Jones Family

Jones Family
November 2009

Wednesday, May 6, 2009

Last night I had a dream...

Brayden woke up and shared this with me. I asked him if it was okay to put on his bloggie and he said YEAH! I thought it would be helpful for everyone to hear where he's at.

"Last night I had a dream. I got up today and went back to school. It was pretty embarassing because I didn't have hair. But no one laughed at me. They know I had cancer."

School is so important to him and he misses his friends, teachers, and everyone so much! But I think he knows how much you all love him and support him and care about him and don't care about the 'stuff'. Thank you for all your love and support. There's still a long road ahead.

So we're back from Little Rock and our visit today to the Hem/Oncology Clinic at Arkansas Children's Hospital. PS - Thanks, Gracie! Champ went right along with Brayden today!! I can't remember if I've mentioned it before, but Brayden's nemesis? The long picc line and frustrating tubes? No. The bone marrow aspirate with the crazy long needle and insane medicine? No. The horrible chest tube that literally touches the tissue inside his body and has left an ugly bruise? No. The spinal taps? No. Chemo treatments? No. Not being able to breathe and racing heart rate? No. Not once has Brayden complained. Until...the nemesis showed it's ugly face. What do you ask is this crazy thing that has this power over Brayden? TAPE! It's the first time he's hurt or complained or had some tears. That hair on his arm is NOT cool when there's layers of hospital-strength tape! He cracked me up when we walked in today and said (Quote of the Day, in case you're keeping track) "Tape again - my nemesis is back."

Things went really well today. We were so surprised that 5 1/2 hrs were spent in clinic when we (seriously) thought a quick hour and we'd be out. HUH!?! We'll spend all the time we need if we have good visits like this every time. His Dr. said he looked really good! No mouth sores. His chest tube scar is closed up and healing nicely. His left lung (that had all that trouble the first night in PICU) was totally normal again and no issues. He's gained his weight back that he lost while in ACH! (They warned me he would; I didn't believe them. He's so skinny and had lost so much weight I could see his ribs not only from the front but from the back. I'm so thankful his body is healthy and he's having good nutrition. All the steroids aren't hurting either!!). They did his bloodwork and after the chemo regimen was completed 3 1/2 hrs later, they told us his counts were good. He's still Neutropenic but not in the scary, danger zone. This is why no visitors and so much restriction on his mask and why Bryan and I have to be careful of not passing any germs along to him. (PS - I'll have to share some time how I'm going to start begging for anxiety medication the next time I have to go Grocery shopping. It's amazing how differently I see things now).

Anyway, I'm rambling! It was honestly a nice drive. Everything was so beautiful and green on the way home and Bryan was saying it's honestly a beautiful drive. The sun had come out and he was able to enjoy the scenery (while Brayden and I enjoyed the trip with nature's sunglasses on: our eyelids closed). It looks like good news all the way around! We're thankful for everyone's prayers. Thankful for Brayden's good progress and response. Thankful for a safe journey and being back home!

We're starting a list for Brayden. A list of things he would LOVE to be able to do now but can't. And it's amazing how the little things mean so much. I can't wait to share it with you and we'll keep adding to it.

Love to everyone....


  1. Hi Brayden, your new schedule sounds tough. I miss you and can't wait to see you back in class. from Ben

  2. Brayden,
    I cannot believe how well you are doing!! Each time I read your blog, I learn something new, such as why keeping the picc-line clean is so important. I have a great deal of respect for you and your parents. Please keep the updates coming!

  3. So glad to hear your trip went well, and that his bloodwork looks good. Tape, huh- who'da thunk? I guess it always comes back to the little things doesn't it, they're either things that mean so much, or the things that annoy the fire out of ya. We can't wait to see the list.
    Love- Trish, Ken, Grace, and Logan

  4. WOW!!! I am so excited for you. It is amazing of how good of a trip you had. Enjoy it. I have to go but, I wanted to comment for Bayden. I love you guys.


  5. Wow! Good news on the great trip. Hospital tape, huh? I bet that IS a PAIN! Hang in there though. You're tough, Brayden!

  6. Lisa, it is such a blessing to witness God at work! Thank you for allowing me to share in Braydens miracle! Faith bought him a post card from the miltary park. It is so sweet to see the children care so much for each other! We are praying for you daily! May God exterminate all the germs in your home!

  7. Hey Brayden!

    I haven’t posted anything on here in a while. So, I wanted to let you know that I have been reading it! Your bloggie is bookmarked for easy access and I check it daily. Sometimes, it’s Jean that notices a new posting. She yell’s, “DAD! They updated the blog!” with lot’s of excitement and her voice trailing off toward the end as her mind get’s distracted with reading the new posting. When finished, she mutes the TV or finds me, wherever I am, and paraphrases the update. Did I mention, with a lot of EXCITEMENT?

    I am soooooo HAPPY that you are doing so great!

    Lot’s-O-Love and hug‘s,

    Great Uncle Jerald