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