Tumor Review Board

Dear Friends,

In our last post we shared with you that Caleb would be having a test conducted by his Endocrinology doctor to check for proper pituitary function. Caleb did an excellent job during this test and we thank you for your prayers. The test results came back, and they didn’t contain good news for us.

The specific test conducted was designed to measure Human Growth Hormone levels as they respond to the “things” in our body that are supposed to suppress their production. The markers for these things in his blood were outside of the appropriate range for his age. It was discussed by his Endocrinology doctor that a likely cause of these imbalances was the growth very near the pituitary gland.

The next step was today – today there was a tumor board review for Caleb’s case. In these reviews a series of doctors review the most recent information and make decisions with regard to the plan of action.

I tried several times today to reach the Ophthalmologist, the Neuro-Surgeon and the Endocrinologist but for a series of reasons (all perfectly good) we were not able to get in touch with them. I was able to talk with the Neuro-Surgeon’s nurse and she gave me a very quick summary which included strong suggestion that either a biopsy or chemo would be the next steps.

For over four years now we have not had any considerations such as this that were so near to actuality – so these thoughts and possibilities have taken an emotional toll on us today. I want to repeat that I have not actually spoken to any of the doctors yet, and that I will try to get in touch with them again tomorrow for sure. Right now we are scheduled to meet with the Neuro-Surgeon on Wednesday at 2:00 and on Thursday with Genetics. I am hopeful that we will get clarification after these visits.

We whole-heartedly request your prayers for wisdom in our conversations, with our words and with what happens next. We want what is best for our son – no question about it - but we are also scared of the choices we will have to make for him. We don’t know anything for sure because we have not talked to the doctors, but the news that we do know has been deeply troubling for us today.

Thank you for your thoughts and prayers.