Since Ian had an oncology appointment yesterday, I thought I would write a little update on how his treatment is going. We’ve enjoyed the opportunity to get to give Ian a pill at home versus a weekly infusion. This could still be in our future in addition to the medication he is on now, but we’ll see what his next scan in April shows and go from there. Ian didn’t have any symptoms for the first two weeks, and silly me thought that we would be in the clear. The following two weeks after that would prove to be slightly troublesome, but not nearly as bad as what it could be. One of the major symptoms of the MEK inhibitor is diarrhea. Ian unfortunately is no longer potty trained since his brain injury. So, we were getting a few blowout diapers here and there. And when it seemed like this was settling down, Ian began throwing up as well. We thought he was getting motion sickness because he seemed to get during long car rides, like to the hospital and back. But this past week he threw up at the end of his outpatient therapy session (roughly 2 hours after being out of the car) and again in the middle of the night on Wednesday. Oncology thinks the randomness of it means it’s most likely linked to the medication and not because he is experiencing pressure on his brain again. It’s rare to throw up on this medication, but something being “rare” is something our family is used to experiencing at this point. We have Zofran for him to help with this, and hopefully as his body gets used to the medication, the side effects will subside. Another symptom Ian had is an eczema rash all over his body. It’s not super bad, just in random places all over him. He’s also had a couple blemishes pop up on his face, but again, nothing super bad. All in all, these symptoms are more manageable, and Ian is able to go about his normal routine.
We will follow up with oncology again in March so see how his symptoms are going. From there, we’ll follow up with them again in April with his routine MRI, as well as an echocardiogram to check his heart. And from there, it’ll be 3-month appointments like the April one, unless problems arise beforehand.
In addition to oncology, we will also follow up with neurology in April to check in with Ian’s seizures, which have been under control since our hospital stay. We also had multiple appointments with neuropsychology this month to see how Ian’s development is compared to his peers, compared to his last evaluation (in 2019), and compared to before his brain injury. We weren’t really given any information that came to a surprise to us, but Ian is still in the early recovering phase of his brain injury. We’ll keep an eye on his progress, keep working with him, and follow up as needed.
Ian, overall, is doing really well though. We’ve been hearing him laugh again for the first time in what feels like forever. It’s been the sweetest noise I’ve ever heard. I’m so grateful that Ian is home and healing each and every day. I don’t think I can ever express that enough. We were moment by moment for so long. It finally feels like we can do day by day again. Everything happened so fast when Ian got rushed to the hospital. It’s hard to think these days can just be ripped from us at any moment. Without warning. But we can’t dwell on things that MIGHT happen. We can only be present in each moment, making sure every second spent with him, and with each other, counts.
