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The National Retinoblastoma Research & Support Foundation Newsletter VISION Articles:
Side Effects of Chemotherapy Retinoblastoma is the most common eye cancer in children. Currently, significant advances in the treatment of children with retinoblastoma are being recognized and evaluated. The major treatment advance over the last 5 years has been the combination of chemotherapy and laser. Systemic chemotherapy is currently one of the main modalities in the treatment of children with retinoblastoma. Chemotherapy may be both life-saving and eye-saving and is effective leading to a high curative rate. Systemic chemotherapy and laser treatment has been reported to achieve local control of tumor in up to 80% of children with advanced disease. Unfortunately, the drugs used may produce many side effects. The most obvious, is vomiting while receiving the drugs and sometimes for a few hours afterwards. The child may not want to eat during this time because of nausea. One of the newest drugs used against vomiting is called Zofran. Zofran practically eliminates the feelings of nausea and most children can eat and drink while receiving chemotherapy. Another side effect is hair loss (or alopecia). The hair may begin to thin or fall out as early as a few weeks after the first course of chemotherapy. The good news is that the hair grows back rapidly after the end of the therapy. At times, it returns curlier, straighter, lighter, or a darker shade than the original hair. A very serious side effect is fever and neutropenia. Neutropenia is the lowering of the type of white cells that fight bacterial infections. This may occur between 7-14 days after receiving a course of chemotherapy. The chemotherapy causes this effect on the bone marrow. Blood cells are made in the bone marrow. During this time of neutropenia, the person is ver susceptible to various infections. If fever over 101°F develops, the health care provider needs to be informed immediately. Preparations for admission into the hospital need to be made for treatment with antibiotics, until it is proven that no infections exist and the blood cells are getting back to normal. Another uncommon side effect is anemia. This is when the red blood cells become very low and a blood transfusion might be needed. If the platelet counts become low and bleeding or bruises are noted, a platelet transfusion may be given. Our Institution works closely with the parents in honoring their wishes when blood products are not wanted because of their religious beliefs. Most children tolerate their courses of chemotherapy very well with minimal side effects, and continue to grow and thrive throughout their courses of treatment.
UM/Sylvester Fifth Annual Cancer Survivors Day Celebration Saturday , June 12 Watch your mail for more details or call Nicole at (305) 326-6072.
A Lifelong Adjustment I am a retinoblastoma survivor. I had my
right eye removed in 1950 when I was 9 months old. There are many adjustments through school years, young adulthood and adulthood that a youngster who is a retinoblastoma survivor will have to make. If parents have an awareness of these events and processes, they can help their child to grow and feel good about themselves. Even when faced with the challenge of a facial disability and some vision restrictions. As your child enters public school, teachers and
school nursing personnel will need to know about limitations your
child may have to due vision limitations and wearing an ocular prosthesis.
Some sports may not be recommended for the student, such as tennis.
Activities such as swimming may be encouraged and should not pose
any unusual problems. Students having monocular vision may
have a good appreciation for art. This allows them to enjoy
the painted perception of depth on a canvas. They may also
enjoy exhibits such as model dollhouses and shadow boxes that have
depth in a contained "real " space. High contrast photography
may be a good hobby to encourage. Through art appreciation,
the student without depth perception may learn to identify and acknowledge
the important role of shadow and relative space between objects.
Knowledge of the care of the prosthesis is very important as soon as the child is able to do this on his/her own. Other children will want to know what is wrong or different about them. Questions such as "how did this happen" or "can you take it out for us" may be asked. Children who have prosthesis will need to be taught an appropriate answer. They also need to be taught about their own right to privacy, their own right to share knowledge at a comfortable pace, and to self defend when unkind comments are made. Sometimes children are unkind or can unknowingly cause hurt simply by exercising natural curiosity. It is important for them to know that they decide when to explain or not explain about their differences, depending on their own comfort level. My early memories of going to school on my own and having to fend for myself are infused with a sense of needing to shelter my parents from further hurt. I felt that somehow I had caused them enough "trouble" already. Over the course of a few years at school, I learned how to deal with questions and comments and how to protect myself when I felt that I was treated unkindly. Encouragement from home was most helpful. Some events and limitations came along that I did not choose to respect. Not always respecting the lack of depth perception caused a sledding accident once that only caused me some bad bruises (I did not perceive a tree to be so close). Until then, like all children, I steadfastly rejected my ophthalmologist recommendation that I wear protective glasses at all times. My thinking was along the lines of fitting in, looking good and having no perceptible abnormalities of any kind. I did not have the experience of finding an ocularist that I was comfortable with until I was over 30 years old. His care in matching my prosthesis to my healthy eye and his pride in a job well done truly made me feel "worth it"! When I was younger my doctor would send "away" for an egg box shaped carton of eyes and I would sit squirming and struggling in his office while he and my mother picked the best choice for me. Several years later I was given a present of all my eyes from about the age of 4 onward. My mother had kept them in a jewelry box for me. I cannot explain it, but I love that box of eyes. For me, it represents the prosthetic equivalent of growth measurement marks etched on a den or kitchen wall. Another large life adjustment comes when the survivor is making the decision of starting a family. The responsibility of knowing you may carry a genetic time bomb is very harrowing and can send today's survivors running to the Internet and other sources for the latest research. In 1968 when my son was born, I had not heard of the current theories of genetic inheritance of this disease. I had hoped I would simply get lucky. I did, and my son has beautiful and disease free eyes. Having received this gift once, we decided to stop having children after our son was born. The disease does not go away with the treatment. It's effects include a life long adjustment to vision that is limited, either in having a monocular view or in the event of bilateral retinoblastoma, blindness. The effects include adjustments at many life phases. I think the key, if there is one, is to respect this disease but to also know that it does not define the individual. Networking with others who have the condition is also important. Recent advances such as the Internet and support groups are a great way for families to feel connected. Sharing stories, positive or stories to cry over is very important and it really does help in the coping and recovery process. I would like to read and hear other stories.
The
Importance of Protective Eyewear All patients, especially monocular patients with a prosthetic eye, should be wearing eyeglasses with polycarbonate lenses regardless of visual status. Polycarbonate lenses are made of the strongest available optical material used in protecting the vision of your child's eyes or remaining functional eye. Due to certain orbital changes, defects can be made less noticeable using prisms that are added to the lenses, which may not be corrected by fit alone. For daily activities, there are no specific frame
restrictions but additional eye protection may be needed for participating
in certain sports. Your ophthalmologist can guide you in identifying
the appropriate protective eyewear and prescribe the correct lenses
that are needed. All patients, especially monocular patients with a prosthetic eye, should be wearing eyeglasses-regardless of visual status.
Toys alone are responsible for thousands of eye injuries each year. Choose toys with care. Avoid toys which might be capable of firing articles, such as a slingshot. Avoid dangerous toys such as BB guns and toys with sharp edges or points on them. Whether your child is wearing glasses or not we stress the importance of polycarbonate lenses and ask that they be worn at all times to prevent eye injuries from potentially hazardous activities.
Recently, our families have expressed an interest
in having their e-mail addresses published so that they may contact
one another and share their stories. We routinely encourage
our families to met one another and share stories, feelings and
concerns. Meeting other parents that understand can become
a great source of support and comfort. When asked if they minded having their e-mail address published, Susan and Gil Morse replied by saying, "Each family is so special because they have chosen to be survivors and not be defeated. The more we can learn from one another the more we can help and hopefully teach." Anyone that is interested in having his or her e-mail address published can contact me at (800) 329-7000, ext. 6072.
The saddest day of my life and I think you would agree was the day I woke up blind and later found out I had cancer. Sure you may say that having cancer is good because you get to stay out of school, but if you look at it my way, trust me it's no party. It all started one sunny morning or that is what my mom told me because I woke up blind! I screamed "Mommy, Mommy"! She flew into the room like a rocket. After a minute or so, I regained my eyesight. In one eye!! Mom took me to three different hospitals until we found the right one. That is when I met the man who would save my life later on. Mom and Tim discussed good cells and bad cells but I didn't understand any of it. The cancer was so big that they decided to remove my eye and put me on chemotherapy!! That is when I get put on I.V.'s Sure enough, before I knew it, I had I.V.'s in me every 2 weeks for 8 months. Four months into my chemotherapy, I started radiation twice a day for 4 months. I always threw up and had headaches and I was weak. Plus, my body always hurt. The doctor couldn't stop the cancer from growing. They thought it was all over. But Mom and Dr. Murray kept trying and I guess God did too because after 3 years of pain and sadness you guessed it, I got better. I hope to God no other kids have to go through the pain and sadness of cancer! Currently, Billy is eleven years and lives in Coconut Creek, Florida. After undergoing enucleation of the left eye due to retinoblastoma, chemotherapy, and external beam radiation therapy, Billy is doing great! You can see for yourself on page 5. Recently, Billy had a dream come true and was able to meet the Blue Angels! |
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