Tuesday, March 8, 2011

Uncharted Waters

Thought we would let everyone know we were able to make a decision about Drew and a go forward strategy. Dr. Neglia called us from the airport yesterday and we discussed where we were at with his case. He had already spoken with Dr. Wilson (St. Judes) a couple of times. The tumor is closer to the optic nerve, so it is a possibility it will affect the optic nerve and therefore the vision. Our options are limited but here is what was on the table:

1) External beam radiation. This would be a 5 week treatment, five days a week. Drew falls into the category of hereditary bilateral retinoblastoma - this does not mean it came from someone in the family. Hereditary means his gene mutation indicates he has the ability to pass it on to his kids some day. Due to being in this category, he has a 28-50% of secondary cancer from radiation.

2) IA in New York. This procedure puts him under and send the chemo directly to the tumor through the optic nerve. Treatment would be once a month for 1-6 months. It has only been done since 1996, so we are not aware of the long-term impacts of the treatment. They don't believe there is a high risk of secondary cancer, however, a higher risk of lose of vision.

3) Remove the eye. This would be a last resort if we can't figure something else out.

4) Replace a radiation plaque. They would sew a radioactive plaque the size of a nickel inside the eye to the affect area. The plaque remains on for 5 days, and is removed. At first they did not think this was possible, due to the closeness to the optic nerve. Dr. Merchant and Dr. Wilson at St. Judes have done additional measuring and feel this is possibility. The theory of why it didn't work the first time, because the radiation may not have gone through the entire tumor. They can rotate the plaque 180 to get the active area. There is a 5-20% chance of partial damage to the vision, due to radiation reaching the optic nerve. The cumulative affect of this treatment in with all others means a 5-10% of secondary cancer. The doctors think more on the 5% side.

Tony and I have had many discussions with the doctors over the last week. Dr. Neglia feel it is best to proceed with the plaque at this time. This provides the least risk, with the greatest reward. What is next - I will return to St. Jude's on March 22nd. They will take a look, and see if anything has changed. If the tumor has not gone, they will take measurements for the plaque. It takes about 7 business days to prepare the plaque, so Drew and I will come home. We will return to St. Jude's, when the plaque is ready to be placed. Tony and I are at peace with this decision. The doctors have indicated we are in uncharted water, so please keep him in your prayers.


Carol Gutwein said...

I have thought that no news was good news for a long time, at least since that last blog entry several months ago. I honestly am in shock at your latest news and wonder why? However, I will go to the website to pledge a modicum of financial support, and will forward the link to Carlsbad in hopes that they can muster some renewed support. I don't know what else I can do from so far away other than to assure you that every fiber of my being is hoping for the best for you and your family. I am so sorry to hear about the latest chapter, but if the past is any barometer, I know that you have the family, friends and faith to conquer. My love to you all. xoxoxox With love from Utah

Ellen said...

Dear Tony and Heidi...as you move ahead with your decision, know you have nothing but prayers and support from all of us who love you, Drew and Jack more than words can say.
Ida and I send a special hug your way.
Thank you for your kindness in keeping us so factually informed about options, and your decision.
So much love, Ellen