| Three Generations I was born in Puerto Rico, in 1948, in a time and place where I imagine that very little was known about Retinoblastoma and its treatment. Despite such an inauspicious beginning, I believe that the paths of my life have blazed many new trails, as advised by Wado Emerson in his quote at the top of this page. I'm told that my eyes were a medium brown, with the gold flecks, like those of the heroines so often featured in the romantic novels I'm very fond of reading. I can't help but wonder why God would have given me such nice eyes, only to for them to be thrown away so early in my life, except the answer is that it was done to save my life. By the time my mother noticed the cat's eye reflex, the tumors were so advanced as to necessitate the removal of both eyes at the age of nine months. No additional treatment was administered. My mother moved our family to the States in 1956, where I got the excellent education, at a school for the blind, that she was hoping for. Then came an incomplete psychology degree, followed closely by marriage. It must have come as a pleasant surprise for my mother to see me achieve so much as a totally blind person, considering the fact that in Puerto Rican society, handicapped children are routinely taken care of, with very little expected of them. Aimee came along in 1973, a normal and bright infant, until my mother once again noticed the horrific telltale reflex, when Aimee was six months old. The diagnosis on December 20 resulted in enucleation of the left eye on December 24 - a Christmas never to be forgotten! I cried during the diagnosis, while my husband cried during the operation. The first time I heard of the hereditary nature of RB was from the geneticist at the Columbia Presbyterian Hospital, in New York, where we went for Aimee's external beam radiation treatments, administered by prominent pediatric oncologist Dr. Robert ellsworth. We got to meet other parents and children with the same condition, but I could never feel at ease because of the few children who didn't survive their disease. When Stephen was accidentally conceived, I couldn't bring myself to terminate the pregnancy, and I wanted Aimee to have a playmate, in case the RB made her life abnormal in any way. Stephen's diagnosis was made on his second day of life, and his external beam radiation treatments began three weeks later, in 1975. He initially only had tumors in the right eye but soon the left eye was also involved. Laser treatments during the first year of his life saved the right eye, but without much vision in it. The periodic check-ups for both kids kept my husband and me hopping, including the gruelling trips from Virginia to New York, when the Navy relocated us away from Dr. Ellsworth. Finally, my husband was forced to leave the military for fear of our being sent out of the country. We couldn't possibly leave the only source of support and knowledge we knew at a time before computers and support groups. As children, Aimee and Stephen were as different as night and day. Aimee was quiet, well-behaved and could amuse herself. Even before his second cancer, Stephen was hyperactive, couldn't concentrate, and we consulted a child psychologist to see if we could help him do better at school and behave more appropriately. All was going well. Each child could see well with one eye - Aimee with the right eye, Stephen with the left. However, in 1988, at the age of 13, Stephen developed a lump on the left side of his face that looked and felt like the mumps. It was Rhabdomyosarcoma, a soft-tissue tumor wrapped around the muscles of his face, as diagnosed and treated by Dr. Peter Beardsley, pediatric oncologist at the Yale hospital in New Haven, CT. Treatment consisted of a five-drug chemotherapy cocktail, administered regularly through an external catheter inserted in his chest. How helpless I felt that I couldn't assist my husband with the administration of heparin into Stephen's catheter to make sure it was maintained free of blood clots. That summer Stephen was so weak that he couldn't walk, and we couldn't get him to eat, so that his weight plummeted from a chunky 140 pounds to a dangerous 65 pounds. The mysterious ways of the lord became clear to me when Stephen was encouraged to attend Camp Hole in the Wall, In Ashford, CT, Paul Newman's first endeavor to help children with life-threatening diseases. By the time Stephen came home from that marvellous experience he was walking and eating again, because of all the other children just like himself, who got to meet and identify with each other and help each other heal. The camp song was Don't Worry, Be Happy, by Bobby McFerrin. For a short time all was well again, until the relapse of Stephen's Rhabdomyosarcoma in mid-1990. I was sure I wouldn't be able to stand any more, as my mother passed away at the end of that year, and my husband and I were having marital problems. We would argue over Stephen's manipulative behavior, which had me making excuses for him, while my husband didn't seem to understand Stephen's fear. This time Dr. Beardsley treated Stephen with a three-drug chemotherapy regimen but with extensive radiation as well. Stephen's system was better able to withstand the negative effects of treatment, and he has been cancer-free for over 13 years, but not without a price. He has a weakened back and legs, due to neuromuscular damage from the chemotherapy. All his teeth had to be removed last year, because of bone density reduction caused by all the radiation he received. A cataract was also removed recently and a lens has been implanted. Aimee isn't free from negative effects of the treatment she received in infancy. She is plagued by headaches, bad teeth, sinus infections and joint pain. Nevertheless, both Aimee and Stephen have led relatively normal lives, and even my marriage has survived trauma that most men aren't able to deal with. On Lincoln's birthday, February 12, 2002, Aimee gave birth to our miracle grandchild named Ryne, who to date, appears to be totally RB-free. I would hate to see Aimee and her husband live through what my husband and I have had to deal with, but I'm glad that she is able to have a family, because I believe that she has felt lonely and alone. Even though Stephen is unable to have children, I wish that he could have a family as well, but he is very self-absorbed, with difficulties in making commitments, and seems better able to live by himself. There is no doubt in my mind that we have come through the trauma and the drama of our lives, thanks only to God's proposition and our disposition as it is meant to be. May all RB survivors continue to be guided by the wisdom and the strength and the courage and the purpose set forth by our Lord. |
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| Maria, Aimee, Stephen and Ryne. This family story is written by mum, Maria. |
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| "Reverie" by Claude Debussy |
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| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| ORPHANS OF THE CANCER STORM |