Friday, January 16, 2009

Business as usual - and greatful for it!

Ben is doing great. He's at school full time, and loving it. We go to clinic once per week for a few hours and thats it right now. No meds - which is still puzzling. As "sick" as he is shouldn't we be doing something to fix that? But rest assured every doctor in the country says we are doing the right thing. I know because I think I've talked to them ALL. We are looking into getting Ben into a Phase II experimental drug trial at Cincinnati Children's hospital, not sure yet if Ben qualifies or if our doc and theirs recommend it. The nice thing is it sounds like we may be able to do this trial here if we decide to do it and if our oncologist signs on. Not that I wouldn't love to spend several weeks in Ohio in the middle of winter - NOT (sorry Cole Family love to see you just not that cold white stuff, I think its called snow.)

Ben is thrilled about our Disney vacation quickly approaching (Feb 7th). He is super excited his Grandma and Grandpa, his teacher Ms Jessica, his Grammy and Pops, and some of his cousins will be joining us for a few days throughout the week we are there. He asks me to measure him almost every night because he has to grow one more inch to be tall enough to go on some of the "Big kid scary rides". I told him we would get taller shoes and spike his little beanie of hair up if he really wanted to go that bad!

Thanks for all you support, and messages. Ben love reading them (okay I read most of them to him, but give Ms Rita a few more weeks and I'm sure he'll be doing it on his own). Sorry I don't post as often as I used to, but hey no news is good news! Being back at work full time makes it more difficult to find the time.


Thanks for all your love and prayers! I'll have new pictures soon! I promise.

Love ya

Erin

BLOGGING 101

I have been told by many many people that they have no idea how to post a message to Ben. So here goes " Blogging 101" or at least the portion of Blogging 101 I understand. Each time I post an update there is a line underneath in tinny print (some of you may need glasses for this part) that says "Posted by the Sarrat Family / Aunt Mego "time stamp" # comments". If you click on the word "comments" you can see the messages people leave for Ben. Scroll all the way down and there is a Section called "Leave your comment" and a big empty box. Just type your comment in the box and click on the orange publish comment button. You don't have to worry about choosing an identity I don't think, because I don't know exactly how to do that! Hope that helps! If any of you are accomplished bloggers out there, let me know I have questions on how to do "stuff".

17 comments:

Anonymous said...

Erin and Ben,
I am glad things are going uneventful for you all. I bet you all can't wait to go to Disney. We are big Disney fans. Feb is a great time to go, low crowds. Is this Ben's first trip to Disney?
I am glad to hear we are not the only ones who could not figure out how to leave a mess. It is really easy after you figure it out.
Stay well and warm. Have a great weekend.
Cindy and Anna Kitchen

Anonymous said...

Hi there Ben! WOW!! Won't be long and you'll be in the magical kingdom!! You're going to have such a blast!! Stand TALL pirate Ben, and you'll get on those rides!! Tell your mom she's doing a great job with EVERYTHING!!! You have a wonderful weekend and I'll see you Mon. at school.

Q. What do skeletons use to communicate?
A. Cellbones

Love you bunches and bunches!!
Ms Rita

Anonymous said...

Hey Ben, Do you have any of those sneakers with springs in the heals? I think they might make you taller or at least bouncier. I'm sure you can get on any ride you want just by using your charming smile. Your family is doing a fabulous job keeping the us all informed of your progress. We can't wait to see pictures of you at Disney World. Are you going to get your picture taken with Captian Hook or Peter Pan? Tonight John and I are having dinner with your Grandma Judy and Grandpa Pat. Much love, Sandee

Shanz said...

Isn't it wonderful what the power of prayer can do?? We pray for Baby Ben and his family each and every night. It is wonderful to hear that he is doing well.

Anonymous said...

Glad to catch up. Grow, Ben, grow, or get elevator shoes and a tall hat like Abe Lincoln's. I know you can't wait for the DisneyWorld trip. It is out of this world. Well, I'm still on birdie jokes. So here's another one:
What do you get when you cross a parrot an a shark?

A bird that talks your ear off!

Love, Megan's mom, Peg

Anonymous said...

Ahoy Ben,

We love that you are back in school fulltime and enjoying it! We would be counting the days to Disney World if we were going, that's for sure! Maybe you will get to see Cinderella while you’re there. If you get to talk to her, tell her this joke for us. OK?

What weights six tons and wears glass slippers?
Cinder-elephant!

Please tell you mom that it is OK that she is posting less often although we are looking forward to seeing your pictures of your dinner. You grandma told us you had a very cool suit on that night!

Adios amigos!
Dave and Ginger

Re Blogging 101: We like to select the name/url option when we respond. We don't put in a URL as it is optional.

Anonymous said...

Ben, so glad to hear you are back in school full time. Now you and Ms. Jessica are going to have to work instead of all that playing I saw you guys doing at the game. Since your a pretty smart guy, she won't have to tough of a job to do.
You and your family have a wonderful time at Disney world. Don't take grandma Judy on to many scary rides. I have never been their, so you will have to tell me all about it when you come to Phoenix.
Erin I really want to thank you for the wonderful job you are doing on the blogging. it is so aswesome the way you are keeping everyone informed. Best of luck with the new experimental drug program. Love you all.

Aunt Shirley

Anonymous said...

Hey Ben, glad you are doing so well and excited about Disney. I agree with your mom, just get some big shoes and spike your hair, it will work. Your mom came and saw me and timmy the other day and brought him some magazines, thanks!! We will be in clinic next week and again in Feb, maybe we'll see you then. Take lots of pics at Disney so we can all see them.
love ya, wendy and timmy
www.caringbridge.org/visit/timothylynn

Anonymous said...

Hey Ben,
WOW…Only 21 days to Disney World! You must be SO excited. Make sure you have TONS of fun for us, and take lots of pictures!!
Sorry I missed your mom’s Dr. Pepper explosion, but she did look pretty funny with a BIG brown spot on her shirt! I’m so glad you don’t have go back to the clinic for while…who likes spending three hours in a doctors office!!
We will continue to pray you and your family!
Always Believing,
Melanie & Kale



http://www.caringbridge.org/visit/kalebradford

Anonymous said...

Hey Ben
Wow I guess you guys must be so excited to go to Disney World. We wish we could go with but we are going until June. Brandi says tell her about the big rides but she doesn't think she'll go on them. they are a little too scary for her. Have a great day and see you at school tomorrow. Maybe I can give you guys piggy back rides again since I became "Your Horsie".LOL
Love and prayers
The Brathbury Family

Anonymous said...

Hi Ben,
Thank you for the wonderful thank you note...I love your casual pose on the front of it. Your Grandmother Judy gave me one of your very green prayer bracelets and I never take it off. I'm glad you liked the story book and will look for more of the same. Have fun in Disneyworld! I bet you grow an inch.
I love you!
Maureen

Anonymous said...

Helllooooo Ben it's your friend THE SSC MONKEY, it's great to hear you are back at school. I bet you are having an awesome time playing with your friends.I just got back from my holiday vacation in Baton Rouge and boy are my arms tired from swinging thru all those trees.Did your mom tell you she was driving a big yellow school bus around SSC sunday with a bunch of grown ups in it? They seemed like smart people but every where she stopped with them she had to tell them if they were looking at a CAT,a BIRD,or a HORSE with sticks growing out of its head !!! She also had to tell them what each animal eats. I heard her say, a CAT eats cat food, a BIRD eats bird food, and a HORSE with sticks growing out its head eats horse food !!! Talk to you soon hope fully before you leave on your supervantastic vacation...your friend THE SSC MONKEY

GARY P said...

hi guys,thanks for the computer help. i got one for my birthday, but mostly just read my blog from ben daily. we had dinner with your mom and dad and the freemans on friday. great food and great friends. got to see elvis, megan and mike also. hope she did great in the marathon. hope you all have a great time in disneyland. sounds like lots of fun..your mom gave me almost a whole pack of bracelets. i will send them to folks that have ben on their prayer lists. enjoy . love, marilyn prigge

Anonymous said...

Ben, Erin, Ben & Sean,

its fun to read your blogs. Its the first time I have ever done anything like this.
It sounds like you are feeling better and doing well. How exciting to be going to Disney World. Eat your veggies so you can grow taller.
We pray for you daily and keep you all in our thoughts and prayers.
Stay strong and keep the faith!
Love,
Dean & Becky Mosher & family

Uncle Peter and Aunt Robyn said...

Hi Ben (and Erin!) -

I can't wait to hear all about Disneyland!! I'm sure you'll get to ride some really cool rides (probably even some Big kid scary rides)! Have fun and guess what ... I'll see you right after you get home. Uncle Peter, me, and your cousins, Andy, Lauren and Abby will be in New Orleans right after you get back. It's snowy and cold here so I sure hope it's warmer in New Orleans. Can't wait to go to some parades and catch some beads. You'll have to show Andy and Lauren what to do! Have a great day at school!! Can't wait to see you! Love, Aunt Robyn

Anonymous said...

Ben, I'm sure you can't wait for Disney. I hope you like McDonald's fries, there are stands everywhere in the parks. We are going at the end of February. Tell Mickey we will see him soon.

Erin & Ben,
Just "Believe" that if he takes you to it, he will see you through it.

Dawn

Anonymous said...

Hey Ben, Can't wait for you to get to Phoenix. I think you know that we have a neighborhood roadrunner but now we have a Hawk. He sits on the pole above the pool and sure has got the attention of the little birds! Have fun at Disney and give Mickey a hug for me. Love Jeannie O'Connor