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

Resting

Ben is resting quietly now. He has had one blood transfusion and one platelet transfusion to try and bring his blood counts back some. They just started another 4 hour transfusion and then he will have more fluids and morphine. The doctors are planning more transfusions for the morning to try and get his counts up.

Ben is still waking up and looking around and answering questions with his eyes but quit trying to speak earlier today.

Hopefully after all of this blood he will come back around a little bit, but we just don't know.

A huge thank you to everyone who has been helping us the last few months and days when it has been really hard. We truly appreciate it.

A little more comfortable

Ben is feeling a little more comfortable. They started him on morphine to relieve some of the pain and now they have started him on blood and platelet transfusions. His counts are extremely low so it will be a slow process with multiple transfusions of both. This will hopefully help his body carry the oxygen that he is getting.

Change of Location

We decided to move Ben to Children's hospital early this morning. We were having an extremely difficult time keeping him comfortable over night. When we got ready to move him we found that he had hemoraged out of nose because of his low platelets, and his port was not functioning properly.

We got him into the last available room on 4west. That Dr. Velez has got some pull when she makes a phone call at 7am. They were waiting for us to get here. They have already fixed the port and we are now waiting on morphine to make him a little more comfortable.

We will try to update again later in the day.

Long Evening

Ben is now resting as comfortably as he can. His blood work came back not too good from the lab so the on call oncologist wanted us to bring him in to Children's this evening to give him a transfusion. That would be a difficult process because he would have to be admitted through the ER. Ben's doctor found out the exact numbers on the labs and thinks it will be better if we try to bring him to the oncology clinic tomorrow where they have there own infusion room and they can set it up for us ahead of time and get in and out as quickly as possible (8 hours). Erin and I have not decided if we even want to try and do that. Just moving him around in the bed gets his heart rate racing and makes him short of breath even on the oxygen

We are hoping for a quiet uneventful night tonight and maybe he will rebound some in the morning once he is done with this IV fluid infusion. Dr. Velez says she is going to make a house call and come see him sometime tomorrow.

Afternoon

The doctors have called the home health nurses back in now. They will access his port again to draw blood, make giving him fluids easier, and giving him any necessary medication easier. We think he will begin needing pain medication soon.

A New Morning

Hey Everyone, Ben is still fighting. We have now discontinued all of his medicine except his steroids. It is alot of work for him to swallow all of his pills. We are now spoon feeding him liquids the consistency of pudding. We moved his hospital bed into the living room now because it was too much work for him to sit up on the sofa so now we can just push the button and raise him up and down. He had a nice early morning visit with Mrs. Williams, Mrs. Hernandez, and Mrs. Hedlum from St. Andrews to brighten his spirits a little.

We Will update again later

No Ice Cream today

Hey Everyone,

No real change since yesterday. Ben hasn't wanted to eat anything but we have been getting him to drink a little. Had a visit from his good buddy Jackson today and that perked him up for a little while. Fr Paul came by and give him the anointing of the sick today. Just kind of hung out all day with family and friends.

Love to all
The Sarrat Family

Good day

Well its been a long, but good day. Ben has been awake here and there throughout the day. Even when you think he is sleeping he's not ...he's listening to everything around him and continuing to through out his T-shirt worthy one liners!

We had lots of great visitors today. Several of his buddies, Mitchell, Patrick, and Tanner can by with their families and we had a great game of Bingo...they all won it was amazing! All the local cousins came to play, and aunts and uncles, so that was fun as always. Grandma and Grandpa flew in from Phoenix and Aunt Mego and Mickey made it as far as Houston and will be here early Sunday morning. Ms Melanie and Ms Jessica were here most of the day and we love having them here to play! And our wonderful neighbors Ms Kim and Mr Tom were in and out all day. Thank you to everyone who came to see us Ms Rita, the other Ms Jessica and I hope I'm not forgetting anyone. Ben loves all his visitors!

So Ben heard his cousins were on there way and he asked when I was going to get his ice cream flavors today. For those of you who don't know Ben has a new friend Mr Chris who owns a 31 flavors. Mr Chris gave him a lifetime free ice cream pass, so the first time we went Ben asked what kinds they had I told him they had lots, that is why it was called 31 Flavors because well, they have 31 flavors...he then asked can I try all 31. I told him sure but not today, so we agreed we would make it our mission to try all 31! We had tried 7 before today. So he was sending me out to get two more flavors today, but Ms Melanie said she would go, and she came home with all 24 flavors we hadn't tried yet!!! So needless to say we ate ALOT of ice cream today. 10 more flavors down and 14 to go!!! When asked what his favorite so far is Ben can only mumble ALL! Thank you to Mr Chris and Ms Melanie for this fun diversion from reality!

Friends are welcome to stop by and see Ben in the next days, we just ask that you call first to make sure he is up for it. We are so blessed to have so many wonderful friends and family to support us through these last 15 months and this most difficult week ahead. Also a big thank you to my DIPG family and NOLA cancer moms you all have came to be so important to me!

We will keep you all posted as we can. Ben is resting comfortably right now, and I pray for an uneventful night.

Love to all
The Sarrat Family

Hanging in There

Ben is still hanging in there and fighting. His breathing has gotten extremely shallow. He is very in and out now and we do not know how much longer he will be conscious. We will try to keep everyone posted as we go.

Big Ben and Erin

Happy Valentine's Day

Hey Everyone

Ben wanted me to post a Valentine's message...

Happy Valentine's Day!!!

We are just laying low trying to recover from his RSV ans pneumonia still. On oxygen about 50% of the time, and confined to the wheel chair but still fighting.

Ben!

AWESOME DAY!!!

Ben accepting the proclamation naming Feb 6, 2010 "Pirate Ben Sarrat" day in Jefferson Parish!

Wow! We had such a great day today. Ben got to ride in Choctaw instead of Alla - they moved our float up! It was so much fun. Ben had a great time - he got a little tired the last half hour but he was up throwing treasures for about 1 1/2 hours (crazy amount of energy for him!). It was a nice day and the people on the float were so sweet about making sure he was having fun and comfortable. The float stopped at 2 reviewing stands...at the first they announced Ben was their special guest and because of his courageous fight they were naming Feb 6, 2010 "Pirate Ben Sarrat" day - in Jefferson Parish!! How cool is that we got a proclamation and everything! At the second reviewing stand in Gretna they made him an official Gretna Policeman he got a badge which he has already started arresting people with. He had alot of questions about when he used which badge - Gretna Police vs his State Trooper Badge!! What a great day made possible by Councilman Chris Roberts from Jefferson Parish!!!! Thank you Chris he had an amazing time - and he wants to know if they are going to throw a parade for him every year on "his day" - I told him I would see what we could do! HaHa!

So tomorrow is the BIG GAME!!! Ben is going to rest up till the game so he has plenty of energy to watch the game and bring them luck!!

Hope you enjoy the pictures!GEAUX SAINTS!!!!!
Erin






Ben on his last day of radiation (this time!)






















This is the get well chain he got from his school, each link is a special message from each child at the school! He loves it!






Ben riding today - throwing treasures!

Getting Ready for a BIG Weekend!!!

Hey Everyone,

Just checking in to let you know we are good. Ben is recovering, its a long process the RSV & pneumonia really did a number on his lungs. He has difficulty walking, he is very weak. But he is in good spirits, he went to school for a couple hours two days this week already. Ben is pretty much confined to his wheel chair, and requires oxygen every once in a while. We went to clinic today and had a CT scan and saw the neurosurgeon so it was a long day. His counts are good, his CT looked great the procedure is doing exactly what it was supposed to, plenty of space for CNS fluid to circulate. Ben finally got his stitches out of his head so that is nice, and his blood work was good so he doesn't need to be on IVs at night because he is really working hard to eat and drink well. We are taking today off and resting we had a long night lots of coughing and breathing treatments. And we are saving our energy for this weekend.

Saturday, Lil Ben will be riding Alla (a Mardi Gras parade - for all you out of towners - we do Mardi Gras for about 2 weeks not just Fat Tuesday!) as long as he is feeling up to it. He was invited by Councilman Chris Roberts from Jefferson Parish to ride on his float with him! Lil Ben doesn't know yet, we didn't want to get him all excited and then have to tell him no that morning if the weathers not good enough or if he is not strong enough. So that will be a great surprise for him! Councilman Roberts has been wonderful, he has arranged for a police vehicle to pick us up at the house just before the parade so we don't have to wait and park and weave through giant crowds, and the police escort will stay with the float so if at anytime Ben needs to get off they will stop the float get us off and take us home. It would be impossible for us to do this without those special accommodations. So come watch the Krewe of Alla here on the Westbank!
We will definitely post pictures!

Sunday, well I'm sure you all know what Sunday is.......YES the SAINTS ARE GOING TO WIN THE SUPER BOWL ON SUNDAY!!!! We are all very excited for this! We are planning on hanging out and watching the game, no giant party - but daddy is going to use our LCD projector and show the game on the garage door in the drive way, so it will be life size! Don't tell the NFL they will probably fine us for "rebroadcasting with out the expressed written consent of the NFL". Our neighbors are having parties so they should enjoy the outside broadcast too!

Hope everyone has a great weekend!

Erin