5 Jan 2008 - Update, 2nd Trip to Duke

Yesterday, Monday 5 January 2009, was a great relief for Erica and I. We took Isaiah to Duke University Medical Center where he was examined under anesthesia (EUA) and had a CT scan. The doctors did a few scans of Isaiah's left eye to see the full extent of the Retinoblastoma and make sure his right eye was okay. The CT scan was performed to look at the orbits of his eyes and brain to see if the cancer had spread outside his left eye. The full prognosis so far is that the Retinoblastoma tumor in Isaiah's left eye is very large and has completely taken over and occupies the entire eye. Our relief was that the cancer was simply confined to his left eye. Isaiah's right eye, orbits, and brain are completely free of tumors and are normal.

Erica and I decided to have Isaiah's left eye removed once we were presented a couple of options for dealing with his case of Unilateral Retinoblastoma. We decided this was the best option to battle the cancer because Isaiah is already blind in his left eye and will not regain vision even if the tumor is shrinked using radiation or chemotherapy. The other options significantly increase his chance of developing leukemia or other cancers throughout life. If the tumor was smaller and Isaiah's vision could have been saved, we may have decided to use other treatments.

Isaiah will have his left eye removed on Monday 12 January; a process called enucleation. During the surgery, he'll have a plastic, rubber, or coral ball put in place of the lost eye. His eye muscles will be attached so his "fake eye" will have near natural movement. We'll go back to Duke Eye Center the day after surgery for a checkup. Three weeks after checkup, Isaiah will be put back under anesthesia for another examination and be fitted for his "fake eye" by an ocularist. Isaiah's "fake eye" will look exactly like his right eye and will be ready for him about 4-6 weeks after surgery. He'll have to wear protective glasses throughout childhood for protection and preserve his vision.

Once Isaiah's eye is removed it will be sent to pathology to examine the optic nerve. There are three situations which will determine if he needs chemotherapy. If cancer cells are in Isaiah's optic nerve, he'll have to have chemotherapy, probably about 5-6 rounds. If the cancer went down close to the optic nerve and they believe there is a chance some cancer cells may still be present in Isaiah's system, then he'll most likely have 1-2 rounds of chemotherapy. If the cancer stayed in the eye and there are no cancer cells in the optic nerve then Isaiah will not have to go through chemo and simply have to deal with frequent checkups till he's about 5-6 years old.

Isaiah will have to go back to Duke for an EUA every three months, probably for the first year. As time goes on, the duration between EUA's will extend to every 6 months and will probably stop when Isaiah is about 5 or 6 years old.

We are rejoicing at the news we received yesterday because the cancer is just in Isaiah's left eye - take his eye out and remove the cancer, with chemotherapy being a possibility. Please take a look at the picture - the top image is of Isaiah's right eye, the bottom is of his left. You can easily see that the tumor completely takes up the left eye.

Because Retinoblastoma has can develop due to a genetic abnormality, Duke genetics specialists will be doing a genetic study to confirm/deny if it can be passed to Isaiah's children. This will take a few weeks. Baby Sarah will be checked at birth for Retinoblastoma and will have frequent eye examines until we confirm it is not genetic.

Levi has been a great big brother through the entire process. Although he's three and a half years old, Levi has a good understanding of what is going on with Isaiah. We told Levi when Isaiah was diagnosed with Retinoblastoma, that his little brother's eye was sick and we were going to take him to the doctor to make things better. Shortly after this I walked in on the boys without them knowing I was there and found Levi telling Isaiah with his arm around him that his eye was sick and Mommy & Daddy would take him to the doctor to make it better. Yesterday we told Levi that Isaiah's eye needed to be removed and he would get a fake eye to replace his sick one. Levi has already made our explanation simpler by explaining what was going to happen to Isaiah. I couldn't be more proud of how he has managed and coped with everything.

Isaiah has coped just the same. Although he doesn't fully understand what's going on, he has expressed himself when going into doctor's offices or being poked & prodded for vitals. He'll grow up having very little memory of what is going on now and he is already learning to cope with vision on one eye. Just having one eye will not impact his life - well, he won't be able to be a commercial pilot or join the military (darn). I've come across other kids through research who only have one eye due to Retinoblastoma and are golf prodigies soccer stars. The important thing is that we raise Isaiah the same as we are Levi, without showing favoritism, instill good values, and foster self confidence.

Next week's schedule will be busy. We'll be up at Duke on Monday and Tuesday for Isaiah's surgery and follow-up. Erica has her pre-op appointment on Wednesday for Friday's scheduled C-Section to welcome our daughter Sarah into the world. There is a possibility that the C-Section could be moved up to next Wednesday - we're waiting on Erica's doctor to give us a call back to confirm. We appreciate everyone's support and prayers.