Replies to This Discussion

Permalink Reply by Susan Troop (Lindsey's Mom) on July 29, 2010 at 8:49pm

Yup, we all know that feeling. It is very helpless. The 2-3 year wait with radiosurgery was a great concern to me too, when we were considering that route, but we were able to do surgery without many risks, so we went that way. I'm sure there are other parents who will be able to share their coping skills for the wait, but I do think that you will feel a little better once you have at least begun treatment. I found that the waiting between diagnosis and treatment was extremely difficult. Once you have moved in that direction, you can put your focus on healing. Thankfully, kids seem to deal with this better than we do. My daughter was also 10 when she had her bleed, and I am amazed at how she handled the whole situation. Much better than I did, for sure! Our Faith, and Church family, also really helped us through. Unfortunately, you will find that many of us who have even been through surgery, and have had confirmation that the AVM is gone, still have trouble getting past that fear. The whole thing is just very traumatic, but it WILL get better. We are all here to help each other through the journey. We will be praying for your son, and your family.

Permalink Reply by Lisa Wilson on July 29, 2010 at 8:57pm

hi, it is very hard, there is no magic answer. my daughter had her surgery a year ago as yesterday and still every headache, pain or even a sniffle i relate it back to the avm even though it has gone. i think messing about with brains is scary enough let alone when it is your child and you are helpless to take their place. my husband and i try to balance each other out and it seems when he is worried i try and pick him up and vice versa. if i think about the past 2 years for too long i think i could get really panicky but i see how strong and mature my daughter has been about it all and take her lead. as a parent and a "grown -up" i think we spend alot of time thinking what might be or what may have been. being positive is much easier when she has good days as she still has headaches from time to time and lost some of her vision but i suppose this is now apart of our lives.

Permalink Reply by Kelly Nelsen on July 29, 2010 at 9:11pm

Tobie,
I understand your feelings of helplessness. As mothers, we are wired to protect our kids at all costs. Like you, I'm a laid-back kind of mom, but this AVM of Ryan's bothers me, too. Every single night since February 27th, I hug and kiss him good night praying that he'll be okay in the morning. I look at his sweet face and try to emblazon it in my brain. I can't bear the thought of not having my little boy.
But with each passing day, I also relax a little more. He's as normal as he can be right now, and I'm enjoying every minute of him --even when he fights with his little brother. I let him be a normal kid, and seeing him be normal comforts me a bit.

When Ryan first had his bleed, they didn't know it was a bleed. It looked like a brain tumor, and its shape was the typical shape of something called a glioblastoma multiforme, which is the worst kind of cancerous brain tumor a person can have. Even if they were to remove it, it has a 100% recurrence rate and a 0% chance of survival after about a year. For the first month after Ryan's bleed, this is what the doctors thought it was, and we were faced with watching our little boy slowly deteriorate to his death before Christmas. Now THAT caused me anguish, sorrow, grief, and every other kind of negative emotion a mother could feel.

So I look at this AVM that my son has instead and I rejoice. I rejoice that, even if Ryan were to have another bleed before this thing is obliterated, at least he'll be able to lead a pretty normal, healthy life until that time. No endless sessions of radiaton and chemotherapy, no withering away to nothing, no not being able to be a normal kid. No watching him suffer in the meantime, knowing the awful, inevitable result.

Go hug your son and enjoy every minute with him -- even the annoying ones. :) The nice thing is that from all of the research I've read on radiosurgery, for some as-yet unknown reason, kids' AVMs seem to be obliterated much more quickly than adults'. The 2-3 year waiting period they tell you will likely end up being much less than that.

Things will settle down for you. It is still early yet. You will still worry, but it won't be a constant one like it is now.

Take care. And, hey -- have you hugged your son yet? I'm going to hug mine right now. :)

Blessings,
Kelly

Permalink Reply by Mario Ontiveros on July 29, 2010 at 10:36pm

Hello Tobie

I also know the helpless feeling, when my daughter came home and told she had a AVM we know nothing about AVM's, we quickly learned and as we learned more we really began to feel the emotional pain, to top things off my daughter had no insurance and a mother of two toddlers Lois 2 yrs and Bonnie 1 year, to see my daughter deal with the fear of not being there for her two children. To watch my daughter try to get insurance and be denied because of the pre exsiting condition and many other excuses did indeed make us feel helpless, The only solution we had was God and we have always beleived in God, so we prayed a lot and ask for the healing , we prayed for a miracle and God answered our prayers and my daughter Lacey is indeed a miracle, she had her AVM removed on April 26th and her recovery has been nothing but a miracle, she has had no complications at all, How does that happen we ask the only answer is God answered our prayer with a miracle, so hang in there it is a tough road ahead, trust in God and ask for a miracle, my God is in the miracle business, We will add you and your family to prayers.

Permalink Reply by Ruth Pepperman on July 30, 2010 at 4:02am

Hi Tobie. It's difficult to reply when I don't know you or your beliefs. I really feel for you. We all do our best to protect our children but in the end, we can only go so far. When we feel this total lack of control, that's when we realize, if we didn't before, that although we think that we are in control, we're not. The control lies with the Almighty. If you have religious beliefs, then pray. That's all there is to do. If you think that you don't have religious beliefs - well, you know that saying "there are no atheists in foxholes..." I'm not trying to belittle anyone's beliefs; I hope I don't sanctimonious; I'm trying to help you. I'll be praying for you and your son.

Permalink Reply by Kelly Nelsen on July 30, 2010 at 7:20am

I agree with your sentiment, Ruth. But you know what? Prayer is very powerful -- way more powerful than we give it credit for. It shouldn't be thought of as only a last resort. It can (and should) be our FIRST resort. Prayer is possibly the only thing we DO have control over in this case. Ryan's having surgery on August 23rd, and you can bet on the fact that I'm going to get as many people as I can praying for him and for the surgeons that day.

To Ruth's other sentiment, if you haven't invited Jesus to be a part of your daily life, now's a perfect opportunity to do it. If you ask, He'll answer. He always does. :) And He WILL protect your son.

Ruth Pepperman said:

Hi Tobie. It's difficult to reply when I don't know you or your beliefs. I really feel for you. We all do our best to protect our children but in the end, we can only go so far. When we feel this total lack of control, that's when we realize, if we didn't before, that although we think that we are in control, we're not. The control lies with the Almighty. If you have religious beliefs, then pray. That's all there is to do. If you think that you don't have religious beliefs - well, you know that saying "there are no atheists in foxholes..." I'm not trying to belittle anyone's beliefs; I hope I don't sanctimonious; I'm trying to help you. I'll be praying for you and your son.

Permalink Reply by Kelly Nelsen on July 30, 2010 at 7:22am

That gives me the chills, Mario. That is awesome!!

Mario Ontiveros said:

Hello Tobie

I also know the helpless feeling, when my daughter came home and told she had a AVM we know nothing about AVM's, we quickly learned and as we learned more we really began to feel the emotional pain, to top things off my daughter had no insurance and a mother of two toddlers Lois 2 yrs and Bonnie 1 year, to see my daughter deal with the fear of not being there for her two children. To watch my daughter try to get insurance and be denied because of the pre exsiting condition and many other excuses did indeed make us feel helpless, The only solution we had was God and we have always beleived in God, so we prayed a lot and ask for the healing , we prayed for a miracle and God answered our prayers and my daughter Lacey is indeed a miracle, she had her AVM removed on April 26th and her recovery has been nothing but a miracle, she has had no complications at all, How does that happen we ask the only answer is God answered our prayer with a miracle, so hang in there it is a tough road ahead, trust in God and ask for a miracle, my God is in the miracle business, We will add you and your family to prayers.

Permalink Reply by Ruth Pepperman on July 30, 2010 at 9:57am

Hi Kelly. I wasn't saying that prayer should be the last resort. My faith in G-d is uppermost at all times. However, I have no idea what Tobie's beliefs are. Sometimes it takes time to come to the realization that we have absolutely no control and that the Almighty has all the answers.

Kelly Nelsen said:

I agree with your sentiment, Ruth. But you know what? Prayer is very powerful -- way more powerful than we give it credit for. It shouldn't be thought of as only a last resort. It can (and should) be our FIRST resort. Prayer is possibly the only thing we DO have control over in this case. Ryan's having surgery on August 23rd, and you can bet on the fact that I'm going to get as many people as I can praying for him and for the surgeons that day.

To Ruth's other sentiment, if you haven't invited Jesus to be a part of your daily life, now's a perfect opportunity to do it. If you ask, He'll answer. He always does. :) And He WILL protect your son.

Ruth Pepperman said:

Hi Tobie. It's difficult to reply when I don't know you or your beliefs. I really feel for you. We all do our best to protect our children but in the end, we can only go so far. When we feel this total lack of control, that's when we realize, if we didn't before, that although we think that we are in control, we're not. The control lies with the Almighty. If you have religious beliefs, then pray. That's all there is to do. If you think that you don't have religious beliefs - well, you know that saying "there are no atheists in foxholes..." I'm not trying to belittle anyone's beliefs; I hope I don't sanctimonious; I'm trying to help you. I'll be praying for you and your son.

Permalink Reply by Barb V. on July 30, 2010 at 7:14pm

HI Toby,
I know how you feel. Believe it or not THIS sight will help you to destress a little bit. Somehow kids deal with this whole thing a whole lot better than the parents. Maybe it is that wide eyed innocence that they have. We on the other hand know more about the possibilites. Over time I think you will be able to get some sense of normal again. Keep talking to whoever can give you direction. Vent whenever possible and look UP! Barb