Hey everyone,
Well, it’s been over three weeks since the surgery, and Ian is pretty much back to normal, his recovery after such a thing has amazed everyone. We also finally got some results from Johns Hopkins… I don’t like that I’m the one that does this, I can’t imagine being a doctor or someone that bears bad news consistently…
Basically, our oncologist, has never seen anything like this in all his years… and the doctors at Johns Hopkins (the ones that examine every tumor ever) said they’ve only seen it a few times, but only in adults… they’ve diagnosed it as “primary adenocarcinoma of the brain” and that it’s one in millions of millions. So there is no protocol, there is no standard, there are no stages, there are no predicted outcomes.
They originally wanted to stay away from intense treatments as long as possible because the short term and long term side effects are drastic at his age, but we are now aware that the tumor is very aggressive, and we need both radiation and chemo.
Here’s our schedule as of right now: On Wednesday, he’ll have a PET scan to search for tumors elsewhere in the body. On Friday, the doctors will insert a port to make any type of IV issues easier, they’ll also do a bone marrow biopsy. Radiation will start on Monday June 1, and will be everyday Monday-Friday for 6 weeks. He’ll have a break for a few weeks, and begin chemo the third week of August, and be done in March. And then no one knows…
We’re in a daze to the say the least; there are many tears at unexpected times. These last few weeks have felt extremely eerie… because everything was feeling back to normal, and there were small moments that I could pretend like it was all going to be ok… but it’s like we’re in the eye of a very massive storm, and we just found out that the worst is yet to come. It’s unbelievable to think that the surgery was the easy part.
Well we have this week of playing, and parks, and bike rides, and then treatment starts. We’re in for a battle, and ready or not, we’re going to fight… Thanks for your continued thoughts and prayers, and standing by us. Keep it coming…
Still in shock,
Nicole and Family
