Thirty years ago I was diagnosed with retinoblastoma when I was 18 months old. They thought it was the non-hereditary form because it was one tumor in just one eye. The eye was surgically removed, and I had no chemotherapy or radiation. I have no late effects other than wearing a prosthesis and having vision in only one eye.

Ten years ago my newborn daughter was diagnosed with retinoblastoma in both eyes. She had one eye removed and both eyes radiated with 2200 cGy (centigray). Two years later the tumors returned in her remaining eye. The tumors regrew only 3 weeks after chemotherapy ended, so she had more chemotherapy. When that course had to be cut short due to side effects, they decided to remove the remaining eye. She has some learning problems from the radiation and wears two prosthetic eyes.

Joseph had 12 cycles of chemotherapy and 5000 cGy of hyperfractionated orbital radiation (twice daily for 6 weeks). With this treatment regimen, almost all of his above-the-neck side effects will be due to the radiation, not the chemotherapy drugs. Many of the side effects of radiation on the body are, of course, delayed for months or even years. He will suffer “bony hypoplasia,” which means that the bony structures that absorbed radiation (in this case, his right temple and in and around the right orbit) will not grow any more, so his face will look increasingly asymmetrical as he grows up. The doctors are optimistic that it won’t be too noticeable since he was turning 5 when treatments were done.

Naomi has had cataracts for the past 6 years as a result of high-dose prednisone and TBI from her BMT (bone marrow transplant). The cataracts are quite different from what we think of in terms of the elderly—they are not visible on the outside of the lens and in fact don’t impair her vision. She has maintained 20/20 vision in spite of the cataracts, and there is no indication that that will change. The one thing that she does find is that the contrast of light to dark is affected. She can easily read the ophthalmologist’s chart when it has black letters on a white background. The same chart done in tones of gray is very difficult for her to read. Also, white chalk writing on the blackboard is more difficult to read at times. Light really bothers her, either the bright summer sun or the reflection of the sun off the snow. The light hits the cataracts and disperses the light in the eye. So Naomi really needs to wear very good quality sunglasses with good UV (ultraviolet light) protection when out in bright sunlight.

Like most children who are a couple of years out of treatment, Joseph’s scans and doctor visits are now more related to dealing with the long-term effects of the rhabdomyosarcoma cure than the disease itself. He has a big cataract on his right eye from the radiation, and his vision in both eyes is rapidly getting worse. He still needs eye drops every 2 hours all day because of damage from the radiation, and he has terrible problems with light sensitivity. But he always manages to compensate and doesn’t let anything get in the way of his reading or play or computer games.

I had an ependymoma (brain tumor) 6 years ago when I was 8 years old. I have visual field cuts. I don’t see the whole picture that other people see. My peripheral vision is limited, as well as my lower field. This causes me a lot of problems. For example, I can’t walk to school by myself right now because I don’t notice cars moving on my left side as well as other unpredictable occurrences in city streets. I have to try to remind myself to keep turning my head. I can’t follow any visual cues such as pointing, but instead rely on verbal instructions. I’m starting high school this year, so I’ve been going to the school with my mobility instructor to walk around and memorize the layout. The vision I do have is good, but it’s only a fraction of what other people see.

At the time he received the 5000 cGy to his eye, we were told Joseph would probably lose some vision in the treated eye, but they said the effect might be anywhere in the range from barely noticeable to completely blind. It’s been 2 years and so far Joseph’s vision tests at 20/20. But when I asked the ophthalmologist at the last visit if that meant we were out of the woods, he grimaced and shook his head. He’s still expecting something to show up and says we’re not far out enough yet to know what the extent will be. Darn it.

Our son had an epidural hematoma (bleeding into the brain) after his surgery to remove a medulloblastoma. One side effect from this was that the left side of his face is partially paralyzed, and his left eye turns in toward his nose. One ophthalmologist told us that surgery can put it back in the right position, but it would forever remain fixed in that one place. After a year of therapy, he can now move the eye up and down and to the right. He can move it a bit toward the left, and his vision has improved.

• • • • •

One of our daughter’s seizure medicines caused vision disturbances. She developed tunnel vision and had trouble seeing. We changed the drug and it went away. She’s at risk for cataracts from her cranial radiation, so we go to the eye doctor every year.

My 10-year-old daughter is 6 years out from her retinoblastoma relapse. We see the oncologist and ophthalmologist every 6 months for a checkup. Because she has a 30 percent chance of developing a secondary tumor, she has careful examinations and occasional CT (computed tomography) scans. When she started having headaches, she had an MRI (magnetic resonance imaging). Our doctor is great. When something worries us, she checks it out thoroughly. My daughter has a prosthesis for her eye and needs to go back every 6 months to get it resized and built up.

Joseph has not had cataract surgery, but it is expected that he will develop one or more cataracts in the next year or so because of the 5000 cGy directed at the rhabdomyosarcoma in his orbit. We see a pediatric ophthalmologist frequently to stay on top of the late effects, and so far so good. Right after diagnosis the doctors explained the probability of cataracts and the surgery that is done to remove them if they are in the line of vision.

My daughter has cataracts in both eyes due to the total body radiation from bone marrow transplant. Katherine is given dilating drops every morning so she can “see” around the cataracts. Because the dilating drops paralyze the focusing mechanism, Katherine wears bifocals. One lens is for normal vision and the other for reading.

• • • • •

My daughter was having a lot of problems in kindergarten seeing the board and doing her work. Even though we had been to the ophthalmologist 4 months before, we went back. Her eyesight had deteriorated considerably and was now 20/400 in the one eye, while the other was still 20/30. When we discussed the surgery, the doctor told us that if the capsule had been damaged by the radiation, a replacement lens could not be inserted, and he would not know until they got in and looked. Luckily, the capsule was fine and the new lens works great. Her eye now is 20/80.

After our son’s surgery for medulloblastoma, the left side of his face was partially paralyzed. His left eye remains partially open all the time. When he first came home, we put drops in his eye every 3 hours and eye lubricant at night. Now we just watch it and use drops if his eye gets red. When the house is dry in the winter, we need to use more.

The major side effect we were warned of that has been a constant problem since treatment has been the radiation damage to the lacrimal gland in his right eye. He needs constant lubrication in that eye because it provides very little moisture by itself. It took us a long time to come up with the best way to keep his eye consistently moist, and in the meantime he had some major problems with corneal abrasions (causing painful light sensitivity) from the eyelid dragging over that dry little eye. Now he gets eyedrops every 2 to 3 hours during the day and a gooey eye ointment every night before bed. Missed drops mean eye damage, so he can’t do sleepovers or extended play times with any kid whose parents aren’t willing to give him his “drops and goop.” How this system is going to work when he’s too big to be in my care or the care of the school nurse all the time, I don’t know, but I’m not borrowing worries for now. One alternative the doctors have suggested we could seek in the next couple of years may be surgery to “plug” the ducts which drain the eye, so that what little moisture the eye has won’t just drain away so quickly.

I’ve had lots of radiation (left flank for neuroblastoma and cranial for leukemia) and years of chemotherapy. I have very bad vision as a result and have worn glasses since the age of 3. I also have small cataracts in both eyes, but they have never caused any problems. My eyes are also incredibly sensitive to sunlight.