Jones Family

Jones Family
November 2009

Saturday, July 25, 2009


***I wanted to say thank-you for the comments! I'm sure it's tough sometimes knowing what to say on here for Brayden, but he looks for comments every day and was so excited to see some new ones this week! Thank you so much!!

We've enjoyed, for the first time in quite a while, the opportunity to get Brayden out of the house! Dad loaded up both kiddos (Hershey & Brayden) Thursday morning to go to the walking trail and new Bark park! Brayden had watched this being made for several months and couldn't wait to check it out. He took off in a run and realized quickly his stamina had changed. But the fresh air and beautiful morning did him well. Later that afternoon, we all took off for HH! Brayden was so happy to get another Happy Hour treat at Sonic. We stopped off at a local Farmer's Market and were thrilled to get some fresh veggies. You forget how good everything was INTENDED to taste fresh! Then we got to drive through the Pea Ridge Military Park. Brayden missed the last field trip of 3rd grade getting to do this and even though I know we weren't as fun or educational for him, it was a nice family outing for us. We realized we need to find things like this to do more often. We were blessed with beautiful weather and amazing views and some history thrown in there too.

Yesterday we found out about what's next for Brayden. We are now entering the next block of treatment called "Interim Maintenance". Brayden has completed 3 blocks of treatment since his diagnosis. He'll be admitted Monday morning at Children's for an LP (Lumbar Puncture, aka 'Spinal') where they'll give him Intrathecal Methotrexate again. It's been a while since his last one (June) and Brayden's excited about getting the 'dizzy medicine' again. Just a reminder that this is part of his High-Risk protocol treatment and the spinal chemo is to treat the leukemia cells that were found in his spinal fluid at diagnosis. It's to prevent kiddos woh go into remission after treatment from relapsing with brain cancer. They treat the brain cells completely differently. Then he'll be admitted for a minimum of 3 days. This is to monitor his levels of High Dose Methotrexate in his system that he will be given IV for the first time and he won't be released to come home until those levels have lowered. This will be repeated 3 more times in this block of treatment, but only if his counts are high enough to return and then staying again a minimum of 3 days. Once complete and his counts recover, he will receive 11 days of radiation. After that, he moves to the next block of treatement called 'Delayed Intensification'. It's another 2 months (count dependent) so it could take longer if we have to skip weeks while waiting for his boy to recover. THEN - we go to MAINTENANCE!!! This is the last treatment block he will be on but it will be for a long 2 1/2 years.

After hearing all about what's next for Monday, I was glad we had already planned to go see Ice Age at the movie theater Friday afternoon. Nini and cousin Caleb came with us as well as Brayden's friend Logan from school and we were THRILLED that Mrs. Lembke, Lauren and Juli could come too! The break from the monotony was so good for him. He did great with understanding the need to again wear a mask, take a blanket to sit on, etc. All the precautions that we've used before, he was cool with doing again, this time in front of his friends. It was so nice to hear him laughing and enjoying himself. After the movie, we got some great pictures (will try to post later) and it was so cute to hear that the girls just wanted to know if they could hug him! Even though I was still a nervous wreck about everything, his happiness out-weighed those concerns. I know we have to find balance and knowing it's going to be rough-going next week, was thankful he go this chance to get out and have fun, even for a couple short hours. So thank you Mrs. Lott, Mrs. Lembke and Logan, Juli, Lauren, Nini and Caleb for coming to hang out with Brayden and help get his mind off all things Leukemia for a bit. He loved seeing all of you!!

This will be a rough trip for us. Because Brayden will be admitted for at least 3 days, Bryan is going to stay back so he doesn't have to miss work. This will be the first time I've made the trip by myself with just Brayden and the first time we'll be there alone. I know we'll be fine and other parents have to do this all the time. The security that Bryan brings with him though will be missed and that means no breaks. We're praying for a safe journey, a quick visit, but more than that, Brayden is pretty nervous about having his PICC line pulled. That's the line that's been in his arm since April 29th. It's served him well and done a great job of continuing to work for this long and not getting clogged, not getting infected (thank goodness) and allowing him to have less pokes with the endless blood draws, and IV pushes for all his meds and courses of chemo. I keep trying to remind him we need the PICC out so once his counts increase, he can swim before the summer is out!We're going to try the numbing cream on his port on Monday so hopefully it will make it getting accessed a little easier than last time. We're praying his counts can keep climbing as high as they can before Monday so he starts out higher and stronger for this next round of treatment. We're praying his methotrexate levels lower quickly and he stays well hydrated post-treatment. He has to have preventative meds with methotrexate because it lowers the levels of folic acid in his body. Again, many side effects. He'll have Vincristine with this treatment again and have 6-MP, his oral chemo med, DAILY now for this block of treatment. With all this comes lower counts and risks, so as always, we're praying he stays free of secondary infections and we can keep germs to a minimum and that his body stays strong to recover those counts quickly!

I'll try to post an udpate from Little Rock as soon as I'm able. We are so thankful for all of you continuing to support Brayden and thankful especially for your prayers.


  1. I'm praying that all goes well over the next three months so that when Thanksgiving rolls around we will be on maintenance with something to be thankful for.

  2. I will be praying for all of you...the Daddy at home and the Mommy w/ the kiddo in LR.

    Miss J.

  3. Ask Brayden if he recommends Ice Age2. Is it as good as the first one?
    I think G force comes out this weekend if he is wanting to head back to the theater.
    Is he in to Harry Potter, Randy took Dane and Megan yesterday.
    Praying for you this week. Donna

  4. Hi Lisa! Jon and I ran into Bryan at Shogun tonight and he told us all about Brayden. We will add Brayden to the prayer list at our little church and if there is anything else we can do please let us know! I sent my phone numbers with Bryan...please call me. I would love to see you again and catch up. Brayden, you are a brave young man! Hang in there! Kim

  5. We think of you daily, just don't always know what to say. Grace and Logan pray for Brayden's recovery every night at dinner. When Brayden gets home and feels up to it, Grace would love to chat with him via webcam. She's been bugging her dad to get one hooked up.

    Prayers for you on your trip without Bryan, and prayers for Bryan because I know he'll be worried sick, not being there. Prayers for Brayden for courage and health and good counts.

    Love you guys!
    Trish, Ken, Grace, and Logan

  6. Lisa, Bryan and Brayden I want you all to know you are in my prayers. I learned recently something I really already knew but didn't think about it so simply. The thing I learned is in regard to the immune system, as we all learned in school is that our immune system fights off infection, virus, disease, etc. Well cancer is a disease, so knowing this I will be adding prayer for Brayden's immune system so that it will get stronger and fight the cancer. Be safe on your trip. Love Shanna