Thank you all so very much for your calls, texts, emails, and the many letters we've received from anonymous encouragers to let us know you were praying for us and that you are with us in this process. We are truly grateful as we feel the body of believers continue to minister to us. The news from Caleb is that we have invested several weeks in the process of trying to get an additional opinion on the conclusiveness and reliability of the options before us. This process has not been easy because it requires a lot of coordination and planning to get everyone on the same page, but we have been blessed to interact with some very caring doctors who reviewed the notes and tests we have on Caleb in a joint review in effort to give us an additional opinion on next steps.
The doctors at Boston Children's hospital have returned to us with opinion that their advice to us would be that given he has no clinical complications, lack of a "curative" treatment and certain side effects of treatment options - we should continue watching. The clinical complications that we would be looking for would be a decline in overall visual function, peripheral, or color. This news did catch us by surprise, but it was also a breath of fresh air at the same time. Our hearts were very troubled with the decision to treat for these very same reasons mentioned.
We are now in the process of reaching out to our doctors at Vanderbilt. We have let them know of our intent to continue the watch plan and are awaiting their reply. Our prayer request would be for the hearts of our team at Vanderbilt. In this instance this really isn't about a right or wrong answer, because everyone is trying their best to make wise choices. There isn't a certain choice to make as both have risks. Our situation is about weighing the risks and making the choice we as parents feel best about.
This has been a wave of emotions - up and down. We have been burdened, but we have not been overcome. We recognize that life has some very hard things to deal with, and for one reason or another this is one of those things for our family. We know that we have a heavenly father who cares for Caleb more than we do and we know there is a plan for Caleb. It remains a possibility that we will end up in treatment and it may be touch and go every three months for years, but today we are thankful that we are not entering the process immediately.
We appreciate each of you very much and are blessed to be surrounded by the love you have demonstrated for our family.
Austin & Nicole