Jones Family

Jones Family
November 2009

Sunday, June 28, 2009

Chef Brayden

Brayden has really been dreading this next week. His only solace is that he knows getting through it will put him closer to the finish line, so he's pressing on! We went to get CBC's (blood work) done locally on Friday afternoon. Since Brayden's counts were too low to be admitted and begin the next chemo 2-week regimen last Monday, we had to wait. He was pumped to run in and run out just for a blood draw from his PICC line. I think the staff was glad to see him much peppier that they have before! The last time we were there, we were begging for fluids and stronger anti-nausea meds. He did great and was cracking us up! Nini went with us and we passed the time with more Hangman. He thought he was SOOOO sneaky! I beat him...
The results came back quick and showed surprisingly in 3 days, his counts were back up above 1000 - what?!?! So we waited for the official word from his nurse, but I started preparing him. It looked like we would be back in Little Rock on Monday. He was bummed, to say the least, but is keeping perspective. He bounded out of the clinic almost at a full run and couldn't be happier to get back outside!
We had big plans for the weekend. Dad was going on a camp/fishing trip with our friend, Danny, so Brayden and I planned to make homemade pizza as part of our daddy-escape weekend. I was a little worried. Yesterday started out pretty rough. He was having some problems with his legs and hands, I'm assuming stemming from the Peripheral Neuropathy. He's being medicated for it, but this was a bizarre episode we're going to ask about. I felt awful for him. After some meds, he was finally able to relax and take a nap. Unfortunately, when he woke up, he was so sick. He felt better afterward, but I was concerned if any nutrition from breakfast or lunch was left. I was feeling like the rest of the weekend would look much different than we had planned. Suddenly, he pepped up. He was feeling much better. We've been wondering if he's got an ulcer or something. He's having a lot of problems with stomach acid and that's WITH medication. So we'll find out about that too.
I had resigned myself to thinking homemade pizza would be replaced with ramen noodles when he eagerly jumped up and asked for his apron. When he was about 5 I got him the cutest Chef's hat and apron from Pampered Chef. He wore it once then to humor me. Even though he liked the apron, I think he was afraid it was too over-the-top. I don't think he ever wore the hat again. Just in case, it's kept in the kitchen for the one time he'll wear it. Sometimes at Christmas when we're baking or making Reindeer Chow, he'll humor me and wear the apron. So after he asked for it to begin the homemade pizza, I BEGGED him to let me take a picture of him with the hat! I won't disclose how much bargaining I had to do to get him to relinquish approval to post said picture here.

Isn't he so cute?!?! I was totally hands-off on this. He did it all. Somewhere down the line, he decided he likes pineapple on his pizza. I never remembered him trying it but in the last couple of years, he loves pineapple and canadian bacon. This time he went with pineapple and veggies. I think more cheese wound up in his mouth than on the pizza. Don't get me started on the olives. The boy has always been an olive fan. I usually discourage snacking while cooking, but it was his pizza - go for it! He was very insistent on how it needed to be done and he did a great job all on his own!
The finished product looked great! He took a bite and couldn't stop complimenting himself on how good it was! "This is the best pizza EVER!"

Nini Annette joined us for a sleepover. We had fun watching Enchanted and seeing Brayden make fun of it! I'm trying to force the songs out of my head even still. Those things stick in there when nothing else will!
Daddy made it home after us waking up before 6 to some crazy loud thunder this morning! Brayden enjoyed filling dad's spot in the big bed with mommy. He's catching up on sleep with dad now after being woken up so early and dad, of course, not sleeping much at all while camping, was thankful for the nap.
I've gotta be honest. Friday was a tough day for me. I was reading a devotional late that night and realized we don't have to have flowery words when we pray. God knows what we want; he just wants us to ask. I've always been the one to think He's too busy for my stuff and I can handle it. I really couldn't handle it all on Friday. Things were hectic and stressful for me BEFORE this journey began with Brayden's diagnosis. Now, I've realized how much I need help. I haven't been sleeping well and with the weekly trips to Little Rock, it's like we can never get caught up on sleep. I'm not going to mention the cleaning responsibilities. And Brayden. When he's good; I'm good. But when he's not, it's almost more than I can bear. I don't know how other moms do it. I was telling my mom this is like week 10. How do parents in Years 2 and 3 do it? I related it once to a friend to that feeling you have when you're waiting for a loved one who's in surgery? You're holding your breath, praying everything goes well and hoping nothing bad happens. That's how I feel so much of the time. Does it ever stop? From checking hourly for fever, mouth sores, digestive stuff, water intake, healthy food, exercise, PICC lines, port area to heal, medicine, ANC counts, and all the other stuff PLUS keeping up with his medical bills and stuff is like running a business. I was reading recently in a Leukemia book the hospital gave us how important documenting is for many reasons. There's just too much.
So Friday night, 11:00, I'm dragging, exhausted and still have to go to the grocery store and NOT eager to go. As I'm putting in another load of laundry, my thoughts went back to the devotional. God just wants us to tell him what we need - in our words. I prayed a simple prayer. It's not easy to admit we can't do it all, especially for me. It's easier to pray for someone than to pray for ourselves. But I know I need Him now more than ever and not always just for the big stuff. So after dragging into bed at 2 am, I was thankful for a new day and renewed energy. Even with the hard stuff with Brayden when he wasn't feeling well, I'm thankful for good times with him not long after. We may have to look harder for the good times or things to be thankful for, but they're still there.
So we're headed back to Little Rock VERY early on Monday. I really hope in the 3 days since the CBC until chemo, his body will build up more counts to have banked for the next two weeks that are going to be tough. He'll be admitted on Monday and hopefully going home Tuesday afternoon. We'll do chemo locally the following two days. We found out IF the local clinic can get another chemo med to administer to him, we MIGHT get a 3-week reprieve from traveling to Little Rock!! YEAH!!!! I hope it works out. My car will be thankful for the rest; Bryan will be thankful to not have to drive and miss work. I will be thankful to not have to pack and un-pack and I KNOW Brayden will be thankful to not have that 7-hr round-trip! Here's praying it works out and we get a travel break!!


  1. Good luck tomorrow...I pray you have a safe trip, counts are good, and treatment easier than expected. I know its a big burden to carry right now and I pray for a lighter load. It seems so surreal that just three months ago our focus was on getting a tan, shedding pounds or something cute to wear for vacation. Sometimes, and only sometimes, I wish I still lived in my bubble oblivious to the suffering others have gone through before me. I wish for the time to go quickly for all three of you.

    Praying for you while staring at the ocean seems so much more powerful than driving in my car.

  2. Bray, I am so proud of you! One day I'm going to come to your house and we'll make my famous cinnamon rolls (mom,there's only 1 1/2 c. of sugar in whole batch. Lisa I pray for your continuing strength. "the joy of the Lord is our strength and our refuge!!" I love you guys and I see God's handiwork in the testimony brayden is demonstrating. Nana Terri

  3. Kathie mentioned she saw you all at the hospital in Little Rock today. I hope and pray all is going well for Brayden this visit. Prayers are for Brayden to keep his resiliance during treatments. Thank you for sharing all you're going through with keeping up with it ALL. You're one awesome mom, get some rest and take care of yourself too! The pictures are great! Hugs and prayers to you all!!! Amelia