CureSearch Walk

Hey Everyone

May1st will be the first ever New Orleans CureSearch walk at Audubon Park! It will be great fun and its a great cause. Ben will have a team walking...Pirate Ben Sarrat Jr Team! If you would like to walk please register on line and come on out May 1st!!! If you aren't local you can sponsor Ben's team or you can be a virtual walker! Here is the link for the walk

The CureSearch Walk: Conquering Children's Cancer Together:

Click on the walks section, select the New Orleans walk, and then choose Team Pirate Ben Sarrat Jr!!

We are doing well, well as well as can be expected. We have good days and bad days but mostly good. Shaun had a rough day the other day he was very angry with me for not going to bring Ben home. We talked for about an hour and then he said "Mom I'm not listening to you anymore I will just get Superman to bring Ben back" and that was the end of that!

Shaun is doing great at T-ball ( he's on the team Ben would have been on) he's a little young for the team, but he is doing great.

Hope everyone is enjoying all the nice weather!

Love to all
Erin

Phoenix Memorial Service for Lil Ben

Hello All-

We know Ben has touched lives across the world, but the community in Phoenix has been especially strong in supporting Grandpa and Grandma O'Brien. They would like to take the opportunity to share in Pirate Ben's memory through a memorial service with all of you. The details are as follows:

Lil Ben's Memorial Mass
St Gregory's Catholic Church

18th Avenue & Osborn
Friday April 9, 2010
5 p.m. Mass
Light dinner to follow immediately after Mass in Gordon Hall

Thank you once again for all the love and support you have shown to us all throughout these months.

Lots of love, Aunt Mego

Angel Jacob

Well its been 3 weeks since Ben's funeral. I keep meaning to post it just never happens. Its been a busy 3 weeks..

Ben and I went back to work full time on the 7th, nice to be busy but that 5:45 alarm clock is tough to get used to again!

Hogs for the Cause was a HUGE success far exceeding the $20,000.00 goal! We are so excited for them, they really pulled off a great fundraiser for DIPG. And next year is already shaping up to be bigger and better. Lots more teams interested. I plan on helping them out more next year and hopefully get the message of Childhood Cancer and DIPG more of a focus - we've got the people coming now we need to educate them.

We went to Michael Reason's Golf Tournament Fund Raiser. We got to spend a lot of time with Michael and his family. And the next day we all rode together with Chris Roberts in the Irish/Italian parade in Metairie! It was a lot of fun.

Tomorrow I will be flying up to Cincinnati, OH for Jacob's Celebration of Life Ceremony. 21 days ago Jacob was here, he spoke at Ben's service, and made sure not one person made it out of that church without having a good cry! He was such a special guy. I was so upset to hear he had passed Sunday morning. But I know Ben was definitely with him. Now the mischief those two get into may get them booted out of heaven!

Another local girl Arianna lost her battle last night as well. And Friday another little 6 year old girl was diagnosed at Children's hospital.

I will try and post a few pics from Hogs for the Cause. For those of you who don't know yet Ben has a team walking in the May 1st CureSearch walk here in New Orleans. If you would like to join his team and walk or just make a donation go to www.curesearch.org click on the New Orleans walk and chose Pirate Ben Sarrat Jr's Team! We (Ben Sr , Shaun and I ) wont be walking this year, we will be at a DIPG walk in Nashville, TN with our DIPG family. But I am helping with the committee planning the walk and I am hopeful we will change the date for next year so we can participate.

Well I'm off to bed...early flight tomorrow. Much love to all.

Erin

THANK YOU

Dear Friends

There is no way to thank you all for supporting us these last 15 months. Ben's service was beautiful today, thank you to everyone who worked so hard to make it happen.

Brighter Horizons - I can't say it enough you ladies are AWESOME!!! The slide show, the poster and the book were just wonderful. Thank you for helping get things done today. I owe you all so much. We are blessed to have Shaun cared for by such wonderful women, who I am proud to also call my friends.

St Andrews faculty and staff, thank you for all your hard work putting everything together for us today. It was so nice having you all there with us. And the PTA was wonderful putting together all that yummy food for after! You ladies work much to hard.

LA State Police, thank you for being there today, Ben would be honored. The slide show was just great! And the fly over was above and beyond. Thank you for all you did for Ben and our family and all you do everyday to keep us safe.

Thank you to all the doctors and nurses, at Children's hospital and Touro Radiation Oncology department. You all have been amazing over the last 15 months. What a blessing it was to be able to battle Ben's cancer close to home where he wanted to be!

Thank you to all of our family and friends who traveled from near and far to be with us. Thank you for the flowers and the cards. And I want to thank everyone who made donations to The Cure Starts Now and I Could Be Your Child in Ben's name - hopefully with more funding and more research soon no other parent will have to hear "your child has cancer and there is nothing we can do!"

And last but not least a VERY SPECIAL THANK YOU to Jacob Taylor, fellow DIPG warrior who traveled down from Cincinnati, OH to be with us. For those of you who could not make it today you missed an amazing speech by a courageous young man. Jacob asked to speak at Ben's service and Big Ben and I were honored by the wonderful speech he gave. He spoke with grace and maturity well beyond his years. For those of you who would like to support this amazing kid, here is his website...http://www.caringbridge.org/visit/jacobmatthewtaylor

It is now up to US to keep Lil'Ben alive in our hearts and in our actions. And so as a first step in building our new lives our family will be participating in the Second Annual "Hogs for the Cause" this Saturday May 6th! We missed last years event due to our amazing Make A Wish Trip, but we wouldn't miss this year for anything. Hogs for the Cause has fallen in love with Ben and decided to continue to support DIPG warriors and DIPG research as the "cause" - and we are honored. So join us next Saturday out on the Fly by the zoo for a great day of food specifically all things PIG! To find out more about this great event go to www.hogsforthecause.org also you can follow them on facebook! See you there!

Now, what to do with the blog??? Well for now we will continue to keep posting messages now and then to keep you updated with us, with other DIPG warriors, and other events and information in the war on DIPG.

Again THANK YOU THANK YOU THANK YOU we will spend our live trying to pay forward all your support!

Much love
The Sarrat Family
Ben, Erin, Shaun and ^Lil'Ben^(forever 6)

Memorial Arrangements

Dear Friends

Thank you for all your kind words, cards, and food! We are doing really well, it helps being busy.

Ben's Celebration of Life / Funeral Mass Arrangements:

Monday March 1, 2010
St Andrew the Apostle Church
3101 Eton St
New Orleans, La 70131

Visitation begins at 10am
Funeral Mass begins at Noon
Refreshments to Follow

In leiu of flowers we are asking people make donations in Ben's name to support Childhood Cancer Awareness and Research. The two organizations we support and recommend are

The Cure Starts Now Foundation
www.thecurestartsnow.org

and

I Could Be Your Child
www.icouldbeyourchild.org

We ask that friends and family coming in from out of town let us know you are coming, we would like to make arrangements to meet up with you. Also Big Ben's hotel, New Orleans Renaissance Arts has made arrangements for us to have hotel rooms for friends and family so please let us know so we can make you a reservation. The best way to contact us right now is email or text: erinandben@cox.net or 259-9351.

Ben's obituary will be in the Sunday edition of the Times-Picayune.

He Went Very Peacefully

At 2:10 am February 25, 2010 Ben Jr. took Jesus's hand and earned his angel wings.

Hello All

It was kind of a rough night. Ben spiked a fever in the middle of his second transfusion, so we had to stop it, he can't swallow anymore so he can't take Tylenol, so the only way to bring his fever down was cold compresses. But after the blood was tested and they checked his blood again we were able to start the transfusion again with a fresh bag, so he has gotten two and a half transfusions so far. They are going to do another transfusion here shortly. He is on morphine for pain and he is unresponsive. Every once in a while he will open his eyes and look around and sometimes answer a question with his eyes or a slight nod. But he appears to be resting comfortably.

Thank you for all the sweet messages, and support, we really appreciate it.

Erin