9.14.22
I don’t think today’s appointment has hit me yet. It wasn’t something that was on my radar as a possibility, so I think I’m still processing it.
Ian was diagnosed with DNET brain tumors back in July of 2019. Fast forward to now, September 2022, we have always been told Ian’s tumors are low grade, which means they grow slowly. And that has always been the case these last 3 years. Catching his growth when he was on chemo was because our oncologist took the time to compare recent scans to the first scan. But when you compare just the two most recent scans, the growth was so minimal, it wasn’t even on the radiologist report.
Given that information, we were caught off guard to find out today that one of Ian’s tumor has doubled in size. This particular tumor is blocking the cerebral fluid, causing some swelling in the ventricles. Luckily, Ian hasn’t had any symptoms that something like this causes, so they believe there’s enough room for the fluid to still get out, but it’s minimal, and we’ll need to take care of this soon.
Tomorrow morning, we’ll meet with neurosurgery to go over what our next steps are. Possibly a shunt to help relieve the buildup of pressure on his brain and doing another biopsy since it is behaving different than our given diagnosis. Monday, we will meet with ophthalmology to check Ian’s eyes to make sure the tumors aren’t pushing on his optic nerve and causing buildup of fluid there.
That’s the extent of what we know for sure right now. More answers will come after tomorrow’s appointment and after the surgery on how to proceed next.
Please keep Ian in your thoughts and prayers as we maneuver through this next obstacle. And thank you all for your kindness and support during these difficult times. We know our boy is strong and resilient and will get through this.
9.15.22
We met with neurosurgery this morning to decide what will be the best way to proceed.
Ian’s surgery is scheduled for September 30. The plan is to get a biopsy of the tumor to make sure we aren’t dealing with something other than DNET tumors. They will then poke a hole going through the tumor itself so that the fluid has a way through. This is the least minimally invasive and least risky route. If this doesn’t work for some reason because the tumor continues to grow and closes the hole back up, Ian will then have a shunt put in.
Unfortunately, this tumor is still deemed inoperable because of its location. The only reason we are able to get samples for the biopsy is because it has now invaded the ventricles. But most of the tumor sits on the part of Ian’s brain that controls his motor skills and coordination. This isn’t something we want to mess with if not 100% necessary. Our biggest goal out of all of this is to make sure Ian gets to live a fulfilling life and gets to continue to just be a kid.
If all goes well, meaning no complications, Ian should be discharged from the hospital the next day and should be able to return to school that Monday. Once we get the results of the biopsy, we will follow up with our new oncologist to decide on a possible chemo, if deemed necessary.
Yesterday was actually our first day with our new oncologist since our original oncologist has left. We were extremely nervous, not sure what we were going to get and if we would be just as satisfied, but we had an amazing first impression of him, even given the situation. He took the time to thoroughly explain everything to us, all the changes since the last scan, and a little bit about what to expect ahead. He was also very playful with Ian and was able to do the exam kind of on Ian’s terms. (ex. checking his mouth by making him laugh, which is also huge for us). He immediately made us feel like we were in good hands.
The plan right now is to monitor Ian up until surgery day for symptoms like headache and vomiting. If he has these symptoms, along with extreme tiredness, we have to immediately take him to the ER to be admitted and do the surgery sooner. We will be trying to stay in our normal routine as much as possible these next couple of weeks. We will be focusing a lot on both of the kids, as well as ourselves, and leaning into our faith right now.
It has been a whirlwind of emotion the last 24 hours. It’s starting to feel like when Ian was first diagnosed because we don’t know why this tumor is suddenly acting different. It was there, on the first scan, back in July of 2019. Growing slowly like the rest, and we knew there was a possibility of blockage. But to double in size from 3 months ago? To change in appearance? (Ian’s other tumors look like dark spots on the MRI, this one has a white ring around it and appears to have a soft inside and a hard outside.) It’s scary to think we could be dealing with something else. Something more aggressive. We always focused on the positive in our situation: Ian’s tumors were low grade so we didn’t have to attack aggressively. They were also declared benign and wouldn’t spread to other parts of his body outside of his brain and spine. To prepare for a whole new diagnosis is not something I anticipated.
I don’t have much to say right now outside of that. If you’ve made it this far, I want to thank you for caring and reading our journey. Please send positive thoughts and energy our way and pray for our sweet boy. No child should have to go through this.
