Pirate Ben's Blog

One Year

2011-02-25T09:53:00.003-06:00

Today marks one year since ^Lil Ben^ passed away. Life is different now but we carry on. Erin is loving teaching at St. Andrews. Big Ben is still working away at the Renaissance Arts Hotel, and Shaun is Shaun. He will be leaving Brighter Horizon's Day Care after summer camp to go to Kindergarten at St. Andrew's. Hopefully he will have Mrs. Williams like Ben did.

Kind of fitting but Big Ben brought home the new trailer BBQ today to use for pediatric cancer fundraisers. A huge thank you to Kieth Faucheux of Faucheux's welding in Belle Chasse for biulding this over the last few months. Kieth also built Lil Ben's wheel chair ramps so we could get Ben in and out of the house easier. It will make it's public debut at Hogs For The Cause this year on March 26 at City Park.

Happy Birthday Ben

2010-12-04T08:53:00.002-06:00

Happy Birthday Ben, you are loved and missed so much. 7 would have been great.

2 Years

2010-11-12T19:55:00.003-06:00

Today makes 2 years since our life changed forever. Ben fought the best fight he could for 15 1/2 months. Now we try and carry on his legacy. Big Ben is building a bbq pit to take to fundraisers, Erin is loving St.Andrews, and Shaun is Shaun.

We all hope one day no families have to hear what we heard 2 years ago today but we will continue to fight for Ben's legacy.

Still Here

2010-07-03T21:28:00.002-05:00

We are still here for everyone wondering. We have been trying to find our new life now without Ben. Shaun is doing well, and Erin and I are both back hard at work all of the time. Going through what we went through puts a new prospective on our lives now, so things are some what different. Erin has been very active through different Internet groups for DIPG families. I prefer to stay in the background most of the time.

Erin has accepted a new job. She will be teaching math and science to 6th grade students at St. Andrew the Apostle School near our house. Ben went to St. Andrew's as much as he could for kindergarten. I know it was difficult for the other kids and parents when they learned about Ben's condition, but they were a wonderful community to join. Mrs. Williams will always hold a special place in our hearts for the warmth she showed, us knowing she was welcoming a dieing child and his family.

Erin's dad had Aortic Valve replacement surgery the other day and is doing very well, so we are grateful for that.

Thanks for checking on us.

Much love
The Sarrat Family

CureSearch Walk

2010-04-15T21:46:00.003-05:00

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

2010-03-31T20:37:00.002-05:00

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

2010-03-22T20:29:00.003-05:00

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

2010-03-01T16:53:00.003-06:00

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

2010-02-26T14:37:00.005-06:00

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

2010-02-25T02:32:00.004-06:00

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

2010-02-24T09:39:00.004-06:00

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

2010-02-23T21:17:00.003-06:00

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

2010-02-23T14:20:00.004-06:00

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

2010-02-23T08:44:00.003-06:00

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

2010-02-22T23:20:00.003-06:00

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

2010-02-22T14:48:00.003-06:00

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

2010-02-22T09:16:00.002-06:00

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

2010-02-21T21:38:00.003-06:00

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

2010-02-20T23:59:00.003-06:00

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

2010-02-20T12:52:00.003-06:00

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

2010-02-14T20:15:00.003-06:00

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!!!

2010-02-06T17:37:00.011-06:00

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!!!

2010-02-04T09:27:00.005-06:00

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

Home

2010-01-28T12:53:00.004-06:00

Hey Everyone

Sorry for not posting sooner just trying to get settled in and set up with all the new equipment. We came home late Tuesday afternoon. We had the last day of radiation yesterday and then doctors appointments, so today is the first day I've had to set things up and get us settled in.

Ben is doing good. Not quite up for school yet, but he says he wants to go full days not just for a few hours like mom suggests - so we will see. He is on an IV pump all night to give him fluids, he gets breathing treatments every few hours and requires suction several times trough out the day to help him clear his lungs. He has his port accessed all the time now so I can hook his IVs up at night. He is having more troubling getting around, he is very weak and he has very little lung capacity, but he is getting stronger every day.

He had a great visit from his teacher, his principle and a few other special teachers from the school. They brought an awesome card chain with a link note from every student at St Andrew's all 800!! And they have set it up so his he can see his class and they can see him through the computer - kind of like skype. Its fun, he loved seeing all his buddies.

So now we just need to build up our strength again and let that radiation kill the tumor!!! Have to be strong for the SUPERBOWL!!!! Thats right Ben's Saints are going to the SuperBowl for the first time!!! We think its because Ben did those tackling drills with them at the beginning of the season and picks some really great plays that Coach still runs. We are very excited - we definitely have SAINTS FEVER here!!!

We'll update again later! With Pictures!

Erin

Another few days

2010-01-23T20:33:00.003-06:00

So we finally got to see Dr Velez today, yeah!!!! We love Dr Velez and hate the rotation system here - its stupid! But we talked with Dr Velez today and she thinks Ben is doing great. She is more worried about his nourishment than his breathing at this point. Because of the loss of his swallow reflex we can't let him drink thin liquids or crunchy foods so he's on a soft think diet so he doesn't aspirate. And he is not a big fan of the thickened liquids - so she wants to make sure we can get into him what he needs otherwise we will need a feeding tube.

So it looks like we will probably be here till Tuesday getting those things worked out. But he he is doing good so thats okay we will watch the SAINTS game tomorrow and scream really load no matter where we are, home or here! Ben is off oxygen and tomorrow they are taking him off IV and we will see how he does.

We'll let you know when there is more news. Sorry for the brief updates but Mr demanding is addicted to computer games now so I have to wrestle it away from him in order to post!

Erin

Doing good...still at the hospital

2010-01-21T07:58:00.003-06:00

Big Thank You to Aunt Mego for doing the last update, we were a little busy and no Internet in ICU.

Ben is doing well, we moved out of ICU on Tuesday evening. He was still positive for RSV so we went to 4 center instead of 4 west the cancer floor. He is still on oxygen but doing really well. Actually he is yelling at me to give him the computer right now so he can play games!

He has been continuing on radiation we go by ambulance from Children's to Touro everyday. He had to stop his chemo temporarily due to his low blood counts. He had a transfusion the first night we were here so the counts are rebounding. He did a swallow study yesterday to figure out what types of foods he is aspirating on and which ones are safe. This is all tumor related and something we expected. He now can't eat or drink anything thinner than honey, and no crunchy things. So that is manageable. They gave us thickener and we have been testing out all our favorite drinks to see how they taste thick, so far our favorites are lemonade and chocolate milk.

Ben has a pulmonary function test and consult with a Pulmonalogist to sort out what is tumor, what is RSV, and what is because of the aspiration. Then we can try and get his breathing as good as possible and get him out of here.

Thank you to everyone for all the prayers and support. Thank you to our neighbor Ms Kim for spending the day here Tuesday taking care of Big Ben and I while Ben was in ICU. The trashey magazines have been a big hit with the night nurses too! And HUGE than you to the wonderful Ms Jessica for taking such good care of Shaun while we are here with Ben. He is having so much fun he didn't even want to go home with daddy last night!

I'll update agin soon.

Erin

Trip to Children's Hospital

2010-01-19T07:22:00.004-06:00

Hey folks, Aunt Mego here.
Erin asked me to share a short update. Some of you may know that Ben aspirated at home and was taken to the ER yesterday afternoon by ambulance. He was admitted to the PICU for monitoring last night. Now for the good news, he is doing really well now and they are planning to transfer him to 4W today and keep him for a few days. Erin asked me to update the Blog as she knew lots of us would be worried about him this morning and she can't update it right now. As always, keep lil Ben in your hearts and prayers. More to come later when he is back on 4W with his favorite nurses.
Love Aunt Mego

Radiation went great!

2010-01-14T17:12:00.003-06:00

Today was Ben's first day of radiation. He did set up on Monday, but today was the first treatment. So we made a day of it! He went to school this morning and then we left at lunch, went to radiation and then went to daddy's restaurant for lunch! Big Ben and I had to talk him into it, he wanted to go back to school - go figure. He had a great time and ate tons!

So we have changed his radiation time so he can go to school almost all day and then go to radiation! He will miss nap, and packing up at the end of the day, and maybe a story or two (but don't tell him about the stories or we will have to stay ALL day and pay the Radiation Team OVERTIME!!)

Please keep another DIPG family in your prayers tonight, Little Georgia from Australia earned her wings, unexpectedly today. She was quite a fighter!

Radiation...Take two!

2010-01-11T10:39:00.003-06:00

Hello all!

We just returned from meeting with Dr Z (Ben's radiation oncologist). He made his mask and we are all set to start radiation on Thursday. He will go for 10 treatments. Ben's doing good, recovering slowly from the RSV- which as it turns out is much harder on him than brain surgery! His surgery site looks great and he tells everyone he was wounded in a pirate sword fight. He is still getting breathing treatments every few hours around the clock, so mommy is pretty sleepy, Ben sleeps through them but I haven't figured out how to automate the machine to refill itself and switch on and off every four hours, so mommy doesn't sleep through them - oh well its like those first few weeks with a newborn!

We are going to go back to school tomorrow. Ben is up for it and we have scheduled his radiation appointments for afternoon so we can do the morning at school and then go to radiation at lunch and then home to nap before we go get Shaun. We are hopeful radiation will give us the same great results it did last time.

Besides the fact that it is FREEZING in New Orleans (we are still considered the South right??!??) we are doing good, and having fun as always. We will post again soon!

Much Love
Erin

HOME AGAIN!!!

2010-01-06T21:25:00.002-06:00

We are home!!!

Ben sweet talked Dr Singleton into let us go tonight! We pulled out of the hospital at 8:45pm!! Its great to be home. Ben still needs round the clock breathing treatments and meds but its much nicer doing them here at home then at the hospital.

Its been a long day and we are tired soooooo.. GOOD NIGHT!

We'll keep you posted but Ben is planning on stopping into school for a little while tomorrow and he is definitely not missing his field trip on Friday he tells me!

Erin

Out of Surgery!

2010-01-04T17:30:00.003-06:00

Hello All

Ben is out of surgery, he is chatting up a storm. He wants Burger King and to go to the playroom! The surgeon said everything went great. It was textbook, no complications. So we are very grateful it all went well.

Thank you to everyone who came to be her with us. Grandma Judy, Grammy & Pops, Ms Jessica, Ms Jackie (angel Carl's mom), and Di Lipski (angel JJ's mom). JJ's mom came all the way from Alabama to see Ben and wait with us - I love my DIPG family!!!

More news to come, but hopefully we will be out of here in the next day or two and start radiation by the end of the week.

Thanks for all the prayers today!

Erin

Surgery Morning

2010-01-04T09:33:00.003-06:00

Hello Everyone,

Well anesthesia came in and gave the go ahead for surgery. Ben is in a great mood and playing Candy Land right now. They think his surgery will be at 1pm so they will probably go down around noon. Set up will take about an hour and surgery will take about an hour and then recovery. So he should be back in surgery for about 3 hours. If he wakes up well from anesthesia and is breathing well he will come back to his room. If not he may spend the night in ICU.

Lots of prayers, happy thoughts, and good juju needed today!
I'll keep you posted!

Erin

Our little Germ Factory!

2010-01-01T16:45:00.003-06:00

Well as it turns out Ben does have a respiratory component to his breathing problems. Ben has RSV!! So we had to move off 4West, the Oncology floor. Its not safe for him to stay on that unit with all the imunocomprimised kids and especially the bone marrow transplant kids. We will miss all our buddies up there but we would never want to do anything to make any of them sick so we got transfered.

The nurses thought it would be funny to play musical rooms with us. They sent us to the third floor and after about 45 minutes they came back and told us we were moving to 4 center. Thats the neurology floor, where he would need to go after surgery anyway so I'm glad we wont have to move again.

We had to cut back on our visitor plan because of his RSV so he is a little sad. He was thrilled his buddy Jackson and his brother came up, they were such great sports because they had to wear a mask in the room. Ben has been sleeping off and on watching football all day.

It looks like the Monday procedure may have to be postponed a few days because of the RSV. We are waiting on anesthesia to make that call, but they aren't really around right now because of the holiday, so we have to wait and see.

Erin

UPDATE

2009-12-31T17:22:00.003-06:00

Hello Everyone,

As we get closer and closer to 2010 I just wanted to take a few minutes to update everyone on the last week.

We had a great Christmas, quite and fun, lots of family and friends. Ben has been battling a head cold the last week or so and it was settling in his chest, or so we thought. We have been doing breathing treatments all week because he was working hard to breath. This week in clinic we came in for blood work and to check his breathing. We had x-rays and lots of people come and check him out. They ended up admitting him yesterday for observation, respiratory evaluation, and an MRI. So after everything this is what we know...

Ben's tumor is growing again, and it has closed off his third ventricle in his brain, causing a back-up CNS fluid and extra pressure. As a result the doctors feel we need to relieve the pressure surgically. So on Monday Ben will be having surgery to open up his third ventricle, allowing the fluid to circulate again and hopefully relieve some of his systems (mainly the respiratory difficulty). It will be a few days recovery and then we will be able to do radiation again. The type of surgery he will be having is called a Ventriculotomy.

We don't have quite all the details yet, but we will most likely stay inpatient, the surgery will be midday Monday and hopefully Ben will be feeling much better by Wednesday!

So keep us in you prayers. Its nice being up here on 4 West we have made a lot of good friends in the cancer community this year and having them around is helpful. Please remember that these kids are always in need of blood and platelets. And right now there is a shortage here in LA and in TX - people are literally waiting DAYS for blood products. So please stop by your local blood center and donate today - you could be saving a child like Ben!! SO to our anonymous O- donor we say thank you for donating Ben didn't have to wait long for his blood today!!!

I'll try and update over the next few days to keep you all in the loop. And there will for sure be an update Monday night to let you all know how it goes.

Much Love
The Sarrat Family

Great Weekend! Good News! And Ready for Christmas!

2009-12-20T12:12:00.003-06:00

Hey Everyone

I hope you all are getting ready for Christmas! Ben is excited to be out of school so he can spend time with his buddies from Brighter Horizons! I think Shaun and Ben know Santa's arrival is soon, because they are really on their best behavior today. Playing nicely together, cleaning the toy room - I checked them both for fever!

Well we were at MD Anderson last week for another MRI. The doc says Ben looks good and the MRI showed the tumor is stable (measures the same size as it did last month). So he is back at full chemo dose. We are talking with MD Anderson about another round of radiation starting after the new year. There is still a chance we may be able to do it at Touro here in New Orleans we just have to determine what is best for Ben.

This weekend has been a blast. Friday night we went to Disney Live - a birthday present from the amazing Ms Jessica and Mrs Melanie! It was so much fun. The boys loved the show and our seats were perfect! Shaun actually sat still except when he was dancing in the isles (which was encouraged!)!!!! Then Saturday Ben and the rest of our family were invited to the State Police Troop B Christmas Party. They had heard Ben wants to be a helicopter pilot when he grows up and they arranged for him to go for his training flight! He and dad got to fly around New Orleans with Trooper Pilot Dean Le Vergne for an hour and Lil'Ben got to fly the helicopter! He said Ben was a natural! Ben got his wings, an official signed commission as a Pilot, he got an official ID and Badge and official licence plates there are 10 State Police Pilots and we got plate AIR 11 - so I guess there are 11 State Pilots!!!! Then Santa arrived and had presents for the boys. What a great morning. THANK YOU LA STATE POLICE it was truly a day we will never forget. We will post pictures soon - mine didn't turn out to well but they had a photographer there and said they would send us a disk!

I wrapped all the presents yesterday and the Christmas cards are all addressed they will go out first thing tomorrow! Today we are cleaning out the toy room making room for Santa HaHa! We are so blessed to be able to have this Christmas and Ben doing as well as he is. He's quite a trooper, he works so hard to keep up and have fun, he never complains about all the meds he takes or his bald little head, or all the weight he has gained as a result of the evil steroids! So everything isn't perfect by any means, but we all get to be together for Christmas and we are grateful for that!

We wish you all a wonderful holiday season, full of MIRACLES!!

Love
The Sarrat Family

What a PARTY...What a Birthday!!!

2009-12-08T18:50:00.009-06:00

Ben with his buddies on the train

Ben riding "Patrick" the pony!

Beware of pirates!

Taking a train ride with his lady!

Ben and the Magician!

The pinata notice the U of F Gator hat...the Gators got two beatings on Saturday!!!!

Wow what a birthday party! It was a little cold, but sunny and clear for the party! It was amazing. There was a magician, two bounce houses, a pony, a train, amazing food - nachos, burgers, dogs, popcorn, ice cream, and of course great cake! But best of all there were lots of friends and family!

We can never say THANK YOU enough to the Party Planning Posse - you all did an amazing job. I could never have pulled off that party, and it was such an amazing relief to me not to have to. You truly know how to make my life easier, what a blessing! Melanie, Jessica, Ms Kim, Raye, Camille, Mike (aka shnookums), Mr Rita (haha) for great grilling, Dawn (you were missed), Mr Justin (don't worry I wont publicly announce your nickname! HaHa), and for all the people that I don't even know about who helped, donated and pulled it off - WE LOVE YOU and THANK YOU SO MUCH!!!

We had a great weekend. The birthday party was Saturday, then Sunday we went to a Christmas tree farm and cut down our tree, picked up Aunt Mego and Uncle Mikey from the airport and then headed to the Orange Festival! Mego and Mikey played alot of wii while they were here. We had a great visit. And some of the best moments of the weekend....BAMA beats Florida...SEC Champions!!!!!! And then in an heart stopper of a game...SAINTS go 12 and 0!!!!!! They couldn't have given Ben a better present!

Ben goes back to clinic tomorrow and hopefully his counts will be good enough to up the chemo. We go back to MD Anderson next week for another MRI and visit with the doctors and discuss more radiation. We are so blessed to have had this Birthday with Ben. They said he wouldn't make it to 6 - but he has and he is really fighting hard. This week the DIPG community has lost three more amazing kids each considered long time battlers. Laney - or sweet friend Delaney also being treated at MD Anderson, we were so lucky to get to see Laney each time we visited MD Anderson she battled for 14 months. Andrew - an amazing boy in Michigan who battled for over two years, we never had the pleasure of meeting Andrew but his mother has been a big support to us through our journey. And Claire who battled for almost three years I believe. I only know Claire through her web page but each of these kids is so amazing and the world is truly a darker place without them in it. Please say an extra prayer of strength for there families this week, I'm sure they will need it.

Love and Prayers to All!

Erin

PARTY !!!! PARTY!!!! PARTY!!!!

2009-12-04T18:05:00.003-06:00

Hello All

Ben has had a great Birthday so far!!!! Lots of singing, cards, and presents at school today!! Everyone loved the cookie cake especially Ben! Big thank you to the de Gracia family for dinner tonight---Pizza--- Ben's favorite and a great SAINTS B-day cake, ballons, and even a present what wonderful families we have at St Andrew's!!!

Now tomorrows PARTY!!!!! God and I had a talk he assures me it will be bright, sunny and 85 degrees! Okay maybe not 85 degrees but hopefully we will have good weather!

DIRECTIONS TO CHEVRON PARK!!!!!!

Head down Belle Chasse Highway, past the Naval Air Station, the Chevron Plant will be on your left, the PARK IS 1/2 MILE PAST THE PLANT ENTRANCE ON THE WEST SIDE!!! We will try to have balloons or a marker of some sort out on Belle Chasse Highway so you can't miss it!

If you get lost call me!! 504-259-9351

See you tomorrow!

Love you all!
Erin

HAPPY BIRTHDAY BEN!!!

2009-12-03T16:32:00.003-06:00

Hello All!

Well tomorrow is Ben's 6th Birthday!!!!!!! Happy Birthday Ben! The birthday they told us he probably wouldn't see. Ben is doing really well on this new treatment. Walking better everyday, down to .25mg steroids once per day, so the weight is coming off and he is feeling and moving so much better! His counts were low last week but rebounded quickly with a blood transfusion and a week off the chemo. He has a couple of soars as a result of the steroid thin skin / weight gain combo - but we caught them early and they are healing well. He is back on 1/2 chemo this week and hopefully we are back on track. Next MRI scans are scheduled for the 16th - man that month went quickly. But we are excited to see how things are going and to meet with the radiation team to discuss another round of radiation after the first of the year. So enough about the medical junk, on to the good stuff.....

Ben's Birthday!!!!!! Yes Ben has to go to school tomorrow on his birthday!! We are having cookie cake with his class, so any teachers reading this stop by the lounge I ordered the really big one so there would be left overs!!! Ben's party is Saturday, planned by a group of wonderful friends, a huge help to mommy!!! Its this Saturday at Chevron Park in Belle Chasse at noon! Hopefully invites made it out to everyone, I was a little late getting invites out so I drove them to all the kids in his classes house so they would have them...I hope I hit all the right houses! Any St Andrew's Families or Brighter Horizon's Families that didn't get an invite and want to come PLEASE COME...like I said Chevron Park - NOON - Saturday!!!

And then after the party Alabama is going to CRUSH the Gators!!!! So Ben should have a great day!

HAPPY BIRTHDAY MY SWEET BOY!!!!!!!!

Little Bump in the Road

2009-11-24T18:53:00.003-06:00

Ben went for his weekly appointment today, his counts were very low so we are holding on the chemo until his counts rebound. He got a blood transfusion and a chest x-ray to rule out pneumonia because his breathing a little wheezy.

He had been having a great week and then last night he didn't want to eat dinner and this morning he was very tired and not hungry again. So I knew something was up. After his transfusion he now has a lot more energy and I'm sure his counts will rebound quickly! But in the mean time no sick people allowed!!! So if you or anyone in your family has been sick please stay away! We love you but not your germs!!

Happy Thanksgiving

Erin

GREAT NEWS!!!!!!

2009-11-19T16:55:00.003-06:00

Hey Everyone!

Well we had a quick trip to MD Anderson! We were expecting to have a stable MRI as Ben has improved so much over the last month, but we were not prepared for what the medical team told us. BEN'S TUMOR SHRANK! Yes that is right it SHRUNK! One year past diagnosis and with two episodes of tumor regrowth no one expects the tumor to shrink. We were hoping for stability and we got shrinkage - we are beyond excited. Now this doesn't mean we are out of the woods by any means but its definitely a step in the right direction!!

Now we are focusing on Thanksgiving! We have A LOT to be thankful for this year!!! And of course the Big Birthday is coming up! That's right the big 6! A very large celebration is in the works - with the help of a WONDERFUL group of parents and friends! I am so grateful for the help, I was getting a little stressed out wondering how I would get it all together! I love you guys!

So keep those prayers coming they are working!!!

Much love

The Sarrat Family!

2009-11-12T17:22:00.003-06:00

Hey everyone,

Just wanted to give you all an update on what is going on here....

Ben is improving everyday. His walking is much better than 3 weeks ago, his eye is starting to move again, and he is very talkative again. We are weaning him off his steroids and are hopeful that he will start loosing some of the 30 lbs he has gained in the last 3 months - that will really make him feel better! We head to MD Anderson next week for an MRI on Wednesday, we aren't real nervous about this one, he seems to be improving clinically and thats what we really care about - as far as we are concerned the tumor can stay there forever as long as clinically he is "normal"!

We would like you all to keep another little boy from here in New Orleans (well really Belle Chase) Michael in your prayers. He was diagnosed two weeks ago with DIPG just like Ben. He has gone to St Jude for treatment, but I have spoken with his mom and I hope she knows we are here for her anytime. So everyone please keep Michael in your prayers as his journey has just begun!

Just in case you all haven't realised it today is the ONE YEAR ANNIVERSARY of Ben's diagnosis! One year ago today our world was turned upside down with the news that Ben had DIPG (inoperable cancer in the brain stem) and that they estimated he had 6 - 8 months to live. So one year latter Ben is doing good. We have had a few rough days especially over the last few months, but all in all we have been truly blessed with how well Ben has done. He is doing great at school and we have more fun than I thought was possible! He is one tough little kid!

Please remember all our DIPG kids and all cancer kids. These are some of the most amazing people I have ever met and had to over come more in their short lives than anyone should have to.

Much love and we will let you all know how the MRI goes.

Erin & Family

Field Day & Halloween!

2009-11-01T15:37:00.009-06:00

Field Day at St. Andrew's - Kindergarten Team White took the title for tug - of-war!!!!

Ben and his teachers at his Halloween Party!

Race car driver Shaun and the princess ladies enjoying a little swinging time!

Ben arrested his principle! Not smart, he's lucky I already got his report card!

Ben taking his turn at the pinata that wouldn't die!

It was a great week here. Ben spent the week at school and did great, he didn't even need his walker this week. The chemo seems to be going well. His counts were good this week, he is only experiencing mild side effects, we aren't sure its working yet but he is definitly not getting worse! His balance seems better and he's talking more again. We went up on his Depakote this week (per study guidelines), and we reduced his steroids YEAH!!!!!! Its been four days since the steroid reduction and still looks good, so I am hopeful maybe this week we can end steroids! Getting off the steroids and maybe loosing some of his weight would definitly make him feel better.

Thursday was feild day at St Andrew's all the grades are broken up into three teams (red, white, and blue) and they compete in lots of relay races and games. Ben was on team White! He was very excited for his event ....Tug - Of - War!! Ben's team won both of their matches! And Team White K - 2 won their division! But unfortunately Team White overall (whole school) ended up coming in second! But Team White Kindergarten did AWESOME and they had fun and that is what really matters! I also got Ben's report card on Thursday, he did great!

Friday he got to spend at Brighter Horizons with his Ms Jessica because there was no school. And Saturday was his BIG Halloween party that he has been planning now for weeks! There were tons of people here! It may be our biggest party yet! Lots of kids and lots of cute costumes! They all had a great time! Then Ben, Shaun and their cousins went trick or treating! Ben was pretty exhausted by then so he was driven trick or treating in his power wheels Jeep by his wonderful cousin Brooke they had a great time driving from house to house. Then she would run up to each house with both buckets and he would yell trick or treat from the sidewalk - she was such a sweety for helping him out and they had a great time! So now that Halloween is over Ben has his sights set on planning his Birthday Party! I'm not exactly sure how we are going to top last year but we will try! And of course Ben and his Dad have already started getting Christmas decorations ordered ......anyone seen National Lampoon's Christmas Vacation (I think that is their ideal decor!)!!

So thanks for all who helped us make Halloween lots of fun for our little fighter! While Ben is looking forward to Christmas, I am looking forward to Thanksgiving, we have a lot to be Thankful for this year!

Love to all

The Sarrat Family

Our New Plan!!

2009-10-21T16:03:00.003-05:00

So we returned from Houston yesterday afternoon with a plan! We really had a good quick trip to MD Anderson. The hospital is amazing, its huge but extremely efficient and every employee we ran into was polite, caring, and went out of their way to assist you in whatever you were asking about. Ben's new oncologist Dr Wolff was great he spent over 2 hours with us, going over Ben's case, examining Ben, and then laying out our options. Ben will start a new chemo Etoposide and Valpuric Acid as part of a Phase I trial. Ben will take oral chemo at home everynight. Go once per week to clinic here in New Orleans for blood draw and exam, and then fly to Houston once per month for an exam and MRI. We are hopeful this will stabilize the tumor and hopefully we will be able to get Ben off steroids in the next few weeks. Ben will start the new chemo tonight!

Big Thank You to GiGi and Poppy (our grandparent in-laws!) in Houston for letting us stay with them and taking such good care of us!

Ben had a great day at school today. And is excited for Friday's pumpkin field trip!

More news to come on hows Ben's new chemo is going.
Love Always
Erin

ANNOUNCEMENTS!!!!

2009-10-16T12:59:00.003-05:00

Hey Everyone couple of announcements.....

MOVIE NIGHT LOCATION CHANGE!!!!

PAC is flooded so movie night will be at St Andrew's on the Black Top!

See You TONIGHT ---GOONIES 8pm ST ANDREWS!!!!!!!

NOW for the BIG NEWS>>>>>>

We will be headed to MD Anderson for treatment. Not sure of appointment day so we will drive out this weekend and be available starting Monday for ANYTIME!!! Big thank you to all those who helped twist a few arms to get us in. Names are being withheld so no one gets prosecuted for the arm twisting, breaking, threats you know standard intimidation tactics!!!

Much love

Erin

MOVIE NIGHT!!!!

2009-10-13T21:04:00.003-05:00

Hey Everyone

Wanted to let you all know St Andrew's has arranged a fund raiser movie night this Friday October 16th! Open to any an all in the mood for a movie about Pirates, Treasure and goofy kids...no its not my home movies. Its.......

An outdoor showing of GOONIES!!!!! At the PAC Fields (9201 Patterson Rd)

Show time is 8pm gates open 45 minutes prior. $10 per car, bring a blanket or chairs. Concessions Available.

We will be there if we are still in town (I think we will be).

Thanks Everyone!

Still waiting!!!!

2009-10-12T13:35:00.004-05:00

Okay so I know I was saying we would have a plan by today but guess what not yet!! Its okay though we can't start anything until next week all the plans we are looking at requires 4 weeks off Avastin and for us thats next Wed - I think I thought September had more Wednesdays than it did - oh well.

So we have to say a BIG thank you to friends and family who have been helping us explore all possible treatment option for Ben! Originally we were told the study we were interested in in TX was closed but after a few phone calls from a very loving family member it looks like now we may be able to go there!!! In the mean time another group of wonderful friends in Cincinnati from The Cure Starts Now helped get us in touch with a researcher there who may have 2 good options for Ben! And to top it all off my company (Audubon Nature Institute ) has the most amazing health insurance - both of these hospitals are considered "In Network!!!!!!!!" so if we have to go to either place off study most of our medical bills should be covered!!!!

In addition we are interested in a study at NIH in DC we are hopefully getting on the waiting list but that wont be available till Nov. But everything is still up in the air!

So we wait and hopefully should hear from all these places before the end of the week.

On another note we need to Thank the St Andrews families that have been providing us with meals for the last week! They are delicious and you have no idea how helpful it is while I am constantly on the phone or the computer hunting down options for Ben! And to all the families at St Andrews who have been so supportive THANK YOU! We have been so blessed to have so many people in our corner for this journey. Brighter Horizon's families have been there since Day 1 with anything and everything, Sacred Heart and Stuart Hall families who did the first round of dinners back at the time of diagnosis, friends and family from all over the country with encouragement and prayers, and of course my DIPG family some whom I have been lucky enough to meet and others who I only know through the computer (AMAZING people with AMAZING children) we can never say THANK YOU enough! We have our work cut out for us to pay it all forward - I have no doubt that we will but Ben and I will have to live to be 100 to make that happen - so we better start taking better care of ourselves!

Ben is doing well, he has double vision more, and walking is becoming more and more difficult, he has been falling a lot and that scares him so he likes to have mom around - which I enjoy too! We may need to think about getting him a wheel chair in the coming days. He is fine around the house and the classroom but anything more than walking out to the car is too much for him. But he is still his happy, crazy loving self and we are so glad for that - he gets frustrated but it only lasts a moment or two.

We will update when we know more!

Lots of love
Erin

No Plan Yet

2009-10-09T15:25:00.003-05:00

Well coming up with another plan has been a little difficult. Ben doesn't qualify for any studies at St Jude, Texas Children's, NIH or MD Anderson! But I did get a lead on a compassionate use study at U of F Gainsville - its the same study at MDA that Ben doesn't qualify for at Uof F he would get the treatment of study and we can start as soon as Wednesday hopefully. We are still waiting on a few more hospitals....Duke, Cincinnati Children's and Boston.

So no travel plans yet! Hopefully iron something out htis weekend!

Erin

Update

2009-10-07T17:42:00.003-05:00

So I know many of you are waiting on MRI results. Well they are not good. The tumor has grown since the last scan in early August. So we didn't do chemo today, no point since its not working and we have to be off chemo for a few weeks before we can start something new. So tonight we wait for a call from Ben's oncologist to find out what is next. Basically our only options are Phase I clinical trails so we wait to find out which one we are qualified for and if we are excepted. Right now it looks like Baylor (Texas Children's) or St Jude. We will update when we have a plan. Thank you for your continued prayers. Please no calls tonight, texts are fine but we are just tired of repeating ourselves today so we aren't really up for chatting.

Love and Prayers
Erin

Go Saints Go

2009-10-06T07:11:00.015-05:00

What a great weekend! Thursday afternoon we were contacted by Ben's school, they said he had been chosen as WWL Channel 4's quite hero. They came to film him (and us) on Friday at school. Hopefully we were able to share how courageous Ben has been through this fight - and how desperately underfunded pediatric cancer research is. We will find out tonight - the story airs tonight (Tuesday) on the 5pm news on WWL. Friday afternoon Big Ben got a call from the Saints inviting Lil'Ben and all of us to practice on Saturday. Friday was also the first of several Saints Day fundraisers at St Andrew's - every home game the kids can wear a Saints shirt if they donate a dollar to Pediatric Brain Cancer Research - specifically DIPG. This Friday they raised over $1600 !

Saturday morning we woke up to find Grandma and Grandpa had arrived late the night before! They were flown in by some very special parents from St Andrew's so they could come to the Saints game on Sunday and see Ben be the Junior Captain. That was a great surprise, Aunt Mego was in town also, she had arrived Thursday evening to spend the weekend with us. She sure picked the right weekend to visit! We got to Saint's practice at 10am and was there till nearly noon. We got a tour of everything. The press conference room, all the offices, the weight room, and got to play on the outdoor practice field and tackled the tackling dummies and everything. Then we got to go inside to watch practice. It was very cool! After practice Coach Sean Patyon introduced Ben and Shaun to the team, they signed a couple of footballs for the boys and Ben got a hat signed. He meet Roman Harper (who graduated from Alabama!) and gave him a big "Roll Tide" which many of the other players did not like! He joked around with Reggie Bush and told Drew Brees that his principle Mrs Hernandez said he needed a haircut! The other players really enjoyed that - they like it when people pick on the famous quarterback! Then Ben decided to give a few tips to the Saint's Defense and tackled #72 Rod Coleman, all 6 foot 2 , 285 lbs of him! He got to meet owners Tom and Rita Benson, and picked a few plays for Coach Payton! Then the boys got to tour the locker room but they made the girls stay outside! We tried to get Lil'Ben to take the video camera in but he said no way! What a great afternoon. Those guys were so great, all of them. We headed home for some much needed rest and then that evening headed out to the Leukemia Society Light the Night Walk to support many of our very special friends we have made at clinic, Kale, Anna, Christopher, ^Timmy^, ^Carl^ and so many more. It was a great turnout - it was nice to see so much of the oncology medical and nursing staff out there!

Sunday afternoon there was a knock at the door, Ben answered it to find that a limo had arrived to take us all to the Saint's game - another surprise set up by St Andrew's. Ben LOVES limo rides. And it was raining so it was nice to get door to door service and not have to walk from a parking garage in the rain! Ben and Lil'Ben went straight down on to the field to watch warm-ups and see Lil'Ben's friend Cameron. Cameron's dad Shaun works for the Saint's so Cameron was able to get field passes - I think Lil'Ben was just as excited about seeing Cameron as he was seeing the Saints on the field! The team was sooooo great they all came up and greeted Lil'Ben. Tom Benson came and told Ben they were going to win the game for him, which they did! Coach Payton stopped and told Ben they were running one of the plays he picked as the first play of the game. #44 Heath Evans was fabulous he came and took a knee by Ben so they could chat before the game, Drew Brees walked him out onto the field for the coin toss, and someone must have paid off the video guys because I don't think the camera even showed any players on the Jumbotron during the coin toss - just Ben! Ben got to hang out on the bench for a little while and then mid first quarter he came up to our seats and fell asleep till the third quarter! Being a star makes you really tired!!! It was a great game and the SAINT WON!!!!

Grandma, Grandpa and Mego had to leave Monday morning and Ben did a full day at school, he told his class all about his great weekend! So today we have Ben's MRI. Its a big one. We are doing the MRI about 3 weeks early. Ben's oncologist is concerned that the current chemo isn't working as Ben is continuing to have symptoms. So before we do another dose (Wednesday) we will have an MRI to check for progression. If we find the tumors have grown we will skip Wednesdays chemo so we can start something different next week. This will probably need to be at another facility (St Jude or Texas Children's possibly). So our BIG SAINTS WEEKEND was a great distraction from what we have to face this week. We can never thank St Andrew's and the Saint's enough for this great weekend! What wonderful memories we will always have. Also BIG Thank you to the St Andrew's families that have started providing meals for our family. It makes my life so much easier not having to plan and prepare meals - the boys and I get to spend more time playing in the yard and swimming which is what they love to do after school!

So Big Ben, Mommy and Lil'Ben are all fasting this morning, Lil'Ben's MRI is at 1pm so no food or drink after 7am! Lil'Ben always does much better at this than Mom does my tummy is already growling!!! We are off to Children's at 10am. We will try and post tonight to let you all know how the MRI goes.

Hope you like the Saints pics!!!

Much Love
The Sarrat Family

Great Weekend with our DIPG family!

2009-09-17T10:45:00.006-05:00

Hello All

Sorry its been a while since we updated. We've been busy having fun as always. This past weekend Ben and I were lucky enough to get to travel to Scranton PA to attend the Aimee Dickey Childhood Cancer Awareness Walk. Aimee died this past December of a DIPG, same as what Ben has. The walk was amazing but even more amazing was we got the opportunity to meet so many DIPG families, I have communicated with them all through email and websites for months now, and have followed the stories of there children, but to meet face to face and laugh and cry together was a great experience for me and Lil'Ben. He has been asking for quite a while to meet another kid who has the same type of cancer as him. We know a couple other brain tumor cases at Children's here in New Orleans but there tumors were operable and thats quite a different thing. Most of our cancer friends have Leukemia or bone cancer, and we truly love these families and gain a ton of support from them. But when your the only DIPG (that we know of) in Louisiana its kind of lonely in a sense.

So Friday night Ben and I headed to Scranton. Due to bad weather we were stranded in Detroit for the night and didn't make it to Scranton till the next morning. But that was the only set back all weekend! We met up with the families at a BBQ that afternoon and Ben got to meet Alexis a fellow DIPG warrior 3 years old and cute as can be! She was diagnosed a few months before Ben and is doing really great! We are so happy for her. Ben was a little tired and grumpy from the unexpected morning traveling we had to do so we went back to the hotel and got a good nap in to get us ready for the big event on Sunday. Saturday night Ben's cousins from Maryland drove down, up , over whatever direction it takes to get to PA from Maryland! So we met up for dinner at Ben's all time favorite restaurant Applebees! He was so excited to see them he has been talking about wanting to see Andy for weeks. Andy is 5 and just a few months younger than Ben. He gets to see most of his cousins all the time because they all live in New Orleans, but only gets to see Andy, Lauren and baby Abby once or twice a year so this was a big bonus for us.

It was a little cloudy and rainy on Saturday so we were concerned about the weather for Sunday, but our DIPG angels definitely came through for us because Sunday morning was clear blue skies and not a rain cloud to be seen. We went to breakfast with the cousins again and then headed over to the walk. We had a great time there were bounce houses, and a National Guard vehicle to climb around and go for rides in, food, face painting, balloon animals, and of course the fabulous Dari!! Dari is an amazing photographer that has adopted the DIPG community and all its kids. She took some great shots of Ben and I but most of all she is a great person who loves giving and stealing sugar! Everyone fell in love with Ben, really how can you not! There were beautiful speeches by Ms Annette (Aimee's mom) and other DIPG parents and supporters, and then it was time for the walk to start. Ben, Alexis, Jacob (another DIPG warrior we met on Sunday) and sweet Lizzie's parents cut the ribbon to start the walk. The hardest part was getting Ben to actually wait for Ms Annette to tell him it was time to cut! After the official walk part of the walk there were craft tables set up, and music and lots of people just having fun. Ben colored about 35 wooden Christmas Ornaments at the craft table - yes I think that was the record!! After a very long day we headed back to the hotel for swimming and then dinner out with the DIPG families. What an amazing day!!! The next morning we headed to the airport only to find Ben's cute little face on the front page of the Scranton Newspaper, so we bought all the papers available at the airport! Here is the link for those of you who don't get the Scranton Times-Tribune! Hundreds work to raise childhood cancer awareness
Source: http://www.scrantontimes.com/ needless to say we spent the rest of the day trying to avoid the Paparazzi!!

To all my DIPG family I can't tell you what this weekend meant to us! Ben made alot of great new friends, Nikki, Mathew, Alexis, Jacob, KK, Emma, Jordan, Angel Autumn's brothers...so many more I'm having trouble remembering all the names!! And I got to connect with the people that have been so wonderful for support, education, and understanding for me over these last nine months!

So how is Ben doing your wondering....well he is doing good. He has gained a lot of weight as a result of the steroids that are a necessary evil to keep the swelling in his brain down due to the new tumor growth. The extra weight makes it difficult for him to move around and he has some mood swings, but those aren't to bad this time around. We have tried to wean him off the steroids as fast as possible to try and keep these very annoying side effects to a minimum. But its taking longer than I would like. He is on 2mg right now, we tried for 1 mg last week but he began having trouble walking and falling alot so we had to take him back up to 2mg. We will try 1mg again next week! Ben is going to school still and doing well. This week we have decided full days are just to difficult on his body he needs more rest than the 45 minute nap they have at school so I have started picking him up at 1:30pm and his misses the last 90 minutes of school (45 of which is there normal nap time anyway) this allows him to have a 3 hour nap and then have a fun late afternoon playing and swimming with Shaun and his friends. With the 45 minute nap he was falling asleep at 5:30 pm and then waking up at 4am so hopefully this change will be a much healthier schedule. Ben's new school has been really great about accommodating his schedule and his needs. Ben has Chemo again on Wednesday its a full 8 hour day hooked up to IV's but luckily this week our friend Kale has Chemo too, so there will be good friends to pass the time with! We are not sure when our next MRI is, I'm not looking forward to it so I figured no use worrying about the date yet!

Okay football fans - Ben will be the captain at the Saints Game on OCTOBER 4, 2009! So watch out cause he has got some plays ready there is no way the Saints are going to loose on the 4th!! We'll keep you posted with details on that!

Okay I can't get pictures to post for some reason today! Pictures coming soon.

Much Love

The Sarrat Family!

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!

2009-08-31T22:49:00.004-05:00

Check out the cute little face second row seventh one in!

Hello All

Ben wants to remind you all the September is Childhood Cancer Awareness Month. Less than 3.5% of Federal money approved for Cancer research is spent on all childhood cancers combined!! Some cancers like Ben's have had no significant developments in treatment in the last 30 years, with a cure rate of less than 10 % - That is unacceptable!!! Speak Up! Let your state representatives know that more money and more resources need to be allocated to CURE CHILDHOOD CANCER! Let the drug companies know we expect more out of them...how much R&D money was spent on "the little blue pill"??? Lets get our priorities straight people!

Visit TEAM UNITE by clicking on the picture of Ben with his favorite pirate Captain Jack in the top left corner of this page. Team Unite is a collection of families working together to spread awareness and fight childhood cancer!!!

Love to all

The Sarrat Family

First week of Kindergarten COMPLETE!!!

2009-08-29T08:18:00.003-05:00

Hello All -

Ben wanted to let you all know that he finished his first week of Kindergarten. He had a great time and got a smiley face everyday on his behavior card! Everyone at his school is wonderful and taking great care of him. So mommy is going to go to work on Monday and see how he does - considering he didn't need her all week he probably won't even notice mom's not there.

Ben had his buddy Patrick over for a play date Friday night, swimming pizza and a movie, lots of fun! Today he is going to spend the day with his Grammy and Pops and Shaun because Dad has to work and Mom is going to have lunch with her cancer mom friends - much needed!

Ben still says recess is his favorite part of school! He gets to play with his best bud Jackson who is in his grade but not in his class - which is probably good because those two chatty kathy's would get themselves in all kinds of trouble.

Mom is excited to go back to work - nice change from all the filing, they were really pushing my alphabet skills, talk about pressure!!!! But she will miss all the teachers and office ladies who have been so wonderful all week! Its so nice to know how much they really care about Ben, it makes it much easier to leave him there!

Grandma comes to visit tomorrow! The boys are very excited they have already planned dinner at Applebees and several trips to the dollar store!

We have to get going on our fun filled weekend. Hope you all have a great few days. Ben will be getting chemo again on Wednesday so he will miss school all day - he is not happy about that. We are hopeful he handles it as well as he did last time so he can go to school on Thursday.

Please keep our dear friend Lizzie (forever 3) and her family in your prayers, Lizzie had the same diagnosis as Ben. She earned her angel wings early yesterday morning. It was unexpected as Lizzie had been doing really well. Although we had never met we have been in contact with her family alot and were looking forward to meeting them at the Angel Aimee's DIPG walk in Scranton, PA in September. Please remember to cherish every moment with your kids, things can change so fast. WE LOVE YOU ANGEL LIZZIE!!!!!

Have a great weekend! Love to all

The Sarrat Family

1st Day of Kindergarten

2009-08-24T17:03:00.007-05:00

Hello All!!

Well today was my first day of Kindergarten! It was a blast. My teacher's name is Mrs. Williams and she is lots of fun. I had PE today and the coach and I played soccer the whole time - it was awesome. My favorite things today were recess, reading stories, and PE. We only had a half day today, so after we got done with school Mom took me to lunch at Applebees and Daddy met us there. Mom had a good day too, she is at school with me everyday in case I need something and to give me my medicine. So my mom got to work on her alphabet today...lots of filing!! The teachers seemed really happy to have a full time volunteer.

I am very excited for school tomorrow. Mom's going to leave at noon and see if I do good on my own in the afternoon - my Ms Jessica is going to pick me up and I am VERY excited about that!

Love the big Kindergartner Pirate

Ben

Home !

2009-08-19T16:19:00.003-05:00

We got home yesterday afternoon. Ben's doing good , just tired. Ben do another round of chemo two weeks from today. So far so good we are still planning on starting Kindergarten on Monday. The good thing about the chemo is it seems to have slowed down the feeding frenzy! They did increase his steroids to 3 times per day so not sure how long we can hold off the feeding frenzy!!!

Ben has been having a great time with Grandpa who is in town for the week and they are planning quite a day tomorrow. Mom is going to try and work a little for the next two days since he seems to be doing great and has his grandpa to hang out with.

We will keep you posted as to how Kindergarten goes!!!!

Erin

Good Day

2009-08-17T19:14:00.003-05:00

Hey Everyone

Well overall it was a good day. Ben had his port accessed for the first time and it went great no tears, no pain. Yeah 4W nurses!!!! Ben did great with the first chemo, took a 4 hour break running fluids and then started the second chemo, second went well then the last ten minutes he got a little sick, sweaty tummy ache your basic feeling ickey! Luckily the cousins arrived and lifted his spirits. So all in all Ben did great today, he is very tired and still feeling ickey but it looks like we may be able to go home tomorrow afternoon if he has a good night.

We will keep you posted.

Erin

Starting New Chemo Tomorrow!

2009-08-16T19:58:00.003-05:00

Hey Everyone,

Well we have decide on a new treatment plan for Ben to fight the growing tumors. He has done really well since we started on the steroids after learning of progression, gaining weight quickly but also no symptoms right now! So hopefully after this first dose of new chemo we can back down on the steroids before he completely eats us out of house and home. Tomorrow morning Ben and I check into Children's Hospital. They will access his new port - so that means no IVs in the arm YEAH! He will get his first new chemo and then some fluids, then 6 hours later they will give him his second new chemo this one originally was supposed to be split into 5 doses and be administered over the course of a week while admitted. Recently the protocol has been modified for brain tumor cases and they give the entire dose at once. If Ben tolerates it well we will probably be able to go home Tuesday night or Wednesday morning. So please pray for Ben through out the day tomorrow that his little body can handle all the meds we are going to throw at it!

While we get admitted tomorrow daddy is going to St Andrew's for Kindergarten orientation!!! Ben is very excited about starting Kindergarten next Monday. We are hopeful he will handle the switch to the new school along with this new chemo regiment. Ben will be going for chemo infusions every other week - so he will be missing a little school pretty routinely. But as smart as Ben is there are no worries that he will fall behind. Besides he's trying to talk Dr Velez into doing his chemo at school so he doesn't miss it - I'm pretty sure he's not winning this one, he usually gets Dr Velez to do what he wants but this one probably not going to happen!

We will try to post tomorrow to let you all know how he is doing.

Erin

GET YOUR GOLD ON !

2009-08-12T15:14:00.003-05:00

Hey Everyone-

I bet you all know what the color pink represents...Breast Cancer awareness. But I bet you didn't know what gold represents...Childhood Cancer Awareness. September is Childhood Cancer Awareness Month, so get your gold on. More funding is needed to fight all types of childhood cancer. Show your support for the kids.

VISIT WWW.TEAMUNITE.NET FOR THE LATEST STRATEGY AND REMEMBER.....September is Childhood Cancer Awareness Month!

Ben's Team Unite Team Name is "Ben's Pirate Crew" !!!

GET YOUR GOLD ON!!! FYI Team unite has designed special shirts for this purpose...and guess what - Ben's cute little face is on the back of it! He is in Group 1. So if you order a shirt and you want our little pirates face on the back of it be sure to order group 1 !!

Ben is doing real well - we check in to Children's Hospital Monday to start the new chemo - we will be there for a week and I'm sure he'd love visitors!!!

Erin

Ben's doing great

2009-08-08T08:32:00.003-05:00

Hello All

Ben had his port placement surgery yesterday around 5pm. He did really well and the doctors listened and didn't give him versed so he woke up great. Nice and quick with no balance issues! We were released last night and got home at around 10pm. He woke up this morning demanding pancakes and friends over to play - so he seems to be doing great. He is in a little pain at the surgery site but doesn't seem to be bothering him to much.

Have a great weekend!

Erin

Partial Plan

2009-08-06T13:07:00.003-05:00

Hello All

Well we met with Dr Velez yesterday and we now have the beginnings of a plan. Ben will be going in for surgery tomorrow (Friday) afternoon to have a port inserted. For those of you who don't know the port is a semi-permanent "button" inserted into a vessel in his chest. It will give the doctors and nurses access to give Ben medications and Chemo with out an IV that would have to be changed out every few days. The port gets "accessed" when they need to give him stuff and can stay accessed for extended periods of time while an IV has about a 3 day max. When no accessed its basically just a bump or button under his skin. They will also be able to draw blood from it, so basically it means much fewer needle sticks for Ben and a nice stable access point for med delivery. (Hope I explained that well enough!)

Dr Velez will be consulting with colleagues including Dr Warren at NIH who is recognized as the leading expert in this type of cancer, she has Ben in loop (via phone) on Ben's care though out. They will go over all available protocols that Ben may be eligible for and we will then discuss there recommendations next week. But regardless of which we choose Ben will need the port so we have decided to get started on that.

It should be a short hospital stay maybe just one night, for port placement. So say a few extra prayers for Ben tomorrow afternoon that the procedure goes well and there isn't much pain.

As always thank you for all the support.

Erin

MRI results

2009-08-04T17:59:00.003-05:00

Okay so we got some bad news today. Ben's tumor has gotten larger and a second tumor has developed. The second tumor is also inoperable. Thats about all the information I have right now. Big Ben and I are meeting with the oncologist tomorrow to come up with a game plan. We are home now. Please don't take it personal if we can't take phone calls or call you back for the next few days we have lots to do. We will keep the blog updated to keep you in the loop. Thank you for all your kinds words and prayers, keep them coming!!

Love always
The Sarrats

Quick Update

2009-08-03T09:22:00.003-05:00

Hey All

I don't wan tto alarm anyone, but I do want to let you know that Ben is being admitted to Children's this afternoon for an early MRI. Ben is scheduled for his MRI next Wednesday the 12th but recently we have been seeing mild symptoms we can't ignore and if his tumor is growing we need to know as soon as possible so we can get in front of it. There are other things that can cause his symptoms..hopefully its tumor death, causing some mild swelling. Please don't worry, just say a few extra prayers today and tomorrow!

Will update when I know more.

Erin

Back from the Beach!

2009-07-27T12:08:00.003-05:00

Hello All

We arrived back home late Saturday night from San Diego. Southwest lost our luggage, so at least I didn't have to start the laundry yet! It was returned late Sunday so no more excuses Monday night will be laundry night.

We had a great time in San Diego, my parents got a house Bayfront, so the boys could run in and out to the sand and water all day long. They loved building sand mountains (almost as much as there dad loved it!). And we spent two fun days at lego land. All in all we didn't do to much, just hung out on the beach and relaxed - well as much as you can relax with Shaun around. The weather was beautiful and we had a great time. Big Ben got to go Tuna fishing and had a blast. I'll post pictures probably tonight or tomorrow, but I wanted to get in a quick update to let you all know we were back and that we had a blast!

Ben has been very moody and a little lethargic since we returned but I am hopeful he is just tired from the fun week. His MRI is scheduled for August 12th but I called his oncologist to see if she wants to move it up, we will see.

Special thanks to our neighbor Mr Tom who mowed our lawn while we were gone - Ben was not looking forward to coming home and battling the jungle that should have been there! So thanks Tom we love you guys!

On another note two more very special DIPG kids earned there wings this week, Brianna Sharp (Illinois) & Caleb Spadey (Oklahoma). Please pray for there families during this very difficult time.

Love to all
Erin

HAPPY BIRTHDAY SHAUN!!!!

2009-07-14T16:00:00.003-05:00

Well today is Shaun's third birthday. He had a GREAT party on Sunday with lots of his and Ben's friends from school, his cousins, and kids from the neighborhood. The kids had a great time in the pool and on the largest water slide I have ever seen! It was almost as tall as our two story house. And of course the adults had a great time too, eating some delicious crabs that Big Ben boiled, and going down the giant water slide of course! Ben's cousin Blake and his family came down from Memphis for the weekend and it was great to see them and have them at the party.

Saturday Ben had his T-ball party and he can't wait for next season, Ms Jessica said she would coach again...YEAH!!!!! We have a busy week this week preparing to leave for San Diego. And Ben has clinic tomorrow. Probably a long one, because he has to do his pentanamine treatment, have blood drawn for counts, and see the doctor, plus we have his appointment with the eye doctor he has been seeing since diagnosis that is monitoring the turn of his eye that was causing his double vision at the very beginning. But his eye looks good so I am not worried.

I try to keep Ben's blog as positive as possible I think its important for us to maintain a health and happy attitude and try not to dwell on the bad things, but the reality is Ben has brain cancer and alot of other kids do too! The DPIG community (Ben's diagnosis) has had a very difficult couple weeks loosing 9 kids in the last three weeks. And there are others who are in desperate need of your prayers, especially our dear friend Luke we have been following his journey since the beginning, he was diagnosed in January (two months after Ben). He is in the hospital and having alot of pain. Please keep this family in your prayers we really need a miracle for Luke right now. If you want to check in on Luke this is his site http://www.caringbridge.org/visit/lukepollok . All our kids need your prayers but Luke needs a few more today.

We are so lucky that Ben has responded to treatment as well as he has. He has had little to no side effects and his life is pretty much that of a normal 5 year old except for all the doctors appointments, taking pills, being a little less coordinated than he would like, and a little more tired than most kids (yet he still has MUCH more energy than his mom!). So thank you for all your prayers, Ben is doing so well and we are excited for that to continue. Like I said last time his next MRI is August 12th and he will be starting Kindergarten shortly after that. I'm still a little nervous about Ben starting a new school, I don't think I have to tell you all how much we all love Brighter Horizons and how nice it is to be able to go to work and KNOW that he is being watched and loved there as much as he is at home.

We probably won't post before we leave, and not sure if I'll post in San Diego or not, might not take the laptop - oh who am I kidding I can't be away from facebook for a week!

Love always
Erin and the family!

Fishing Trip Pictures

2009-07-05T08:56:00.009-05:00

He's such a cute little Fisherman!

Too Cute!

Of course he got to drive the boat even though he couldn't see over the console! Thank God for auto pilot!

Tell me this little boy didn't have an AWESOME time!

So as you can see from the pictures Ben and his dad had a GREAT time on there special Father/ Son fishing trip made possible by The Way Outfitters. We want to say a special Thank You to the Panhandle Chapter of The Way Outfitters and especially Pat Anderson who arranged Ben's entire trip and was there everyday for lots of FUN!!! Also thank you to Hook'em Up Charters Capt. BJ Burkett and fishJambo.com Offshore Charters Capt. Mike Falzone both out of Panama City Florida. And to all the other friends and chapter members who made the boys trip so amazing. Some fabulous memories were made that they will have forever.

Ben had a great week at camp again. He is on day 5 of chemo right now so he's a little tired and week, but thats not enough to keep him out of the game! He had a fun sleep over at his cousins house Friday night, after a full day of yard work and swimming with Dad and Shaun. Thanks for the swim date Ms Kim and Mr Tom we had a blast. Grandma came to town yesterday for a week of Camp Brighter Horizons fun! And then we are off to San Diego for more Beach fun and yes BIG pizzas - we just found out Uncle Mikey gets to come too -YEAH!!!

Its been a rough couple weeks for the DIPG community we lost 4 precious kids in about the last two weeks and there are two more having a very difficult time right now. Its difficult for Big Ben and I when we hear of how much these kids are suffering. There is a little guilt because Ben is doing so well, and there is a lot of fear that we may have to face what they have faced. Please keep all our DIPG families in your prayers. Ben's next MRI is scheduled for Aug 12th - right before Kindergarden starts!!

Love to all and I will try harder to update more often.
Erin

FISHING UPDATE II

2009-06-27T19:32:00.003-05:00

Okay so they had another great day on the water, today they went offshore and Lil'Ben caught the biggest red snapper, some king mackerel and other finned friends! I don't think they are going to come home...they are just having too much fun! They have plans for a big cook out tomorrow with all the great captains and crews that have taken them out - they are having fish!

On the home front Shaun ate a rock today - not sure what I'm supposed to do about that I guess just wait for it on the other end! Needless to say Shaun is Shaun! We had a great time at the Circus with the Boyds! Tomorrow more fun but hopefully no more rocks!

Love to all
Erin

FISHING UPDATE

2009-06-26T15:45:00.001-05:00

Okay so Mom is VERY jealous!!! I just heard from the Lil'Ben he is having an awesome time. His dad and he got there yesterday afternoon and have been to the beach and are staying in a beautiful condo. There first fishing expedition was this morning and they called a little while ago to tell me Lil'Ben caught a sailfish - it broke the hook before it made it into the boat but I am hopeful someone got great pictures. Lil'Ben (and Big Ben) are on cloud 9 this is definitely there type of adventure ---THANK YOU The Way Outfitters! They also caught alot of fish that actually made it into the boat!

I'll keep posting as I hear more, they were planning on building sandcastles and going boogie boarding this afternoon! Pictures as soon as I get them - I promise.

Shaun and I are having fun - not quite as much fun but we had dinner and Slurpee's with friends last night and tomorrow we are going to the circus with the Boyd girls (his cousins). Please say a few extra prayers for Ben and Shaun's cousin Caroline, she fell / jumped off the swing set last night and broke her leg! A 1 1/2 year old in a full leg cast during the summer should be lots of fun! So we are going to go check on her tonight and maybe kidnap a sister or two to give her mom and dad a break!

Thats all for now - we'll keep the fishing stories coming!

Love always

Erin

T-Ball Season Closer!

2009-06-20T18:55:00.009-05:00

A few more pictures from Colorado....

Aunt MegO and the boys on the train at the park!

Now thats how to play Connect Four!!

The Last T-Ball Game.....

Ms Jessica showing the kids how to play left field!

GO PIRATES!!!!! We love you Coach Jessica!

Hey everybody -
Today was the last T-ball game (till next season of course). The kids had a blast this year. A big thank you to Ms Jessica & Ms Michelle for being such great teachers and coaches!!! We love you!

Ben had a great week. Camp was fun - he had a super short clinic appointment (45 minutes) it figures the one clinic appointment Dad does instead of Mom and they are out in 45 minutes!!! Ben and Dad are looking forward to next weekend. They are going on an awesome 4 day fishing trip out of Panama City Florida with an organization call The Way Outfitters - its a charitable organization that grants fishing and outdoor wishes for sick kids, and disabled vets - a truly amazing organization, and right up my boys alley they LOVE fishing together. The trip is going to be awesome and the Big boys are super excited. Shaun and Mom will do something fun - not sure what yet, I tried to convince Shaun he would like a spa day but I don't think he went for it - so it will probably be the circus!

We want to wish all the Dads out there a FABULOUS fathers day. My boys are so lucky to have such a great dad that loves doing fun stuff with them, and to also to have two amazing grandfathers that they love more than anything. SO HAPPY FATHERS DAY Daddy, Pops, and Grandpa (papa).

Love Always
The Sarrat Family

Colorado Fun!

2009-06-15T11:36:00.005-05:00

Hanging out at Uncle Mikey's Bike Polo Tournament!! Lots of crazy fun!

Playing washers in Aunt Mego's backyard

Hiking by the Pouder River - yeah no one fell in!

We have had a great trip visiting Aunt Mego and Uncle Mikey. We are leaving this afternoon, but have had a great time. Here are a couple cute pictures, more to come in the next few days. We spent a lot of time outside - the weather was fabulous! We played several games of Giant connect four ( pictures to follow in a few days). We went hiking, and took Elvis dog for lots of walks. We met up with mommy's friend from college and her family. But most of all we just relaxed and had fun with Mego and Mikey! Off to the airport!

Love you all Lil'Ben

Busy having Summer FUN!!!

2009-06-09T18:01:00.004-05:00

Hello All

Sorry I just realised its been two weeks since I have posted! The days are flying by! Ben is having a great summer. He loves camp and T-ball. We have been having fun play dates with friends on the weekends. The boys and I are heading to Colorado to visit Aunt Mego and Uncle Mikey - and play a BIG game of connect four!

Work for Ben and I is busy as always. For those of you who haven't heard a dear friend of ours and local New Orleans Chef, Mat Murphy, Executive Chef at the Ritz Carlton is recovery for a significant illness. It came on quickly and it is truly a miracle Mat is doing as well as he is. I know I won't get all the info right so I will send you to his family's website to find out accurate information on his condition. The reason I mention him aside for a plea for prayers for his continued improvement is to tell you all about a fundraiser for him and his family. Mat is the proud father of Quadruplet girls (18 months old) - yes you read that right quads (thats 4!) and his wife is expecting #5!! Mat has been incredibly supportive of Lil'Ben and our family, he participated in the wine dinner held for Lil'Ben and he made and delivered 200 delicious cupcakes to Ben's fabulous 5th birthday party - yes the Executive Chef of the New Orleans Ritz Carlton delivered cupcakes! This is going to be a great event, Ben and his restaurant will be participating (of course) and I know the food will be fabulous. Info for the fundraiser is available on Mat's website as well! Mat Murphy's web site http://www.murphyquads.com

Ben has clinic tomorrow morning and then will be heading to camp to meet up with his friends. And guess what Shaun is almost potty trained! Yeah Shaun!!! Yeah Ms Melanie!! I'll go now the boys are swimming in the pool and I'm missing all the fun, and we can't have that!

Love ya
Erin

Message from Lil'Ben:

Mr Art I love you and I hope you are feeling better tomorrow!!

Love Lil'Ben

Mom's note - Mr Art is the Brighter Horizon's bus driver and he was sick today, I think he is just a little under the weather - but Ben misses him very much and wanted to leave him a special message today!

GRADUATION!!!!

2009-05-27T14:31:00.009-05:00

Ben's Crazy Class - We love these kiddos!!

Shaun walking in ready to sing his bumble bee song - guess who sang / screamed the loudest?

Ben and "my lovely teacher Ms Jessica" as he calls her!

Hello All

Last night was the end of the year ceremony and Graduation for Brighter Horizons. Man can those kids put on a show, watch out American Idol!! Needless to say Ms Melanie & Ms Jessica's classes were the BEST - my judgement could not possibly be clouded by the fact that those are the classes MY KIDS are in!!

All the classes did great, and the the yearbooks this year were great! For those of you who aren't privileged enough to have your kids go to BH, 1. I'm sorry for you and 2. you don't know about yearbooks. So here is a brief explanation! Each child gets a yearbook customised for them, pictures of them and there friends , special art projects and papers they have done through out the year - basically they do a scrapbook for each individual child, not mass produced for the school or even the class. Individualized for each child - the amount of time and energy that goes into this undertaking is incredible! So Ben and Shaun's were super cute again this year!

The other really fun thing they do at graduation is tell you fun facts they get from each graduate. They do a survey a few weeks before graduation and then announce all the answers the kids gave. The best are usually what they want to be when they grow up, and what there parents do for a living! Here are Ben's answers!

Ben lives in Louisiana, his favorite TV show is NCIS, his mom work at the zoo, his dad work at Renaissance Arts, he has a brother named Shaun who spends his day being crazy, his favorite person is Ms Jessica (big shock), his favorite football team is Alabama (another big shock), his favorite food is salami and string cheese, and he wants to be "a Navy" when he grows up!

So his answers were pretty right on, my favorites are the kids who's parents work "at their work" , the kids who make up having brothers and sisters, and the kids who want to be super heroes like Superman when they grow up!!

So all in all a really great night. We are sad Ben is moving on, but we will still get to harass all the BH teachers everyday when we go to drop off and pick up Shaun - who knows if Ben doesn't like St Andrew's we'll just put him back in Pre-K!

No clinic today or for the next two weeks!!!! So thats exciting, and summer camp starts next week, so Ben is SUPPER excited about riding the school bus with Mr Art everyday and swimming and skate country (roller skating just what a kid with bad balance should be excited about!!!!) and ALL the other super fun things that go along with BH summer camp!

Having fun as always!!

The Sarrat Family

Mini Trip to Children's Hospital

2009-05-25T07:28:00.004-05:00

Just a quick note to clear up a few rumors and let everyone know Ben is doing great. Saturday afternoon the boys and I went to a friends house for a BBQ. Ben was having a great time running around and playing. He tripped and landed face first on concrete. He immediately had a very large bruise forming above his right eye and all along the right side of his head. Because Ben is on his chemo right now and one of the side effects can be low platelets I was a little concerned about a bleed. I called the oncologist and he thought Ben should come in for a CT scan to check for a bleed. So off to Children's. The CT scan showed no bleed and Ben's platelets were great, however the Radiology resident thought there was a small skull fracture above Ben's right eye and he wanted the attending to look at it, the attending agreed with the resident and wanted the Neuro Surgeon to look at it...Neuro Surgeon said if the radiologist thinks its a fracture then he needs to be admitted for a 24 hour watch. So around 1 am Ben and I finally made it out of the ER and into a room on 4 West (the Oncology floor). The next morning the Neuro Surgeon took all the CT scans and built a 3-D image of Ben's skull, it turns out its not a fracture but rather a channel that a blood vessel runs through - most peoples runs vertically ...Ben's runs horizontally leave it to Ben to have things running the wrong way in his head!! So we were released around noon. He does have some very nice bruises though!

Ben enjoyed his brief stay on 4 west he got to watch cartoons and have breakfast in bed, catch up with his favorite nurse Ms Tina, and meet a new nurse on 4 West who is a HUGE Alabama fan - needless to say Ben really likes her!

Ben finished his chemo last night and is very excited for graduation on Tuesday! Grandma and Grandpa arrived yesterday afternoon, so let the spoiling begin!

I know the word spread quick that Ben was in the hospital, Thank you all for all the extra prayers...I'm sorry we worried you for nothing. But we were happy the doctors were as cautious with Ben as they were!

Happy Memorial Day...And THANK YOU to all the Men and Women who serve and who have served to protect our freedom!

Erin

A Big THANK YOU!!!

2009-05-20T19:06:00.004-05:00

Ben with Rene & Becker from Hogs for the Cause!

As many of you remember March 26th a fundraiser was held by two fellow Jesuit alum (Ben Sr's high school). Hogs for the Cause was a day long party celebrating PORK!! We were unfortunately unable to attend because we were on Ben's Make A Wish trip, but everyone we talked to said it was a GREAT time! Ben was this years beneficiary for Hogs for the Cause. Tonight we were able to meet up with Rene and Becker, they gave Ben the seven thousand dollars raised by the event, and Ben told jokes! We would like to thank Becker and Rene and EVERYONE who attended and donated to Hogs for the Cause - what an amazingly generous community we live in. I know you've heard me say it before but Thank You never seems to be a big enough word...we will never forget how generous and supportive you all have been and it will take us a life time but we WILL pay it forward. We are already looking forward to NEXT years Hogs for the Cause - we will definitely be attending!!

Today we had a very LONG clinic day. I not sure what happened but we were there for 4+ hours and only saw the doctor for 5 minutes - so needless to say mommy was a little frustrated. Ben was fine he never complains, but I was definitely having an ADD day and the sitting around waiting was unbearable! But it was good news Ben is doing great and gets a three week break from clinic. We start another round of chemo tonight, but Ben has been handling it well so we are not worried.

Now for the T-Ball news...

TOMORROW NIGHT... BELLE CHASSE ...6 PM Pirates vs Grey Socks - thats right the the battle of the Brighter Horizons T-ball teams is tomorrow!!! Be there and wear maroon! GO PIRATES (and grey socks)!!!

Check out the new joke...Ben was definitely on a roll today! And we will post after tomorrow game!!!

Love to you all! And remember May is Brain Cancer Awareness Month. Learn more about DIPG (Ben's cancer) and more kids fighting this monster visit dipgkids.blogspot.com and www.icouldbeyourchild.org !!!

Erin

STABLE - No Disease Progression

2009-05-13T18:10:00.003-05:00

Okay so the tumor is still there, but we didn't really think it was going to disappear. Todays MRI results are "stable tumor with no disease progression". So that is great news. Ben's condition is stable and we will continue on with our current treatment plan. He will do another five days of chemo starting next Wednesday, and we will continue to have more fun!

Thank you for all the extra prayers, happy thoughts and good juju today! I think we needed them more for the adults to have patients than for the actual MRI. It was a VERY LONG day of hurry up and wait! Man I wish they would let me run that clinic - the doctors would be less than thrilled with my system I'm sure, but kids wouldn't be just sitting in waiting rooms ALL DAY I guarentee that! I keep offering to whip them into shape but they keep turning me down!

Big game tomorrow 6pm!

Love to all!

Erin and family

MRI on Wednesday!

2009-05-12T20:32:00.003-05:00

Okay MRI first thing tomorrow morning! We will probably have results right away, and I'll post as soon as I am able. Please send us all your prayers, happy thoughts, good juju...we will take it all! Ben is doing great right now and thats truly all we can ask for...but I am always nervous they are going to tell us something ugly is on the way!

Just to keep you all in the loop, Kale is home - YEAH!!! His mom was very excited to get out of the hospital and so was Kale!

We'll post tomorrow. MRI is scheduled for 9am!

Love you all

Erin

T-ball starts tomorrow!

2009-05-08T19:33:00.005-05:00

Ben holding his buddy baby Bryson!

Tomorrow is Ben's first T-ball game. He is supper excited, and so are we. Then we have a Birthday party, and of course Mother's Day. So another busy weekend for us.

Ben has his MRI on Wednesday. We are of course nervous, but Ben is doing really great right now so we can't ask for anything more than that. Graduation from Brighter Horizon's is just a few weeks away, and then summer camp (at Brighter Horizon's of course). So Ben is looking forward to a great summer, and we are looking forward to sharing it with him.

Wishing all the Mothers a VERY HAPPY MOTHER'S DAY - Its your day so you steal as many kisses and hugs from your kids as you want!!! (Don't get any ideas mom!)

Love ya
Erin and the family!

Having Fun, As Always!

2009-05-05T15:46:00.002-05:00

Time is sure flying by fast! I try to update more often but we are busy busy busy! Ben is doing really well. He hasn't even needed his protein shakes for about a week. He is eating well and seems to have plenty of energy. His balance is a little off but he doesn't seem to notice. He is using his right hand almost normally these days. And his hair is all grown in again.

We had a good week, we didn't have to go to clinic Yeah! We went to Disney on Ice of Friday with Ben's Class field trip. It was a lot of fun. T-ball practice was fun (as always). We have practice again tonight and eventually the league may give us a game schedule! But we have fun just going to practice!

Sunday was Ethan's Birthday party. So Ben and his buddies had a great time on the giant blow up slip and slide. They are a crazy bunch of kids, but they come by it honestly they have a crazy bunch of parents :)

Lil' Ben and mom had the stomach flu or food poisoning Sunday night and Monday -YUK! Even little illnesses are such a big deal these days, with Ben's compromised immune system due to the chemo we are always worried. But he did great - mom on the other hand is still recovering!

We have clinic tomorrow, hopefully it will be a short one. Please pray for our little buddy Kale, he is back in the hospital. He has been there for almost a week and is looking at 9 more days minimum. Shaun and Kale are only six days apart in age. Everyone try and imaging having Shaun locked in a tinny little room for two weeks getting poked and feeling yukky - yeah not a pretty picture. Kale is in isolation right now because his counts are so low, pray for his counts to rebound quickly and for his parents!

One more thing.....

HAPPY TEACHER APPRECIATION WEEK!!!!!!!!!!!!!!!!!!!!!!!

Ben and Shaun want to say THANK YOU to all the FABULOUS teachers at Brighter Horizons. I know you've heard it all before but I can never say enough how amazing, wonderful, fabulous, stupendous, awesome (okay I'm out of adjectives) the teachers at Brighter Horizons are. These ladies truly love our children as much as we do! On our field trip the other day I saw a teacher from another school actually yelling at the kid because he was crying because he was scared at the show. I thought never in a million years would that happen at BH. That kid would be in someones lap before the second or third tear fell.

We love all the teachers at Brighter Horizons, more than they will ever know!

Much Love, I'll try and post again soon. Next MRI date is May 13, 2009 - Think Shrink!

Erin

Pictures!!

2009-04-28T19:45:00.013-05:00

Hanging out with the locals!

Big Fred has Big Bears so he can always find his camp!

Building a fort in the bunk beds.

Tell me these aren't great teenage torture pictures!

Heading out on the boats! These kids are ready to catch some fish!

Jackson, Ben, Big Fred and Daddy fishing

Mommy hanging out with her little fisherman

Goofing off with Big Fred on the golf cart

More fishing pictures to come as I get them from the other moms and dads.

T-Ball - The Maroon Pirates and The Grey Socks!

1st Practice

Waiting to be batted in - he's even paying attention!

We Survived!!

2009-04-26T19:54:00.003-05:00

Don't call the Coast Guard! We ALL made it back!

What an awesome trip. Ben and 8 of his buddies and 10 VERY crazy adults had an awesome time fishing down in Delacroix. We got down there a little after 5pm Saturday. The kids were so excited to be there they ran in circles and all through the camp for about an hour! We broke out the marshmallow guns right away and they were a huge hit. I'm a little worried about how many marshmallows those birds are going to eat.

We fished from the dock a little, but had no bites. We ate diner and ran around till very late. I'm not going to tell you about how late the adults were up, or what they were chatting about - although it would make for some interesting reading hmmmm.

We got up early this morning and headed out. It took 4 boats and 4 very brave captains to take us all out. It was a little windy so it was some tough fishing to get a bite but most of the boats got a few nibbles. Captain Billy's boat and Captain Rodney's boat did the best, but we ALL had a fabulous time and thats what counts.

We want to say a BIG THANK YOU to our very good friend Big Fred. His camp was an absolutely perfect place for this camp out. Big Fred has always been one of Lil'Ben's favorite people. In Ben's eyes there is no better fisherman than Big Fred - whether Ben catches fish with him or not he always has a fabulous time and that makes him tops in Ben's eyes. Today after we came in, Ben and his buddy Jackson went for a ride on the golf cart with Big Fred to check out some other cool places around the island, and then we caught crabs from the dock. When the rest of the boats got in we had lunch and enjoyed hearing how everyone's fishing went. Then it was time to pack up and come home. We had such a good time I'm sure we are going to do it again.

Thank you to Mr Justin, and Mr Rodney for bringing their boats down and taking everyone out too. We were so happy we were able to get everyone out on boats at the same time. And no one fell in!!!!! We had such wonderful kids with us. They had a lot of fun and ran around A LOT, but they were also very well behaved. Thank you to all the parents who came out. We know how busy everyone is and it meant a lot for you all to take time out for the kids to have this great trip. Ben and I really enjoyed getting to know you all better, and boy do we know you better now! I say we do this again in a few weeks!

Special Thank you to Ms Melanie for keeping Shaun. He had a blast, of course! Maybe next time we will brave taking Shaun along.

Well I'm exhausted and the camera battery is dead, so I'll post pictures tomorrow - I promise!

We have a fun week ahead. T-ball practice for the Pirates on Tuesday, a field trip on Friday (I think) and probably a T-ball game this week (no schedule yet). We don't have to go to clinic this week -YEAH! Busy, Busy, Busy!

Night Night
Erin

Go Pirates!!!

2009-04-22T20:29:00.003-05:00

Hello All!
Yesterday was a pretty good clinic day. Luckily we were the first ones there so it only took 3 1/2 hours!!! When we left the waiting room was standing room only - it was going to be a long day for some of those kids! We saw Anna, one of our special clinic friends. She had a present for Ben, a pirate color book. He absolutely loved it, he colored the whole time didn't even play his leapster or gameboy!! He has done a second round of maintenance chemo now and his counts are still fabulous, so we are very lucky. Low counts would mean no contact with the outside world, and no contact sports if our platelets drop - it would also mean transfusions and a lot more hospital / clinic time. We have way to much planned to have to deal with low counts. Ben's next MRI will be mid May, he is having a little trouble with energy level and eating. We give him protein shakes to help with that and it seems to be keeping him going. His coordination isn't where his peers are but he doesn't seem to notice and he give 100% all the time.

Today was Ben's first T-ball practice. Coaches Ms Jessica & Ms Michelle have quite a team. She had so many kids request her team they had to split up into two team!! So one of the dads, Mr Justin is coaching the other half with some other parents. But the kids had a GREAT practice tonight all together. It was fun for the parents to as most us knew each other. So Ben's team color is maroon and team name......You guessed it the Pirates!! Ben wasn't even the one to suggest it! The other team is grey, but I don't think they have a name yet! But we will be cheering for both! Lord help us when maroon plays grey, we may need extra security that game. The kids had a great time. BIG THANK YOU to the fabulous Coach Ms Jessica!! And all the other parents out there that kept the crazy kids under control. If there are any MLB scouts out there you need to come out to the next game or practice we have some awesome players out there!

We have big plans this weekend. Saturday is our buddy Patrick's birthday, so that should be lots of fun. And then we meet up Saturday evening for the big camping / fishing trip!! Ben asked us to take his whole class fishing, so thats what we are doing. We have made arrangements with our good friend Big Fred to take the kids (and their parent or parents - we aren't that crazy) down to his camp for the night. We have plans for fishing off the dock, marshmallow gun fights (we have assembled 25 of them), and lots more fun. Sunday morning if the seas are agreeable we have arranged with a few charter captains, our boat, and friends boats to take all the kids out fishing. It looks like the seas may be a bit to rough so we may have to fish from the dock, but that will be fun too, we will just have to wait and see. So if any of you parents are still interested in coming just let us know there is plenty of room and we are going to have a blast - just tell Ms Jessica or leave a message at the school and we will give you a call - if you have our number call us or post a message here. We don't want to leave anyone out.

If you don't know what a marshmallow gun is we will post a picture! They are a great time, and also a great rainy day activity. I've kept Shaun busy for hours shooting marshmallows, he hunts them down and eats them!!!!

So we need extra prayers that the seas are calm Sunday and the kids are calm Saturday and Sunday!!! We will post lots of pictures!

Thats it for now...if I make it back to land Sunday I'll post, if you don't hear from me call the Coast Guard!

Erin

Great Time in Phoenix

2009-04-16T10:27:00.005-05:00

Hello All

Well we have had a great time in Phoenix! We have to leave today so I thought I would re-cap on all the fun things we did while I was here.

We have been playing A LOT - Grandma and Grandpa have lots of great toys for Shaun and I to play with. When we got here Thursday night we went to a really yummy BBQ restaurant called Town Talk II, my new friend Mr Chris was really happy to see me. He had a special fund raiser for me at his restaurant earlier in the week, even before he met me! He is really nice and I took my picture with him. Mr Chris also made some of the food for my party that I'll tell you about later. Thanks to Mr Chris and all my friends in Phoenix for making my fund raiser such a success.

Friday night we went to a place called Rawhide, its an old cowboy town. Shaun and I wore our cowboy hats. We got to play in the old cowboy town, there was a jail - we locked Shaun up but he escaped! We also went on a train ride there, we were going to get our picture taken in old west clothes but the picture place was closed. Mom and Dad got us cool harmonicas and I got a marble game to play with Grandpa.

Saturday it rained all day but we went to the park to meet up with all my Phoenix cousins. Its actually my mom's cousins and there kids but we will just call them my cousins because I don't know how that all works...2nd cousin? Anyway we got to play on the fun playground for a little while before it started to rain again, even though it rained we had a great time.

Easter was supper fun! We went to church and then when we got home the Easter bunny had been there. We got lots of games, toys and candy. And we found tons of Easter eggs in the back yard. Some of them had money in then, I love money! After our egg hunt we dyed Easter eggs and played baseball. Then we went to my other cousins house. Jill and Troy's house is really cool they always have giant sand piles in their backyard for us to play in. And we went swimming in their pool. All the grown ups said it was to cold to go swimming but Shaun and I did it anyway. They were right it was pretty cold, but it was fun too. We ate a yummy lunch and then went swimming in the hot tub! That was much better! Easter night my Uncle Mickey arrived from Colorado - I was asleep so I didn't actually see him till Monday, but Shaun did he snuck into bed with Aunt Mego and Uncle Mikey that night - haha!

Monday Uncle Mikey, Grandpa, Daddy, Mommy, Shaun and I went to the Fire Truck museum. Its the biggest fire truck museum in the world. Its really cool, and I didn't fall off the fire truck this time....Shaun did! He's okay, he just cried a little. We got some cool fireman toys and I got a new Phoenix Fire Dept shirt because my old one was getting to small so now Shaun wears it. Monday night we got to ride the "light rail" a new train in Phoenix. It took us down to the Diamondbacks game. They played the Cardinals. My Uncle Mikey loves the Cardinals, I think its because he is from St Louis. I cheered for both teams. I also got to go up to the kids play area in center field, they have a batting cage up there and I hit the ball really good. Shaun and I were up there when they sang "take me out to the ball game" and the camera guys put us up on the Jumbo screen singing - Mego, Mikey, Mom and Dad all said they saw us up there!

Tuesday we had a big party planned up at St Gregory's (were my mommy went to grade school). It was great there were tons of people there, and lots of kids my age. There was a really cool playground, and lots of food. But the best part was all the people who came to to see me! I didn't know that many people in Phoenix knew who I was. Thank you to everyone who came to see me , and I guess my brother Shaun too! I am so happy you are all praying for me, I know its helping, because I am doing super good right now. I was on my Chemo the first 5 nights I was in Phoenix and I did great - I only threw up once!

Wednesday we tried to relax a little - we went and visited my grandma and grandpa's works and went to visit Mr Baron's 5th grade class at Baltz School. They have been writing to me so I went to visit them. That was fun they taught me a new game, Silent Ball. I don't think we will be able to play it at my school because we don't know how to be silent! Then that night we went and hung out with my moms friends Kelly and Mike and there kids. We watched movies and played it was fun.

Today we have to go home. I had so much fun playing with Grandma, Grandpa and Mego, playing on Ms Jeanie's putting green and the two tree houses in the neighborhood. I'm sad to leave all my friends here in Phoenix, and I'm going to miss my Grandma, Grandpa and Aunt Mego, but I am excited to see Ms Jessica and all my friends again, and go to Brandy's birthday party!!

I have to go take a bath now so my mom is going to write a little!

Love you
Lil'Ben

Just a quick note from mom and dad! Ben Sr and I want to thank everyone in Phoenix (and everywhere else) one more time for all the love and support. Thank you never seems to be a big enough word. We are blessed to have you all in our lives and in Lil'Ben's corner.

On another note we wanted to let you all know that our dear friend ^Timmy^ earned his wings on Easter Sunday. ^Timmy^ is one of the amazing kids we have met on our cancer journey. Please pray for his family during this very difficult time. We love you ^Timmy^ we will miss you!

Much love
Ben and Erin

Time to party in Phoenix

2009-04-08T23:24:00.002-05:00

Hi Phoenix friends, the Sarrat's are coming to town so its time to celebrate! We thought it would be nice to get all Ben's Phoenix friends together for some barbeque and fun.

Please join us at St. Gregory's playground
(19th ave. and Osborn)
Tuesday, April 14th
4-7pm

We will be serving barbeque from Town Talk II so bring a side dish or dessert to share and any beverages you choose.

We hope all of you can make it to have some fun and share some laughs.
See you there- Aunt Mego

Where in the world....are you?

2009-04-02T21:25:00.002-05:00

Hi everyone- Aunt Mego here again. It's been awhile since I've posted but Ben has had so much to share that it is hard to get a word in.
So when I was in New Orleans a couple weeks back Lil Ben and I were talking about all the friends he has- and there are a lot of you. The thing is, he doesn't know exactly where you all are. So we got a map of the world, and that's where you come in. We were thinking it would be pretty cool if everyone could send Ben a postcard from the place you live- then he could look at the map and see where you are.
We thought it would be best for you to send the postcard to his school- that way he can share them with all of his friends. So send him a shout out with some news about you and your family, or the place you live. He doesn't care if you have terrible handwriting or you write in another language, just as long as he can make out your name. Here's the address:

Brighter Horizons
Pirate Ben and matee's
110 Barriere Rd #A
Belle Chasse, LA 70037

We hope to hear from you all!
Love Aunt Mego

Cruisin With Mickey!!!

2009-03-30T17:08:00.034-05:00

Heading to the airport - the boys do love their Limo rides!!

The just in case drill - we tried to keep Shaun
in it the whole time!!

Our first of many frosty beverages!

Ben hanging on the balcony outside our cabin!

At port in Nassau

Welcome to the Bahamas

Swimming in the Mickey Pool!

Captain Jack and Pirate Ben

The boys with Pirate Minnie!

Chip & Dale at the Beach!

Our Beach Bums

You can't go on a cruise and not play a little
Shuffle board!

Mom and her handsome sailors!

Shaun enjoyed all the eating!!

WOW!! What a great trip! We all loved the Disney Cruise. And Make a Wish made it so special for Ben. His trip started with a Limo ride to the airport which he has been quite accustomed too! The boys were both so excited when they saw the ship for the first time (okay Daddy and Mommy were pretty excited too!). We got on and had a great lunch! The emergency drill was pretty funny, the boys liked the big orange life vests! There was a really fun party as we set sail and Mommy and Daddy had frosty beverages, Ben got to do some dancing, which he always loves, and we met some really nice people. The first night we had dinner at Triton's, the Little Mermaid restaurant. The boys really enjoyed running into all the different characters all over the ship. We went exploring after dinner and then Shaun and Mommy turned in early Shaun was exhausted (no nap) and Mommy was a little sea sick - just a little! The Bens went exploring again and found the ping pong, and Foosball tables and went to one of the shows.

The first morning we were in Nassau in the Bahamas. We had planned a glass bottom boat excursion but it was cancelled due to high seas. So we went shopping for a little while and got t-shirts mailed a few post cards and got some really cool whistles for Ben's class. They are nice and load Ms Jessica should LOVE them. Then we went back on the ship to play! We went swimming in the Mickey Pool, and Ben went to Green Plastic Soldier Boot Camp (part of the programming at Oceaniers Club for kids his age.) We ate lunch by the pool and Daddy and Mommy had a few more frosty beverages! Shaun was the splash king of the Mickey Pool! The second night on board was Pirate night - so you know we had fun!! The boys dressed in pirate costumes for dinner. Then Ben went to Pirate camp where Captain Hook made an appearance, and Shaun and Ben and I went to see the show "Toy Story the Musical" it was wonderful, Shaun didn't even move for the hour and a half show!! Then Shaun and Daddy turned in for the night and Pirate Ben and Mommy headed up for the Pirate Party on deck (at 10pm!!!) Ben and I danced and partied for a while and then turned in, Mommy stayed up and watched the fireworks from our balcony.

Saturday we got up super early and spent the day at Disney's Private Island Castaway Cay! We took Shaun to Nemo camp for 2 hours so we could try and take Ben snorkeling, but he wasn't interested once we got there, the seas were a little rough still so it was probably a good decision. We played on the beach for a while and then went and picked up Shaun - these boys are definitely beach bums! We were out there all day playing in the water and building (and smashing) sandcastles! We got to see the Flying Dutchman from the Pirates of the Caribbean movie - which was very cool and piratey! That afternoon we got the boys to take a nap (finally) so they would be in good moods for Ben's special surprise. Ben and the rest of us got to have a private juice and cookies party with Captain Mickey and the Captain of the Disney Wonder. They had a Disney photographer there so we got lots of great pictures - just none on our camera - Ha! Shaun got a little rough with Mickey's nose but other than that it was a really special treat. After dinner on the third night we went back to our room and we played with some fun pirate toys the boys talked us into buying - like they needed more pirate toys!

It was such a great trip - and over way to soon. Dana our Make A Wish hostess on the boat made it really special for Ben. Every time we left the room she would come in and drop off a special surprise. She left him a pirate Mickey doll, cookies, petifores and chocolate covered strawberries (a big favorite of Mommys!!) She also gave him tickets for fun activities on Castaway Cay! She also arranged the special meeting with Captain Mickey!

The boys are already talking about their next Disney Cruise or as Shaunie calls it "Mickey Cruise"! So it looks like we will be going again!

On another topic - we heard the Hogs for the Cause fund raiser on Saturday was a lot of fun! We were really bummed that we missed it. Thank you to all our friends, family and community for coming out and supporting Ben and Pediatric Brain Cancer. And of course enjoying all the delicious PIG!!

What a great couple of days!!

Love you all

The Sarrat Family!!

AQUARIUM WINS TOP HONORS FROM BRIGHTER HORIZONS

2009-03-25T18:05:00.007-05:00

Pirate Ben divers!!

I think the stingrays were a little nervous about the swords !

What an awesome field trip! Ben's class was given the royal treatment today at the Audubon Aquarium of the Americas.

Here's our day as Ben tells it!
Two way cool personal tour guides took us through the Aquarium- Mr Tom and Ms Susan - they know everything about the Aquarium. We went through the fish tunnel and the diver guys (mommy note: sorry girls he calls everyone guys!!) were pirates. They had swords and everything, they even did a sword fight. And they found treasure in the water and gave it to us later when they came out of the water - we got pencils and stickers and toy swords!

We got to pet a penguin, his name was Cole, he was very nice and very soft. Then we got to go pet stingrays and sharks. We also got to pet this thing that looked like a bomb from Nemo!! (moms note - it was a pencil urchin - not a bomb but it does look like WWII underwater mines!)

Ms Susan fed some Lion Fish for us they are really fast at eating. Then she took us to feed the really big shark tank. My mom was nervous one of us would fall in but we didn't, we tried but we didn't!! We got to throw food to the sharks and King Midas the really big sea turtle from the top of the Gulf tank.

It was a supper fun day and I'm so glad my mom knows such really fun people at her works!

Moms note: for many years now Ben has considered all Audubon facilities mine - yes its my moms Aquarium, my moms Insectarium, my moms Zoo! I've been a busy lady runny all those facilities!!! Well today it became Mr Tom's Aquarium and Ms Susan's sharks. I guess it one less facility for me to worry about!

Just one more example of what amazing friends, family and community we have.

Ben had a great week. This last Saturday was his last soccer game and he got a really big trophy! We went to the park with the boys friends Jackson and Lucas. Then we had a camp out with Grandpa in the back yard, we made a camp fire complete with smores! And the Boys and Grandpa spent the night in the backyard in a tent!! Sunday we went to the North Shore with Ben's friend Patrick to visit his PawPaw and ride horses. The boys got to pretend they were steer and we turned them out of the shoot and PawPaw roped them! I tried to get him to keep Shaunie tied up, but no luck!

Grandma and Grandpa left on Tuesday and then our awesome field trip today. And it just keeps going...tomorrow we leave on Ben's Make A Wish trip - Disney Cruise!! We are very excited. It should be a lot of fun.

Unfortunately we are going to miss the "Hogs for the Cause" fundraiser this weekend. But we got some really cute Thank You signs printed up, big thank you to Artie's Printing for the awesome posters and banner!! Anyone interested in a good old fashion southern pig roast head out to the Fly behind the zoo it should be great food and a lot of fun!! Check out the web page for more info www.hogsforthecause.org

We'll post Sunday night when we get back!

Love you all

The Sarrat Family

Dinosaurs Invaded Audubon Zoo!!!

2009-03-18T17:23:00.005-05:00

The boys "underwater" with the Sea Lions

Ben being attacked by T-Rex!

Awesome trip to the Audubon Zoo. I even got to see Dinosaurs - someone told me they were extinct but I think they were wrong because the zoo had lots of cool dinos! I didn't get to ride the bus with my class because I had to go to clinic today for a bunch of stuff. I got to Children's early and got my blood work done. We tried to get my antibiotic treatment before the field trip but couldn't get it done in time so we told the docs - Later dudes I'm going to the Zoo.
We met my friends at the front gate, we were all so excited to be there. We went and saw all the animals in Asian Domain, next we went to Primates - the Orangutans were really funny this morning. Then we headed over to the dinosaurs, it was sooo cool. There were all kinds of different dinosaurs and they are huge. I was almost attacked by T-Rex. A bunch of my buddys and I all got dino masks and I even brought one back for Shaun - we are supper scary! Then we went to the reptile house and played on the playground for a while. My mom let me go on the picnic with my class before they got back on the bus and I went back to clinic to finish up everything and get my blood counts. So it was a busy busy day!

Thanks to everyone for coming to the Zoo with me I had a great time!

Love ya

Lil Ben

Another Fun Audubon Field Trip

2009-03-12T11:54:00.005-05:00

What a Wednesday!!
Well Ben and his class had another fun field trip this week. They got to see the Bugs movie at IMAX. They loved the school bus ride, as always. And the movie was fun - kind of gross with all those bug eating bug close-ups!!! And then Ms Jessica took them all to Wendy's for lunch. Ben went to clinic instead of back to school, and his blood counts were great, they were actually amazing considering he just finished another round of chemo!

After Filed Trip and clinic we went home for a short rest - okay Ben played and Mommy napped! And then Ben had friends over for Game Night! Not your tipical playdate with other little kids. Ben decided to call mommy (and his) friend Kelly the other day to see if she wanted to come play shoots and ladders ---well one thing leads to another and Lil'Ben and Kelly had planned quite a game night. Six adults and Lil'Ben had a game marathon of chutes and ladders, candyland, baseball and field hockey! I took Shaun (the game destroyer) to pick up Aunt Mego at the Airport so Ben could have his little party undisturbed for awhile. The boys had a great time and were very excited to see Aunt Mego! My / their friends are very special people - I'm not sure who had more fun the kids or the adults!

They stayed home from school today to hang out with her, and Ben has a soccer game tonight at 6:15 so he is supper excited to show Aunt Mego his supper soccer moves!

More pictures and fun planned for this weekend.

Just keeping up with the crazy kids!
Erin

Forgot the Pictures!

2009-03-05T17:45:00.007-06:00

My Class!!!

Us "in" the cockroach kitchen!!! YUK!!!

How many of us can fit in the "Love Bug"?
Did anyone call Guinness???

Guess Who??? Yup ME!!!

Mommy is so excited she finally learned how to use this picture feature!!! Look captions and all!

INSECTARIUM!!!!

2009-03-05T17:01:00.005-06:00

Hello My Pirate Crew!

My class had an AWESOME field trip to the Insectarium yesterday! What a great place to start our All Audubon All Month Field Trip Fun! First we got to ride there on a school bus, I LOVE riding the school bus and Mr Art is the coolest bus driver, he lets us scream all the way through the tunnel. My dad came with us on the bus and my mom met us down there. We were the first ones in the Insectarium that morning, we love being first! If you haven't been to the Insectarium yet you should totally go, you have to walk through a metal detector before you enter (my mom says thats because its in a federal building and that its part of homeland security, but I think the real reason is because it is FUN, and they want you to take all the money out of your pockets so they know how much you have to spend!).

We got a personal escort through the Insectarium by my moms friends Mr Jayme, and Mr Zack. They are in charge of the Insectarium so it is sooooo cool they spent so much time with us, my mom says they are super busy bug dudes. They told us about all the bugs, and they did some raps for us. That was sooooo cool, they even did a rap with our school in it. I hope someone got a video of that! I also got to see a few more of my mom's friends that work there, Ms Dierdre, Ms Remy, and Ms Ann. I got to pet giant cockroaches, and patent leather beetles.

We also got to eat bugs...Yes my mom and dad and I all ate cinnamon sugar meal worms - I didn't like it too much but my friend Adam loved it - don't tell his mom he doesn't think she would like him eating bugs! Most of the girls wouldn't eat the bugs...but I think maybe one or two of them did. Ms Melonie took a picture of me and mom eating our bugs, I'll post it if I get a copy.

The movie at the Insectarium was really neat. The seat tickles you, it splashes you with water and poofs air at you....it was a little scary at first but I really liked it so I watched it twice! My favorite part of the Insectarium was making the insect on the touch screens, my insect doesn't really exist but the computer said it would probably live!! So I guess I'm a pretty good insect builder. I also loved the butterfly garden, I'm so glad Tanner didn't fall in the butterfly pond!!

After the Insectarium we had a picnic at my favorite park on the WestBank and then went back to school, what a super fun day!!!!! I can't wait for the IMAX next Wednesday.

I have a soccer game this Saturday at 9am, its going to be really busy there because the big kids are having a tournament. I love soccer, and I'm really good. My Aunt Mego comes next week, so I'm super excited about that, and I had my assessment test at St Andrews today - I think it went good but I still want to stay at Brighter Horizons with Ms Jessica next year. My mom says its time to move up for Kindergarten. I plan on talking her into staying at Brighter Horizons, after all Ms Jessica said she could order books for me all the way through high school so I will try and stay with her till then!!!! Mom says Prom with a bunch of 5 year olds probably won't be fun but I don't know what prom is anyway so I'm staying!

Thank you all for praying for me, I am doing really good right now. I finished my chemo last night with NO problems - I actually like taking those pills. No meds for 26 days then we will do some more chemo.

Love you all

Your Pirate Captain Ben

PS Thank you to my Pirate Girl Mommy for typing my message tonight! I told her what to write but I was much to busy building towers to do the actual typing!

Ben's week

2009-03-01T11:07:00.006-06:00

Ben had a great week.

It was a fun Mardi Gras, and another great soccer game on Friday night. Go Orange Tigers!! Ben is looking forward to a fun week at school. Its the beginning of "MARCH MADNESS" no not basketball - Brighter Horizons and Audubon has teamed up and gone field trip crazy!!! Every Wednesday this month Ben's class will be going to one of the Audubon facilities for a super fun field trip. This week is the Insectarium!! Ben is soooo excited he loves the Insectarium. But hey what five year old boy wouldn't love a place thats all about bugs!! Mommy is pretty excited because she gets to go on all the field trips too!

Great news the United States government has finally decided that mommy is not a threat to national security and has FINALLY renewed her passport - now we can book Ben's Make a Wish Disney Cruise! No dates yet but it should be soon. Ben is very excited about "going sailing with Mickey"!!

Ben Sr and I want to say Thank You again to our wonderful friends, family and community. I feel like we can't say thank you enough. Ben was so excited to see you all out at his soccer game - when the coaches finally got all the teams situated on the field the other night we were all heading over to the field where Ben was playing and as our "herd" crossed the field Ben proudly announced "hey look its my cheering section!" with the big cheesy grin he has - he was soooo proud to have so many people there to watch him play!! We also want to say thank you to all the Sacred Heart and Stuart Hall families for all the wonderful meals over the past three months, one less thing to worry about and more time with the boys, so important right now! We have also recently learned that Ben's Cancer Research Benefit Fund will be the recipient of this years "Hogs for the Cause" fundraiser at the end of this month. For more information about the fundraiser go to http://www.hogsforthecause.org/index.jsp Our community has been so supportive. I can't image how other families going through a similar fight does it without YOU!

Now for our decision - I know you all have been wanting to know what our next step is, thank you for not pressing us for the answer it has taken us a while to come to our decision. After Ben's MRI his oncologist told us she thought it was time for us to move to another hospital that could provide us with a more aggressive therapy as the tumor had not shrunk as much as she had hoped. Well after tons of research and hours of talking to doctors all over the country, the consensus is that at this time there is no other treatment recommended. Until Ben starts to show disease progression (the tumor getting bigger) none of the doctors recommend any of the other current treatments. We have started Ben on a maintenance dose of the oral chemotherapy. So we will stay here and continue working with Dr Velez, who Ben loves, and monitor him very closely and pray there is a break through VERY SOON!

So its back to having fun for us!! All fun all the time - thats our mantra! Aunt Mego is coming for a visit very soon, very exciting. We are planning a trip to Phoenix as soon as we get our Make A Wish trip dates. And Big Ben & Lil' Ben are planning an offshore fishing trip out of Panama City, Fl - they are still deciding if Mommy and Shaun are invited, it may just be a big boys trip! Ben wants to spend some time at the beach this summer in San Diego (I think he wants another GIANT Pizza), we also may be spending this Easter at the mountain house in North Carolina with the cousins.

Thats all for now! We have to go for a Jeep ride around the neighborhood!

Love always
The Sarrat Family

Lets catch up!

2009-02-24T19:16:00.010-06:00

Friday : Ben's first soccer game - he scored two goals!!! Watch out David Beckham Ben got his mom's awesome soccer skills - although he didn't watch for planes even once (all you Flyers & Twisters know what I'm talkin about!!)

Saturday: Ben and Mommy danced on stage with Kid Rock - I know its crazy but its one of Ben's favorite songs..."All Summer Long" and Kid Rock was riding in Endymion so Ben's Uncle Howard arranged for us to be at the stage on Orleans Ave before the parade. We didn't get a picture with Kid Rock but hey how many 5 year olds can say they danced on stage at a Kid Rock concert! Probably not to many 5 years old have even been to a Kid Rock concert!!

Sunday: Parades!!!!

Monday: Took a break from the crazy Mardi Gras scene so we could rest up for a Big Fat Tuesday!

Today: Mardi Gras
We spent the day out on the parade route catching treasures and having fun! Ben and Shaun went dressed as Pirates - of course!! And had a great time. All the cousins and Aunts and Uncles were there, a big Thank You to The Lawrence Family for letting us hang out at your house today! What a great parade spot you have!!! We had a fabulous Mardi Gras. But its back to real life tomorrow! Mom has a meeting with Ben's docs tomorrow - to go over all the options we have searched out over the last week. Dad has to work but Aunt Dr Steph is going to go with mom. Then tomorrow night mom and dad will decide what the plan is...

Not what we were hoping for

2009-02-18T18:51:00.002-06:00

Well its been a very long day. We just got home after 10 hours at Childrens hospital. The MRI went smoothly and Ben came through great. The result weren't what we were hoping for, the tumor is smaller but still very significant. Our oncologist feels we need to pursue a much more aggressive treatment than they can provide at New Orleans Children's hospital. It looks like we will either be in Memphis at St Jude or at one of the Texas hospitals by this time next week. We have lots to talk about and think about right now. We will be looking into all our options over the next few days and will keep you all posted on our decision.

Thanks for all the prayers, keep them coming we will surely need them in the next few days while we are making some big decisions.

Love Always
Erin and Ben Sr

Tomorrows MRI

2009-02-17T12:29:00.003-06:00

Okay everyone tomorrow is Ben's first MRI since we started treatment. We are of course a little nervous about what it will show. So in true Jackie fashion (a cancer mom friend of ours) I am going to tell you what to pray for!!!

Ultimately we hope that the original MRI tech was a moron and there was never a tumor to begin with..

Okay so thats probably not the case so option 2 is...

The tumor has completely disappeared!

Okay so again probably a little unrealistic so lets all pray for option number 3 (but I'll take 1 or 2 also)

Please pray that the tumor has shrunk significantly, that it is "stable" as they call it - no new signs of regrowth.

Whatever they tell us tomorrow we know we will be able to work through it with the love and support from all of you. I will try to post tomorrow night to let you all know what they said - but I'm not 100% sure that they will tell us tomorrow, we will have to wait and see. If I am unable to get to a computer to post I will have my sister Megan post a quick update.

Tomorrow 10 am (CST) happy thoughts, prayers, good juju, whatever you call it we'll take it!

Love you all

Erin

Disney Magic

2009-02-15T17:12:00.017-06:00

Okay so I still haven't figured the slide show option out on this thing yet - I picked a few of the 623 pictures we took. Where do I start....
Early (5:30am to be exact) Saturday our ride showed up to take us to the airport - only when we opened the door expecting to see Ms Jessica it wasn't Ms Jessica it was a limo driver. Ben was very excited to ride in a limo and keeping Shaun in a seat was near impossible. Another limo met us at the airport in Orlando and Ben and Shaun treated us to a dance show on the way to the resort. We have video which we plan on using to embarrass them at every major occasion, graduations, weddings etc...
We checked into the Polynesian and headed straight to the Magic Kingdom by boat from the resort. The captain let Ben blow the horn and steer the boat and he was sold - only way we would be going to Magic Kingdom was by boat! Our first ride was Jungle cruise which ended up being his most favorite ride the whole time!! He loved Peter Pan and Pirates of the Carabean also. We were able to get a special pass that allowed us to bypass most lines. This was very nice. Ben would not have gotten to see and do as much as he did without the pass. He would have been much to tired.

Sunday we went to Chef Mickey's for breakfast and ate with Mickey , Minnie, Donald, Goofey, and Pluto then we hit the Animal Kingdom and Shaun started on his quest to be blacklisted by Disney Security. Shaun never meet a sprinkler head he didn't try and break!!! But the boys had a great time and got lots of character autographs here. They love getting autographs - Shaun runs up yelling "write my name...write my name" - our autograph books are almost full! We saw the Nemo- which was awesome. And then we decided to stay for the parade, its a good thing too, Ben was picked out of the crowd to be an honorary cast member and help with crowd control and keeping the crowd entertained. He was super cute and took his job very seriously. They dressed him up like Disney staff and he helped with some cheers and stuff. He even got a certificate that made him an honorary Disney Employee. Grandma, Grandpa & Ms Jessica arrived Sunday night and Big Ben and I went to dinner just the two of us (its been quite a while) it was great.

Monday we hit magic Kingdom again much easier when you have more adults than kids. Shaun is not a fan of lines, even when they are as short as they were for us. We had a great time again and got to have lunch with Winnie the Pooh, Piglet, Eyore, and Tigger at the Crystal Palace. Ben went on Splash Mountain and Thunder Mountain.

Tuesday we went to Epcot and Ben loved Soarin! And I loved the margaritas they served in Mexico! Ben got to go to China just like he has always wanted to. We talked to Crush from Nemo, that was a cute show. Then we went to dinner at Fort Wilderness lodge. It was a lot of fun they throw things at you and there is lots of yelling, so right up the kids alley!

Wednesday we had breakfast with Lilo & Stich and had to say good bye to Grandma Grandpa and Ms Jessica. So we spent the morning at Magic Kingdom before they had to leave and then Ben's Aunt Steph, Uncle Henry and their kids, Catherine, Stephen and Virginia and Grammy and Pops arrived to spend the end of the week with us. We went to Epcot that night for dinner. Ben was really excited to show all his cousins the cool stuff he had ridden on.

Thursday we did Hollywood Studios - I think this was Shauns favorite park. They loved the Playhouse Disney show - Shaun was dancing the whole time. Ben and the Crocker kids loved the Toy Story shooting game. And Ben went on Star Wars and got to be in the Green Army Man show. Shaun got his face painted. Ben and the Crocker kids also enjoyed the pools at the resort every afternoon - the loved the slides.

Friday we went to Animal Kingdom again and had Breakfast with Donald, Mickey and all his pals again. Then we saw the Lion King Show and Ben and Steve got picked out of the crowd to dance in the show! We had dinner at Epcot again and Ben fell asleep at like 6:30 and slept through dinner and all the evening Epcot rides. It had been a really long week and he gave it 100% the whole time.

What a week - we had to leave early Saturday we were going to cram in a few more rides at Magic Kingdom but decided to just have an easy morning before we headed to the airport by limo again!!!

We brought home tons of souvenirs and present for family and friends who couldn't join us. Ben has decided that he wants to go back for his 6th birthday and bring all his friends!!! I think we are going to need a lot of chaperons!

Such amazing memories. And like I said over 600 pictures, and videos.

BIG THANK YOU to our Brighter Horizons family!!! This was an amazing trip and we were so family so many of our family were able to make it for a couple of days.

We truly have turned Ben into quite a rock star I'm not sure I'll be able to get him in the Envoy to take him to school tomorrow - I'm sure he will be looking for a limo!!

Check out all those smiles!!!

Love you all

Erin

DISNEY WORLD UPDATE

2009-02-12T20:05:00.006-06:00

Hey everyone quick note because I am very tired and Ben has planned another big day for us tomorrow. To say we are having an amazing time is an understatement. The boys are none stop and loving every minute. What wonderful memories we are creating. Believe it or not this is not Ben's Make A Wish trip - this is his Brighter Horizons trip. An amazing gift from Ben's school - we could never have planned all this on our own! We can never say thank you enough for this amazing trip. Ben is truly a lucky little boy to have you all in his life. I will be trying to add the slide show feature to the blog so you can all see the pictures of a trip we will never forget.

We love you all

The Sarrat Family

DISNEY WORLD

2009-02-09T21:13:00.002-06:00

Hi everyone---
Aunt Mego here. Ok, is everyone as bummed as I am that we all didn't get to go on the big trip? Rest assured we can all be happy that Ben is having an absolute fabulous time, and I hear he and Shaun are running mom, dad, grandma, grandpa and Miss Jessica ragged trying to fit everything in. Since we all couldn't be there to see the huge smile on Ben's face as he takes Disney World by storm Erin wanted to make sure we all experienced some of his favorite things about Disney (so far). So here are a few highlights:
-The limousine rides to and from the airports (Ben called to tell me about it at 5am, I have a great message on my phone cuz Aunt Mego was sleeping)
-Ben's favorite ride is Peter Pan but Splash Mountain & Thunder Mountain are among the top ten (I guess he grew enough last month to go on some of the big rides- yeah!)
-Nemo Show is awesome
-Animal Kingdom was lots of fun yesterday and Shaun reports that the ELEPHANTS were the best animals there
-Both Ben and Shaun think its pretty cool that they get to take a boat to the Magic Kingdom everyday
-Grandma and grandpa tell me they get to watch the fireworks everynight from their hotel room
It sounds like everyone is having a blast, and Ben and Shaun can't wait for everyone else (grandma and grandpa Sarrat, Aunt Steph and cousins) to get there in a few days.
Most of all Ben wanted to say THANK YOU THANK YOU THANK YOU to everyone who helped make this happen. You truely made a little boys dream come true and he is having the vacation of a lifetime.
Erin promises pictures and more stories when she can get her hands on a computer.
That's all for now- I hope you're all thinking back to a good memory of your first trip to Disney World or Disney Land- it can be magical!
Love you all,
Aunt Mego

Soccer Ben

2009-02-03T20:04:00.004-06:00

Hey Everyone

Wanted you to know tonight was my very first night of soccer practice! I am playing soccer at PAC. My team color is orange, but I don't know my team name yet. I am big number 8!! My mom was very excited because 8 was her first soccer number when she played for the "Flyers" when she was little. I am going to miss my first game when I am at Disney, but I'll be there for the game on the 20th.

After practice I took my mom and Ms Jessica out to dinner (my dad gave me the money!)

So I'll tell you as soon as I know my team name, but until then "GO #8 ORANGE!!"

4 days till DISNEY!!!!

Love ya
Lil'Ben

PS I wanted everyone to now we have joined forces with other families in the fight against childhood cancer. The group is called "TEAM UNITE" check out the web site and learn how we together can cure childhood cancer, read about the teams (and the one Pirate Crew - you know us we always have to be crazy different) and learn the staggering statistics about childhood cancer. www.teamunite.net
Erin

Catching up!

2009-02-01T17:37:00.003-06:00

Hey everyone just wanted to check in and let you know what I'm up to! Its only 6 days till I go to Disney and I am VERY EXCITED. My Grandma was here all weak so I didn't go to school everyday - but don't worry I still did my school work.

We went to the Vietnamese New Years Festival yesterday with my cousins the Boyd girls! It was really cool there were dragon dancers, and fireworks. Shaun didn't like it very much - he hates fireworks!

Shaun and I got haircuts on Saturday. The barber tried to even up my hairloss areas, so I kind of look like a Marine - My mom thinks I am very handsome! Shaun wouldn't sit still, big surprise - so his haircut is kind of crooked!

Gotta go eat dinner!
Love ya
Lil'Ben

The pictures you've been waiting for!

2009-01-28T17:46:00.011-06:00

Hello All

Just a quick note today. Finally got the laptop fixed so now able to post pictures again.

Here are the pictures from the Benefit Dinner!

Tonight I ask for your prayers for my cousin Cindy Jemmett her husband Cliff and their whole family. Remember to tell the ones you love that you love them every day! If you take anything away from our journey with Ben I hope it is this, Yesterday has gone, tomorrow is not promised, so live and love today.

I love you all!
Erin

Weekend of Fun!

2009-01-26T13:10:00.003-06:00

Ben had another great weekend. He had a fabulous slumber party Friday night with Ms Jessica and a bunch of buddies from school. And then she took them all to Emily's Birthday Party Saturday morning. After the birthday party we went Ben & Shaun's Aunt Julie and Uncle Howard's house to play and have dinner. I must say my 5 nieces run a fabulous beauty parlor if you are in need of a new hairdo! Even Uncle Ben got his hair done, 3 pony tails and several barrettes later he was just as handsome as he can be! Sunday afternoon all the cousins and aunt and uncles came to our house for more playing and of course more food!

Grandma flew in from Phoenix last night, so the boys are very excited about being spoiled. I know Ben has already put in the request to go shopping at his favorite place, The Dollar Store!

We heard from the make a wish people and it sounds like Ben's wish has been granted for a Disney Cruise. He is very excited and we will probably be going in March.

Please keep a couple of our very dear cancer friends in your prayers, Kale and Timmy are both in the hospital. Timmy is trying to get his immune system back up so he can get out of the hospital for his birthday! So extra prayers for Timmy and Kale right now!

Please keep Ben in your prayers, I know from his posts its hard to believe he is "sick". The further away from radiation we get the more and more nervous I get that the tumor will start to regrow. The waiting is impossible! So extra prayers that the tumor forgets how to grow (or falls out completely!) and extra prayers that I have patients for this impossible waiting game.

Love you all

Erin

Having a good week!

2009-01-21T16:28:00.004-06:00

Hello Everyone,

Just checking in and letting you know I'm having a good week. I went to the eye doctor today and she said my eye was getting much better so no surgery!! Good news since my mom and I didn't even know they were thinking of surgery!!! I am excited for Friday night - I get to spend the night at Ms Jessica's house (so does Shaun) - my mom and dad are going to a mardi gras ball. I sure hope Shaun doesn't wake us all up at 3am like he did today.

I signed up to be on a soccer team, I start practice the first week 0f February! But I'll miss my first game because I will be at Disney!

I met with the Make-a-wish ladies on Saturday. They were very nice. I told them I wanted a cruise ship - but I think we negotiated down to going on a cruise, we will see what they say. I don't have anywhere to park a cruise ship anyway!

My teacher Ms Jessica was sick today. I sure do miss her when she is gone. I hope she feels better soon.

Okay gotta go help my mom clean the house - Its my job to keep Shaun busy so he doesn't mess stuff up just as mom gets it picked up. Its a VERY difficult job, I should ask for a raise!

Love ya all - thanks for all the messages.

Here is my joke.....

What does the alien loose when he leaves in his his flying saucer?

He bumps his head.

If you get this joke please explain it to my mom she just thinks I'm nuts!

Lil'Ben