Jones Family

Jones Family
November 2009

Sunday, August 23, 2009


Sorry to leave everyone hanging! Children's lost power Wednesday around 10 and we didn't get our tv or computer back until the next morning. I wasn't sure what to say at that point and my hands were very full. Wednesday night Brayden's first blood draw showed his levels were good - medium. They wanted to ensure the chemo didn't leave his system too quickly, otherwise, not enough time to take effect and do it's proper job in interfering with the cancer cells' growth cycle. We were happy about the first draw. However, through the night they gave Brayden a recovery drug and had to page his Dr. to see how to proceed. Instead of his levels dropping at the next draw, they actually increased. Bizarre and something I actually asked about before that happens, but isn't frequently seen. It was at that point I began to grow skeptical about our getting to go home Thursday. We were up every 2 hrs testing output (or as Brayden calls them, his 'commercial breaks' if you remember from before!) and I was finally getting him to drink more. He was getting 6oz down with each bathroom break. So I was hopeful he'd get it all flushed out of his system. Thanks to the recovery drug and Brayden's drinking more water through the night, finally close to noon we learned his levels were low enough to go home. Here's the catch: Brayden woke up Thursday morning very sick. He couldn't keep his morning meds down the first time and a couple hours later had a repeat episode of just water coming back up. My heart wrenched. I was really worried. But thanks to the second anti-nausea drug, he started feeling better. The bad side? I completely forgot how it messes with his emotions and makes him so off-balance and loopy. He wouldn't sleep at all and was just ready to go home. We were so thankful that he finally kept down about 10oz of water and finally some chocolate ice-cream and got to leave at 3:00. The staff was SO supportive. Everyone knew of his pending trip and he had enough about 1 and was just ready to go. It was the first sign I had from him all week of how exhausted and stressed he was and he had enough. He had been looking forward to this getaway and didn't think he could take another night in the hospital. I didn't know what else to do. I just crawled in his hospital bed next to him and held him and hugged him and reassured him we'd still go, even if it was a day late or 2 days late. We'd go again, no matter what it took. So finally getting the green light to go at my discretion (yikes! no pressure there!) was such a relief to both of us, but left me trying not to push it and get him out TOO fast. That's why I was glad when he started keeping things down so we headed out.

We called dad with the good news and headed home! We couldn't get there fast enough and I was SO relieved he did great on the trip home and actually ate finally with no nausea! We got home, filled oral chemo meds and other prescriptions, unloaded, re-packed and re-loaded, and headed for our Branson getaway! The weekend was AWESOME! We had such beautiful weather; low 80's, totally sunny, no rain. His Dr. had prepped us with how to make the most of the weekend (spf 100, minimal sun, swim early or late, eat outside, etc) and we had our plan! We had lots of funny moments: almost catching the microwave on fire, the automatic coffee pot LIED and said it shut off in 2 hrs and SO DIDN'T, the ceiling light cover falling off on Brayden's head WHILE he was in the shower, dad not knowing how to work the thermostat and waking up to 53 degree temps in our condo, and finally a skunk deterring us from our evening mini golf game! We still made the most of it and had a great time. Brayden got to float the lazy river and for Brayden, this meant running the river as fast as he could! He jumps in with both feet to all he does and that especially meant this weekend with FINALLY getting to enjoy the summer and SWIM! We had so many smiles and hugs and thank-you's this weekend for his appreciation for the getaway. We had a ton of fun with our friends joining us for a bit on Saturday and Brayden bursting with laughter at every little thing Uncle Danny had to say!

We were both excited and sad to leave today to come home. Brayden (after enjoying breakfast on the balcony) said, "This is the most fun I've had in my whole life!" You've gotta love the 9-yr-old short-term memory. But we also realize how differently he views life and certainly appreciates things more. He got to do the Titanic tour today and had been asking to do this for quite a while. While standing in line, a nice gentleman was asking Brayden about school. I let him continue the conversation, internally struggling with whether to interject, change the subject, and protect my sweet boy from the normal question that for Brayden can be intrusive as it sheds light on all that has changed for him. He responded with such maturity and never skipping a beat. I was thankful he was able to answer the questions the gentleman asked without having to reveal all that he is really enduring and able to feel a bit normal for a few days this weekend. I tried to keep my paranoia at bay with all that he was subjected to. We still took many precautions, but I wanted him to have those normal getaway experiences. I still wondered when people looked at him or saw him if they knew. I was thankful he still had his hair and wasn't having to worry about those stares or questions that come with it. For now, he was normal again.


  1. Wow, sounds like you had an awesome time in Branson! The picture of Brayden in the pool is A-W-E-W-S-O-M-E!!! The scrapbook journaling will be filled with all the mishaps from the trip - but memorable none-the-less! Love you guys!!! Amelia, Eric and Andrew

  2. He looks really good! Glad that you guys got a chance to get away for a bit.

  3. What a great weekend!!! I was hoping you would be able to go. So glad you all had a great time, can't wait to hear the stories in person. Webcam this week?

    Trish, Ken, Grace & Logan

  4. I am so glad you got to enjoy the weekend with such great weather too! I love it when a trip is memorable even with the hiccups of crazy you had. I'm glad Brayden enjoyed the getaway and that he could pretend he wasn't going through cancer treatments. It really is all about the little things which carry us through.

  5. Wow, it sounds like you had a great time. Did you enjoy the Titanic? I haven't got to see it yet. It's so glad to see you got a chance to swim, miniature golf and do some other things that I know you have missed. We sure miss you at school and can't wait until you are with us again.
    Keep strong, hold on, and don't lose your joy. God IS with you every step.
    Mrs. McCall

  6. hi!
    Looks like you guys had fun. I'm sure Brayden loved it. Your blog is a great inspiration for people who have kids with cancer, and I’d love for you to share your past and upcoming experiences with others through Wellsphere’s HealthBlogger Network (HBN). With the HBN, you can connect with other people and encourage those are going through the same thing.

    For more information about joining, check out or feel free to e-mail me at hua [at] wellsphere [dot] com.

    Director of Blogger Networks

  7. We sure do miss Brayden at school. I peek in his classroom every day to see if I can collect on a hug, LOL :) God has brought you through so much and will continue to be with you guys. I cannot tell you how much Brayden is missed at school, you know poor Logan and Ben are the only boys in a sea of girls! Love to all 3 of you.
    Mrs. Campbell

    I am working on getting myself set up as a follower.

  8. I personally love the photo in the rocking chair. i thought maybe it was from a clip of the upcoming Johnny Depp version of Alice in Wonderland? I am so VERY glad to hear the Getaway happened. I am convinced that nothing makes me "chill out" faster than a escaping from my realities at home, a little sun and some cool chlorinated water on my skin! I still long for a job when we start counting the days down until summer break... if only eh? I am thrilled that Brayden got to hit the pool. It is definitely one of life's thrills! Thinking of the Jones'. K.Zank