Jones Family

Jones Family
November 2009

Tuesday, May 5, 2009

Brayden's New Routine

For Brayden's friends - we thought this might help you see how Brayden's routine has changed and you can see and learn more about things with him. He wanted to show you some things he thinks is cool. Don't worry - he's okay and remember this helps him feel better.
We've gotten some questions about what this thing is that I keep referring to as his picc-line. Since he wasn't stable when he came to the hospital, this was a quick placement in order for his Dr. to easily draw blood and give him meds intravenously (thank you, spell check)through his arm. In a few more weeks, he'll have this removed and have a port put in his chest. Here's what his picc-line looks like. It doesn't hurt him at all. It's really great to have it that way he doesn't have to feel a needle every time they have to give him medicine or draw blood to check his counts to see how he's doing. The down side is mom has to clean and flush it and give him medicine in it each day in both openings or lumens. We have to be sure it's clean and sterile and not miss a step and be sure we clamp them both closed. The line inside of his arm goes all the way to the top of his heart (but doesn't touch it) so we have to watch it closely to be sure it doesn't get an infection since this could make him very sick.

Here's his medicine. We use alcohol wipes and alcohol hand sanitizer a lot. This helps a lot to kill any bacteria or germs that are around. We have to be very careful when giving him his medicine that our hands are clean and his are too. He takes 24 pills each day; 12 in the morning and drinks 8oz of liquid. He does the exact same at night. He has to take this after he eats so it doesn't upset his stomach. It's actually great that he can take pills now. Before when it was a liquid he really hated one of the medicines. He said it was like acid burning his throat! OUCH! This way, he just does a lot of drinking and swallowing, so we like keeping the straws for him since it helps to gulp the water quicker and get the pills down. After Brayden takes the medicine, you can hear his tummy slosh with all that water!! He's doing great and drinking (on his own) more than 64oz of water a day! WOW!

The medicine makes Brayden's body strong to fight hard against the leukemia cells. But it also makes him VERY hungry! He's really hungry as soon as he wakes up for breakfast and will eat 3 big meals and usually 3 snacks too! We're hoping he's gained some weight back from all that he lost while in the hospital. Since Brayden's body is working so hard, it sometimes makes him very tired too. Sometimes he needs a nap or several rests during the day. He still can't go outside and play but is hoping the rain is gone when he can!!


  1. hi Braden have you played ants in your pants? how do you like your Ds what games do you have. happy trails check the mail. From Lauren bbbbbbbbbbbbbbbbbbbbbbbbbby!

    Hi brayden,I hear you like Star Wars.Who is your favorite character?I love to draw the characters. So if you ever want a picture just call susan lembke.
    love, kyle
    and may the Force be with you!

  2. Dear Brayden,
    Get better soon!
    knock kn0ck...whose there...may...may who...may the force be with you!
    Did you know that I got glasses?Well I did.I had a good time with you on the phone in class today and yesterday.


  3. Wow Bray you are a very brave person!

  4. Brayden you are such a good boy!!! I can't believe that you can drink so much. I am so proud of you. I hope you get to feeling better. I’m praying for you!!! And, I love you! Never forget that.


  5. Dear Brayden,

    Thank you for posting the pictures. I love you and it is great that you are doing better. I am glad. I miss you Bray Bray. Love you. Love Caleb

    I am sorry that you are sick, I am happy you are getting better. I love you all the time. I love you. We pray for you all the time. Ally

    Dear Lord, thank you for letting us see Brayden's pictures. Also, please help Brayden to feel all the way better until his cancer is gone. Thank you Lord for healing him. We love you. In Jesus Name, Amen.

  6. Have you thought of setting up a webcam in Brayden's class at school and one at your home so that he can see his classmates and vice versa?