Replies to This Discussion

Permalink Reply by Jennifer Illg on May 24, 2010 at 12:50pm

Hi Marsha.Welcome to this group.I'm glad to hear your daughter is doing well.I know the wait can be agonizing.An AVM was found in my son before it bled when he was 10 as well and the hardest thing for me to deal with was his emotional needs.The fear was consuming at times.It's a lot to deal with as an adult let alone a child.It really helped us to try and be as normal as possible whenever possible and to go ahead and fall apart when we needed to.We just passed the 3 year anniversary of finding the AVM and I am absolutly amazed at how well he is doing.Just hang in there.Take things one at a time and get all of the support and help you can from those who offer it.Bless you and Katie.I will be praying for you.

Permalink Reply by Ruth Pepperman on May 24, 2010 at 1:18pm

Hi Marsha and welcome to the group. One of the worst things we have to handle is the fears of the children. My granddaughter, Tal, asked her mother if she could die from the operations. Thank G-d she didn't, and she is now three weeks after her embo and two weeks after the craniotomy - as though it had never happened. I hope and pray that Katie's angiogram will show the AVM to be in an "easy" place.

Permalink Reply by Kelly Nelsen on May 24, 2010 at 1:39pm

Hi, Marsha.

My 9-year-old son suffered a brain hemorrhage at the end of February, too. Where is Katie's AVM located? From everything I've read, the chances of her AVM "popping" again are somewhere around 6% in the first year after the first hemorrhage. That's a 94% chance that it won't! I'm taking those odds, especially since the doctors first thought my son had a cancerous brain tumor with a 0% survival rate at 18 months. That being said, there's not a day that goes by that I don't silently worry that he'll have another brain hemorrhage.

It is a scary thing, but it's especially scary if you let your mind run away with "what ifs". In school, a 94% is considered an A. If my kids get 94% on a test, my first thought is about the fact that they got an A, not that they didn't get 100%. 100% would be nice, but 94% is pretty darned good, too. I wonder if you could alleviate her fear a bit by framing the chances of her AVM *NOT* popping in terms of getting an A on a test at school? Just a thought.

This forum is a great place to get information, encouragement, and support. I've been grateful for it, particularly in terms of finding out stuff that my research and Ryan's doctors haven't been able to tell me. I wish you the best, and I look forward to reading updates about Katie!

Warmly,
Kelly

Permalink Reply by Marsha on May 24, 2010 at 4:29pm

Thank you, Jennifer. What a terrible common bond we all share, but I can't tell you how happy I am to be able to connect with others who are going through or have been through the same thing. I am thrilled to hear that your son is doing so well. I really hang on to those success stories! Thank you for your prayers and support!
Marsha

Jennifer Illg said:

Hi Marsha.Welcome to this group.I'm glad to hear your daughter is doing well.I know the wait can be agonizing.An AVM was found in my son before it bled when he was 10 as well and the hardest thing for me to deal with was his emotional needs.The fear was consuming at times.It's a lot to deal with as an adult let alone a child.It really helped us to try and be as normal as possible whenever possible and to go ahead and fall apart when we needed to.We just passed the 3 year anniversary of finding the AVM and I am absolutly amazed at how well he is doing.Just hang in there.Take things one at a time and get all of the support and help you can from those who offer it.Bless you and Katie.I will be praying for you.

Permalink Reply by Marsha on May 24, 2010 at 4:38pm

Thank you, Ruth. That is wonderful news about your granddaughter, and I'm so happy to hear these success stories. I pray that she continues to do well. Thank you so much for welcoming me, and for your prayers for my daughter.

Ruth Pepperman said:

Hi Marsha and welcome to the group. One of the worst things we have to handle is the fears of the children. My granddaughter, Tal, asked her mother if she could die from the operations. Thank G-d she didn't, and she is now three weeks after her embo and two weeks after the craniotomy - as though it had never happened. I hope and pray that Katie's angiogram will show the AVM to be in an "easy" place.

Permalink Reply by Marsha on May 24, 2010 at 4:46pm

Kelly, I love the test analogy! Thank you, and I will definitely be sharing that with Katie. I know exactly what you mean about worrying everyday. I guess that's just our new normal for now. Katie's AVM is in the cerebellum, and is less than a centimeter big. Hard to believe something so small can cause so much trouble. I'll be praying for Ryan - I love the baseball picture! Katie has a twin brother who is big into baseball. We spend a lot of time at the ballfield!
Kelly Nelsen said:

Hi, Marsha.

My 9-year-old son suffered a brain hemorrhage at the end of February, too. Where is Katie's AVM located? From everything I've read, the chances of her AVM "popping" again are somewhere around 6% in the first year after the first hemorrhage. That's a 94% chance that it won't! I'm taking those odds, especially since the doctors first thought my son had a cancerous brain tumor with a 0% survival rate at 18 months. That being said, there's not a day that goes by that I don't silently worry that he'll have another brain hemorrhage.

It is a scary thing, but it's especially scary if you let your mind run away with "what ifs". In school, a 94% is considered an A. If my kids get 94% on a test, my first thought is about the fact that they got an A, not that they didn't get 100%. 100% would be nice, but 94% is pretty darned good, too. I wonder if you could alleviate her fear a bit by framing the chances of her AVM *NOT* popping in terms of getting an A on a test at school? Just a thought.

This forum is a great place to get information, encouragement, and support. I've been grateful for it, particularly in terms of finding out stuff that my research and Ryan's doctors haven't been able to tell me. I wish you the best, and I look forward to reading updates about Katie!

Warmly,
Kelly

Permalink Reply by Alyse (Trevor's mom) on May 24, 2010 at 6:36pm

Hello Marsha and Welcome to the group. I am fairly new too. My son Trevor, 8, suffered a brain hemorrahage, Thursday February 11th. It took until the 16th for them to diagnose it! It is unbelievable that he is doing so well but everyday I live in fear that it will happen again before he is cured. I try to think like Kelly with the 94% and it works for awhile but the fear creeps in. I hug my children and kiss them even more then I ever did before (and I hugged them a lot to beging with)! :-)
Trevor had his first embolization Tuesday May 18th. He may have a second before his craniotomy. He did great with the embolization. I hear you on how it breaks your heart to hear from your child that they have such fears! It just doesn't seem right that they should go through this. I look forward to hearing how things are going. The site has definitely been helpful to me.
Take care,
Alyse

Permalink Reply by Marsha on May 26, 2010 at 8:37pm

Thank you, Alyse. I know exactly what you mean about giving extra hugs and kisses. When Katie was flown from our local emergency room to All Children's Hospital we weren't able to ride with her, and the drive took us about an hour. It's amazing how your perspective on life changes when you're faced with a life threatening situation, isn't it? It really impacted our two boys, as well, and all the sibling rivalry stopped (for a little while!). When Katie came home from the hospital her brothers followed her around like little puppies. We've all learned to not take anything for granted, and to appreciate how precious life is. I look forward to hearing about Trevor's progress.
Marsha
Alyse said:

Hello Marsha and Welcome to the group. I am fairly new too. My son Trevor, 8, suffered a brain hemorrahage, Thursday February 11th. It took until the 16th for them to diagnose it! It is unbelievable that he is doing so well but everyday I live in fear that it will happen again before he is cured. I try to think like Kelly with the 94% and it works for awhile but the fear creeps in. I hug my children and kiss them even more then I ever did before (and I hugged them a lot to beging with)! :-)
Trevor had his first embolization Tuesday May 18th. He may have a second before his craniotomy. He did great with the embolization. I hear you on how it breaks your heart to hear from your child that they have such fears! It just doesn't seem right that they should go through this. I look forward to hearing how things are going. The site has definitely been helpful to me.
Take care,
Alyse

Permalink Reply by Teresa Whobrey on May 29, 2010 at 12:59pm

Hi,Marsha,
Welcome to the group,I am also new to this group,The one thing i learned is there's a lot of love and support here from everyone,I have been searching for someone to talk to that understand what i am talking about,My Daughter Sheila was born in Germany, at a Army Hospital with a AVM i never knew she had until the age of 8 years old,,We didn't find out about it until she was 8 she was sleeping with me in my bed and had a seizure, I drove her to the Fort Campbell Army Hospital and told them what had happened,The doctor my daughter seen, Had a bad bed side manner, He thought it was all in my head and it never happened,I got upset,I then got paperwork to take her to Nashville to Vanderbilt Hospital that's when they found her AVM and i knew that there was something wrong parents just know these things.Glad your Daughter Katie is doing well.I will be praying for all of you,Teresa

Marsha said:

Thank you, Alyse. I know exactly what you mean about giving extra hugs and kisses. When Katie was flown from our local emergency room to All Children's Hospital we weren't able to ride with her, and the drive took us about an hour. It's amazing how your perspective on life changes when you're faced with a life threatening situation, isn't it? It really impacted our two boys, as well, and all the sibling rivalry stopped (for a little while!). When Katie came home from the hospital her brothers followed her around like little puppies. We've all learned to not take anything for granted, and to appreciate how precious life is. I look forward to hearing about Trevor's progress.
Marsha
Alyse said:

Hello Marsha and Welcome to the group. I am fairly new too. My son Trevor, 8, suffered a brain hemorrahage, Thursday February 11th. It took until the 16th for them to diagnose it! It is unbelievable that he is doing so well but everyday I live in fear that it will happen again before he is cured. I try to think like Kelly with the 94% and it works for awhile but the fear creeps in. I hug my children and kiss them even more then I ever did before (and I hugged them a lot to beging with)! :-)
Trevor had his first embolization Tuesday May 18th. He may have a second before his craniotomy. He did great with the embolization. I hear you on how it breaks your heart to hear from your child that they have such fears! It just doesn't seem right that they should go through this. I look forward to hearing how things are going. The site has definitely been helpful to me.
Take care,
Alyse