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!