Routine Scan Day 1/31/24
July 3, 2019. The start of it all. The day Ian had his first convulsive seizure. The day Ian had his first MRI. And in the middle of the night, hours into a new day, we would learn there were lesions found on Ian’s brain and that he would be taken down to MRI and put to sleep so that they could get a clearer picture of what the lesions were. And what that longer MRI would show is that Ian had tumors all throughout his brain. And what that began was routine scans every 3 months from there on out.
An MRI. Every 3 months. For the last 4 and a half years now. And add in a few more for unforeseen circumstances in between like brain bleeds and breakthrough seizures. This is our normal.
Today was another one of those days. A routine scan. An echocardiogram. An oncology appointment to follow.
What the scan ultimately showed was that there were some enhancements in Ian’s tumors- this isn’t to be confused with progression, so let me explain. “Enhancement” of a tumor means that it took up more of the dye contrast that is used to more clearly see the size and shape of the tumors compared to what it did in previous scans. While many of Ian’s tumors took up more dye, the size of them remained unchanged, so his tumors are still considered to be “stable.” They don’t really know why tumors will take up more dye compared to other times, but one possible explanation we were given is that it could be seizure related, which could make sense since Ian just had breakthrough seizures earlies this month, but we can’t say for certain if that’s why or not. But regardless of these enhancements on his scan, the tumor sizes did not increase, so we are to continue on Ian’s current treatment and return once again in 3 months.
But even though Ian’s tumors are stable, it is looking as though his ventricles have slowly began to increase in size. Increased size in the ventricles is typically a sign of hydrocephalus, which means the cerebral spinal fluid is building up in Ian’s brain. The last time this happened, it was when Ian had his bleed. When they removed the problem tumor, we were told this could be an issue still in the future. And now we fear that day may be here.
The solution for this would be that Ian would need to have a shunt placed that would help drain the excess fluid away from his brain. But we first need to discuss this with neurosurgery to see if they agree that this is the next step to take. I’m not ready for another brain surgery, but I’m definitely not ready for another situation like we were in last September.
As of right now, Ian isn’t experiencing any symptoms of hydrocephalus, which is good. In fact, I would even dare say he’s been doing fairly well, considering how our last month went with this news and his breakthrough seizures, which have since become under control since adding a third seizure medication. He’s become much more motivated to do the things he used to be able to do. He’s become a little more defiant, and although that doesn’t sound great, it is who Ian is- that was his personality before his brain injury, so we are happy to see him coming back. School life is also starting to improve, and we have a meeting with them tomorrow to kind of finalize those needs for Ian. And something we are really excited about is that Ian has FINALLY had a breakthrough with relearning to use the toilet. After his brain injury, Ian was no longer toilet trained due to the stroke he suffered. We have been trying and trying to get him to use the toilet, but we couldn’t seem to get it to stick. All of a sudden, this past weekend, he all of a sudden seems to have mostly gotten it. Completely out of nowhere. It’s an amazing victory and small reminder that we just have to keep working with him- that he has the potential to get there.
And that applies to more than just Ian. It applies to me and to you. When you feel like giving up, don’t. Keep going. Everything you worked for, everything you desire, could be right around the corner.