Saturday 7/15/2011

Saturday, 7/16/2011

 So the day started off with breakfast with the kids. 
And then we divided up again.   The kids went off with the counselors while us parents sat and had
discussions with experts.  The first panel of experts today was the survivor board.  This consisted of a 22 year old man that has survived a brain tumor for 11 years now, His mother, and a woman who grew up with a brother that had brain cancer.  We got to ask questions and learn how it has affected them as a whole.  The brain tumor survivor was telling us that he lives on his own and is able to hold down a job.  He does have memory problems and some energy difficulties but he is functional. This was a real reality
check for me. He started chemo at the age of 12 years old; his brain was almost fully developed already. I have
huge fear that Ellie’s brain is going to be affected by the chemo.  I had lots of tears today because one of the moms informed us that she is already trying to get on a waiting list for her daughter to be taken care of when she becomes an adult in case something happens to her. 
I guess I was naive in thinking that if Ellie survives this that things will go back to normal and she will live a healthy easy free life.    
 
After meeting all these families I realized that we have an
incredibly hard journey ahead of us.  The Sister of a brain cancer survivor was a great resource for us.  We got to ask her how she felt through this.  She did tell us that there
was a huge damage that was done with her relationship with her parents because she was left out.  She basically
said don’t forget about your other children.  Dave and I looked at each other and realized that we really need to make a huge effort to make sure Jake gets everything he needs too for a healthy and happy life.  

Both the survivor and the sister of a survivor agreed
that they did not want cancer to define who they were. 
When people came up to him they would ask about how he felt how cancer is  etc.  She agreed that she also had
a similar difficulty. Every time the had a conversation with anyone as she was growing up, they would first ask
about her brother. She was often forgotten.  I just hope that we can make sure that Jake can go through life as Jake not Ellie’s Brother.  I know from personal experience that I am known as Ellie’s Mom.  This is ok for me I am proud to be Ellie’s mom but I want to make sure that Jake is known for being Jake not Ellie’s Brother. This cancer does
not define who my children are.  Ellie is a sweet seven year old who loves art and to sing.  Jake is a rambunctious fun loving five years old who knows how to make you smile.  I could not love my kids more.

 .We also got to meet up with a panel of medical experts and ask them questions as well.  And that was helpful to find out that Ellie’s Oncologist is actually working on
researching a project for injecting chemo directly into the tumor.  It is in the research phase but pretty incredible that he has come up
with this idea. 

On to more exciting things. We had flour wars today. 
What a blast although Ellie was really not into it Jake was
opposite.  He couldn’t get enough of it.  We also had a great time at the camp fire tonight.  I think the
best and most exciting thing that has come out of this is how proud I am of my son Jake.  Jake made great friends
with a little boy that needs a walker to walk and not once did he ask why. (I think this might be because he grew up with me sometimes needing a walker) He
just thinks he is great because he plays with him. 
He already is trying to have me plan play dates. 
They do live kind of far but we will defiantly be making the trip every so often so they can play together. 
Jake is one of the most loving and open children I have ever met.  I cannot say enough about my little
man, every day he empresses me in so many different ways.  He even got up with all the counselors today to sing all the songs.  I kept on telling everyone they have a
future camp counselor in him.  I was also proud of how open Ellie was with all the counselors and kids.