Hello All
We arrived back home late Saturday night from San Diego. Southwest lost our luggage, so at least I didn't have to start the laundry yet! It was returned late Sunday so no more excuses Monday night will be laundry night.
We had a great time in San Diego, my parents got a house Bayfront, so the boys could run in and out to the sand and water all day long. They loved building sand mountains (almost as much as there dad loved it!). And we spent two fun days at lego land. All in all we didn't do to much, just hung out on the beach and relaxed - well as much as you can relax with Shaun around. The weather was beautiful and we had a great time. Big Ben got to go Tuna fishing and had a blast. I'll post pictures probably tonight or tomorrow, but I wanted to get in a quick update to let you all know we were back and that we had a blast!
Ben has been very moody and a little lethargic since we returned but I am hopeful he is just tired from the fun week. His MRI is scheduled for August 12th but I called his oncologist to see if she wants to move it up, we will see.
Special thanks to our neighbor Mr Tom who mowed our lawn while we were gone - Ben was not looking forward to coming home and battling the jungle that should have been there! So thanks Tom we love you guys!
On another note two more very special DIPG kids earned there wings this week, Brianna Sharp (Illinois) & Caleb Spadey (Oklahoma). Please pray for there families during this very difficult time.
Love to all
Erin
Monday, July 27, 2009
Tuesday, July 14, 2009
HAPPY BIRTHDAY SHAUN!!!!
Well today is Shaun's third birthday. He had a GREAT party on Sunday with lots of his and Ben's friends from school, his cousins, and kids from the neighborhood. The kids had a great time in the pool and on the largest water slide I have ever seen! It was almost as tall as our two story house. And of course the adults had a great time too, eating some delicious crabs that Big Ben boiled, and going down the giant water slide of course! Ben's cousin Blake and his family came down from Memphis for the weekend and it was great to see them and have them at the party.
Saturday Ben had his T-ball party and he can't wait for next season, Ms Jessica said she would coach again...YEAH!!!!! We have a busy week this week preparing to leave for San Diego. And Ben has clinic tomorrow. Probably a long one, because he has to do his pentanamine treatment, have blood drawn for counts, and see the doctor, plus we have his appointment with the eye doctor he has been seeing since diagnosis that is monitoring the turn of his eye that was causing his double vision at the very beginning. But his eye looks good so I am not worried.
I try to keep Ben's blog as positive as possible I think its important for us to maintain a health and happy attitude and try not to dwell on the bad things, but the reality is Ben has brain cancer and alot of other kids do too! The DPIG community (Ben's diagnosis) has had a very difficult couple weeks loosing 9 kids in the last three weeks. And there are others who are in desperate need of your prayers, especially our dear friend Luke we have been following his journey since the beginning, he was diagnosed in January (two months after Ben). He is in the hospital and having alot of pain. Please keep this family in your prayers we really need a miracle for Luke right now. If you want to check in on Luke this is his site http://www.caringbridge.org/visit/lukepollok . All our kids need your prayers but Luke needs a few more today.
We are so lucky that Ben has responded to treatment as well as he has. He has had little to no side effects and his life is pretty much that of a normal 5 year old except for all the doctors appointments, taking pills, being a little less coordinated than he would like, and a little more tired than most kids (yet he still has MUCH more energy than his mom!). So thank you for all your prayers, Ben is doing so well and we are excited for that to continue. Like I said last time his next MRI is August 12th and he will be starting Kindergarten shortly after that. I'm still a little nervous about Ben starting a new school, I don't think I have to tell you all how much we all love Brighter Horizons and how nice it is to be able to go to work and KNOW that he is being watched and loved there as much as he is at home.
We probably won't post before we leave, and not sure if I'll post in San Diego or not, might not take the laptop - oh who am I kidding I can't be away from facebook for a week!
Love always
Erin and the family!
Saturday Ben had his T-ball party and he can't wait for next season, Ms Jessica said she would coach again...YEAH!!!!! We have a busy week this week preparing to leave for San Diego. And Ben has clinic tomorrow. Probably a long one, because he has to do his pentanamine treatment, have blood drawn for counts, and see the doctor, plus we have his appointment with the eye doctor he has been seeing since diagnosis that is monitoring the turn of his eye that was causing his double vision at the very beginning. But his eye looks good so I am not worried.
I try to keep Ben's blog as positive as possible I think its important for us to maintain a health and happy attitude and try not to dwell on the bad things, but the reality is Ben has brain cancer and alot of other kids do too! The DPIG community (Ben's diagnosis) has had a very difficult couple weeks loosing 9 kids in the last three weeks. And there are others who are in desperate need of your prayers, especially our dear friend Luke we have been following his journey since the beginning, he was diagnosed in January (two months after Ben). He is in the hospital and having alot of pain. Please keep this family in your prayers we really need a miracle for Luke right now. If you want to check in on Luke this is his site http://www.caringbridge.org/visit/lukepollok . All our kids need your prayers but Luke needs a few more today.
We are so lucky that Ben has responded to treatment as well as he has. He has had little to no side effects and his life is pretty much that of a normal 5 year old except for all the doctors appointments, taking pills, being a little less coordinated than he would like, and a little more tired than most kids (yet he still has MUCH more energy than his mom!). So thank you for all your prayers, Ben is doing so well and we are excited for that to continue. Like I said last time his next MRI is August 12th and he will be starting Kindergarten shortly after that. I'm still a little nervous about Ben starting a new school, I don't think I have to tell you all how much we all love Brighter Horizons and how nice it is to be able to go to work and KNOW that he is being watched and loved there as much as he is at home.
We probably won't post before we leave, and not sure if I'll post in San Diego or not, might not take the laptop - oh who am I kidding I can't be away from facebook for a week!
Love always
Erin and the family!
Sunday, July 5, 2009
Fishing Trip Pictures
He's such a cute little Fisherman!
Too Cute!
Of course he got to drive the boat even though he couldn't see over the console! Thank God for auto pilot!
Tell me this little boy didn't have an AWESOME time!
So as you can see from the pictures Ben and his dad had a GREAT time on there special Father/ Son fishing trip made possible by The Way Outfitters. We want to say a special Thank You to the Panhandle Chapter of The Way Outfitters and especially Pat Anderson who arranged Ben's entire trip and was there everyday for lots of FUN!!! Also thank you to Hook'em Up Charters Capt. BJ Burkett and fishJambo.com Offshore Charters Capt. Mike Falzone both out of Panama City Florida. And to all the other friends and chapter members who made the boys trip so amazing. Some fabulous memories were made that they will have forever.
Ben had a great week at camp again. He is on day 5 of chemo right now so he's a little tired and week, but thats not enough to keep him out of the game! He had a fun sleep over at his cousins house Friday night, after a full day of yard work and swimming with Dad and Shaun. Thanks for the swim date Ms Kim and Mr Tom we had a blast. Grandma came to town yesterday for a week of Camp Brighter Horizons fun! And then we are off to San Diego for more Beach fun and yes BIG pizzas - we just found out Uncle Mikey gets to come too -YEAH!!!
Its been a rough couple weeks for the DIPG community we lost 4 precious kids in about the last two weeks and there are two more having a very difficult time right now. Its difficult for Big Ben and I when we hear of how much these kids are suffering. There is a little guilt because Ben is doing so well, and there is a lot of fear that we may have to face what they have faced. Please keep all our DIPG families in your prayers. Ben's next MRI is scheduled for Aug 12th - right before Kindergarden starts!!
Love to all and I will try harder to update more often.
Erin
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