My son was treated for Burkitt’s lymphoma when he was 2 years old. He had a tumor in one of his tonsils that grew so large he had trouble breathing when he slept lying on his back. They removed the tumor surgically, and treated him for 64 days with Adriamycin ^® , Cytoxan ^® , methotrexate, and vincristine. He has absolutely no trouble breathing, swallowing, or talking.

I was treated almost 30 years ago for leukemia. I had cranial radiation, but don’t know how much they gave me. It did result in a smaller head, but since all of my growth was stunted, it’s not so noticeable.

I had both eyes removed in 1956 to treat retinoblastoma. I never wore prostheses—just sunglasses. My mom took care of the sockets when I was young, but they are not open now. Not shut tight—just not wide open either. The sockets have never changed size, so I guess they stopped growing when I had the radiation.

I had a wonderful visit with a friend who is also a long-term Hodgkin’s survivor and we discovered another late effect. It is so strange how these things crop up inadvertently. We were both headed for the same chair and discovered that we both like to have a place to rest our heads. Our necks are thin from atrophied muscles. I just always thought my neck was the only thin place on my body. It never occurred to me that this was a late effect. But she has the same thin neck, a little more pronounced than mine.

Clare had a chronic sinus condition caused by treatment for nasopharyngeal rhabdomyosarcoma. She had 5400 cGy of radiation. She got a sinus infection every other month and they were debilitating, lasting 2 weeks or so during which she felt terrible and didn’t function well. Her doctors postponed surgery for 3 years hoping that it would improve, but it didn’t. By then, Clare really wanted the surgery. She just had the surgery 2 weeks ago. After the procedure the surgeon came out to talk to us and he was beaming—a good sign. He said everything went just as he had hoped. They found a lot of obstruction, which they removed, and opened up four holes in her sinuses to promote drainage. Everything was biopsied and all was clear, which we expected, but it was still nice to hear.

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Three years ago Joseph was diagnosed with orbital rhabdomyosarcoma. He spent a little more than a year on chemo, had 6 weeks of twice-daily radiotherapy, and three surgeries. His sinuses still show damage from the huge radiation doses, but it doesn’t keep him from singing in the Madison Boychoir or enjoying other activities. It just means he needs to stick faithfully to his allergy medicines to avoid another endless round of sinus infections and awful headaches.

I had chemotherapy at 9 months of age to treat neuroblastoma, and cranial radiation and chemotherapy to treat leukemia at age 3. None of my permanent molars came in. I’m 34 and I still have most of my baby molars. A few have fallen out over the years and it’s starting to cause me some problems.

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Selah has been off treatment for almost 6 years. She received 10 doses of cranial irradiation when she was almost 5. Her 12-year-old molars are malformed due to radiation. We’ve seen them on the x-rays for years and knew they looked “funny.” Now that they’re up, they are different.

She also had cavities in them as soon as they erupted. Attaching braces was only possible by using glue because the orthodontist couldn’t get a band around those molars. One option down the road will be to remove those and pull the wisdom teeth into place. As I told the orthodontist, “If this is the worst we have to deal with as a long-term side effect, I think we can handle it!”

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I’m 27 and had 2400 rads of cranial radiation when I was 5. I’ve had no problems with my teeth. I didn’t even get a cavity until I was 25. I didn’t need braces either.

I had radiation for retinoblastoma when I was 2½. When I was 8 years old, I noticed my permanent front teeth were pretty loose. I told my mom and they did a panoramic x-ray and found that I had abnormally small roots on all of my top teeth. They said they could last 2 years or 20 years. Well, I’m 23 now and still have them. I’m careful, though. I don’t eat apples or corn on the cob. Just one more thing to deal with.

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Coley was treated from ages 2 to 3 for hepatoblastoma (a type of liver cancer). She had four rounds of chemo (cisplatin, vincristine, and 5-fluorouracil) prior to surgery and two rounds of chemotherapy after surgery. I saw a spot on her back molar and was hoping that I was seeing things or that it was food stuck in her teeth. After all she had been through, I did not want teeth problems to enter the picture. But, the tooth started to hurt and she became a fanatic about brushing her teeth, hoping that if she cleaned them enough the pain would go away.

I took her to a pediatric dentist who was just great. He looked in her mouth and said she had several cavities. Some of them he was not worried about because the teeth they were in were due to fall out soon and were not giving her pain, but she had two molars that might not be able to be saved. He also pointed out on the x-rays that the adult teeth under the gums were not the proper size and shape—some were at an angle. He told us that we had major dental work in our future.

My daughter had problems with saliva production after chemotherapy and radiation for Hodgkin’s. The braces she had were taken off sooner than planned and she had to use little tubes of dental stuff to lubricate her mouth. For a while after radiation, when she sang, she squeaked because of the dry mouth. The doctors told us that after a while the salivary glands would start secreting saliva again, but that she should have plenty of fluids. To this day (10 years later), she is always thirsty and keeps her fridge stocked with every type of drink imaginable.

Just prior to my daughter’s first radiotherapy session (extended mantle field for Hodgkin’s), her radiation oncologist referred her to an oncology dentist for a thorough checkup and consultation. This oncology dentist made a mold of her mouth and had fluoride trays prepared. My daughter was instructed to religiously use a fluoride product (such as GelKam ^® ) in the trays every night. The routine involves squeezing the gel into the trays, then placing them on her teeth for a specified amount of time. After that she removes them and is careful not to eat or drink anything for the rest of the night.

She has religiously followed the fluoride regimen prescribed by her oncology dentist and is having very good success with her teeth. Just yesterday she visited the oncology dentist for her annual checkup. The dentist was very pleased with her diligent efforts. The point here is that my daughter was forewarned about the devastating effects of radiation on her teeth. Because of this she has been able to prevent the damage that often occurs in survivors after mantle radiation.

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I don’t know if my dry mouth is a Hodgkin’s thing or if it is being caused by my myriad of medications or one of my autoimmune problems. I have had it for 5 years or more. It didn’t start until at least 20 years after treatment. I have never gotten used to it, but I am better at coping, except when I choke while eating. I keep a bottle of water with me at all times. I keep a full glass next to my bed. I chew gum more often. My doctor recommended lemon drops (sugar-free). I find that if I drink plenty of water, the dry mouth feels a little better. It is a horrible feeling walking around all day with the same Sahara mouth normal people just wake up with and brush away. The only time I am not thirsty is when I have water in my mouth.

My daughter is 12 years out from her treatment for ALL (acute lymphoblastic leukemia). She was on a high-risk protocol that included cranial radiation. Her taste for most foods never returned. Prior to cancer, she ate everything with equal gusto. Now she refuses all meat but unseasoned chicken, and she hates most vegetables and fruits. She eats just a few foods, and I give her multivitamins to try to make up what she lacks in variety. She craves sweets, fats, and salt.

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Since treatment for Hodgkin’s 10 years ago, I find that I enjoy chocolate less and fruit flavors and sugary foods more. This has both positive and negative ramifications. On the positive side, I’d rather have orange sherbet than a Hershey’s ^® bar; on the negative side, I’m a sugar junkie and really love sweets. I’ve never discussed it with anyone because I’m afraid they’d say I’m using my treatment as an excuse for bad habits. But a few years ago I read the Survivors of Childhood Cancer book and felt reassured to learn that some survivors with decreased salivary flow post-mantle-radiation (that’s me) do report increased cravings for sugary foods or require increased amounts of sugary tastes to satisfy them. It was only a small mention, but somehow I felt like jumping up and down and shouting, “See? See? I’m not crazy!”

I had Hodgkin’s disease stage IIA in 1968 and was treated with high-dose radiation. I started having food blockages about 8 years after treatment. At first it was very infrequent, but it soon became a constant problem. I also had a great deal of reflux. The reflux caused a stricture of scar tissue to develop at the lower end of the esophagus, which had to be stretched often. At its worst I got stretched every month. There is some risk in the dilations, especially if your esophageal tissue is thin or compromised in some way. Often my doctors would view the procedure under a fluoroscope to make sure nothing ruptured.

In 1988, I moved and changed doctors. My new doctor taught me to do self-dilation, which was easy enough to do. I used spray anesthetic and inserted a flexible, weighted, rubber tube. I did it once a week. And as the medical research got better, new medications such as Prilosec ^® have 100 percent managed the reflux. With the reflux gone, the stricture also vanished. I also have motility problems in the esophagus, probably caused by damage to the vagus nerve.