August 25, 2008 (Monday)

Getting to the hospital in the morning was quite the adventure as our van had a flat tire and required repairs. I sent Gracie and her mom in a taxi. We called ahead to the hospital and they wanted to reschedule but were convinced to keep the appointment. The exam and MRI happened on time. A retinal specialist and our pediatric ophthalmologist performed the exam, taking several pictures of the retina for us to see. They also reviewed the CT results from last Tuesday and the MRI results from today. The diagnosis was worse then we had ever even considered. Instead of a small tumor the right eye was full of tumors. The left eye also had two smallish tumors. Bilateral retinoblastoma was the diagnosis. That meant that the condition was hereditary and that chances of secondary cancers was greatly increased.
The right eye appeared to be unsalvagable and would have to be enucleated (surgically removed) in order to stop the cancer from spreading. In fact one of the tumors appears quite close to the optic nerve and this is a primary mode of transport for the cancer to the rest of the body. The left eye was treatable and the growths were relatively far from the fovea (place in the retina where most of the light hits and hence how we see). So chemotherapy would be recommended to reduce the size of those tumors before laser treatment. The laser treatment would then kill the cancerous cells and leave only minor scaring.
While these do not appear to be good options they are much better than allowing the cancer to take my beautiful girl.
Gracie was returned from her MRI after our meetings with the specialists and she soon was herself again. Happy and bubbly, her eyes beamed and her smile radiated love. Now the opaqueness in the eye is more frequent and offers a continual reminder of what is ailing her. She seems to have had no physical pain in her eye through all of this and her vision, until very recently, has been fine. Our pediatric ophthalmologist thinks it is likely that the cancer in the right eye has only recently been broken off of the retina and the tumor is not necessarily growing rapidly but peeling off the retina (those are my words not hers) so that it is larger and more visible.
I have spent hours looking through old photos for and evidence of leukocoria (cat's eye or white reflex) as this is often the first sign of a problem. There is only one picture from a couple of months ago that is suspect. Many of the others show a definite red reflex in each eye. Our pediatric ophthamologist says that this is not unusual and that there is no way we would have known there was a problem except with an exam under anesthesia like she did today.
We have many unanswered questions today but know that since it is heritable all other children must be tested and evaluated frequently. It was a real struggle to tell family and loved ones the news that we had so desperately hoped and prayed we would never have to receive. However we feel blessed with the prognosis and the early identification of a problem in the left eye. Gracie is strong and well and we are confident that she will overcome all of the difficulties that come her way. As one can probably imagine there has been a roller coaster of emotions today. We do not really want to believe what is being said but we also want to do everything to avoid further problems.
We spoke to Gracie's siblings today about what must happen and they are nervous for her and often do not understand why it has to be done. However it was nice for them to know and for us to talk to them about how much we love them and are concerned for them. We will do everything we can to keep them safe. They had many questions and I am sure will continue to ask. It is disconcerting for them that Gracie's new eye will not let her see from it but they are happy to know it will look almost exactly like her old one.
No dad wants to experience a day like this one and I think little prepares one for such experiences. However, I am happy to have Gracie and will love her no matter what.

This is the left eye. The top white spot with all the blood vessels coming out of it is the optical nerve. The other two white blurry spots are tumors that must by killed before they grow too large.

This is the right eye with the focus towards the optic nerve (right side of picture, small white dot), The large white mass covering a large part of the eye is a tumor that is not entirely attached to the retina anymore. The biggest concern however is the tumor that is adjacent to the optical nerve (just above in the picture). The optic nerve is the primary means that eye cancer moves out of the eye to the rest of the body, so this tumor must be stopped prior to it growing to the optic nerve.

This is another picture of the right eye (similarly aligned) but more focused on what they call visceral seeds. These are cancerous growths that are floating within the fluid in the eye. You can see quite a few in the bottom left corner of the picture. This is concerning because they are hard to kill as they are not connected to the blood supply.