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!!!!!!!!

Little Bump in the Road

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!!!!!!

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!

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!

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!!

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