Sophia Gettino
Updated - March, 2009
Sophia is now 13 years old !! She entered middle school last Fall,and is really enjoying the freedom and responsibilities that go with middle school life.She likes going to the dances ( she assures us she doesn't slow dance with boys ).She is active in a club in school that focuses on leadership and adventures.They are the school diplomats,welcoming visitors and helping to organise activities.They went on a team-building field trip where they have challenges such as a rope-climbing course,a zip-line,and something called a flying squirrel which she was terrified of,but with encouragement from her friends,she did it.She came home so proud of herself that she had overcome her fears and persevered ( her words...her vocabulary is still as amazing and amusing as you may remember ).The cross-country skiing adventure didn't go quite as well,she said that after the 12th time she fell,she discarded her skis and walked the rest of the way with the group.She was able to laugh at herself and be proud for trying,saying she may try again next year,she doesn't give up easily !!
She works really hard in school.She still has some short term memory issues that make learning hard for her.She has great teachers and she's learning strategies that help her stay focused.She endures all with a smile and I am always amazed that she finds room in her heart to encourage others who are struggling or sad and she just seems to know when someone needs a kind word or a smile and she gives so generously of herself ! She wants to be a Chef or a Pre-school teacher (like Mom) when she grows up.
She is considered to be a long-time survivor having been in remission for over 5 years.She gets an MRI once a year.She had yearly PET scans for a few years but since they have been clear,we have just been sticking to the MRI"s unless there is ever reason to check things out with a PET.We are confident the cancer won't return but as you know,it is a fear we live with,and the memories of the bad times make you appriciate the good times that much more !
Other than that we actually live a pretty normal life.Ten years ago,I could not picture our family travelling for fun,or going through a day without the gut-wrenching fear that things could go wrong real fast.But,for now...we're there and it is soooo wonderful.
Sophia's brothers,Vinny and Anthony are now 11 and 9 years old.She adores them and is as protective as a mother hen,which makes my job easier...ha-ha.I have included pics of them as I'm sure you still picture them as babies in your mind's eye.I also included some pics of her pump-cart-then- back-pack contraption that she needed when she learned to crawl and walk with the IV pump attached !
Updated - July 18, 2003
On January 29, 1996, Sophia Breen Gettino was born to us, the proud parents, Joe and Jenny Gettino. She was our first child, and the center of much attention in both our large, close knit families. For months, our beautiful daughter delighted everyone with her sense of humor and, of course, superior intelligence.
By November, Sophia was a beautiful, blonde baby, who was crawling and climbing. But without warning, in just a few days, Sophia became a different child: she became lethargic, had trouble maintaining her balance, and was unable to move her eyes upward. As we would learn, these symptoms are serious.
At the doctors office our concerns were dismissed by a nurse practitioner. The next time, a doctor who was not her regular pediatrician thought Sophia had an eye problem. The third visit with the same doctor, started out no better. We knew Sophia's doctor was in the building and insisted on seeing him. He arranged urgent appointments with an eye doctor and a neurologist, who arranged for an MRI to rule out a mass on the brain. Instead, the MRI showed a mass and fluid build-up. We were told us to take Sophia right to the emergency room immediately; the neurosurgical team would meet us there.
That night, December 18, our precious child had surgery to re-lieve the pressure on her brain and obtain a piece of the tumor. We were told that Sophia could die during the procedure. In just hours, our wonderful Sophia went from being an exquisite 10-month-old child to one that might not have a future.
Brain tumors are rare, especially in children. In the United States a total of about 49,000 adults and children are diagnosed with brain tumors each year. They are classified by their location; other cancers are classified using staging systems, e.g., from I to IV. Pineoblastomas are located in or around the pineal gland, a tiny organ near the center of the brain. Slow-growing pineal tumors are called pineocytomas. Fast-growing ones are called pineoblastomas. Sophia had a pineoblastoma, a deadly and very rare brain tumor. Even worse, these tumors can spread to other parts of the central nervous system. The side effects are hydrocephalus, paralysis of upward gaze, and gait (walking) disturbances. Sophia had all of the classic symptoms.
Sophia had surgery to remove the tumor on December 20, 1996. The surgeon said that he was confident he had removed the entire tumor. But the prognosis could not have been worse. There was almost no chance that chemotherapy would prevent the tumor from returning. Chemotherapy without radiation therapy held no hope for a cure. The side effects from chemo-therapy were so devastating that Sophia would spend most of her remaining life in the hospital. Radiation and chemotherapy for brain tumors cause permanent damage to intellect, verbal function, and fine-motor skills; permanent eye, dental, and hearing damage; stunted growth; and more. After anguished thought and discussion, Joe and I refused chemotherapy. We decided that it was senseless to make Sophia sicker and cause her more suffering. Instead, we prayed and tried to believe that our baby would be fine.
Making the decision to forego treatment was very difficult. When I asked about the side effects-deafness, paralysis, secondary cancers, kidney damage, and more-the doctors assured us that these were only possible and were not likely to occur. Joe and I repeatedly asked the doctors about other treatment options, anything at all that wasn't so lethal. We were told there was nothing. We learned later that was not true.
The doctors gave us copies of protocols (instructions for treatment) a one-inch pile of very technical information. After Joe spent 3 nights reading, he finally saw the big picture: 25% of children die in the induction stages of chemotherapy alone. What the doctors really meant when they said the side effects were only possibilities was that Sophia probably would not live long enough for them to occur. Yet the doctors were vehemently recommending chemotherapy. They thought the statistics we were reading would convince us to allow Sophia to undergo chemotherapy. The information did exactly the opposite.
In fact, the only pressure for us to agree to treatment for Sophia came from the doctors. They said, if this were my child, I would do the chemo. You'll never forgive yourselves if you don't try this. In contrast, our families and friends were very supportive of our decision. They did not want to see their little angel suffer. In the end, we asked the doctors a very simple question. Would Sophia ever get on a school bus? We were actually grateful that they answered us honestly. They said no.
After surgery, Sophia spent 4 weeks in the hospital; she spend her first Christmas there. Seeing the children on chemotherapy convinced us that we made the right decision, at least for us. When the day came to take her home, January 7, 1997, a routine MRI showed that the tumor had already begun to regrow. There was no more discussion of chemotherapy-or anything else. The doctors said Sophia would not live long and to take her home and love her. And so, we prepared to do whatever it would take to make our baby comfortable. We contacted hospice care. Our Catholic priest visited to try to ease the pain, but no one could comfort us as we watched our baby deteriorate rapidly. She had become blind. Joe and I could not determine if she could hear. She did not respond to anything at all. On her first birthday, January 29th instead of celebrating, we were preparing for Sophia's death. We prayed it would be peaceful and painless. But we also still prayed for a miracle.
As it turned out, we got our miracle. All this time, our families and friends had been doing research, trying to find anything that might help. The treatment that seemed most promising was that discovered and researched by Stanislaw R. Burzynski, MD, PhD, of Houston, Texas: antineoplaston therapy. Even with all the research, we still had mixed feelings about taking Sophia to Dr. Burzynski. Certain hospital staffers told us to watch out for charlatans. We found it hard to believe there is a therapy that has been used for years to treat brain tumors, that it works, but that doctors are against it. It didn't make sense to us then and 6 years later, it still doesn't. But we decided to try this controversial treatment, and Dr. Burzynski agreed to see Sophia to deter-mine if he could help her. We left New York for Houston on February 3. It was only on our return that our families told us their true feelings: They thought they would never see Sophia again.
Dr. Burzynski talked with us and met Sophia. He reviewed her medical history, performed a physical exam, and explained the treatment plan. Sophia would receive antineoplastons through an IV catheter and a pump. The catheter was placed in a vein in her chest under the collarbone, allowing normal arm and hand movement and easy care. Antineoplastons would be infused into the catheter at regular intervals over 24 hours. During our stay in Houston, Sophia would be extensively evaluated daily, even on weekends. Blood and urine testing would be done routinely. Joe and I would be instructed on how to care for the catheter and program the pump. Once at home, 24-hour emergency help from the clinic was available. An RN would call us every day. We would have to return to Houston monthly for check-ups. But treatment had delayed until February 27, because of an infection in the shunt that was inserted in Sophia's head to drain the fluid.
While Sophia, Joe, and I were in Texas, 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.
On antineoplaston therapy, Sophia slowly regained her vision and responsiveness. She began to make excited giggly squeaks when we spoke to her. About 3 weeks into the treatment, I walked across the room and Sophia tracked me with her eyes. Joe and I were amazed and overjoyed. It was only then that we dared to believe everything was going to be all right.
Over the years on treatment, Sophia was a perfectly normal little girl. At times it was inconvenient (and at times comical) to have a 2-year-old trying to walk while dragging around an infusion pump. When Sophia was 3 years old, she was strong enough to carry her medicine in a backpack.
After 6 years of antineoplaston treatment for her terminal brain tumor, Sophia had a PET scan that revealed no evidence of cancer. We were overjoyed at the thought that our little girl was finally in remission. Sophia continued the infusion therapy until another PET scan done in February of 2003 showed she remained cancer free.
On March 7th, 2003, just over one month past her 7th birthday, Sophia began her oral maintenance dose of antineoplastons. She is old enough to know that this means not having to carry around her infusion pump, and she happily takes them and runs off to play with the energy of a typical 7-year-old.
Sophia is in first grade and is learning to read, doing math, and making friends with her sunny personality. She now has 2 younger brothers, Vinny who is 5 years old and Anthony who is 3 years old. She enjoys playing with them, bossing them around, and occasionally squabbling with them as siblings tend to do. She is a happy, healthy, perfectly normal little girl.
We are very grateful to Dr. Burzynski and all his very caring staff. Their careful monitoring of Sophia's treatment is always reassuring to us. Her safety and health is their priority. We always have felt that they consider us Family. We also are very grateful to our very generous community. Sophia and our whole family have been blessed with the warmth and support of prayers, fundraising, and frequent requests for updates on the child many still call baby Sophia. We thank and congratulate all the patients who have joined us on this difficult journey, many paving our way and giving us the strength and courage we needed when making our decision about treating our child's cancerous brain tumor.
We urge anyone in a similar situation to explore all available options, and to maximize the quality of life for their loved one.
Updated - 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
Age: 3 years old
Gender: Female
Type of Cancer: Pineoblastoma (deadly childhood brain tumor)
Date of Diagnosis: December 18, 1996 at 10 1/2 months of age
Conventional Treatments: Surgery (tumor grew back in 3 weeks). Chemotherapy and radiation recommended but refused.
Start of Antineoplaston Treatment: February 27, 1997
Status: 20% decrease in tumor now for over 2 years. She is 3 years old now and developing normally.
Submitted to Website: Updated in April 1999 by Jenny and Joe 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