It’s been a while since I have given an Ian update. But with his next scan right around the corner, I figured it would be a good time to give an update.
12.17.2021 – Ian had his last MRI, which showed the tumors were still stable. We have an amazing oncologist who actually gave us the results in the waiting room, still waiting to go back and see Ian in recovery. At that time, he also told us that the clinical trial we have been hoping to start on is estimating 6 months before we will be able to get on it. (We really want this clinical trial because it targets the specific mutation Ian has that are causing his brain tumors.) There were talks of possibly starting something else in the meantime, but this will depend on if the tumors start growing again before we are able to get the clinical trial. There is one specific problem tumor that is at risk of blocking fluid in Ian’s brain. Because none of the tumors actually shrunk the whole year he was on chemotherapy, it’s still at risk. We won’t know much else until our next scan, which is coming up next month (March 14).
In addition to this, we FINALLY got the seizure-like episodes under control. As a lot of you know, Ian began having episodes, as we like to call them, where he would continuously dart his head to one side, and then all of a sudden it would drop. I have multiple videos of him doing this, with things only getting worse as the months went on. Ian would not respond during these episodes, but he could for a brief moment after his head would “drop.” When the episodes would start again, he would stop talking mid-sentence. He also began to slur his speech during these episodes, and he would get very sleepy right after. All of these are major signs of seizure activity and almost mirror what we initially saw when Ian was first diagnosed. Ian then began waking up in the middle of the night with shakes that mirrored more like shivering than convulsive seizures, and his episodes began happening every day, or every other day, sometimes twice a day. We added a second seizure medicine, on top of the one he already takes at max dose, but this one had absolutely no effect on him. Now, he takes 1/4th of a 0.5 mg tablet of a medication called Clonazepam twice a day, on top of his original medication. Since starting the medication, Ian has not had any more seizure-like episodes, thank goodness! We did have an EEG done in September, but it didn’t catch one of the episodes to say for sure if that’s what it was. However, due to him responding to the medication, his doctors feel that’s probably what it was. Once we had the medication that worked for him, Ian’s neurologist had brought up possibly doing an extensive EEG at some point. (Extensive meaning over the course of 2 or 3 days). She also brought up surgery, however, in the beginning of all this, we were told Ian’s tumors were inoperable. Because this medication ended up working for him, this isn’t something we have to worry about right now, or any time soon, but it may be a conversation in the future. And it’s one that gives me anxiety to think about. I pray the time doesn’t come where we become so limited on our options that we have to decide if our baby boy should get a risky surgery. I can’t think of this part for too long- I’m already crying, so let’s move on since it’s not something we have to worry about right now.
It’s been 2 months since Ian has been off his chemo. And we have been trying to soak in every second. Not having a doctor’s appointment to go to every week has felt like a vacation. Ian is thriving. He’s still growing like a weed- I’ve gotten rid of most of his 4T clothes and made room for size 5. We signed him up for indoor soccer, which he loves going to. He even gets to play with his cousin, Elias, who, as some of you know, is my nephew who was diagnosed with a rare form of leukemia in 2020. (Eli is still in remission and doing AMAZING!) My sister and I never thought our boys would battle childhood cancer together, but playing sports together was something we dreamed about. There was a point where either of us didn’t know if we would get to see that, so watching them play has been a blessing. We also went to Kindergarten Registration a couple weeks ago. I cannot believe Ian will be starting Kindergarten in the fall. While this is normally at least somewhat of an exciting time, I have so much more worry. Ian currently attends a special needs preschool 3 days a week for 2 hours each day. I am worried about the adjustment from that to 5 days, all day. Ian will most likely be put into an Autism support classroom. At this point in time, I don’t know the scope of what his day will look like until the school contacts us for their evaluation. There’s also the worry of making sure the nurse will know Ian and all his medical needs. And there’s a million other things on top of all of this, like his immunization records. Because Ian was on chemo this past year, he is not up to date on his shots as of now, and he cannot get his shots until he is off chemo for 6 months. However, in 6 months, we could be starting another chemo. I know there’s an exemption, and I know the school will be understanding, but having everything up in the air right now has me riddled with so much anxiety. I want to be in control of it. I want to know what’s going to happen. But that’s life. You never know what’s going to happen. To ease the anxiety, I just keep making sure to focus on what I can do- my new job, my schoolwork, spending time with the people I love. And when it’s too heavy, I do my yoga and meditation to help calm me down. I am continuing to make sure I take care of myself when I need to so I can continue caring for Ian, as well as Gabby.
As usual, we are just taking it one day at time, one step at a time.
