Lee and Chanel, please don’t doubt yourselves. You did what you and the doctors thought was going to give him the best chance. Take your energy and just savor the good times you had with him, the smiles and laughs and goofy memories of things that make families laugh. Prayers for strength and endurance for all of you. Take care!
My condolences to you and your family.
I will keep you in my prayers. Please stay strong.
Dear Lee and Chanel,
I would highly encourage you to visit a competent caring counselor to help you process through your grief, especially since it appears you are second guessing yourselves on holding off on treatment for Riley. I'm sure you made the best decision possible for him at the time. You had no way of knowing that it would turn out this way.
I'm sure you will never recover from the loss of Riley, but I would hope that a good counselor could help you see that you did all you could, and made the best decisions you could based on the information available to you. If a counselor can at least ease that guilt and hurt, it would be well worth the time and expense.
I wish only the best for each of you. God Bless,
Ron, KS
Lee and Chanel Brenner said:
Thank you everyone for your kind words and support. The hardest thing is just missing him. We also struggle because we (along with the most of doctors) decided to hold off on radiosurgery until he was at least 7. He just didn't make it to 7. Of course, now we feel like we should have treated already, even though the size (6 cm * 8cm), placement (deep/eloquent area) and especially his age made treatment questionable/potentially very dangerous. We would have second guessed ourselves no matter what, but this whole thing just adds to everything being so awful. Ugh.
Lee
Oh, Chanel…I can only imagine all of the scenarios, and “what-if’s” that you are running through your head right now. Please know that you did what is best. If it helps, even if they had done the radiosurgery, that probably wouldn’t have changed the outcome, as it can take several years to see any benefit. The results are not immediate. Give yourself permission to trust the decisions that you made. I am praying that God’s peace will surround your family. You may want to post on the Parent’s Group on this site. We have other members who are more active in that forum who have lost children, whom I am sure would want to reach out to you. Praying this will be a good day for you.
Hi Susan,
Great idea. Can you pls post the link here about the Parent’s Site for them to see? I’m a mod on AVM and even I don’t know for sure how to find these other support sites. Might ease their journey.
THKS.
Ron, KS
I am so sorry to hear this news. My heart goes out to you and your family. It is heartbreaking to see your child suffer. May he rest in peace.
Lee & Chanel,...
If it means anything comming from me,...please don't second guess and play the "what if's" game.
My favorite retort to a "what if" is the following,...."What if a frog had wings?,...Well,...it wouldn't bump its ass every time it jumped." ....*wink*
(just my lil' attempt at humor to lighten and ease this devastation/loss in your lives)
You both did what you could with the physicians advice at the time. As stated in previous posts and replies to your discussion, Gamma knife, and or any other type of radiosurgery, takes time to show results.
You both did the best for you son, and please take comfort with that thought.
So before I ramble on, and end up sticking my foot in my mouth, here is a link that I hope will help you both.
http://www.avmsurvivors.org/group/parentsofavm
Lee & Chanel,...you both will be in my thoughts and prayers, and again,...we,...the AVM Survivors are here for you.
My deepest sympathy Lee. xo
Lee and Chanel,
I send to you my deepest sympathies on the loss of your son Riley. I will be keeping you in my thoughts and prayers.
Big hugs to you,
Patti
Lee and Chanel, Thoughts, prayers, love and hugs to you. I was deeply saddened to read about Riley. When you are able to I am sure we would all love to hear stories of your son. May all the prayers and thoughts being sent your way help to bring some peace to you. - Cindy (Grace’s Nana)
I agree with everyone elses posts. Nothing really to add. So sorry for your loss. Big hugs and prayers <3
I’m so sorry to hear this. I hope you guys are ok. You’ll be in my prayers.
I want to send you both my condolences on the loss of your dear son, Riley. My prayers go out to you both and I hope that his memory lives on in your hearts. We are all here for you if you need our support during this most difficult time.
My deepest condolences to both Lee and Chanel. Words cannot express how I feel about this and it truly hits home with me. I can only imagine what you are going through right now as my 10 year old daughter has a brain avm. I will say a prayer for you and stay strong.
God Bless you- we lost our son Joe -age 8 to an AVM on 1/1/2010. We never knew he had one-in a way lucky because the neurosurgeon said that due to its location-right thalamus- there would have been nothing they could have done. I miss Joe everyday and know your pain. Myu heart aches for you both. OI do know that they are in Heaven having a blast and helping to guide us thru this. We are spiritual beings having a physical experience so Riley is still with you- no not the way we all want- the physical and all the love that came with that but they ARE with us. I feel closest to Joe when I am calm and strong in my faith- I talk to him and listen for his responses in my heart and he always comes thru. I have had multiple signs- the stronger I get, the more signs I see- not becuase he is showing me more but I am not still so blinded by the shock. I know he has been with me but there are days of inconsoleable pain then there are days where he is right next to me. If I can do anything to help,please let me know. I am so sorry for you both - I’m sorry for us as well. God Bless you-LoveKristina, Clliff, Tripp (11) and Joe (now 10 in Heaven) . From Virginia
I am so sorry for your loss. I cannot begin to know how you are feeling. I pray for you and your family and hope the memories from the past six years will bring comfort.
Your dearest Riley could of been any of our children. I am so sorry there are no words to say. Please know that others are thinking of you and your dear son too. Im my thoughts and prayers
Diane
I am also so sad to hear about your son, Riley. I pray that God can bring you peace and strength in your time of sorrow. Please know that we are all here for you.
I am so sorry about your son. My daughter who is 4 also has an AVM that they say is too dangerous to remove. Praying for you to be comforted.
Hopefully it’s small. How do you plan to treat, if at all? We hope she is okay.