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