December 30, 2008 (Tuesday)

Trip to Duke University Medical Center

Below is an email I sent out to family and friends just after Isaiah was diagnosed with Retinoblasoma. Right now, Erica and I are anxiously waiting till Monday Jan 5th when Isaiah goes back to Duke for Examination Under Anesthetic (EUA) and a CT scan. I've done a lot of research, some of which I'll post separately. Right now we're praying that Isaiah has a case of Unilateral Retinoblastoma that is sporadic - basically we're hoping its just going to effect his left eye and is not genetic. If its not genetic, then it will significantly decrease Isaiah's chances of developing other cancers throughout his life and passing the same genetic predisposition along to his kids.

We woke up at 5AM. Isaiah laid in our bed watching cartoons while Erica and I got ready. Erica noticed the pupil in Isaiah's right eye (good eye) was dialated normally so as to take in light from the dark room, while his left pupil was normal size - later that day we would learn that Isaiah was most likely blind in his left eye. Our neighbor came over to watch Levi, who was already awake and watching mindnumbing Spongebob downstairs.

Erica, Isaiah, and I arrived at Duke early and ate breakfast in the hospital's cafeteria. Isaiah was seen at the Duke University Eye Center in the Pediatric Opthamology office by Dr. L who dilated Isaiah's eyes, performed an eye test using pictures, and tried to cover up Isaiah's left and right eyes for a vision check. Dr. L asked who had referred us and the history of Isaiah's case after the examination. When I mentioned that he was "diagnosed" with a congenital cataract, she looked at us and said that the "diagnosis" was wrong, and Dr. L believed it to be a tumor called Retinoblastoma. She then went into a good description of the cancer, a term she didn't use, and said she thought she saw visceral seeding of the tumor in Isaiah's left eye. She thought that Isaiah had no vision in his left eye and that the tumor has caused Isaiah's retina to completely detach. Dr. L said that Isaiah would need to be seen on Tuesday 5 Jan by Dr. Buckley and a pediatric oncologist to do an EUA and CT scan to officially diagnose the cancer and provide a treatment plan.

Dr. L did say Isaiah's left eye would have to be removed, a procedure called enucleation. All this news still really hasn't hit either Erica or myself. I've done a lot of research on Retinoblastoma in the past few days and anxiously await Monday's outcome.

Right now there is too much going on. Erica is carrying our daughter Sarah - scheduled to be delivered via C-section on 16 January. Levi is still having fun in preschool, and I was, up until this point, scheduled to be deployed back to Afghanistan in April.

Email to family & friends:

Family and Friends, Today, Erica and I went to Duke University Medical Center in Durham, NC with our youngest son Isaiah due to an eye problem that has developed aggressively over the past week and a half. Isaiah was diagnosed with a type of cancer called Retinoblastoma - which at this point has resulted in the retinae of his left eye to completely detach and has caused blindness. Because the tumor is in his eye, Isaiah will lose his left eye and be fitted with a prosthetic eye about 6 weeks after surgery. The next step is examination under anesthetic and a CT scan to formally diagnose the cancer and severity. Then we'll go from there with treatment which will include removal of Isaiah's eye, possibly chemotherapy, and frequent checkups until Isaiah's at least 5 years old - he's 2 1/2 right now. How this developed: Late last week Erica, myself, and Erica's Mom & Dad noticed a glare in Isaiah's eye that looked like a cat looking at you or similar to "red eye" from a camera. We had an appointment with Isaiah's pediatrician yesterday followed by a quick visit with an opthamologist who referred us to Duke this morning. The doctor at Duke told us there are two forms of retinoblastoma - genetic and abnormal development (chance). The genetic condition is caused by a rare recessive gene that either Erica or I could be carriers of and usually results in both eyes being affected. An abnormal or chance development of the cancer/tumor is usually confined to just one eye. The good news is that Isaiah will be treated by Dr. Buckley (info included at the bottom) who is one of the best doctor's in the U.S. and specializes in pediatric opthamology plus his crew at Duke, one of the best medical schools/centers in the world. Although Isaiah will lose his left eye, he has full vision in his right and is still at a young enough age that he'll learn to adjust. Retinoblastoma is one of the most survivable and curable of all childhood cancers. Also on the plate, our daughter Sarah will be born on Friday 16 Jan, delivered via C-section. Too much is happening right now. I ask that you please keep our family in your prayers as we will you. Please feel free to read the information below. I'll keep everyone posted and let you know what comes of Monday's official diagnoses. Please feel free to read information at the below links to learn more about Isaiah's condition and his doctor. Our Love and Prayers, Damon & Erica