We don’t even know where to start with trying to communicate what has been the worst week of our lives. We wanted to try and create something that allows us to share some information.
Our beautiful little boy Jan Blaise was found to have a very large brain tumor Tuesday night. He needed to have an emergent procedure to place a drain to allow swelling from obstructed spinal fluid to decompress. He was intubated (breathing tube) for the procedure and remained intubated so that we could get further imaging. Yesterday he was finally able to tolerate getting multiple MRIs and our biggest fears were confirmed. His tumor is very large and appears very aggressive. It involves many structures that are key for not only his development but interaction and enjoyment of life.
The tumor is not surgically resectable because it is so large and involves these important structures. They are running a few more noninvasive tests to see if we can figure out what type of cancer this is. Treatment options are very limited since surgical resection is not an option and radiation is off the table due to his very young age. We are exploring our options but our main goals are to make him as comfortable as possible for what ever remaining time he is able to share with us. We do not want him to suffer. He has already shown us how strong he is and tolerated being taken off the ventilator last night.
We are so overwhelmed with the love and support we have already received as this has gotten out by word of mouth. This has been tough being so far from our immediate family but we are amazed at how large our extended family and friends really are. The physicians, nurses, PAs, NPs, respiratory therapists, techs, chaplains, pharmacists, nutritionists, social workers and staff have all been tremendous in caring for our little man. We are so very grateful for all the love, prayers, and support. It has comforted us and shown that we are not alone in this. We will try to keep people updated but thought having a more central way to disseminate information would help as we aren’t always able to respond to texts right away.