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
Wednesday, October 7, 2009
Tuesday, October 6, 2009
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
Thursday, September 17, 2009
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!
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!
Monday, August 31, 2009
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
Saturday, August 29, 2009
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
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
Monday, August 24, 2009
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
Wednesday, August 19, 2009
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
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
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