| Sophia was a happy,normally developing infant. At about 10 months old, she began to be very fussy, and she seemed to not have much of an appetite. Over the next few weeks, she began to loose her balance (she had been creeping, crawling,and pulling herself up to stand....typical 10 month old milestones). Her eye was droopy and she seemed to have a stiff neck. We took her to the doctor several times, but being in a HMO group, we were unable to see her regular doc the first few visits. The two doctors who saw her then didn't really know her, so didn't relize her loss of milestones. The first doctor said she was teething, and the swelling was causing the eye droop and stiff neck. Two days later, we saw yet another doctor, and he said she was going through a growth spurt and would be just fine. I was worried she had spinal meningitis, and he kind of yelled at me, asking if I wanted him to order a very painful and expensive spinal tap! We demanded to see her regular doctor. He took one look at her and knew something was very wrong. He sent us to an eye doctor, and ordered an MRI...to rule out a mass in the brain. With that statement, the panic began. The eye doctor saw there was pressure, but didn't tell us what that indicated, just said the scan would tell us what we needed to know. Our next stop was the hospital for the MRI. I think the technician knew there was a big problem. I'll never forget the way he gently placed her back in my arms with a haunted look of dread, and said they'd call in a few days with results. We weren't home from the hospital an hour when the phone rang. They said we needed to get her back to the hospital ASAP because Sophia had severe hydrocephalus and a tumor in her brain. |
| SOPHIA'S MIRACLE Story of a survivor. Sophia's story is written by her mum, Jenny. |
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| "Over the Rainbow" Eva Cassidy. |
| ORPHANS OF THE CANCER STORM |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
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| Sophia was taken into surgery immidiately. The surgeons attempted to do a ventriculostomy (drilling a hole in the ventricle to let the fluid drain without a shunt). This procedure was not successful, and they placed a temporary external drain, to be replaced by a shunt at a later date. During this surgery,they also did a biopsy. The biopsy showed a PNET tumor in the pineal region. called a pineoblastoma. Sophia would need an operation to remove the tumor. The 8 hour surgery took place on December 20, 1996 (not quite the "Baby's First Christmas" I had pictured). The next day the walls came crashing down. We were told the surgery had removed 99-100% of the tumor, but Sophia would still require chemotherapy and radiation. The chemo would be high dose, and not really effective, but the oncologist hoped she would survive till 3 years of age so they could safely radiate her brain and do a bone marrow rescue. |
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| We asked for copies of the protocols and the doctors really discouraged us from seeing them. They said they were too technical and we wouldn't understand them. We persisted and read all the options available. The outcomes were all very grim: 25 % of the patients died in the first phase of chemo, and the death rate continued all through every stage. In one protocol, zero % of the patients survived, and that protocol has since been discontinued....sooo glad we didn't choose that one! When we questioned all the 'possible' side effects, and poor results, the doctors said they felt Sophia would probably not make it to the radiation stage, and predicted she would die within the year with the treatments. With no treatment, it was expected she would die within 6-8 weeks. She was so weak and so tiny (she was about 18 pounds, and the minimum weight to begin protocol was 22 pounds, but we were told that would not be a problem). On January 7th, Sophia had a follow up scan that showed the devastating news that the tumor had grown back to its full size of 3 cm. The doctors were not pleased when we refused all treatment options, but gave us the number for Hospice, and sent us home. During the next few weeks, Sophia began to deteriorate. We requested physical therapy through Hospice to keep her muscles working, and I think it was more torturous for the therapist, thinking she was working with a dying infant and parents in serious denial. We called the neurosurgeon and oncologist several times to report her getting worse. They said the tumor was killing her, and there was nothing they could do. She had been scheduled for a follow up MRI on January 20, but that was cancelled by the doctors. They felt that since we weren't persuing treatment, there was no use for the scan. |
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| Meanwhile, some friends found info on the internet about Dr.Burzynski, who uses antineoplastons to treat cancer, and my husband decided to give this treatment a try. I had been warned by a hospital employee about charlitans such as Burzynski, and I was very hesitant to put my child in the hands of a Quack. However, after speaking to several parents of Dr. B's patients, we decided to go to Texas for an initial appointment. To learn about antineoplaston, . Upon arrival, we were told Sophia looked pretty bad, and the doctors made no promises about her outcome, but she was required to have a recent scan to begin treatment. I have never seen such a look of panic and shock when the radiologist showed us Sophia’s scans. She had developed an infection in the shunt that had been placed at our local hospital, and the fluid pressure was so high, it was close to crashing through her dura-mater (it is believed this has caused more long term problems for Sophia with large and fine motor control than the presense of the tumor). Sophia spent three weeks in Texas Children's Hospital, under the careful eye of the infectious disease department. She received many heavy duty anti-biotics, and a new shunt was placed at that time. |
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| By the time she started treatment with antineoplastons, Sophia was recovering from the surgery. Although she was very weak, we began to see improvement within a few weeks. She regained her appetite, smiled and laughed. She could sit up again, and she would track us with her eyes (the doctors had told us she was blind, that you could flick your fingers in her face and she wouldn't react). Six weeks into treatment, a scan showed there was a slight increase in the tumor. We were devastated, but the doctors said this could be swelling from the treatment working. We decided she was improving so much clinically that we would give it some more time. The next scan showed a slight decrease - she was slowly on her way to recovery! We continued with the IV treatment that we prepared at home, thanks to the training and support we received in Texas. Sophia learned to crawl and walk whilst dragging the infusion pump behind her in a little cart. Eventually, we designed a back-pack that allowed Sophia to carry the rather heavy pump and fluids, but it didn't slow her down for a minute! |
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| Over the next few years, the tumor decreased in size and intensity, untill there was consistantly no rowth or reduction. We had been asking our local doctor for a PET scan for quite a while, having heard this scan was an effective tool with which to determine cancer activity. The doctor said PETs were only used to determine seizure or epileptic activity. He must have finally gotten the memo or read a journal article that stated the PET could detect cancer activity, and ordered one. That PET was done in September of 2001, and revealed the mass in the brain was scar tissue. There was no cancer activity!! Sophia remained on the IV treatment for one more year, and then did one year of the capsule form. She had to take 36 capsules a day, and to spped things up so as not to cut into her play-time, she taught herself to swallow 2 at a time....simply amazing!! |
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| Sophia has been off all medications since November of 2003. She is now nine years old and is in 3rd grade. She recieves Physical and Occupational therapy and Special Ed support in an inclusive classroom setting. The school team is very pleased with her progress. She is a little behind her peers with reading and math, but I feel her vocabulary and language skills really counteract the deficits, and she'll catch up and be a self supporting adult. Sophia also has two little brothers that she takes very good care of and loves very much: 7 year old Vinny, and 5 year old Anthony. |
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| For more information about the Burzynski Clinic, visit |