Jones Family

Jones Family
November 2009

Monday, November 2, 2009

Let's see...

A lot has been going on since my last update. We've been busy with sleeplessness, waking up at 3am almost every night, lots of steroids thus lots of snacks, and pain. Unfortunately, Brayden has been in a lot of pain the last 10 days but the worst of it since last Wednesday. He finally gave in and took a pain pill 2 nights in a row at bed time and it really helped him to get some rest. He's still hurting all day in random places. His spine is hurting a lot and he's pointing exactly to the area where his Spinal LP chemo is done. Poor guy. It's been so hard seeing him like this. I was so thankful he gave in to the pain pill, but I know how bad it must have been if he relented. He's not taken them many times before. It was literally making me nauseated to see him hurting so much and be so powerless to help him. He told me today he "feels like an old man inside a young person". Ugh...what do I say to that? It is such a helpless feeling to know what to do to help him.

Remember his streak about no naps in the 6 months? It's broken. He's napped every day from Friday on. It's been so unlike him. I know it's good for him to rest and get good sleep and the steroids side effects aren't helping that. But it's been tough not seeing his energetic self lately. He's dragging a lot has very small spurts of energy that dissipate way too quickly.

The last two days he's told me he's lost handfuls of hair in the shower. Sure enough, his towel after his shower this morning was just full of hair. We're wondering if he'll still have his hair before he gets to radiation. He knows he's been so lucky to have it this long and commented again this morning how long he's had it. It still rips at my heart to see those clumps and wonder how hard it's going to be to see him without hair. With his hair, you can almost 'get by' without seeing the effects of cancer on him 24/7. Without his hair, there's no hiding it. The emotions of it, the effects of it and the constant reminder of this awful disease is staring at you. There's also no hiding it when we're out in public either in the future. So we're preparing him for that since that's been so hard on him in the past to worry about.

Halloween went okay. I had planned a mini carnvial here at home since he was still in strict isolation from his Dr. We baked some crazy cookies and decorated some monster cupcakes, which is a tradition. The highlight of the night was definitely getting to see his cousins on the webcam and show off his Captain Rex Star Wars costume. He was not himself all day. I tried convincing him to wear his costume more, but he just wasn't into it. Thankfully he had fun doing the carnival and we did a little craft. He was sad not to get to hand out candy and sad that he couldn't be with his cousins like we do every year. So we just wasn't the same.

I had a big mix-up with his treatment schedule and we were all so relieved to hear from his Nurse C Friday afternoon that this week is an off week! To not have to make that trip this morning was a big relief but most of all, relieved to know Brayden can have a small break. We'll get his counts locally this Friday and find out for sure if we return Monday the 9th for the 2 weeks of chemo I've been the most nervous about. For now, we had a BIG celebration last night that he took his last dose of steroids that he'll have to take for about a month. The effects will still be in place this week for his system, but just knowing we were 1 step closer was very exciting and reason to celebrate.

This week, please join us in praying for relief for Brayden from all the pain he's been having. He's having a lot of trouble walking this week, pain in his upper legs (most likely from the chemo shots,) pain in his spine, and was scaring me yesterday hearing him complain of pain in his hands. The Neuropathy he's been taking medication for since Month 2 can effect other parts of his body and this has concerned me for a while. This is an effect from the chemo med he gets most often. We pray it won't worsen or spread to other areas of his body and the medicine would continue to work. We're praying for peace. He's had a lot more emotional ups and downs this week but hearing his fears about the diagnosis in some very negative views for the first time was so heart-wrenching! I'm glad he's talking about it. It just pushes my heart past the breaking point sometimes hearing your baby in so much heartbreak and pain and calming in him the same fears we have daily. We're praying for rest for his body this week and recovery and strength before heading into the next phase of treatment. Thank you all for the support you provide our family in persevering through this journey...


  1. Awesome costume, Bray! Miss you more than words exist to describe. Love you, Goofy.

  2. Missing you oodles & oodles, my sweet Bray! It's so, so hard not seeing you, buddy! I hope your new Razorback heat pack is helping you not hurt so bad? Sending tons of love to you with all my heart!

  3. You look so good in your costume!Stay strong in the Lord.

    Your standing near friend,