Jones Family

Jones Family
November 2009

Wednesday, September 8, 2010

We're on a roll!

Wow - Labor Day? Really?!?!?! We had a great kickoff to the holiday weekend with getting to go to the Drive In. I love that we still have one around. We've wanted to go sooner but there haven't been many kid-friendly movies playing WHILE weather was cool enough to breathe! Thankfully, both worked out timed perfectly. Actually, we got a little chilly! The temp definitely took a nose dive that night after the cold front moved through the night before with some vicious storms Hershey wasn't happy about. We took lots of blankets and snacks and were snuggly buggly in the back of Dad's truck to watch some good movies. We had a GREAT time, even with the cold air and all the dampness clinging to everything...oh, yeah, and driving home at midnight. It was a terrific weekend to do it though, right?

Saturday Brayden & I enjoyed some fun Mom & Son time with a trip south to a great town and our fav mexican restaurant and enjoyed some yummy ceviche! Oh...and he endured a trip to Hobby Lobby. It was good times. In case you haven't heard, college football season kicked off and in the SEC, it's business! So we had ESPN on the radio and he was literally running from TV to TV in the restaurant. Thankfully they weren't busy so it wasn't distracting others. But not only was he trying to keep up with the other conferences, we were on a strict schedule to be back home for our beloved Hogs kickoff! I've gotta say, I've told my hubby before how lucky he is to have a wife who loves football. But this kickoff weekend? By Sunday I was needing a break! My boys were hard core in the arrival of football season. I realized when looking at the sun coming through the windows, the cooler air, and football on - fall is definitely here! Where does the time go....

I was happily scrapbooking while listening to the Hogs on the radio at home that night. It was a great thing to feel like we all had a little more time with the extra day on the weekend. We typically dread Monday's because it's treatment day locally or we're making the drive to Little Rock and it means a 4am morning. Luckily, we all got a Monday off, as the local clinic was closed. So the weekend felt ESPECIALLY long for us and for Brayden. I loved getting some time to scrapbook. Then we enjoyed visiting with our sweet friends who came over Sunday afternoon as well as spending time with family.

Tuesday still came too quickly. We spent Sunday replacing a dryer that, honestly, looks brand new. Bummer...and thank goodness for wonderful friends who are so helpful. Anyway, my adorable, sweet boy informs me at 9 o'clock Monday night (even with a long weekend and me asking the same question on Friday), "Oh - Mom? I have 3 tests tomorrow." Great. Not sure what we can do about that with no time to spare the night before when we had extra time to study this weekend. Please tell me I'm not the only one? Is it a boy thing or a 10-yr-old thing? We're still working on that trying to let go and empower Brayden to be responsible for his work. Oh, that's tough. We want to encourage him to do his best and still hold high expectations. How high is too high?

So back to Tuesday. Brayden had a great time as usual at the local clinic. The oncology clinic is always very full the day after a holiday. It's so disheartening to see so many receiving treatment. I'm wondering if they're starting to dread Brayden's silliness & teasing of the nurses but I'm hoping it brightens their day to see him smiling and energetic and happy to see everyone. Brayden's definitely on a roll! His counts were great again!!!! He's definitely on the right trend to have his chemo increased to compensate for his recent growth. And, man, how many times lately have people commented on how big he's getting?!!? Steroids definitely are helping that but certainly a lot is also genetic with Dad coming in at 6'5". Brayden's doing his part to keep up. We were really so thrilled that Brayden's counts have remained so steady. I've gotten so rattled lately with him having a slight runny nose - most likely allergies like mom - and hearing of kiddos in class being sick already! Yucky strep...Thankfully, he's done great without incident. He was happy to get to go celebrate with another haircut. Wow, now it's really growing fast and thick! He looked like a mini me of his dad when they got back from his haircut. He's so precious!

Poor, sweet Hershey had to go in today for a sedation. Brayden was relating all to her in what he's gone through. She had to have a full cleaning on her teeth. With how docile she is, I'm betting she could have been fine to stay awake. But bless her heart! She's so out of it! I can't imagine putting her through this again next year! Brayden's lost his sympathy quickly for her wondering why she's still so out of it! It's been hours already! By now he's up & running and ready to eat after his sedations! We're hoping she feels much, much better tomorrow and doesn't hold it against us for trying to keep her healthy.

I was looking at a lot of pictures this weekend and came across the pictures from the weeks prior to Brayden's diagnosis and the days and weeks after. Amazingly, I don't even remember doing it, there are some pics of him from the ER that night & from ICU on my old cell phone that I developed. I hadn't been able to convince myself to look through them yet until this weekend. It was so staggering how at the time we thought he was fine yet looking back how fragile he looks. He was so thin in the weeks following and so weak. His little body was put through so much! It's amazing to see how much progress he continues to make. We're so thankful for all of your continued prayers. Each time someone asks me how he's doing, I am reminded of how blessed we are with how healthy he's remained even through the hard times and all the ups and downs and uncertainty. The risks are so great and he's remained on track and doing so well with his treatments.

We've got a big weekend coming up. Have I told you about Son's Day? When Brayden was about 4, he asked us about why there wasn't a holiday for Sons. There's a Mother's Day, Father's Day, Grandparents' Day...what about sons? I told him, "Sweetie - for you, every day is Son's Day." So true. But we kind of stumbled onto something fun and have continued the tradition. We've had to adjust it around this year & last year since it used to be in July. But we'll be celebrating this weekend. Sometimes we completely surprise him with fun activities for the day and other years we've let him plan every detail in advance from what time we get up to what we eat and so on. This year we've been working on some things we'd hoped to do with him sooner but we're glad his counts are good and we can finally celebrate. I can't wait to share more about it later!!

Thursday, September 2, 2010

I feel the need...the need, FOR SPEED!

Friday, August 27th - Little Rock Air Force Base - 53rd Airlift Squadron

Okay, so I'm a doofus in forgetting I already spilled the beans on here about Brayden's Pilot for a Day! I guess the surprise is when it happened? He was SO thrilled to be chosen 1 of 4 boys by his Social Worker at Children's to get to participate in this amazing opportunity. All 4 boys that went are receiving treatment or care at Children's for various reasons. It was neat to meet another Oncology patient & family. Little Rock Air Force Base has started this new program in allowing these kiddos to get to come on the base and be a Pilot for a Day! Last Friday, we started our day VERY early at 4am to drive to Jacksonville, AR, for the big event. Driving up on the base was incredible. We were greeted with a huge C-130 right on the parking lot. I was worried about Brayden touching anything but they were so encouraging that nothing was off limits.

Our pilot guide told Brayden that plane was actually flown in Vietnam. WOW! Getting to meet Captain Jason who is a C-130 pilot was really neat. He exuded that pilot confidence you only see on tv - shades & all!
Seriously, he was a joy to have around us that day and show us what being an Air Force Pilot is really all about. He was so down to earth and it was only when other personnel came in contact with him on the base we remembered, this is the real deal! Captain Jason and Sergeant Tom were amazing hosts and we were honored to be their guests for the day.
Once we met the 3 other boys and their families, we were off to our first stop - the beautiful outdoor museum. There were several plans & helicopters on display along with a time capsule the boys thought was really cool. Seeing all of this up close was surreal to think about how each is used to help protect our country and freedom.

The next stop was touring the EOD - Explosive Ordinance Disposal facility. We got to meet the awesome Ms. Brown (please forgive me for forgetting her title!). She was incredible and really gave me that "You Go GIRL!" moment. She had literally just returned from Afghanistan a couple weeks prior. This phenomenal soldier is actually over there diffusing bombs and working to keep our troops and the people safe from terrorists. If you've seen the Hurt Locker movie (we haven't), she pointed out how accurate it is to what her job really is each day. She demonstrated her bomb suit which weighs over 70lbs. Her helmet alone is 40lbs! It was amazing to hear her tell us how the owner of the company that makes the bomb suits ($50k each!) demonstrates the effectiveness of the suits by putting them on himself and getting blown up on camera to prove how safe the suit is for our troops! Bray thought that reminded him of Ironman.

We were thankful to Capt. Jason for holding up the 40lb helmet so Brayden didn't collapse! The boys were able to tour the mobile command unit and disposal vehicle that they use to respond to bomb threats and that it's also used for some celebrities and foreign dignitaries. COOL! We asked if names of who she's protected is classified. Nice. Next, she introduced the boys to JERRK - Joint Effort Rapid Response Kommand Robot. While she began demonstrating all the buttons and controls of the robot, she was explaining how it is used to help protect soldiers by allowing the robot to get closer to the bomb. It was amazing to hear how they're using this technology to diffuse the bomb in order to be able to use the bomb components as evidence to catch more terrorists. To use the robot & diffuse a bomb is a huge victory in their work. She began to demonstrate how the robot works and was working to figure out why it wasn't moving. The best quote of the day was when Brayden said, "I think the safety is on." Bambi smiled & had to give Bray kudos for being so smart - it was on! Capt. Jason seemed to get as much of a kick out of that one as we did. I suddenly realized why he was over in the corner sitting on a tractor when Bambi handed the controls over to Brayden. He loved getting to maneuver the robot and it's shoulder, elbow, wrist controls to practice picking up a fake bomb. Bambi was amazed at how well the boys do when she's worked with Air Force Pilots who couldn't do that well with the robot their first time. I don't think Capt. Jason thought that was as funny as we did. Meanwhile...I swear I could hear the "Danger Zone" music playing in the background.

We all cheered when Brayden was able to successfully pick up the fake bomb with the robot hand. It's amazing to think if this were a real EOD, it would only take 1/2 lb of pressure to detonate it. How incredible that this is her job!!

I saw Capt. Jason peeking outside through the windows while the boys were operating the JERRK robot and was wondering what he was smiling and in awe about...then I saw it. The SEGWAY!! Capt. Jason was sure to the let the boys know he'd never gotten to ride the segway before. Bambi then showed the boys how the Segways are used to assist them in diffusing the bombs. No wonder - with the 70lb suit & 40lb helmet, the segway is a big help in getting them to the bomb location quicker AS WELL AS getting them away from it quicker. I took some deep breaths & tried not to be the over-protective mom of the group. The boys watched with wide eyes as she demonstrated how to ride the segway. The other mom was in disbelief that someone on base didn't get the memo & parked their BMW out there! No one told them there would be 4 boys on the base learning to drive/ride a segway within close proximity! Thankfully there were helmets and Bambi did a great job of staying right with Brayden. Everytime he'd come close to where he started out, he'd do a QUICK turn and head back out the other way. You could tell he was loving it and didn't want his ride to end.

Brayden's attention as soon as the segway ride ended was on the airstrip right next to us. You could see the C-130's taking off then coming back in to land. Bambi explained to him that this is how they practice and they do routes around Little Rock. We couldn't believe how close they were and it was so neat to watch. Little did we know how much closer we would get! It was really neat to tour the Ammunition Room. There were SO many different bombs & shells and the boys were free to explore. Brayden thought it was really neat to be holding a 50 caliber shell, hand grenades, and this cool bazooka thing he had on his shoulder. We were clueless but the boys thought it couldn't be cooler.

We next headed over to the runway. WOW! Were we ever up close! We were told the media would be there and Brayden wasn't too happy about the tv camera. But being able to climb inside a real C-130 on the runway made him forget about the camera all together! The boys were a flurry of activity being right on the runway & so close to the action of the planes landing & taking off back to back, jumping in the pilot seat & getting to check out all the buttons, the cargo area, and seeing how the real heroes return home from overseas in these planes. AMAZING!

The next stop was to the 53rd Airlift Squadron for lunch with all the pilots! This was really neat to hear stories of those who had just returned from overseas or who was missing because they had just deployed. There was a special honorary 'Winging' ceremony for each boy to receive their very own flight suit, scarf, and token. This was very special and a big deal. Not only did Brayden get to sit with Sgt. Tom & Capt. Jason and enjoy some yummy pizza, the guys really went out of their way to make him feel at home and very honored. As soon as Brayden received his flight suit, he looked to Capt. Jason for approval & took off! I told him I only could hope that Brayden didn't return with his flight suit on with his clothes in hand!!! I definitely made sure to ask about the care of the flight suit & they were quick to assure me they are machine washable. I told them, "Good, because I have no idea how I'm going to talk him into getting out of this thing!" Brayden was so proud to show back up in his very own custom flight suit with his own name badge. Sure enough, he literally wore it the rest of the day, on the way home in the car on the long 3 1/2 hour drive, out to a restaurant for dinner and then couldn't understand why everyone was staring at him!! He just needs his own pair of aviators and he's really set! Cue "Danger Zone" music again.

Next up was a tour of the Air Force Fire Department. It was pretty neat to see when we got there, they were just returning from being out on a call! Thankfully everything was okay, but we found out 2 planes were coming in & 1 engine had gone out and another had a distress call on board. Wow! The boys were allowed to completely explore the fire engine and see one of the men demonstrate the imense fire-proof suit they have to wear. They boys were able to see how if they stop moving, there's a distress signal that is sent and how it has it's own breathing system for the men while they're in the suit. Brayden loved being able to climb into the fire engine and explore all around. Everything was SO BIG there!

After telling the boys about how much water the BIG fire engine holds, they took them outside and let them climb into the monster. I wish I remembered what it was called, but we thought it was really cool how this thing can shoot water inside the plane in case of a fire. They warned the boys not to be close by when the water shoots out! Each boy was allowed to sit in the driver's seat & push the buttons to spray out the different water shoots depending on the type of fire. It was really neat to see how high the sprayer would go and how loud & strong the water was!

Oh, our final destination. The boys knew it was coming yet no one was prepared for how amazing it was. THE FLIGHT SIMULATOR! We had an instructor who is the most experienced on C-130 training and explained to us how this is how all pilots are now trained. They only fly in an actual plane 1 time before their training is complete. It costs nearly $6MM to train 1 pilot and only 1 hour in the flight simulator costs $20,000! Needless to say, the parents were all thankful for the 1 hour our boys got to spend but I know I felt a little guilty about the cost - WOW! We were surprised to learn we'd be able to go with the boys - 30 min flight, 6 people per trip, so we broke up into 2 groups. Brayden was the youngest boy that day but letting others go first was something his excitement erased that day! He was out the door first already on his way to the simulator with Capt. Jason. This thing was AMAZING! I'm getting dizzy just recalling it. You really felt like you were in a plane. The computer has so many abilities to make it any type of weather environment, any time of day, any location. Brayden got to start out taxiing down the runway of the actual Little Rock Air Force Base! It was SO realistic! He got to take off and I looked at Nini & the other Mom and realized what we were in for! Thankfully the instructor was at the computer to help 'lessen' the impact we might have felt of some of the maneuvers Brayden tried. I kept reminding him to listen to everything Capt. Jason was telling him and was SO thankful he was in the co-pilot seat. Brayden got to fly closer to the simulated downtown Little Rock, circle around, try to land, and then took back off again without stopping!! It wasn't too much longer he was starting to realize he was really in control and took a nosedive! We really felt it and thankfully the instructor helped stop the simulator before we all felt the effect of a crash! Here are some of Brayden's quotes from his 'flight':
  • "SWEEEEET!!!"
  • "You guys, I'm probably never going to be a co-pilot again!"
  • "Hope there's an emergency brake in here!"
  • "Mom, are you seeing this?"
  • "Should I get the oxygen tank?"
  • While taking a dive..."I just did that to get you guys' attention."
  • "Yeah, uh, I was crashing from 30,000 feet, but at least I landed on soft grass"
  • "Uh, Captain Jason! Help me here!"
  • Then, on the way home later while recalling the incredible events - "I really flew that bird"
The next boy got his turn to 'fly' and the instructor worked with him to refuel in air from another tanker! So cool. I sat by the control panel and got to see Brayden's flight path (big circles!) and kept marveling at how amazing this all really is! This is Brayden's picture that the Editor of the Base Newspaper took and displayed on their website for the event.

What a day! I've never been so tired on one of our trips to Little Rock. But it was SO worth it. Brayden insisted on keeping his flight suit on and was exhausted & snoozing before we were too far away from the base. We were sad to say goodbye to these real life heroes who went so far out of their way to celebrate these special boys fighting their own battles at too young of an age. This was truly a dream come true for Brayden and he knows he got to do things many people just wish of being able to do! It was an honor to meet each soldier and we owe them a huge debt of gratitude for their service. We feel like thank you is just not big enough but THANK YOU for this incredible honor of being able to spend this incredible day with you! Thank you to ACH and Carrie for nominating Brayden to be able to take part in such a special event. Thank you to everyone at Little Rock Air Force Base for making us feel so welcome and allowing us to see Brayden so full of joy and excitement and getting an escape from his battle. Special thanks to Nini for going with us, helping to capture all these important and once in a lifetime memories, quotes & pictures, as well as helping to keep me awake on the drive home! I hope you all enjoyed sharing in Brayden's amazing day. I didn't think we'd ever be able to sum it all up since we were on overload from all the neat things he was able to experience. PS - we're already thankful the flight suit is machine washable!!!