03/02/2026
For as long as January seemed to drag on, February went by in a flash and now it's March and here we are just a 2 days away from Vincent's brain & spine MRI and ultrasounds. Just as our life seems to settle down "medically" we are derailed with scans, and labs, and audiograms, and more evaluations, wash and repeat on a 3 month cycle. Forever. Yes, I say forever because that is the current plan. We have no plan to space scans out. Some kids who had ATRT eventually move to yearly scans, I can't ever imagine doing that because Vincent has relapsed twice, and had a second cancer. I know ATRT, it is relentless, and sneaky, and 1 cell can spark a wildfire that's impossible to contain. We used to think if you made it 2 years out of treatment, or reached a certain age, your odds of relapse went down significantly, but that data is old and outdated and only follows what happens up to 5 years post diagnosis. The real children I have met over the past 8 years tell a different story. It seems like our ATRT/ pediatric brain cancer community is getting hit with more frequent relapses and losses right now. It's hard not to worry that Vincent might be next
I struggle more with each scan honestly. It's not like the more scans he has the easier it gets or the odds get better. Every scan comes with a 50% chance of bad news. It's not realistic for me to think otherwise because it has happened four times. Four times we have received devastating news of cancer being found on Vincent’s routine imagining. He never had any symptoms of relapse. His initial symptom was only a slight head tilt. My fear is rational. And being honest and sharing my feelings here often comes with a string of judgement attached, and the shield of a keyboard can bring out the worst in people. Part of the reason I post and share less is because of these people .
Comments like the one I've received and quoted below are judgemental and privileged.
"Can't you just relax, gosh every post is your worried, your nervous, your on edge, it's always something, just enjoy the moment. I understand your son has mant medical conditions but gosh try and relax a bit. Enjoy what you have right now. Take it day by day."
No, I can't just relax. And yes, I am always on edge. No, you don't understand. And, I hope you never truly do understand what it's like. So if you find yourself here wanting to make similar comments, then please just scroll away and unfollow, and you should probably do the same for any other similar pages you follow because they don't need the criticism either.
Thank you to the people who continue to bring positivity to our family by following, praying, donating to pediatric cancer research, sharing Vincent's story, calling your representatives regarding legislation, and never ceasing to manifest a miracle for Vincent.
Please keep Vincent in your prayers, send him good vibes, and all the love for stable scans above all, but also for quick results that do not report any type of concerns.
Cancer free, now and forever.
