UPDATE

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!

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!!!

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!!!!

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!!!

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!!!!!!!!