Ian’s Cancer Journey
In July of 2019, right before our youngest was about to turn 2, our world got turned upside down when he was diagnosed with inoperable, multifocal brain tumors.
You never think it will happen to you. Until it does.
Up until that point, Ian was a normal-developing one-year-old. He was like most little boys, loved getting rowdy and dirty and was ALWAYS active. A couple months before he was officially diagnosed, we started to notice Ian was napping a lot more than usual. He went from one nap a day to 3. We didn’t think too much of it, until Ian tried going to sleep in the middle of our local splash park, after JUST waking up from a 2-hour nap. Something in my momma gut told me something was wrong. We immediately took him to Children’s Express Care. But as you can imagine, me saying my one-year-old is sleeping more than usual didn’t immediately raise a red flag to the doctor. (That’s probably some parent’s dream to be able to say.) We were told it’s probably just a growth spurt, and to just keep an eye on him. I didn’t notice anything else for a while.
Then one random day, I put Ian in his highchair to enjoy a little snack. He picked up the peach, and I watched my child turn into someone I didn’t recognize. He dropped the peach, his head tilted to one side, a half-smile across his face (the kind that scares you, not make you smile back), and his eyes were open, but it was like he wasn’t there at all. I yelled his name, a gently tapped his face, no response. I pulled him out of his highchair, my baby who always loved to cling on to me was just limp. Solid weight in my arms like he had no control over his body. I yelled for my husband, but it was over as fast as it started. My husband never even saw the image that is now permanently burned in my mind. My husband said maybe he’s just tired since it was evening time, but I knew. I knew what I saw wasn’t normal, and I knew something was wrong with my baby, but I didn’t know what. When I gave him a bath that night, it happened again. And I immediately made an appointment with his PCP. (I didn’t want to go back to the express care again, and I knew his PCP would listen to my concerns, which he did.) His PCP immediately made a referral to neurology, and explained to me that it sounded like Ian was having seizures. Something I didn’t understand at the time, seizures don’t have to be convulsive. In Ian’s case, he has starring spells. Within a couple days, I was down at Children’s Hospital telling the neurologist everything I had noticed up until this point. ANd almost like clockwork, as I was explaining what Ian’s face looked like during the episode he had, I turned to check on him….. and he was making the face…
I immediately said “like that” and in that instant, Ian fell over and began having small convulsions. The neurologist made sure he was otherwise okay, since he had just fell, scooped Ian up, and said “we need to get him to the ER and get him admitted. That was a seizure.”
After some tests, some phone calls, and some crying, MRI results showed multiple tumors across the left side of Ian’s brain. We went home for the weekend, to go back down on Monday for his first biopsy. On Ian’s 2nd birthday, we were discharged to go home and wait for the results.
We weren’t able to get a clear diagnosis at the time, but we knew it was low-grade, thankfully. We were able to monitor the growth of the tumors for a little over a year before having to start chemotherapy. Ian did his first regiment for 13 months, which did keep his tumors stable during that time, The tumors didn’t shrink, but we needed to give Ian’s body time to recover, so we monitored again. (He gets MRI’s done every 3-4 months.)
During a routine scan in September 2022, it showed that one of Ian’s tumors doubled in size. We were sent for a neurosurgical consult the next morning, but unfortunately, by that evening, we had to bring Ian to the ER. We came to find that the tumor that grew had hemorrhaged and was causing severe hydrocephalus. Ian had 2 EVD drains placed in his head to clear out the blood, and he was in a medically induced coma for 3 weeks. Once he was stable enough to come out of the coma, we found out that he also suffered a mini stroke and was experiencing right-sided weakness as a result. Ian then had surgery to remove as much of the tumor as they could, and also to biopsy it. There was concern his low-grade diagnosis was now a high-grade one due to the events that had just transpired. So much so, we were told there was only a 2-3% chance it was still low-grade.
95% of the tumor was able to be removed, and through what I can only describe as divine intervention, it was determined that the tumors were, in fact, still low-grade.! This time, we got a more definite diagnosis: pilocytic astrocytoma.
In January 2023, Ian started a new treatment, a MEK inhibitor, and his most recent scan from that following April showed the tumors were shrinking! As of this post, Ian’s next scan is scheduled for the end of July.
Overall, considering everything Ian went through, he is doing amazing! After the brain injury, Ian had to relearn how to talk, eat, and walk. His speech is still behind, but he is talking in short sentences now. He’s enjoying all his favorite foods again. And he tried to run when he gets a little too excited! We have Ian involved in his local cub scouts to give back to the community, and he is able to advance from kindergarten to first grade, after he complete summer school to maintain the skills he’s learned.
For updates on Ian, you can come back here or follow me on Instagram- @lysscog
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