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
Friday, October 16, 2009
Tuesday, October 13, 2009
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!
We will be there if we are still in town (I think we will be).
Thanks Everyone!
Monday, October 12, 2009
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
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
Friday, October 9, 2009
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
So no travel plans yet! Hopefully iron something out htis weekend!
Erin
Wednesday, October 7, 2009
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
Love and Prayers
Erin
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!
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