Jones Family

Jones Family
November 2009

Wednesday, September 16, 2009

Day 3 Update

Brayden had a great night last night. His blood work levels at the 24-hr point were good. It showed the Methotrexate levels weren't too high to where they had to raise his hydration, but weren't too low to be concerned that it hadn't been in there long enough to do it's job in fighting the Leukemia. He slept til about 9:30...and have I ever mentioned how Brayden giggles and laughs in his sleep? I got up at 5 to grab a shower and get cleaned up after helping him get settled back. I was sitting in the quiet watching the rain and then heard him. It's precious and makes me smile now just thinking about it again! He will just spontaneously giggle and smile! I wish I knew what he was dreaming about. For now I'm saying prayers of thanks that our prayers that his joyful spirit will be protected from the harm this disease can bring are being answered.

After getting cleaned up, Brayden was excited to get to go to the school here on-site while mom got the room freshened and bed changed. They are so great with the kiddos. We also heard the therapy dog was at the Playroom today, so we'll make a stop and say hello. He's been saying all week how much he misses Hershey. All the folks here are so great. Several volunteers bring in their dogs as a special treat for the kiddos and it's precious to watch their little faces light up! The dogs have such a gentle nature with all the special kiddos here and it's so miraculous to watch them interact with the children and loving on them. The teachers are so encouraging yet patient. They were quick to remind me last time they don't coddle as they scooted mom on out of the classroom! It's really amazing all that they have to offer. We are always blessed with visits from Brother John while here admitted or in clinic. He's the Chaplain for the Unit and I've remarked before how much he must see, as he remembers so many of the names of all the children and never misses a chance to visit with us and see how we're doing. Unlike other units, this one with all the workers and staff develop strong bonds with all the kiddos. It isn't like other floors where they may come and go. Kiddos here can be here for years with consistent visits back and forth. As we continue to learn the staff more and more, Brayden loves the recognition and teasing he gets from them in the halls. Arkansas Children's Hospital really is becoming our home away from home.

I was a little nervous because today is the same day 2 rounds of chemo ago (when he had the spinal) that he was most nauseated. Thankfully, we're not seeing those symptoms this time yet. His sweet Nurse posted all the times in which his blood draws will be coming today and when the rescue drug will be administered if his levels are still too high. Due to post-hydration rules, the earliest he COULD go (if his levels were low enough) would be 10:00 tonight, so it looks like another night here, which we expected.

For now, we continue to be thankful for no mouth sores and are so grateful to see the light at the end of the tunnel for the last round of High-Dose Methotrexate! I'll run for now and probably won't post again until we return home. It's a big day of school work again, lots of drinking to get all the toxins flushed out, and possibly some peeks of sunshine for the first time this week!


  1. Brayden, It's so great to hear the good reports that keep coming in. I'm also thankful that you still have your sense of humor and joyful spirit through it all. I heard about your peek through the classroom window. That's a pretty clever way to get to see your classmates. We can't wait until you are back at ACA with us. Keep up the good work of drinking the water and tackling your school work. We're so proud of your bravery and determination. Keep pressng forward and keep being strong. Each day brings you closer to being well.
    Hope to see you soon.
    Mrs. McCall

  2. Brayden,
    I sent you a Powerpoint with some really cute shots of animals. I know how much you like those. We have been thinking about you and praying for your rapid recovery. I am looking forward to January. :)
    Mrs. Campbell