Another Ian Update
On the morning of October 16th, I took Ian down to Children’s Hospital to get a 40-minute EEG after we noticed some “episodes” of what we thought might be seizures. He starts starring, gets wide-eyed, and becomes unresponsive. The results came back as having “abnormalities,” but no seizures were detected. As it has been explained to me in the past, this just means that Ian’s seizure medications are working to keep his seizures under control. Although most of Ian’s tumors shrunk back in April after starting the MEK inhibitor, there was one that did not- the one in the frontal lobe that is most likely the main source of the seizures. And as Ian grows, he will experience episodes of increased seizures that are just a result of his meds needing to be adjusted due to his change in growth. However, after talking with our neurologist this past Thursday, we discussed that perhaps the episodes we are seeing are not seizures at all, and that there’s a possibility that it is medication interaction or a result of Ian being on too much medicine. We decided to decrease one of his seizure meds, and we are also in the process of scheduling a 72-hour EEG. Luckily, we’ll be able to get the leads placed on a Friday and then bring Ian home for this so that we can all be a little more comfortable. The hope is that we’ll be able to capture one of the episodes we’ve been seeing on the EEG to confirm if it truly is a seizure or not.
This past Friday was Ian’s routine MRI and visit with oncology. Results showed that Ian’s tumors are still stable, which is always our goal. While shrinkage is always a positive bonus, it’s just that: a bonus. The real goal is to keep them stable. No growth is good news. While I would love it if all of his tumors decided to just go away forever, the reality is that that may never be the case for us. But, if we can keep them stabilized, stop them from growing, keep any symptoms he has from the tumors under control (like the seizures), then we are grateful for that. Ian’s quality of life has, of course, always been so important to us. The fact we got to bring Ian home after his brain injury, the fact he can walk without the use of a wheelchair, the fact he is able to go do things other kids do (maybe just with extra assistance), we are thankful we can give him that.
The only thing kind of negative of note was that Ian’s bloodwork showed a muscle enzyme is slightly elevated. This is a common side effect of his treatment, so it gets monitored. As of right now, it wasn’t high enough that we need to do anything about it, but we do have to keep an eye out for any muscle pain Ian may have between now and our next scan in 3 months.
The only major appointment, as of now, we have coming up between now and the next MRI is an appointment at the end of November for the Brain Injury Clinic. We see a group of different specialists all at one time to discuss Ian’s progress and current needs. This includes behavioral health, rehabilitation, critical care medicine, physical therapy, occupational therapy, and speech therapy. While it’s a very long appointment (usually a couple hours), it’s nice to be able to get it all done at one time and have everyone working together for Ian’s care.
I noticed this time around, I seemed to be calmer and more positive about the MRI results. While I still tossed and turned in the middle of the night, I didn’t feel negative about the scan. I wasn’t overly worried or anxious, at least consciously. While I think subconsciously, I always will be, I think I’m finally learning what it means to take things day by day. Moment by moment. I’m learning how to do things that fill my soul with happiness during these times instead of sitting in my thoughts and letting them consume me. I’m learning how to begin healing. Although the scars of the trauma Ian’s medical issues have brought me will never fully heal, I will learn, and am learning, how to not let the fear take over our lives. If I live in constant fear of what might happen, I teach Ian to live in constant fear of what might happen to him. And that’s not a life I want him to live. He has taught me how to live in courage, strength, perseverance, and faith. All without probably even knowing it because he’s just living. I think that’s the most inspiring part of a child’s fight against any medical diagnosis: they just live their life to the fullest. Happily and lovingly.