It’s been one week since our world once again got turned upside down. It feels weird to write on my blog with everything that’s going on, but there is literally nothing I can do for my sweet boy right now. I feel helpless. And as a mother, that is the absolute worst feeling. It’s supposed to be my job to protect my kids. But I couldn’t protect Ian from this. I know everyone will tell me I didn’t, but I feel like I failed him.
After we saw neurosurgery last week to talk about doing a biopsy of the tumor that grew, we took our talking, running, happy, 5-year-old boy home. We thought we had more time. We always think we have more time..
That evening, Ian went out for dinner and ice cream with my in-laws. It was shortly after they left that we got a phone call saying he was throwing up. A lot. This was a huge symptom we had to look out for that would indicate the tumor had completely blocked off the passageway for the cerebral spinal fluid. Ian began experiencing dizziness, a headache, and started having a seizure like episode with partial convulsion. He managed to get every symptom we had to look out for in a matter of minutes.
My in-laws decided to call an ambulance because something wasn’t right. This, as we were told, was supposed to happen gradually. Although his vitals looked great, we decided to let the ambulance take Ian and I down to Children’s.
We explained to the ER doctors and nurses the events of the last couple days and that we thought it was his tumor blocking the CSF from getting through, causing a buildup of pressure. The doctor agreed that this happened too fast, and promptly ordered a CT scan to see what was going on.
The CT scan showed that the tumor that doubled in size had hemorrhaged, causing bleeding in Ian’s brain. The blood from the tumor blocked what little remaining passage there was for his spinal fluid, causing the buildup of pressure. Ian was immediately taken to the ICU for a bedside procedure to place a temporary drain to allow the blood and fluid somewhere to go and relieve the pressure.
Ian would need another drain placed on the other side because the first drain wasn’t enough. He’s on a breathing tube, in a medically induced coma to keep his brain calm while it heals, and other medications.
The last week has been a roller coaster ride. Ian’s pressures have been up and down (which is expected), as well as our emotional state (which is also probably expected). It’s been one week since I got to hear my son’s voice. One week since I got to hug him and hold him in my arms. One week since we last saw him as an active and happy 5-year-old.
I have probably felt every emotion under the sun since we’ve been here. I felt so close to losing my youngest child. That’s grief no parent should ever have to experience. But with kids like Ian, kids who get a cancer diagnosis, or even something else life-threatening, it becomes all too real. The first few days here, I felt physically ill. I couldn’t distinguish between my intuition and my fear. People always ask us how we do it, and any parent will tell you, it’s something that just happens when you need it to. We need to be strong for Ian and Gabby. Not every second of every day, but we can’t hold on to that fear, that pessimistic perspective. We have to hold on to hope. On to optimism. On to faith. On to love.
I think situations like these always change a person. During our first hospital stay, I lost that hope. I lost my faith. I’ve lost a lot of things between then and now because I couldn’t cope with it. Even after getting a good prognosis the first time around, my worst nightmare came true. Look at the damage a benign tumor caused. We are thankful it wasn’t something worse, don’t get me wrong, but now we might be dealing with something more aggressive. Ian’s brain is really sick. He has multiple tumors. I’m more afraid now than I ever was. But Ian’s happiness and courage has always centered me through all of this. I have no doubt our boy will fight through this too. Leaving us and the world in awe once again.
As I mentioned, I didn’t cope well with the inital diagnosis back in 2019. This past year, I’ve made it a priority to literally get my shit together in all aspects of my life. There was immense shadow work I knew I needed to work on, and I felt like I was doing so. I even played with the idea of believing in something bigger than myself again, although I’ll admit I wasn’t fully committed. When things like this happen, you have to believe in something. Or it will tear you apart. I’ve probably prayed more in the last week than I have my entire life.
You have these moments come up and you think about all the things you want to change in your life. I’ve been holding on to so much pain. So many grudges. I struggled to let go of a lot of things. With this… it’s a turning point. There was a realization that we truly don’t know what could happen tomorrow. Our baby boy showed no signs of distress before our admission. It happened fast. It happened suddenly. We aren’t promised tomorrow. More than anything, I want to turn over a new leaf. I felt like I was working my way to do so, but I was still struggling with a few things. But this… it makes you realize what’s really important in life. What’s important is spending time with the people you love. Making memories you can look back on. Tell the people you care about that you love them. The messy house can wait if it means spending quality time with your kids. Don’t keep putting off doing the things you want to do. Make it happen. Literally live your life to the fullest. Tell the people you care about that you love them. Find happiness in the little things. Forgive. Bring yourself peace. Show compassion and kindness to everyone you meet. Be a light in the world when it’s dark. And did I mention you need to tell the people you care about that you love them?
I don’t know what the future holds, but I know it looks different compared to last week.
If you’re reading this, if you’ve kept up with Ian’s journey, I want to thank you. Please share his story of bravery and resilience. Because at just 5-years-old, I know he’s teaching us all a little something about life.
