Which type of Radiation?

I'm really sorry you have to deal with this issue for your son.  It's tough enough to go through it yourself much less a child.    

There was the mom of a boy that was on this site within the last few months who had the same type issue with her son as well.  He ended up going to MD Anderson in Houston so he could get the Proton radiation for exactly the same reasons your doctors are looking at the best treatment  for your son.  Radiation can be brutal and the side effects a bit challenging at times.  Given your son is 14 years old, anything you an do to minimize the radiation and side effects would be good, especially since he is so young.  

Gabe has a Caringbridge site and his name on that site is  gabenavarette.   You should reach out to the mom or dad to see what advice they might give you and share her experience with the Proton radiation.  They just finished treatments a few weeks ago.  I think Gabe was 10-12 years old so close to your son.  

Good luck,

keith

it sickens me whenever i hear anyone has to go thru head and neck radiation. it sickens me ten times more when a child under mid 20's have to fight the fight. 

from experience with the old old radiation and now following and watching first hand the IMRT if it were my child I would choose or encourage the IMRT. mostly because i have seen those with IMRT have many less side effects, not everyone but sure seems like a much larger group with less side effects. 

not knowing about proton therapy enough to choose, i have to suggest to my self that since i do not hear a huge amount of chatter on site like CSN and others i follow on facebook how great the success is with lesser amounts of side effects that it does not have enough history to support. 

i am certain if it were my child i would be mess and have to think of all options. 

to me in my view, IMRT has had proven success. 

good luck with the choice. prayers going out to all the family. 

john 

So glad I logged on tonight to and saw this post! My son Gabe (referenced in other posters replies) was diagnosed in December with Mucoepidermoid Carcinoma. He had 17 hours of surgery and then needed radiation. We were told all of the risks of radiating a young child. They told us if Gabe were 16 or older they would not be as uncomfortable radiating him with IMRT. Because of the potential for secondary cancers later in life we decided that we had to check out proton therapy. We chose to go to MD Anderson because we couldn't get proton in our home state and we figured if we had to go out of state we may as well go to the best!

I cannot tell you how glad we are that we made this decision!! Read the stories here and other places about what the effects of radiation are when done in the head and neck area. Feeding tubes, loss of weight, sores in mouth, loss of taste buds, difficulty swallowing, and the list goes on. I know these things don't happen to everyone. As an adult I know there are some things that I'm going to go through that are just plain going to suck. I was in the hospital on strict bed rest when I was pregnant with the triplets. But I knew I had to suck it up to get the end result of healthy babies. Explaining that to a 10 year old is not nearly as easy. My son was not interested in rational discussions about long-term results. He is 10 and just wants to be a kid. Proton radiation allowed him to be just that. He handled the radiation so well we were amazed! He got a mouth sore after treatment was over, but it only lasted a very short time. He got a nauseated just a few times and ate like a crazy man most days. He never needed a feeding tube, in fact he gained weight during treatment! He did get a significant radiation burn, but we were able to treat it with silvadene. These side effects were minor compared to the things we feared would happen.

I know the idea of going out of town is hard to imagine. We agonized over the idea! But in the end we decided that no matter how hard it was, in the end it would be worth the benefit to our son! We spent 7 weeks in Texas (we are from Ohio). My son is a triplet, so we have two other 10 year olds. We also have a 15 year old. We knew it would be tough. We knew Gabe would not like being away from home and his sisters. But, in the end, the time flew by and we are now all back together!  I know it seems tough. I beg you to look at the long term picture here. While we were in Texas we meet a young man, 23 years old. He was being treated for a secondary cancer. This was our worst nightmare right before us! He had cancer when he was 10 and had gotten radiation. Proton wasn't available then. Your son will not want to leave his life at home. What kid would?!? In the end, I think proton is a great option for kids. My prayers are with you. I know how scary this time is!  I will be paying for your family!

By the way, Gabe finished treatment 6 weeks ago and is doing great. He is playing baseball and soccer!

KB56 said:

Gabe

Kim, it really makes me happy that Gabe is doing so well!   Thanks for logging in and letting the other person know your experience with the Proton radiation as i know it was tough on the family but as PJ said, 7 weeks is a very short time in the life of a child and to avoid the side effects of the other types of radiation (even IMRT which is what I had and I have a few side effects), especially for someone so young and still developing, has to be the first priority.

Lots of luck to you and your family.  I still read you and your husband's Caringbridge posts on Gabe and am so happy Gabe is doing great!

 

All the best to you and your family,

Keith

Kim, I am delighted Gabe is doing well and as a Brit delighted he is developing a love of Soccer (we call it Football here). I am really rooting for both little ones here. I hope I have recruited two young Liverpool Football Club fans as well as Keith! Don't let a character called Tonsil Dad from Florida convert them to Man. Utd! Both little boys in my prayers, G.

kimnavarette said:

It will go by in the blink of an eye

So glad I logged on tonight to and saw this post! My son Gabe (referenced in other posters replies) was diagnosed in December with Mucoepidermoid Carcinoma. He had 17 hours of surgery and then needed radiation. We were told all of the risks of radiating a young child. They told us if Gabe were 16 or older they would not be as uncomfortable radiating him with IMRT. Because of the potential for secondary cancers later in life we decided that we had to check out proton therapy. We chose to go to MD Anderson because we couldn't get proton in our home state and we figured if we had to go out of state we may as well go to the best!

 

I cannot tell you how glad we are that we made this decision!! Read the stories here and other places about what the effects of radiation are when done in the head and neck area. Feeding tubes, loss of weight, sores in mouth, loss of taste buds, difficulty swallowing, and the list goes on. I know these things don't happen to everyone. As an adult I know there are some things that I'm going to go through that are just plain going to suck. I was in the hospital on strict bed rest when I was pregnant with the triplets. But I knew I had to suck it up to get the end result of healthy babies. Explaining that to a 10 year old is not nearly as easy. My son was not interested in rational discussions about long-term results. He is 10 and just wants to be a kid. Proton radiation allowed him to be just that. He handled the radiation so well we were amazed! He got a mouth sore after treatment was over, but it only lasted a very short time. He got a nauseated just a few times and ate like a crazy man most days. He never needed a feeding tube, in fact he gained weight during treatment! He did get a significant radiation burn, but we were able to treat it with silvadene. These side effects were minor compared to the things we feared would happen.

 

I know the idea of going out of town is hard to imagine. We agonized over the idea! But in the end we decided that no matter how hard it was, in the end it would be worth the benefit to our son! We spent 7 weeks in Texas (we are from Ohio). My son is a triplet, so we have two other 10 year olds. We also have a 15 year old. We knew it would be tough. We knew Gabe would not like being away from home and his sisters. But, in the end, the time flew by and we are now all back together!  I know it seems tough. I beg you to look at the long term picture here. While we were in Texas we meet a young man, 23 years old. He was being treated for a secondary cancer. This was our worst nightmare right before us! He had cancer when he was 10 and had gotten radiation. Proton wasn't available then. Your son will not want to leave his life at home. What kid would?!? In the end, I think proton is a great option for kids. My prayers are with you. I know how scary this time is!  I will be paying for your family!

 

By the way, Gabe finished treatment 6 weeks ago and is doing great. He is playing baseball and soccer!

hi, Kim.  so good to hear from you.  it warms my heart to know that Gabe is doing so well and back at sports!  please tell him hi, and to keep move forward.  i still keep up with his page.  prayers for Gabe and family.

God bless you,

dj