Our Son Riley

She had two of the arteries embolized last year. Unfortunately it just made the others grow more. One is next to her ear drum, one on the brain stem. She is taking propanolol but, it is only shrinking the vessels of the hemangioma. She will have another MRI next month to see if it’s getting in her ear bones.

I’m glad to hear that your daughter’s condition sounds different from our son’s. And it sounds like you are making all the right decisions. We get what you are going through, and wish you all the best.

I am so very sorry to hear of your loss. As the parent of two children, I cannot imagine the heartache you are feeling. All I can offer is to say that you should remember the time you had with your son, and it sounds like you made the right decision in his care. I will pray for your family. Peace be with you.

PRAY’S FOR YOU AND YOUR FAMILY

I genuinely hope that everyone is doing well. It’s painful to think about children suffering at all.

Hi Lee and Chanel. The one thing we can not lose sight of…that someday there will be an easy fix for an AVM. Right now there is none. There have been so many advances in medicine in the last 35 years. I look forward to the future. In the meantime we will continue to support one another! I think of you and your young son quite often!

I just lost my 12 year old daughter to an AVM rupture. Her AVM was located near her brain stem. I am devastated. She lost her life on November 6, 2011. So sorry to hear about your loss.

I, too, am sorry that your son was taken from you at such a young age. I've found a lot of comfort from participating on this site, and I wish you both well.

Take care,
Debbie

I know this was posted back in April but I wanted to send my condolences for both Riley and the 12-year-old daughter of Taitlyn1999. It's hard to lose a child but the loss of any person is devastating. I can't imagine what you're going through. Wishing you all the very best in this very hard time.

So sorry for your loss. Sounds like you are great parents, seeking out the best of treatments. My Avm bled at age 17, also in a, eloquent area as you put it this was 1979. Not many treatments were available. Had Proton beam early, unsure if helped or not, it was tramatic had a halo bolted to my head for a period of time. Comfort yourselves in knowing you gave Riley the best decisions and close to his life that was possible in a bad situation.

Your Friend Rob Reed

My families deepest condolences . may he rest in peace x George (Nicoles Daddy)

Thanks everyone. My wife and I, and Riley's brother, miss him terribly. We still struggle with the treatment decisions we made (and didn't make). Even though I'll never know if we did the right thing, I'd do it differently now given the way things turned out. Hard thing to live with. I'm sorry we've all had to struggle with AVM's.

i am really sorry about your Son Riley, mt thoughts and prayers are with you.

Our 5 year old son, Connor, passed away 2 weeks ago from his avm. How did you cope with your loss?

Chanel and I are truly sorry for the loss of your beautiful son.

I'm not sure how to answer your question about how did we cope. Sometimes ok. Sometimes not well. Chanel writes a lot of poetry about our son, and that helps her, if not others dealing with grief. If you can find a way to survive and do nice things for yourself for awhile, that can help. I wish I could say it gets easier. I'm not sure it does yet. Maybe. Maybe not. I don't know.

Reading the AVM Survivors site can be helpful. Sometimes it makes it worse. So there's that.

Let others comfort you and take care of you. Then think about your family. That's all I got right now. I'll try to think of something more, better. I really am sorry.

I think you just have to hang in there to the best of your ability.

Hello Lee and Chanel! I'm so very sorry of the loss you had to endure with your beloved Riley! My hopes and prayers are that your precious memories of your beloved Riley will bring you Peace, Comfort and Strength each and every day!

With deep and sincere sympathy!
Michele

Lee, if you are still on this forum, how are you and your family doing? A very close friend of mine lost her precious 4-year-old son in 2018 to an AVM rupture and I’m struggling with how to best support her. She wants to see a grief counselor or join a support group, but she hasn’t found the right person or group. Most of the groups she’s tried are with parents that have lost infants or teenagers and she would like to talk with other parents that have lost a young child like she has. She’s asked me to help her find someone but I’m not sure where to start. Any advice or suggestions are welcome :slight_smile: Thanks in advance.

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Welcome, and it’s great you reached out. Hopefully some of us are able to pass along some suggestions. I was the one in my house with the AVM so don’t have any suggestions of the top of my head. We have a tremendous amount of knowledge and experience here so hopefully some ideas are generated. Thanks for supporting your friend, being there is so important. Take Care, John.