Jones Family

Jones Family
November 2009

Sunday, July 5, 2009

Happy Force of July!

For those of you who didn't know, a lovely cable channel had a special Star Wars Marathon weekend. How do I know, you ask? 3 guesses...since we have the biggest Star Wars fan in the house. This was their promotional tag line, so I can't take credit for it. Other than clearing up any unknown Star Wars trivia I didn't yet know the answers to this weekend, we actually were able to have some fun times! Brayden had a great question on Friday, which lead to the Quote of the Weekend.
"So how old are we?" "We?" I asked. "Our country." "Oh, great question! I think that would be a fun math problem to try out!" So when we got home, he grabbed the calculator - which I didn't think was that funny as it defeats the purpose of trying to keep him engaged in learning. After he finished laughing, he grabbed a pencil and paper and went to work. "233 years old! WOW! We're old! We're older than...Elvis!" Whoa, there. You have some family close to you that's in the Elvis age-range that little statement might offend.
It was definitely a cool question to ask. We've tried each year to reinforce the real meaning of the holidays and celebrating the privilege of freedom is a big thing to be thankful for.
We were SO thankful to make it a full week without losing any meals, if you know what I mean. The new meds they put him on for the anti-acid is definitely helping. He hasn't complained once this week like he had on-going the week prior. I'm hoping that helped. Plus, with the distractions of help of additional anti-nausea meds, we've made it through so far, so good. The biggest distraction of all was planning what he wanted to do for the 4th weekend. We rented some movies Thursday and had a HUGE campout in the living room floor on Friday night. You should have SEEN the look on his face when dad pulled the full-size mattress of our guest bed and brought it into the living room! I thought sleeping on it would be fun for him. The storms woke him up at 4:30 and not going back to sleep the rest of the day after only 5 hrs of sleep had mom and dad BEGGING him to take a nap. But this mattress became his trampoline, light saber training ground, football endzone, you name it. Bryan and I were trying to figure out a way to bottle this energy that came out of nowhere! We were telling Brayden that and he explained to us that would mean we would need an IV to hook up to his PICC line to do that! Of course...if only it were that simple.
Part of his big plan was to get to go to the fireworks stand. So we talked about the plan and that wearing his mask was a MUST! We'd go late for hopes of a smaller crowd, and he'd have to not touch, and clean-up when we got home. He was so excited. Not even 1 minute after walking in, he grabbed my arm and whispered he didn't think he could do this. He was getting stares from everywhere. There were some boys his age around that were just gawking and he was about to break into tears. I put my arm around him and we trudged on as I reassured him they were just curious about the mask and encouraged him not to let them ruin his fun. He made it through and we hustled back to the truck while dad paid for everything. We talked about it quite a bit, over and over. This was tough, because it wasn't like a non-crowded movie theater or being dark where no one could see him. This was a bit more obvious and it was the first time he was hit with those feelings. My heart just broke for him. I know being in clinic is so much easier because the kids there are like him. It was a glimpse of how re-entry into normal life again might be more difficult than what I had originally thought. I'm definitely praying for him.
So we trudged on with our 4th plans. We had a fun get-together with Nini & Papaw at our house. We enjoyed a show put on by dad and Brayden had fun getting to do a few things. We had to laugh again at the mosquitos - if they bit him, what did they get in them from biting Brayden with chemo meds in his blood?!?! I was worried the smoke might be too much, but we tried to relax and have fun and let him enjoy the fun time like he would any other year.
Sunday everything definitely caught up to him. He's been pretty sore after all the running around he was doing. He told us he used up all his gas from all the running around he'd been doing and why didn't he save some? Too funny...
We've been a little worried today. He's looked so pale. But he's eaten SO healthy today and done so great with all the water he's drank. We'll find out an update on his CBC's tomorrow as well as continue the last 4 days of this dose of the ARA-C. We're praying the next several weeks as the effects of this round continues to settle in, that his counts stay strong and he doesn't have to be hospitalized for fever or secondary infections. Pray for me...I get to change his PICC line dressing on my own tomorrow for the first time. I've watched the nurses in clinic do it, but the good part about being home and not going back to Little Rock for 3-4 wks had an adverse effect with mom getting the responsibility of this stressful step. I'm sure it will be just like flushing it when we first got home and taking care of it...once I've done it, it will become like second nature.

1 comment:

  1. Our Sweet Brayden,

    Thank you for the most wonderfully memorable 4th of July ever! Papaw & Nini had a wonderful time & are so grateful that we got to see you & spend time with you. It thrilled us to hear your giggles when Daddy would light the fireworks & then take off running so fast! Your laugh & giggles are pure music to a grandparent's ears & made our day! Nini laughed so hard that my tummy felt like I'd been doing sit-ups later! Especially when you used the red, white & blue light sticks that Mommy bought to surprise Star War light sabers! What a hoot! Days later, I'm still giggling at the thought of it! Thank you for sharing your day with us! We love you beyond words!

    Nini Nett & Papaw David