When Ian was born, like most mamas, I had fantasies of the little boy he would be, what he would like, and the man he would turn into. I don’t think any parent can ever begin to prepare for their child to be sick. Finding out Ian had brain tumors sent me in a downward spiral that I’m still learning to pull myself out of. Some days are really hard. Some days though, we have the best days. Days that make us smile and laugh. Days where I am so grateful for this little boy.
Last week was expected to be rough. Ian started cycle 11 of his chemo on October 18th, then the next day, he had an overnight EEG video to see if he has been having seizures, and this past Monday, he finished his cycle 11 chemo. Ian’s very first EEG, there were six adults holding him down to get the leads placed on his head. Mind you, back then, he was just about to turn 2. He is now 4, so he is bigger and stronger. In addition to this and his brain tumor issues, Ian has also been diagnosed with Autism. (Very possible everything could be related to his brain tumors. However, you cannot get free services with a medical condition, however, he is able to get those services he needs with an Autism diagnosis, so we don’t argue with this.) Whether from the tumors or the Autism diagnosis, Ian has major sensory issues. Getting the leads on his head is a struggle. He hates being touched, especially on his head near his scar from his 2019 brain biopsy surgery. So, the second EEG, we opted for him to be put to be sedated to more easily get the necessary equipment hooked up. Unfortunately, for this third one, I wanted it done ASAP to see if the episodes he has been having are seizures. The last minute scheduling meant there was no time to get the anesthesia team involved, so we prepared for some kicking and screaming. To my pleasant surprise though, Ian did amazing getting the leads on his head! He was very hesitant about starting, as any toddler would be. Once he was laying down, he cried, but the hard part we were expecting, the combative behavior, that didn’t happen. I couldn’t believe it. He was as calm as I could expect him to be going through something so scary. (I have to give a huge shoutout to Connor from the Child Life department, who helped us with Ian’s sensory needs, and Collin, the tech who got the leads on his head and was very kind and patient.) To top it off, Ian did just as well getting the leads off and then getting his port accessed for chemo the following week. (Getting his port accessed has been very difficult all year, this was the first time we didn’t have to hold him down.) The point of this story…. I am so incredibly proud of my baby boy. He has been so brave through this whole ordeal. It’s so bittersweet. Yes, he is finally trusting us, but it also means he’s getting used to this. It breaks my heart that this is his life. It probably always will be.
But the good news is Ian is kicking cancer’s butt! He is doing amazing. The way a small child is handling this, something I don’t think I could handle as an adult, is inspiring. He is kicking butt.
To add to some positive things, Ian finishes this line of chemo in November!!!! We are almost done, and I know we are so excited to see this end. I took some time off from work to celebrate our little guy when it’s over. AND we plan on signing Ian up for a neat little soccer program after his chemo is done! He’s been very into kicking his bouncy balls around the house. After talking with his oncologist, Ian is safe to participate and said it would be good for him to get involved in an activity such as this.
Life has been a challenge lately. Change is constant. Things change, people leave you, and it’s all meant to knock you down. But if there’s one thing I’ve learned, it’s resilience. It’s okay to be sad about these things, but you have to find the positives in life. Life is too short to worry about things that are out of your control. I am choosing to focus on the next chapter for our baby boy. When life kicks you down, you get back up. And kick harder. Keep kicking butt, little dude!
