removed and tried to believe that Sophia would be fine.

Sophia remained in the hospital for almost 4 weeks. It was a grueling time for all. She had had deep brain surgery and required a lot of care. For the last part of her hospital stay, Sophia was on the pediatric oncology floor. It was horrible to see the children so sick and weak. Jenny and Joe were convinced that they had made the right decision.

Finally, the day came when Sophia was ready to go home. An MRI was performed simply to check on her progress. To everyone's horror, the tumor was back! At that point there was no discussion about chemo or anything else. Jenny and Joe were told to take Sophia home and love her because she would not live long.

Sadly, Jenny and Joe took Sophia home and were prepared to do whatever they could to make her comfortable. Hospice was contacted and helped with her care. Clergy visited to try to ease the pain of knowing that their baby girl was going to die.

Sophia deteriorated rapidly. When her first birthday arrived, she was not doing well. Since the surgery she had become blind. Jenny and Joe didn't know if she could hear, and she didn't respond much.

Meanwhile, friends and family had been doing research, trying to find anything that might help. The one study that seemed feasible was about Dr. Burzynski's research into antineoplastons. At that time, Dr. Burzynski was under siege and on trial for trying to help his patients without the approval of the FDA.

Jenny and Joe called the Burzynski Clinic and were told that Dr. Burzynski would see Sophia to determine if he could help her. When they left with Sophia for Houston on February 2, 1997, none of us thought we would see her alive again.

In Houston, it was discovered that Sophia's shunt was infected and had to be removed and replaced before Dr. Burzynski could begin treatment. She finally started treatment on February 27, 1997, and the family remained in Texas until April. In their absence, the outpouring of love and support from the entire community was phenomenal and heart-warming. The Sophia who returned home to her village, decorated with banners and yellow ribbons, was beginning to be the little girl we all knew and loved.

Surprisingly and happily, Sophia is now 32 months old. She is a happy, healthy, active child, who is walking, talking, laughing, learning, and loving life. Her tumor has decreased by 20%. Although at times it is inconvenient and difficult to have a 2-year-old trying to walk while dragging around an infusion pump, it certainly beats the prognosis that conventional treatments offered.

Sophia's entire family feels blessed for every day we have her. We urge anyone in a similar situation to explore all options available to maximize the quality of life of patients with cancer.

Many of us donate money to cancer research. We need to try to ensure that no stone is left unturned. Professionals such as Dr. Burzynski  should be awarded research dollars to further develop their theories and medications. Research dollars would ease the financial burden of patients whose treatment is not covered by insurance simply because they have chosen to participate in a treatment that is not conventional.

The Gettino Family

October 1998