Jones Family

Jones Family
November 2009

Thursday, January 21, 2010

9 months ago...

We have just been soaking it all in lately. We’re soaking in our non-traveling weeks to Little Rock. We are so thankful for a wonderful Oncology Clinic with great staff close by. Brayden went Monday to receive this week’s dose of chemo (Methotrexate). He’s still taking his nightly chemo meds at home – each and every night. It’s setting in with him that 2 ½ years of all these pills is a long time. He’s being strong and getting it done. But the first week of Maintenance (1/4) that he had to take steroid pills as well was not fun. There’s an additional antibiotic each week 3 times, twice daily, that’s also not fun for him. As a Mom, I’m trying to teach him how this medicine is working to help him and we keep talking about it, encouraging him about it. He certainly is normal and reaches his frustrations about all of it sometimes. But he continues to amaze me with his positive outlook and his determination.

We travel back to Little Rock for Brayden’s monthly chemo and check-up to Children’s in 2 weeks. Our car is probably so thankful for the break from those weekly miles! We’re watching Brayden’s counts closely, as always. They are always high after steroids so last week was a bit of a shock to see them. This week’s appointment they were back down a range that we were familiar with, but one that will still allow him to not be in isolation. Seeing that drop certainly has reminded me of all that we’ve been warned about. We’re working to do what we can for now and enjoy this freedom.

We’ve kept very busy lately with visiting family, friends, and getting out of the house a bit more. Mom & Dad even got a couple hours away for our first date night in a while! Getting to go to HH (Happy Hour at Sonic) was a big treat for Brayden. He loved getting to eat out as a special treat. I tried not to be too offended at how good he kept saying the food tasted! He’s been loving the warmer weather in the afternoons. He and Dad have been getting some practice golf swings in each day and just getting to be outside more has been such a gift. The daily grind has kept us all busy between school and work activities. Brayden worked so hard over the beginning of Christmas break and got all caught up with school. It’s a good thing - since then school has really picked up! They are studying the 50 states, capitals, where they are on a map, etc. Each week is a quiz. He’s also picked back up in Bible now that 2nd Semester has started and is enjoying that. He was cheering yesterday on the webcam. He was able to participate with the class in their Latin lesson! He shared with me some of the new words he learned and was definitely enjoying that opportunity.

Brayden is continuing to have a lot of pain from Radiation, although it has lessened in the last week. His Neuropathy in his legs has been an issue since his diagnosis with the effects of Chemo that one of the meds has caused for him. Lately, however, he’s really having more trouble walking. We’re hoping now with more exercise it will help increase his stamina and hopefully help strengthen his muscles again. He gets frustrated sometimes that he can’t move as fast and it’s very common to hear his pain when he stands up or moves after being still for a bit. But you rarely hear him complain about it.

It’s so hard for me to fathom that it’s been 9 months since Brayden’s diagnosis. We have seen some awesome things in that time that has brought our family a mixture of joy, sorrow, happiness, pain, but most of all hope. There are hard times but we persevere. We’ve seen so many sad endings for other families fighting, but we’ve seen so many with endurance and faith that help push us to want to do and be better in the midst of this journey and battle for Brayden. Please remember there are so many fighting. We took a quick trip to Hobby Lobby the other night. Brayden’s getting more and more comfortable with the looks and was having a tough time staying still! After being patient with Mom looking at stickers, we went to the section with all the cool models and play sets. Another Mom was there with her son shopping for a school project. She asked if we were as well and we said no. Inside I was begging for her to stop asking and stop looking. Suddenly she said, “What are you battling there, buddy?” While staring at his bald head she was waiting for his response. I wanted to scream. Why ask? He was quick to answer back he was just looking at the ‘army guys.’ Suddenly my pain and flash of anger rising up to protect Brayden melted away when she looked at us with knowing eyes. She told us how good God is to protect our boys. She stepped aside to show us her son, also about Brayden’s age, with his full head of hair. She then shared how for 2 years he waited for his hair to grow back after battling a brain tumor. She acknowledged how they too know Little Rock like ‘the back of my hand.’ I was instantly so grateful for this meeting and for the Mom speaking up. She encouraged Brayden and the boys smiled and waved at one another. Brayden sometimes feels so alone in his battle. So happening upon another boy who has traveled this journey was such an encouragement to both of us. He looked like any other boy, just there working on a school project. Soon that will be Brayden and we’re so thankful for him to see another sign of hope and what will be and that he too can fight through to the other side.


  1. My heart hurts for you. Sometimes life doesn't seem fair but the reality is life is what it is and we hold on until we make it to a better place with no illness or pain. I know that brings no comfort nor does anyone really expect it to when you are facing your darker days. I think it is great that you met another mother and son who understands what you are going through. Brayden reminds me of all the seemingly happy children they choose for the St. Jude commercials. Kids are so strong and full of hope. Please remember each time someone asks questions it is a time for you and Brayden to demonstrate his resiliency. It gives you a chance to be proud of your strength and Brayden's strength. It's still okay to say, 'this sucks' when you feel like it. Honesty is a good thing.

    You are in my prayers daily.

    With lots of love,

  2. Thinking about you today, my sweet Brayden! My heart is so full of love for you, buddy! I can't believe that it's only 2 months till the one year anniversary of your diagnosis, which started you, your mom & dad down this journey's path. And, I can't believe that it is almost your 10th Birthday! Wow, where has all the time gone? I am so proud of your strength & resiliency, Brayden! Be strong! I know you hurt sometimes. I wish that Nini could take that pain from you. If I could, I would in a heart-beat. I love how you don't let that keep you down. I believe that your tenacity will take you far in life! Just know that Nini was thinking about you today & thought you'd enjoy seeing this comment on your bloggie today.

    With all my love,........Nini Nett

  3. Hi Brayden how are you I miss you so much I can't wait for you to come back in April.Everyone is so exited for your arrival and we all praise God for protecting you during this hard sickness.You were so brave in not thinking negetive thoughts ;hatred;anger;or fear of what would become of you.You are an inspiration to all the kids at ACA always.You are the kindest;sweetest;bravest;wonderful guy ever.If I would have known you would get this disease I would have taken it for you cause it has caused so much pain in all of us we can't stand it anymore none of us at ACA can deal with it though it is a part of life it is to hard to get along and say it will be just two more weeks and it will be over forever cause it will live in our hearts forever.You will regain streingth and power to move an do all the things you wanted to do while you were sick."Lord,I pray a blessing over Brayden now and forever more Amen".

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