Back to "Behaving in the Cave"

Yes, we were back in the cave rooms this week while at Children's. Sorry I haven't been able to post an update sooner since we didn't have access in the rooms. I rarely leave Brayden, so I decided I'd wait til we were back home. The week went well. I was nervous on Monday when Brayden's 6-hr pre-hydration didn't clear as early as it usually does. They did some additional meds to help ensure he was prepped. Doing so made me pray extra hard for protection for his kidneys for this LAST ROUND of HIGH-DOSE METHOTREXATE - YEAH! I took a picture of the HUGE bag that he gets twice that runs for 24 hours straight. I'll post soon. It's certainly the little victories that we celebrate. Thankfully with the chemo, there wasn't anything different from past rounds that we went through. I was thrilled that daddy suggested we bring Easy Mac with us this time and it worked like a charm. Brayden ate better and still enjoyed his water-flavored green tea mixes. Thankfully we got to go home about the same time as last time on Thursday afternoon. He was sick that morning, but then eager to go. He had been so excited to see that last bag of chemo come down. We have many more chemo regimens (3 years worth) but this was the last time for this one. Bye-bye big, yellow bags!

I have to share a quick story with you. Brayden was unusually rambunctious this week. I remember my mom using that word to describe us girls growing up. Uh - no. I think until you see a 9-year old boy itching to go home and comfortable with the hospital, nurses, workers to CONSTANTLY tease and be sarcastic with them, you haven't seen rambunctious! He was on a roll this week and we were glad he felt good. We even joked needing to get him one of the baby beds with the metal rails because you couldn't keep him down this week. He was particularly silly with his Dr. He kept giving me the eye like, "What have you been feeding this kid? Straight sugar?" I think they know me better than that. But I tried telling him I had no idea what was going on. I know now in reflecting, it was another block of treatment we could cross off our list. Another big long sheet of paper of medicines, dates, side effects, worries, that we could toss aside. Brayden was feeling relief and joy at this being the last of something in this never-ending treatment battle with this disease. So, his Dr. decided to do a little teasing of his own. He decided, no more Zofran (the miracle anti-nausea drug he is on constantly while admitted) and no more Emla cream (that helps numb his port before being accessed). Brayden looked at his eyes...was he serious? Teasing? His Dr.'s face remained steady. Brayden challenged him back, 'Yeah, right!' So, Dr. leaves, we prepare for his port access, blood work, admission process when suddenly his Dr. returns. Uh-oh. He's printed off Brayden's orders for his chemo. At the top is Zofran. He's DC'd it on the paperwork, initialed it, and signed it at the bottom. "See, Brayden? I told you." Brayden mulled over the paperwork and there was a flicker of him thinking, "Uh-oh; I've pushed it too far in my silliness with him." His Dr. broke his straight face and laughed and reassured Brayden what a great kid he is and how much fun he has with him. He ripped up the orders and Brayden got a kick out of the "See, I told you it wasn't real" prods with him! It wasn't until later I really thought about all the trouble he went through to pull up and print off orders, sign them and bring them back all to tease Brayden. We're so thankful for the wonderful staff there. That made a lasting impact on us and we so love his Dr. that we were blessed to be working with through everything.

Brayden spent the week asking a lot of questions, helping the nurses as much as they'd allow. He's getting more and more comfortable with everything. It feels like we have 2 more hurdles to clear before the waters calm a bit: this rough 2-month block of treatment, Radiation, then the 3-year maintenance begins. We found out Brayden needs to have an ECO on his heart next week. This will help ensure his heart is still healthy enough and can endure the next chemo regimen. These medicines are some dangerous ones that he had after first being diagnosed. Once reminded, it took me back to the early days and I realized how catatonic I really was then, just 5 months ago. I had become numb trying to protect myself from all the gruesome details, side effects, risk factors, and just praying Brayden would pull through and trying to be strong and steady for him. He has done and continues to do so wonderfully. Now knowing these drugs are coming back again is unnerving, to say the least. Assuming his counts are high enough to proceed, the results of the ECO are good, we'll return to Little Rock October 12th. He'll have another spinal sedation to treat the brain cells with chemo again. And then the other chemo meds that we'll certainly be praying for protection for his body from their harmful effects.

We learned of a little girl this week who was also diagnosed with ALL just two weeks ago and suffered a stroke as a result. The chemo is to help but once it takes effect, the Leukemia cells can wreak havoc on the body. Please pray for her. I don't want to post her name without the family's permission. They are enduring a lot right now...and the Leukemia diagnosis is enough. I can't imagine enduring the side effects of the stroke as well. Thank you all for your love and prayers. Thank you for continuing to remember Brayden. Thank you for walking this journey with us and agreeing with us in lifting up Brayden in prayer. We are so thankful for that above all. Here's another example. After reading this and hearing from a teacher from Brayden's school, I had goose bumps and couldn't hold back the tears. I was so excited to tell Brayden and he thought it was SO NEAT! Thank you, Lord, for an awesome school!

"...I teach 6th grade at ACA. I took my students and several parents to the Pharoah exhibt at the Arkansas Arts Center in Little Rock, yesterday. On our way out of town, about 2:30, we came to the Arkansas Children's Hospital parking lot. We got out of the cars, formed a large circle, and prayed for Brayden, you and your husband. We just wanted you to know, and know that your are in our prayers daily.

Our love to Brayden..."