Jones Family

Jones Family
November 2009

Tuesday, April 28, 2009

1 Week Down

Today was a VERY busy day. Brayden's having his 2nd unit of blood going in right now to complete his transfusion. We had visits from the school teachers liaison on staff to go over some steps to ensure he graduates from 3rd grade and we're not sure yet how 4th grade will work. As of now, it will be Jan 2010 before he can go back. Stats are all still good today. The social workers brought him his beads. Each patient gets "Beads of Courage" through a program here. He really loved that but it was hard on mom hearing them recap all he's been through so far to give him the beads he'se earned from everything over the past 7 days. They completed his ecko check-up on his heart today. He had a tent-like breathing treatment to prevent pneumonia when we go home. There are a lot more preventative meds going on. The home plan, calendars, meds schedules, preventative care, etc happened today and we'll definitely have to be more organized than we ever thought of being to keep up with it all. There's a lot to remember.

Honestly, Bryan and I are totally feeling so much pressure today. Not just from the diagnosis but working back into a rhythm of life. There's still a lot to do at home and honestly, I just want to watch Brayden like a hawk and not worry about anything else. There's a lot of maintenance things we have to help him with we've not really talked about yet. Plus getting the house ready and realizing we've got to figure out work and a schedule in all of this. We've learned with him being in isolation, visitors really aren't optimal. You can't be sick or have been around someone that's sick or has a fever. Bryan and I can't come in without first changing clothes and showering. We have to limit Brayden's outside time and he'll need to wear a mask when he does, just like here, and have to wash the clothes he was in. We have to really be cautious 48 hrs after chemo with handling everything. I can't imagine how tough this is really going to be. His cousin's birthday is in two weeks and it looks like we'll miss.

Thanks to our friends Trish & Ken for getting our mail! It's the basic little things that slip our minds while in here! Thanks to Grandma Sue & Aunt Sandy (the youngest & best-looking great grandmother of any patient here!) for visiting! Brayden loved the books and Star Wars Legos! Dad has already been digging into the basket of goodies and I can't wait to use the adorable stationery. Thanks to Mrs. Wendy for the incredible Star Wars pics with Brayden in them! Thanks for the book - you are a true talent and those pics of school and all his friends were a treat. He poured over it twice. Thank you, Mrs. Melanie for the cool posters! He was so pumped over the Romo poster! Momma's got a lot of work to do at home to find places for all of this.

Prayers needed: somehow I missed that he'll have a bone marrow aspirate tomorrow and another spinal. I think this shows I'm officially out of energy reserves and stressed more than I realize. Very few kids do, but some have been known to go into remission after only the 8th day. How awesome would that be? They'll also do the spinal, check the cells again, and do another chemo shot to work against the leukemia cells that were found in his brain. He'll have another iv round of chemo tomorrow to fight off the rest of his cells in his body that are bad and we're still praying with the transfusion given today that he'll be ready to fight without compromising the good cells and organs. We're praying today's ecko will bring good results tomorrow with his heart. Please pray for me and Bryan. I haven't yet asked for this because I didn't want to be selfish. It's going to be a long drive tomorrow in separate vehicles. There will be a very nervous momma looking in the rearview mirror at my sweet boy in the back seat hopefully not more than I'm looking in front of me. There's a lot to do with picking up rx, and making sure we don't miss a step with him. I'm going to have to keep myself in check and not get overwhelmed or stay up all night obsessing about doing so many things to be sure he's in the most protected environment. And then there's work. So please pray for both of us as we sort all this out for guidance and peace and strength. Thanks to you all and sending love to all of you from Little Rock...


  1. Many prayers coming your way...

  2. More prayers coming right up. I can without a doubt say you are the most unselfish people I've ever met. Ask for whatever you need, we'll all be here to help. Travel safe tomorrow and call should you need anything.


  3. Brayden,

    We pray for you everyday on the way to school and every evening at the dinner table. We are praying for your mom & dad too. We are so glad to see how God is working in your body!! We miss your smiling face around ACA! Erin says hi and she hope you are feeling better every day!

    Tom, Becky, Andrew, Ben, & Erin Ottaviano

  4. Brayden, you and your family are continually in our prayers and I have been putting you on many prayer request. You are lucky to have such wonderful parents and family that love you sooooo much. God is watching over you and keeping you safe. Keep smiling that sweet smile of yours. :+)

    The McCloskey's

  5. Hi Brayden,

    Get well soon! Good job destorying the Death Star! I knew if anyone could blast it away you could! Have fun playing your new DS and may the force be with you!

    Love, Lauren S.

  6. Keeping all of you in my thoughts and prayers. Lisa and Bryan your strength together is very powerful with faith added in you will prevail!! If there is anything I can do please let me know.

    Brayden since you are such a star wars fan may the force be with you always!

    Love, Shanna Tucker

  7. Get well soon Brayden! It's not the same without you. We can't wait til you get better. I wanted to tell you this joke, that I made up; what's a hamburger called without cheese? A cheeseless hamburger! Haha!
    ~ From Elizabeth

  8. Brayden,
    Ben says hello and that he sure misses you at school. Lisa and Bryan, we are lifting you up in prayer for continued strength and courage throughout this journey. God's peace be with you both,
    Daniel, Gina and Ben Allen

  9. Hi Brayden,

    We are praying that those medicines will keep stomping out those crummy cells and that you won't feel too lousy while it is happening. We will look forward to seeing pictures of you on your bloggie!!

    Love in Jesus,
    The Butler gang (Kristin and Karrie are "big" girls at school and Katie is praying for you from Conway. You were a kindergarten boy when she was at school.)