Caleb Update

Dear Friends,

We met this past Thursday with a Geneticist at Vanderbilt to have Caleb reviewed for a genetic condition called Neurofibromatosis. If he has this condition it will be helpful in describing his tumor – for possible treatment. In review of Caleb, the doctor was unable to identify Caleb as having NF and went so far as to say he does not believe he has NF as it is commonly seen in children. We have a blood test that is scheduled to be back on Thursday that will hopefully add confirmation to this clinical review.

The Geneticist did however present us with a third possible option for our next steps. He was able to locate two studies conducted on children who had similar circumstances including the tumor. This option involves treating Caleb with a synthetic form of a hormone that our body uses to regulate the production of growth hormone. There have been some theories that an abundance of growth hormone may contribute to the growth of optic pathway tumors (what Caleb has) and that if properly regulated we may be able to stop the progression of growth.


Treating with this hormone may then buy us two wins – it could stop the growth of the tumor and it could help his body better regulate growth hormone.

This week is going to bring some more tests to confirm the findings we are dealing with and more conversations between doctors regarding this possible alternative. Please pray for wisdom in these conversations, that fear will be bridled by risk and that the correct next steps can be determined.