Figuring out the Tumor Drainage Schedule - Email Update

Figuring It All Out

Over the past few months we have been trying to figure out what to do and how we want to continue to treat Eli’s tumor. Our last update discussed how we were going to try another round of intra-cavitary bleomycin in an attempt to weaken/kill the tumor. After 9 more rounds there was no change in the tumor status. Therefore, we decided to totally drain the tumor under propofol (anaesthesia – propofol is very safe – don’t believe the Michael Jackson hype!). Our hope was that the tumor would refill slowly because the chemo had damaged its ability to produce fluid. We waited 2 months and had another look by MRI – against our hopes the tumor had completely refilled to its beginning size. At that point we knew the chemotherapy treatments were a failure. Because of the toxic effects of the chemo and the non-response there is no reason to try more. So now what!!!

We decided that the best way to treat the tumor is to drain it under anaesthesia as needed. What does “as needed” mean? Essentially, we will drain the tumor when it refills to about its starting size (maybe a little smaller). So how frequently will that be? Well, we are still figuring that out. We last drained the tumor 2 weeks ago (Nov 3rd) and did another MRI on Nov 12th. At that time it was about ½ full. We will have another MRI on the 24th and check the status again. By doing MRI’s ever few weeks we can see how quickly it refills so that we know how frequently we need to drain it to keep the tumor size minimal, but at the same time not have him going under anesthesia every week. Most likely we will need to drain it every 6-10 weeks. We will continue with this approach for as long as we can in order to avoid surgery and radiation. For more info on why we have chosen this path please visit the blog. So that is where we stand today – still figuring out how to fight this thing while preserving as best we can his cognitive, emotional, vision and endocrine functions.

As always thank you for keeping us in your thoughts and checking-in on us! It makes us so happy to get your emails and see your comments on the blog.

All our love to you and yours,
Meagan, Jacob and Eli