IM ANGRY

My son was diagnosed with a malignant brain tumor on 9/12/22. Before this the only true indication of something being wrong was his head circumference spiking between his 9 month and 12 month well child visits. Other than that he was a happy and typical one year old. At his 12 month visit he got like 4 shots, the 2 he got in his left leg left a hard lump. About a week after this I had a terrible anxiety attack that something was really wrong. Such a bad attack that my sister had to come stay the night with me to keep me calm and the only explanation I had was that I was so worried over my son and I kept saying “I don’t want to lose my son”. My sister just kept saying “you’re not going to why do you keep saying that?”. I still can’t explain that episode. So I kept an eye out for his leg and one morning about a week and a half after that appt that bump had grown a tad and was warm and red. Worried about infection my mom and I decided to take him into the ER at Nationwide Childrens. When I got to my moms house he tried climbing like he typically does and he seemed off and weak. He was pretty lethargic in the sense of not answering to my cues, kind of in a daze and he was dragging his legs. He even started wobbling/swaying while sitting up like he did when he was first learning to sit unassisted. To say I was freaked out would be an understatement. It took me 6+ years and a failed marriage to finally have a baby and I started to become really scared that I would lose him. My mom reassured me it’s probably just an infection, we’ll take him in and they’ll give him antibiotics and send us home. Don’t worry about it!

We got to nationwide and I listed off his symptoms, slight fever he’s had over a week (he was teething so I didn’t think much of it), the bump on his leg, bouts of extreme fatigue and weakness, the swaying/wobbling, and the increased head circumference. The ER made us wait 7 hours before taking us back, even with presenting neurological symptoms. When they finally got us back there they did an ultrasound of his leg and came in to say well our neuro checks have been normal since we got you back and the ultrasound of the lump shows it’s just some sort of like scarring from the shot that should break down overtime. We can do a cat scan if that’ll make you feel better but you’ll likely still need an mri as it won’t show anything that we can notice. So I called my sons pediatrician and she said go ahead and do the ct to be safe but also because insurance requires it prior to approving the mri.

When the ER doc walked back into the room after reviewing the scans he was already tearing up. He just began apologizing and saying things like this is never easy to say and I’m so sorry this isn’t fair. When he finally came out and said “there’s a 4 cm mass in the middle of your sons brain and you won’t be leaving” my entire world just stopped. My heart skipped 5 beats and my stomach almost jumped out of my throat. I looked at my mom and just screamed I told you. I knew it. You called me crazy and I told you he had a tumor. (I had been saying since he was 6 months old that something wasn’t right. I just kept saying I think he’s going to die and I can’t shake this feeling. Something bad is happening and I swear I knew it was a tumor). I screeched the worst sound I’ve ever heard in my life as I cried over my son.

I was overwhelmingly depressed and guilt ridden for several days after. Everything happened so fast after this, we were admitted that day to the neuro surgery floor and told that the tumor caused hydrocephalus which in turn meant we had to get it out ASAP. Luca had surgery on 9/15 and thankfully they resected 100% of the tumor and the full mri showed no signs of metastasis. THANK YOU GOD!! And I thought at this point that pathology would come back and say it was benign. Then we could just move on with life and we’d be happy again.

Pathology came back that this is a malignant grade 4 Central Nervous System Neuroblastoma with FOXR2 activation. This was not genetic, it happened by freak accident.

Since then? I’ve just been ANGRY. I’m finding it really hard to be grateful or hopeful about the full resection and the very hopeful prognosis given it hasn’t metastasized, but I can’t be anything but angry. Why my son? Why a baby? Why our life? Now I can’t work, and I’m a single mom who just bought a new car and got a new apartment! I’ll be living in a hospital next to my son going through chemo for the next 6 months of my life if not longer and moving back in with my parents. How is this fair? Why can’t I just fight this battle for him? Am I going to lose my son?

And with every question grows more anger and guilt. Why is everyone around me able to just move on with life when mines stopped entirely? Could I have done things differently? Could I have prevented this? Could I have saved him from this if I’d listened to my intuition sooner? So many unknowns and I’m fighting so hard to look past them.

My sons a strong little boy, a fighter. He’s scheduled to start chemo 10/10/22 and I’m nervous. I love this little boy more than my own life and I’m so scared. But for now I’ll just be incredibly angry.

Just needed to get all of this off of my chest. Thanks for letting me share and sorry for the long post and enjoy photos of my baby boy ❤️ TW: second photo is right after surgery hooked to vents and all.