4-year-old Boy battles Federal Agency for the Right to Live!

It's bad enough that a family gets ripped apart by the tragedy of having a child that is terminally ill. Now Thomas' family must also fight a government agency for his right to live. Thomas' parents have made the decision not to subject Thomas to the dangers or cruelty of radiation and chemotherapy. They have found a viable alternative that offers Thomas a chance at enjoying quality of life. They have discovered much to their horror that Thomas must be denied therapy because of an FDA ruling that says, "Thomas must first endure Radiation and Chemotherapy and fail." What Madness!

Senator John McCain is currently assisting the family in resolving this matter with the FDA. Thomas was a happy energetic child until the last week in August of 1999. He was having flu like symptoms, headaches, vomiting, with no fever. I wasn't terribly concerned until it got much worse. The illness heightened when his vomiting escalated. He would get no relief until about noon, then he was fine. My husband, Jim, was getting more concerned, so we decided to call the pediatrician. We got in the same day that we called. It was 4 P.M. on the 17th of September. Our pediatrician examined him and decided that Thomas might have a tumor and needed to get an MRI. The only problem now was trying to get one scheduled. The doctor suggested that we go to the ER and get an emergency MRI done. We arrived at the ER at 6:00 P.M. We didn't get to see the doctor until about 9:00 P.M. The doctor examined him again and ordered the MRI. The difficult part was that Thomas was four, and he wouldn't lie still for the test. He had to be severely sedated. The MRI finally got finished at 1:30 A.M. and at 2:00 A M. on Saturday morning we found out that he had a tumor that was 4 x 6 cm. Sunday 8:30 A.M. the surgery was scheduled.

They gave him steroids for the swelling in his brain so that they would be able to operate. Saturday night was the first time in a long time that he was happy and eating very well. I remember Thomas stating that he was feeling better and that he wanted to go home. The steroids were working, the swelling was subsiding. Sunday morning came. Robert, his older brother, Jim and I were there by his side when he was put under.

Thomas' last words were that he was scared. I said that it would be ok and that Jesus would be by his side. "God is bigger than the boogieman." (from Veggie Tales). Jim said that he loved him, and then Thomas drifted off peacefully. We were all crying by this time. We went out into the waiting area where all our friends and family were there to support us and pray. There were about twenty people there. It was almost overwhelming. The surgery took three hours. It was the longest three hours I have ever had to endure.

The neurosurgeon came out to let us know that the surgery went well and that he got all of the tumor that he could see. A sample of the tumor went down to pathology, and the doctor said we would have the preliminary report in about a half an hour. The report came back that it was a medulloblastoma. It is a very aggressive, primitive and malignant tumor. Thomas was in recovery for about an hour and was then sent to ICU until he was out of danger. With brain surgery there are many risks. There could be neurological effects that could happen because of the surgery not the tumor. We prayed again for a miracle.

The morning of the second day in ICU he finally came out of sedation. He couldn't talk, walk or speak, and they didn't know if it affected his swallowing. So there was no food or water until that was determined. He was getting all his nutrition and hydration by IV. They were monitoring him around the clock with his own personal nurse. He did speak a few words, "Mom" and "Dad". That was it.

There was more prayer, never leaving his side and believing that God would heal him. On the 22nd of September he was moved to a regular room. They finally disconnected all the monitors, and we had to concentrate on him getting well to take him home. He was starting to eat, but he didn't like the food very well. We tried to get him to walk to the bathroom with assistance. It was just easier to carry him. He was trying to talk but it was very hard to understand him. He didn't want to watch TV because he couldn't see very well. He didn't want me to read or talk to him. It was like everything was a sensory overload when his body was trying to heal itself.

He had numerous visitors every day. So many people were there praying for him and supporting us. We even had friends who were brave enough to take Patrick (Thomas' little two-and-a-half-year-old brother) for a couple days so we could concentrate on Thomas. Patrick was enjoying a bug-hunting safari, oblivious to anything being wrong.

On the 25th we got to take Thomas home with a wheelchair in hand. The whole week was nothing compared to that one day. The first place he wanted to go was McDonald's, of course. He ate all of his food and part of his brother's meal. The owners at McDonald's were very gracious and wouldn't let us pay. We got him home, and he was very hard to understand. He couldn't walk or see very well. It took us fifteen minutes just to figure out that he wanted me to go to the store for soda.

We were all in tears and prayed that tomorrow would be a better day. All his therapies (physical, occupational and speech) were lined up. On the 27th he took 3 steps by himself, praise God. Now I was trying to push him. I was doing flash cards with him to help in his speech. The next day I didn't have to have him repeat himself. I was forcing him to walk on his own.

Jim was starting to call me the Nazi Mom. I told Jim he had to be pushed to get well. We couldn't cuddle him and protect him from the world. By the time of his first therapy, which was physical therapy, they were amazed on how well he was doing. Mom had done a good job. The next thing we had to deal with was chemo and radiation. We didn't want to do it. Thomas' tests (MRI, bone scan, bone marrow and spinal tap) all came back negative. Because his tumor is very aggressive, they wanted to do chemo and radiation in conjunction with each other. Radiation, they assured us, would be at the lowest setting, if there is such a thing. They were going to aim radiation at an empty space that they call a footprint where the tumor was. It takes years before the brain occupies that space again.

They wanted us to sign a consent form for the procedure. First the side effects would be hair loss, skin rash, fatigue, nausea/vomiting and loss of control of bowel movements. We thought, ok, we could handle that. Jim signed it. The radiation oncologist then came back and said, "Oh, and he will possibly also have fluid in the middle ear, hearing loss, hypothyroidism, spinal growth deficit, possible loss of IQ, memory loss, secondary tumors, hypopituitary (low level of hormones) and radiation neurosis." Jim was floored. "You knew we would not sign this consent if we knew all of the side effects."

The physician was very disingenuous. It was then we knew we could not trust conventional medicine, and we had to do a lot of research. Chemo was even more elusive with us. It took us three hours to just get the information of what kind of drug they would be using during radiation. Vincristine would be administered on Mondays and Fridays with radiation Monday through Friday. The doctor still wouldn't tell us what other drugs, dosage and duration. The next day he finally gave us what drugs, but we still didn't know the dosage or the duration. I called his nurse to get the rest. The next day I get a copy of the recipe out of their book. They didn't even have a handout to give to parents.

We have contacted Senator McCain and have given him all of our research and the information on Dr. Burzynski's clinic in Houston, Texas. The FDA is blocking us from the antineoplaston therapy that Dr. Burzynski can offer Thomas. There are no ill side effects, and it works! With God's grace and mercy we will be triumphant in this endeavor to get the very best medical attention for our son, Thomas.

Donna Navarro (Thomas' mom)