Jones Family

Jones Family
November 2009

Saturday, August 1, 2009

Isolation Continues...

Yesterday we went again to check Brayden's blood counts (CBC's). I was really surprised to hear he's still neutropenic and will remain in isolation. We have to protect him from outside germs as much as possible since his little system isn't strong enough right now to fight off anything foreign much less endure high-dose chemo. This means we get another week-long break from chemo and traveling to Little Rock. After 2 weeks of pumping Brayden up about getting his PICC line in his arm taken out, looks like it will be hanging around a little longer.

I've said recently it's tough because on the one hand, I appreciate the breaks and hope it gives his body time to get stronger. On the other, the risk for infection and fever is SO high when he's neutropenic, so you can't relax and enjoy the break. We'll keep operating in strict isolation mode at home while nervously holding our breath, checking for fever way too often, and hoping we're keeping him protected from germs.

Getting out yesterday even for a few minutes to get blood labs was good for Brayden. He's used to wearing his mask now and he had waaaaay too much fun chatting it up with the nurses. They laughed and commented he's the only patient that can drag 4 nurses away at a time to come and visit. He was certainly the star of the show while I sat back staring in disbelief at the new counts and results of his blood draw. Nini Annette commented he was probably THRILLED to have someone else to visit with in person besides crazy mom! He agreed to this waaaaay too quickly for my liking :-)

We're praying Brayden keeps up the course he's been on with staying healthy and free from infection with no fever. We're praying he stays in good spirits and that resiliency stays strong. We're praying his counts do recover and can get as high as they can as fast as they can before the next round of chemo. That way maybe they won't have as far to drop next time.

In the meantime my sweet friend Linda gave me an AWESOME idea of letting him shop for his own school supplies on! Brilliant! He's still been busy in his fort but with a little less energy this week. We had fun making rice krispie treats one evening. Of course each day has some Star Wars action involved. We're just doing what we can from here since he can't go outside when his counts are this low.

My mom's helping me to organize a blood drive in Brayden's name. Be watching for more details on that since so many have asked for ways of how they can help. This is such a self-less act that helps SO many in need. You don't realize how much it helps until your child is being transfused and you see that donor bag of blood hanging from their iv pole. Or when they say he's dangerously low on platelets and they'll SEE if they have his type. SEE if?!?! You take for granted it's always there. It's certainly made us realize how grateful we are to all those who donate blood. Thank you!!!!


  1. Happy Birthday Lisa!!!

    A blood drive is a great idea! I hope you all had a great day today. I hope this two week rest means he will have lots of strength next week for chemo.

  2. I read about you on the ACA message. My heart goes out to you all. My son, Joseph, was diagonsed with AML 7 years ago. He underwent 2 rounds of chemo at Arkansas Children's Hospital in Little Rock. On Sept. 11, 2002, he had a bone marrow transplant at Vanderbilt in Nashville. We had a long, hard journey with him. I remember all too well the isolation and concerns when he was neutropenic.

    I know how important it is for you to hear GOOD stories at this point in your lives. Today, Joseph is doing great. He is 23, working at Sam's Club in Fayetteville and taking a master's level class from JBU.

    Keep the faith! God is faithful.

  3. Keep giving those nurses the "Brayden charm", you're such a ham, Brayden!!! We pray for high counts to come soon!!! Big Hugs to you all! ~Amelia

  4. Missing you oodles & oodles!

    All my love,.....Nini Nett