Sunday, February 22, 2015

Bennett's Post Radiation Disney Trip

Saturday (2.21.15):
We had a successful travel day! His frost plane ride was ok, no tears, he just insisted on holding Mommy's hand the whole time. The entire plane applauded him for beating a Cancer superhero, and the flight attendants have him a bag of goodies! :) I don't know who is more excited about this trip, him or us. Lol! The hotel is BEAUTIFUL. Our balcony overlooks the giraffes and zebras! :) will post pics from each day as we go! Hugs! -mommy nester

Sunday (2.22.15):
Today we began our adventure! Started at Magic Kingdom. We were picked up by our VIP Tour Guide Alexa at 9am and made our way on over. She is awesome and we are so blessed to have her help! Huge thank you to Danielle and Doss for that! :) he has ridden very ride and loved meeting all of the princesses! We are back at the hotel now for a 2 hour rest before we have to be back for dinner and the parade! :) will update more later. 
Back again! Had a meet and greet character dining with Winnie the Pooh and Friends! :) soooo fun! 

Monday (2.23.15):
Today our guide picked us up bright and early at 8am and brought us over to Hollywood Studios! He got to meet Buzz & Woody; Mike Wizowski & Sully from Monsters, Inc.; and Lightening McQueen with Tow-Mater!  We even got in a Frozen Sing Along, daddy just LOVED that! Lol! Super Fun! Back at the suite now to rest before we head back there at 4 for more rides and the Fantasmic Show! Hugs- Mommy Nester

Tuesday (2.24.15):
Today we ventured over to the Animal Kingdom! We had character dining breakfast at Tusker House and got to meet Donald; Daisy; Goofy and Mickey!!! We went on a safari to see all of the animals and even got to see his favorite... Giraffes!!! Afterwards we went back over to Magic Kingdom to see his ladies one more time... Such a busy day! ;) 

Wednesday (2.25.15):
We were picked up at 8:30 this morning and went over to Downtown Disney for our hot air balloon ride before we went to Epcot! It was super fun! Bennett had a fun day riding the rides, meeting Alice from Alice in Wonderland and Minnie Mouse! ;) he crashed before the fireworks show at 9! Busy day! :) 

Thursday (2.26.15):
Today is our last day at Disney.... I'm both sad and relieved all at the same time...it's been an exhausting week, both physically and emotionally. We are so blessed that so many people contributed to make this trip for Bennett one to remember. For the first time in 3 years we were able to see him be a normal child, and it was magical. :) he had an amazing last day visiting Magic Kingdom and hitting up all of his favorite rides. We even saw the princesses a couple of times more ;) the trip was amazing and one we will never forget! Off to bed now, we have to catch an early flight back to Houston. Hugs! 


Monday, February 16, 2015

Last Day of Proton Radiation Therapy!!!

Today was the big day, a day we've been waiting for, our last Proton Radiation day! And we met it with big smiles and brave hearts. We can't thank you all enough for your continued support and prayers through this entire journey. Bennett has had a difficult and exhausting time through this, but has maintained a smile through it all, he looks to mommy and daddy to see how he should respond to things, and we in turn have a smile and are strong because of you all... Which in turn makes Bennett strong. :) We will have his post-radiation MRI Mid-March to see if the radiation worked. Praying that it has! 

We had a roomful of loving family and friends join us today as Bennett "rang the gong" ;) his treatment went as usual, they ended up having to deaccess and reaccess because his line wouldn't draw blood, but it went well. No tears! We had a cake, cookies, and a playroom full of friends to celebrate. Hope you all enjoy the pictures...and I promise to post many more soon as we embark on our post-radiation celebratory trip to Disney World this Saturday! Love, Mommy Nester

Sixth Week of Proton Radiation Therapy

Monday (2.9.15):
We slept as late as we could this morning before heading over to the Proton Center...thank goodness our apt is right around the corner! We checked in, took vitals, and then played in the playroom while we waited to be called back. The machine was down this morning, so it took him longer to go back...once we got back there they accessed him (he did great!), and then they put him under. I'm sitting in the waiting room as I write this waiting for him to wake up.... Praying he isn't grumpy. Lol! 

Tuesday (2.10.15):
We met Gammy bright and early today for radiation, but Bennett wasn't feeling his best. :( little man spiked a fever of 100.4 last night. Radiation went normal as usual, and after we rushed over to TCH for his weekly see with Dr. Peg. All of his bloodwork came back normal, so they just assume that he's got a virus working its way through him. We got back to the apt. and rested the remainder of the day. Hoping he feels better tomorrow. 

Wednesday (2.11.15): 
Well, we didn't have much luck in the fever department last night... It spiked at 102.4. The oncologist oncall that I spoke to at TCH said I should bring him into the ER to check for line infection. I told them they were crazy. Dr. Peg JUST had told us yesterday that his bloodwork was fine and was probably just a virus. After the past 6 weeks he's had I wasn't about to subject him to an 8 hour wait in a crowded germ infested ER. I gave him Tylenol and his fever came down. He didn't eat much and slept little...so he was super cranky when we got to MDAnderson this morning. Grandma and Ms. Tracy came by to be with us for treatment and he made out with some goodies! ;) we don't have any other appointments today because I cancelled his therapies til Friday so his body can get the virus out. Will keep everyone posted! 

Thursday (2.12.15): 
His fever finally broke! :) woohoo! He sweat the last of it out last night!!! I'm so glad, the last thing he needed was one more reason to be fatigued. Mommy and booger are solo this morning, and treatment went as planned. We love the anesthesia specialist Javier, he administered the propofol quickly enough that little man crashed without a fight! So much easier! Spending the rest of our day resting up... Only 2 more days!!!!

Friday (2.13.15):
Daddu and Gammy met us at 7 this morning at MDA. We brought Valentine's Day goodies for the staff :) they all loved it. As usual, he did great! Right to sleep, no tears. I had them keep him accessed for Monday in hopes that his line will last until then so that we don't have to access and deaccess all in one day. Fingers Crossed! After a week resting and recovering we hope he will be ready for his last dose of radiation Monday. :)