Jones Family

Jones Family
November 2009

Monday, January 4, 2010

Hiding Out

It’s been so good to be at home together. We apologize for not keeping the blog more updated. It’s fallen on our priority list lately with just spending time together. Last Monday’s plans to Little Rock were cancelled late Sunday night after I had already posted the last update. Brayden’s counts were just on the border of qualifying to start the Maintenance phase of chemo. Since there was another indicator that they may not be on the rise, his Nurse thought it best to give him one more week to recover, so we had another week at home last week. We were happy to learn Thursday Brayden’s counts had climbed a bit more. Saturday, for the first time in 3 months, we got to be with some of our family. It was our family Christmas with them and so nice to see everyone. It warmed up my heart to see Brayden hug his cousins and to see all their little faces light up to be reunited. Being around family again was such a good feeling. It was hard to sit back and relax and not be over-protective of Brayden. He ended up playing way too hard, hurt his back and got an ugly scratch on his cute, bald head. Every day is another test to see if I can let go and let God take care of him and putting him in His hands and not mine. As a Mom, I don’t know how long – if ever – we fully learn that lesson. Nevertheless, the smiles abounded and our hearts were filled up again with love that surrounded us. It was nice to feel missed and I know it was SO good for Brayden to finally see everyone.

It’s incredibly hard to realize and fathom it’s 2010. Brayden is making lists of things he is so eager to do...normal things he’s missed out on now for far too long over the last 8 months since his diagnosis. My mind can’t comprehend how much has changed. We’ve had a lot of good days, but the reminders are always there. I woke up the other morning and my heart lurched. When he’s sleeping, those bright eyes aren’t shining...and I can’t deny that he’s enduring the effects of cancer: his sweet bald head, his pale skin, his eyebrows gone, and the dark circles that form around his eyes. did we get here? Then, later, when his excitement is there about Christmas and snow and all things 9-yr-old boys get excited about and those big blue eyes are shining, I focus back on the present and remember what a gift Brayden is to us and pray we soak it all in. He’s starting to grasp how long 2 ½ more years really is...and it’s gut-wrenching to explain it and hear the sadness in his voice when he talks about it. So I guess these last two weeks I’ve been hiding out a bit from sharing my feelings on here. It’s been incredibly wonderful and yet so hard at the same time. We’ve missed a lot of special traditions started just when Brayden was 8 months old his first Christmas. It’s been sad to look at the ornaments and special reminders of things in past years. He was so scared and so hesitant to see our family because of how different he looks. I guess these are challenges all families struck with a diagnosis go through. It’s just been so tough to have these conversations and have more realization from Brayden of all that he’s internalizing. I’m glad he’s talking about it but what my heart wouldn’t give that he wouldn’t have those feelings in the first place or to take it all from him.
For now, we’re continuing to focus on the good things. We’re trying to reassure Brayden with all the increased pills he’ll be taking at home for the next 2 ½ years, at least that means less frequent trips to Little Rock. It means no more overnight stays in the hospital for the High-Risk chemo. He’ll get more time at home and hopefully a chance to see his friends at school soon. Hopefully he’ll get to start knocking things off his list of wishes to do and feel a little more carefree.

Please join us in praying for relief for Brayden. He’s been in a lot of pain over the last week in his lower back, his ribs. He has a lot of trouble walking at times. We’re also praying for safe travels to Little Rock Wednesday and that the weather will hold out for us to make it there and back. We’re praying his bone marrow is able to kick in and keep new, baby, healthy cells growing. We pray for peace for Brayden's heart and his resiliency he's exhibited to keep propelling him forward. We pray for happier times for Brayden to renew his sweet spirit so he can continue this journey.


  1. Brayden - you are still in our thoughts and prayers. I hope Santa was good to you this year! Happy New Year! It is great to start the new year with maintenance. Keep your chin up. I can only imagine how difficult this is on you.

  2. Our Dear Sweet Brayden,

    Papa & Nini just read your blog together tonight & saw the pictures of radiation that your Mommy posted. Although we hate that you are having to go through all this,....we are so, so very proud of your resiliency through it all! You are so amazing & are so precious to us! We were so thrilled to get to see you this past Saturday for our family Christmas! Even tho you were here several hours, it just wasn't long enough for us! It was so moving for us also to see everyone get hugs from you & to feel the love in the air between your cousins & you,...and from all of us! We're so, so very grateful that we got to have Christmas with you, after missing Halloween & Thanksgiving with you. Our hearts are so full tonight, especially after seeing the photo of you actually getting radiation. Oh my! You are sooooo loved, Brayden!

  3. Hey Brayden I bet You had a fun time at Christmas. Seeing you at school was so fun.