Ian Update- 8/21/24

When Ian was diagnosed with his brain tumors in July 2019, we have gone down to Children’s every 3 months since then to get new images of his tumors. So, today was one of those routine scan days. We did just get images a few weeks ago when he needed emergency surgery with his shunt placement, but today’s scan was followed up with oncology.

The result: tumors are stable!

For us, stable is good. This means the tumors aren’t increasing in size. Of course, we would love it if they shrunk and disappeared altogether, but this is also good news.

In addition to the MRI and follow up with oncology, Ian also gets bloodwork and an echo of his heart. Both of these things also came back good.

Today was different in the sense that this is his first MRI with his shunt. If you don’t know, Ian has what is called a programmable shunt, meaning the valves are adjustable by the doctors without having to go in and do another brain surgery. However, it’s adjustable through a magnet. And if you don’t know, an MRI machine is a giant magnet. So, what does this do to Ian’s shunt?”

Shunts are a very common thing among kids with brain tumors. They need to be able to have the fluid safely drained, so pressure doesn’t build up in their brain/head, but they also need to get MRI images to get the clearest picture of their brain tumors. The solution is quite simple: someone from the neuro team comes down and readjusts his shunt when he is finished with his scan. How great is it that we live in a world where we are this advanced in technology and practices? Without either of these things, Ian could very easily lose his life, to be blunt. But instead, we are blessed.

“And from his fullness we have all received, grace upon grace.” John 1:16

And with that, we are off to a good start for the beginning of a new school year. Ian and Gabby will both be starting school tomorrow- both of them also starting new schools this year. Gabby will be going to high school, Ian will be starting second grade, but at a different school within our district.

So far, we have not been able to have a “stable” school year for Ian. His tumor hemorrhaged at the beginning of kindergarten, leaving him out of school for nearly 10 weeks. And when he did return, he was only there for 3 days a week due to needing outpatient physical, occupational, and speech therapy the other two days. In first grade, this past school year, we had issues at the beginning of the school year with Ian’s one-on-one nurse. The school hired a nurse through a nursing agency to be with Ian during the school day due to his medical issues to have that extra eye on him. Unfortunately, his last nurse called off a lot, and the nursing agency didn’t have anyone to replace her. If no nurse was available, Ian wasn’t able to go to school. This caused Ian to miss about a month’s worth of school that wasn’t due to his own doctor appointments.

We are feeling really good about this year though. The school has since switched nursing agencies, and we haven’t had an issue since. His new nurse is wonderful with him, and we are thankful to have been given the opportunity to meet/talk with some of the staff (teachers, principal, school nurse) at his new school. They seem to really want to have Ian included in things, which is all I can ask for. I know Ian is limited in his abilities of what he can actually do, but he can only improve if he’s given the chance to try. Between that and his overall health being good, we are feeling really good that this is going to be a good school year for him. Even with the emergency surgery over the summer, the shunt placement has actually been helping Ian in ways we didn’t think it would. For example, he’s been moving his right side more and gained some strength back in it. Which is awesome to see.

As nervous as I am, I’m even more excited to see what this year brings!