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!!!!!!!!

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

ANNOUNCEMENTS!!!!

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!!!!

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!!!!

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

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

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

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!

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!

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!!!

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

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 !

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

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!

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 !

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

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

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

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

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!

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!!!!

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

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

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

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!

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!

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!!!

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!