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Fall 2000 Table of Contents
Versión Español de este artículo (Spanish Version)
By Rene Gonzalez, Father, Kyle, Texas
On December 17,1997, Victoria Loreen Gonzalez was born at 8:00 a.m. She was a beautiful baby full of life. During Victoria's first year she had spent a week in the hospital due to a urinary tract infection. She also had regular well-checks and visits to the doctor for immunization and sick visits. For us it was twelve months of happiness and total delight in our daughter.
When she turned fifteen months old, she had a seizure caused by high fever. Three different baby doctors checked her. All of the doctors agreed that a simple rash had caused her temperature to rise quickly. Each doctor checked her eyes and other parts of her body for any abnormalities and assured us there were none.
Time passed and Victoria was having the typical experiences of a child. We could see her strength and courage as she attempted to walk. Very soon she was getting into every part of our home. She played with others, and she enjoyed the outdoors.
At about 20 months we took Victoria to the doctor for a wellness check. At that time we complained about her sleeping problems. She had begun to have sleeping problems and would cry. We would try to comfort her and relieve her distress, but nothing helped. Her pediatrician suggested her problems with sleeping were due to bad dreams or gas.
Not long after that visit I spotted a strange metal-like reflection in her left eye. I asked others in our family if they saw the same cloud. Immediately I felt a need to cover her right eye. She refused to allow the right eye to be covered. I tried poking her left eye to observe her reaction. Her left eye stayed open as if she did not have any fear of being touched. Immediately we scheduled an appointment with the doctor.
As we waited in the doctor's office, Victoria played and enjoyed herself. This time the doctor thoroughly checked her eyes; she turned off the light and closed the mini-blinds. I told the doctor that an object was only visible when Victoria's eyes were looking upward. The doctor started the procedure, then immediately rose from her seat and left the room. We were left alone, and a very cold silence fell around us as we stared into her precious little face.
The doctor returned with instructions for us to go to an ophthalmologist. It was 5:45 p.m. on a Friday, and we were in the south part of Austin. Dr. Busse, the ophthalmologist we were referred to, had his office on the other side of town, about 45 minutes away in the heavy Friday rush-hour traffic. Before we left our pediatrician, we were only able to gather that she saw a growth in Victoria's eye. We found out later that in her many years of practice, she had never diagnosed a child with this type of growth.
That drive from her office to Dr. Busse's began a journey of pain and suffering for both Victoria and us. The day seemed to go into a kind of slow motion. We sensed that a deep fissure had been opened in our life. The possibilities of what the doctor meant by "a growth" ran on a loop in our minds. The worst fear parents can have, that of something harming their child, was becoming a reality for us.
Once we entered Dr. Busse's office, he immediately dilated Victoria's eyes three times. Victoria was beginning to show an impatience for all this new testing on her eyes. Suddenly we both noticed a large white globe in Victoria's left eye and smaller globes in her right eye. Dr. Busse stood up and left the room in haste. He returned with a handout and a box of tissue. He sat down and gave us the tissue box. He told us Victoria has cancer in both of her eyes, and we must work fast to save her.
We were thrown once again into that loop of emotions, struggling with fear and sadness. At first I held strong trying to support my wife who at that moment was in total distress. Then I soon joined her in my own fear and sadness. Victoria was beginning to worry, and she became saddened by our reactions. We held her tight. We were so unsure what her future would be. We were faced with a huge decision to make and no time to ponder the options.
Dr. Busse gave us the basics. The cancer Victoria had is called retinoblastoma. He told us that this form of cancer is very rare, very aggressive, and can be life threatening. He stated that the hospitals in Houston were very experienced in treating this form of cancer and that we must decide whether or not to begin treatment immediately. He also gave us a second option and that was to begin the early test here in Austin. The decision was difficult for us. We had to decide what was the best treatment for Victoria. We decided to stay in Austin because we had family and friends here while in Houston we knew no one. Dr. Busse made the arrangements with the children's hospital, and moments later we were on the road again heading into the unknown.
As we traveled to the hospital with tears rolling down our faces, I felt like stopping the car, getting out, and screaming. I wanted to shout until everyone could hear, "My beautiful 22-month-old baby has cancer!" I knew, staring at the other cars as they passed by, that the people inside them had problems and troubles of their own. Still I felt that no child should have to endure such pain and suffering, especially not my beautiful daughter. How could my young baby girl have such a destructive disease?
Now we entered the hospital, a place that would soon become our second home. We passed by the chapel, and we also passed by several other cancer patients. The first procedure they did on Victoria required an IV-line to be inserted into my baby's little veins. Victoria's blood had to be drawn continuously to monitor her red blood cell count. It took both of her parents, three nurses and a support board to hold Victoria down. As I held Victoria's head I stared into her lifeless left eye, and I could see the white growth in there. My tears were now mixing with Victoria's. Her pleas for help went unanswered, for we knew this was only the beginning.
It was now 11:00 p.m. Friday evening, and Victoria was being prepped for a series of X-rays. Once again she had to be held down by a support board underneath a huge X-ray machine. I could not imagine what Victoria felt, but as she pleaded for help, I knew she was asking why, and what had she done wrong? This procedure lasted an hour and then we were on another ride, this time to another hospital for an MRI. The MRI was required to make sure the cancer had not spread to the rest of her body.
The only break Victoria had was that she was put under because the test required complete stillness. The loud beat of the machine did not help the cold silence. By 3:00 a.m. we were heading back to the first hospital. It seemed that the darkness of the night was no match to the darkness that had fallen on Victoria and on us.
The next day began at 6:00 a.m. with more blood work and an early visit from Dr. Busse. He gave us some good news. The cancer was mainly engulfed within the eyeballs. Therefore complete removal of the eye would prevent any growth of cancer into the brain. Dr. Busse informed us that he was not a specialist in retinoblastoma, but that he had enlisted the services of another Austin doctor, Dr. Harper, who deals with this type of cancer.. Then Dr. Shore entered, who specializes in the removal of eyes and optic nerves, and implants. He was very professional and answered every question we had about the dangers of removing the eye. He doubted it was possible to save her eyesight.
By 8:00 a.m. both doctors had given us their opinion. Then the geneticist visited and questioned us about our family history. This information would help determine if the disease was genetic or just an unfortunate twist of fate. The genetic testing is also required for tracking the disease and to alert us to the possibility of cancer developing in our other child or within our families. Conclusive results from this testing would take several months. Before the next doctor entered, we were completely exhausted, emotionally drained, and hopeless. Our daughter who had only seen a fraction of the world was now on the edge of being in complete darkness. There is no way I can describe our states of mind at this moment. We both so desperately felt we needed help.
In a sense the next two doctors could be called miracle workers. Dr. Harper is a retina specialist, and Dr. Lockhart is an oncologist. Dr. Harper looked in Victoria's eyes and studied them as best he could. He said that the left eye would have to be removed because it was full of tumor, and Victoria had no vision in that eye. It would be safer to remove the eye and eliminate the possibility of metastasis. Dr. Harper then went on to explain that he could save Victoria's vision in her right eye. He said it with such confidence that we were at his mercy. Let me tell you, because of Dr. Harper's confidence, some of the sorrow and heartache was lifted from our hearts. (Thank you Dr. Harper.)
Dr. Harper and Dr. Lockhart, armed with their research, told us they believed a nine-week series of chemotherapy would help slow the cancer down. That therapy, combined with using a laser and freezing, might let Dr. Harper save the right eye. They agreed that the left eye had to be removed immediately.
It was now noon and we were back on a roller coaster of emotions, trying to make the best decision for our daughter. We knew the options. If she kept the left eye there was a stronger possibility the cancer would spread. Keeping the right eye also added to that risk. Still the whole idea of placing Victoria in complete darkness in just two days was too much to bear. On the other hand losing her altogether was our worst nightmare. After 48 hours without sleep, our bodies were showing the strain. During the night I entered into the chapel and prayed for the forgiveness of our sins and also for guidance and strength.
Once they did the eye exam under anesthesia, Dr. Shore and Dr. Harper concluded that the tumor was so big in the left eye that it had enlarged the eye. That meant that the removal of the eye would cause severe pain, and a long healing process would be necessary before they could begin chemotherapy. That also meant the tumors on the right eye could continue to grow.
At 5:00 p.m. Monday evening Dr. Harper called us with a new twist. He had been doing a lot of research about new aggressive treatments for retinoblastoma and had called doctors all around the world to find out what new techniques they were using on this type of cancer. He had found another option for us. We could remove the eye now and wait for the chemotherapy or start chemotherapy now and removal the eye later. He felt that the best chance for Victoria was to start chemotherapy immediately and try to keep some of her sight. He went on to explain that chemotherapy would be the only way to slow the growth of the tumors on the right eye and would also shrink the inflamed tumor on her left eye. By 7:00 p.m. Monday, Victoria's first wave of chemotherapy began, and by 9:00 a.m. Tuesday her first series of laser work had also begun. After a week of blood draws, X-rays, MRI scans and surgery to attach a portocatheter to Victoria's chest, we went home.
By the end of October the physical demands of the chemotherapy were showing their effects on Victoria. She had lost a good portion of her straight light-brown hair. She had also lost five pounds. Two more laser and freezing treatments had been conducted. Also the first wave of chemotherapy had ended. She had no appetite, and she was very weak. Her immune system had caused her to continuously have a cold and a never-ending rash.
Financially we were having a hard time, so we had to remove both children from day care. Luckily, my wife Judith's parents never left our side. If not for them our jobs, our faith, and our hope would have been washed away.
November brought in the second wave of chemotherapy and another series of work on Victoria's eyes. By Thanksgiving her health had weakened more and all of her hair had fallen out. She now had a slight case of pneumonia and a herpes-like rash. Since she was receiving chemotherapy, there was very little antibiotics would do to help. The day before Thanksgiving the fever broke and the rash had cleared slightly. Victoria was rebounding. Before her last chemotherapy treatment her blood count had lowered to near the danger point, so she now required a blood transfusion. Her blood count had to improve before the final round of chemotherapy could be administered. I thank those people who give blood to help her because the change was immediate.
By the end of the chemotherapy treatment she had gained weight and was back to enjoying just being a child. The rash and cold were still present, however, and again she experienced another fever seizure. The lost look in Victoria's eyes and the lack of strength in her body frightened us into believing that she would truly be lost.
Yet eventually she stood up, and then there was no stopping her. She would celebrate her 2-year-old birthday, a day we thought would never be celebrated. With the help of family and friends, she once again would feel normal. Her life could be more than doctors and nurses. Soon she would also experience the ending of a century and the beginning of a new millennium.
The beginning of the year came along with the day we had dreaded. Victoria's left eye would be removed on January 11, 2000. After four hours of surgery, we waited two more hours for her to open her only remaining eye. When she awoke she was only troubled by the stitches that held her left eye shut. Otherwise, she went through surgery with a lot of courage. Several weeks later the stitches were removed and the prosthesis was inserted.
Every three weeks from October 1999 through October 2000, Dr. Harper has been working on Victoria's eye. Victoria's health is still weak. She often gets colds and rashes, but she plays like any other child. By October 2, 2000, after a year of lows and highs, our journey has led us to a straightway. The three tumors on her eye are in remission and are no longer growing. Although this does not end her torture, it does give strong support to her future.
This story I have written began with strong and powerful emotions. It has been very hard for me to write about it, recalling all the things we have been through. It took me several days just to get down what happened that first day when she was diagnosed. As tears ran down my face and on to the page, it seemed that first day was happening again. For you see, we lost our first child six years prior to Victoria's diagnosis. It took us three years before we could think about having another child. Like a miracle, our first child was born six years into our marriage and we named him Elijah Jacob. When Victoria was born our family was complete. But when Victoria's cancer was diagnosed, all the old emotions of our first lost child returned. The only difference was that with Victoria we had a chance to fight for her life. Luckily for us, Victoria's will and courage would not let her give in to this destructive disease.
The final thing I can say is that Victoria's loss was our gain. She lost her eye, but she gained love, hope, and faith from strangers, friends, doctors, and nurses.
Both my wife and I would like to encourage doctors in Texas to regularly use special screening procedures to help detect the presence of eye conditions such as retinoblastoma in infants and toddlers. In California there is currently legislation being considered that would change eye-screening protocols for children under the age of two. One of the main components of the new protocol is to dilate the eye for early examination, a very inexpensive procedure.
Retinoblastoma is a childhood cancer and accounts for approximately 13% of all cancers in infants. Most children are diagnosed before two and one-half years of age. When retinoblastoma affects both eyes, the average age of diagnosis is 12 months. An abnormal screening will facilitate timely referral to an appropriately licensed health care provider and to an ophthalmologist for treatment.
Early detection and referral of an abnormal red reflex pupillary screening would allow early diagnosis of congenital cataract or retinoblastoma which, if recognized and treated as soon as possible after birth, could reduce long-term disability. Early diagnosis and intervention might also reduce the number of visually impaired citizens. It could also cut down on the public's expenditures for health care, special education, and related services. Spending a little money early in the life of a baby could save so much in terms of dollars, but also in the pain and suffering of children and their families. We need to make sure children in Texas have the best health care possible. This protocol could save sight and lives.
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