I didn’t tell you how my brain tumor was discovered.
Charles was 3 years old and wanted to take a shower. No more baths! Daddy didn’t take baths. Daddy took showers so Charles needed to take showers.
I had to tell Charles that he could not eat his pack of gummy bears in the shower. He didn’t want to leave them because he knew I loved them. But I scooted him in the shower. Charles gets out of the shower and says. “Hey mom, you ate one!”
I say, “No way, I wouldn’t do that.”
Charles says, “Stick out your tongue.”
He wanted to see if my tongue was a color as that would prove I had eaten the gummy bear. I stick out my tongue.
He says, “Mom. Stick it out all the way.”
I say, “I am.”
He says, “It’s crooked.”
I look in the mirror, stick my tongue out. It is crooked. I try to move it side to side. On the left, it’s paralyzed. I suddenly feel like a freight train has hit me. Holy cow this is not good. Charles is calling my name and I’m just stunned. It takes me a minute to get myself together and get him in bed.
I go downstairs and show Randy. He says, “Maybe it’s a dental issue.” Something is nagging at me. I remember something about the tongue. I can’t place it right then. But at 3am I shoot up in bed and remember it’s a cranial nerve. It’s a brain tumor. I know it is. Holy cow this is not good.
Of course, I had to go through some tests and it turns out, that’s exactly what it was. And you know the rest of the story.
So what was the outcome of the gamma knife?
Stuff hurt for sure. They have to fasten the frame on your head. And the anchors have to touch the skull.
Two MRIs (one without the frame and one with), an x-ray, CT scan and 2-hour gamma knife treatment and it was over. About 8 hours. Taking off the frame hurt, but only for 30 minutes. Stuff hurts tonight. But compared to pain I have felt after two craniotomies, this was so easy and very manageable. I was prepared for much worse.
At one point, I was waiting for my turn with the MRI, alone in the hall and a wave of grief hit. I was drugged by this time and I let those tears flow. And then the young men who scooted me up there appeared and asked me what was wrong and I told them.
Just grief. Lost my son to suicide and sometimes it just hits at odd times. I just needed a minute.
It was Charles who saved my life or at least my quality of life with his accusation of a crooked tongue. If I had waited to the next symptom, that could have been a strangled carotid, complete hearing loss, facial paralysis, double vision or loss of my swallow. I can live with a crooked tongue. Charles and gummi bears saved me. I wish I could have saved him from suicide.
I will know in a year or so if I have to go back, or not, for follow up treatment. They think it will be this one treatment and we’ll know by MRI if we turned it to toast or not.
I just want to say how much I appreciate the outpouring of support. Thank you. I know you’ve probably heard enough!
Am just now seeing this post and it never ceases to amaze me at how much you have suffered and how resilient you are. Life can be so unfair. You need and deserve a good year in 2018. God bless you.
Thank you so much Carole. I do need a good year!
praying for you. May the peace of Christ be with you.
Dave Conner
You have been on my mind and was wondering how Friday went. Can’t imagine all that you are enduring. I’m sure I speak for all of us when I say we will not be tired of hearing about it until it is over and done. <3
I think it’s going to take a bit more time to recover than I thought. But doing better.
Hi Anne, I hope your recovery is going well. A little boy in the NF community just had the same surgery in PA CHOP. He ended up back in the hospital with edema that caused a severe seizure, but his family says that is good news because it is an indication that the tumor is dying. I love your gummy bear story. Thank you, as always, for sharing the many aspects of your grief. It helps me to feel more “normal.”
I am better today. Fortunately edema was never out of control in my case. That can be a really painful headache to say the least. Thank you so much for your well wishes.
Been thinking of you and so glad that all went well and it is amazing how our sons may not be on this earth, now, but they have saved lives and continue to do so with the energy they still have on this earth to make a difference. Thank you Anne Moss for all you do. You are so amazing and I love you more!
Thank you my friend. This kicked my @$$ for a few days. I’m still very fatigued but I guess that’s what you have to expect when your brain has been radiated for 2 hours!
You are a strong, courageous woman. I am in awe!
Charles saved your life or the quality of life because he was detail oriented-because he noticed and said something.
He had to have adored you to notice!
You are an amazing mom.
Praise God for that.
God Bless you ❤️
Thank you Sarah.
Thank you. I’m just now strong enough to reply to comments. I was down and out for about 4 days after and coming back to life finally.
💜💜💜Glad all went well. Praying for a full, uneventful recovery.🙏🙏🙏
Thank you. Love the word “uneventful” as that is what I’m hoping for
I seem to use the word “wow” frequently whenever I read your posts. Not sure it is more fitting than it is here.
I’ll try to find a better word, but I can’t make any promises.
Prayers for speedy and complete recovery.
Brad
“Wow” can be your signature exclamation!
Amazing story and courage.
You look good in the picture girlfriend – like the glam squad just did your hair!
Best wishes for great news!
Thank you Gray. Very tired today. Traveling back after surgery is not new to me but never easy although this is the easiest
What an incredible story, Anne Moss. I know this was such an intense emotional experience for you, on top of the physical aspect. You are amazing; Charles is definitely with you. And so are we. You are SO loved. ❤️
I felt my boy with me. Thank you Suzanne
Glad the procedure is over. Praying for great results
So glad it’s over. Hope I never have to do that again!
So good to see your smile after the procedure – thank you! Continued prayers!
Thank you Kelly
Amazing about the missing gummy bear and the crooked tongue leading you to know something was wrong. I agree with Amy. Charles’s life and your sharing will continue to help others. I hope you don’t have to undergo another procedure, but I’m glad it wasn’t as bad as your previous procedures. xoxo
Knocked me off my feet for a few days but getting some energy back. Slowly. Isn’t the crooked tongue weird. So few have seen that symptom.
Thank you for the update, Anne Moss. I’ve been praying for you and thinking about you these last two days. Will continue to do so. And your backstory on the crooked tongue could well save someone else’s life. Amazing that a 3yo Charles knew something was wrong. Incredible kid… ❤️
He did. Because after he said something I think he felt my reaction and left the subject drop. Charles rarely did that!
I’m glad that the procedure is complete. Hopefully, this will last occasion you deal with this brain tumor. At least you have a impactful memory from this with Charles about taking action about your health.
Thank you Michael