Field trip, family & funder

Okay, so it's thunder. But I was trying to go with the 'f' theme and use alliteration. (No, I did not look that up, so if I am incorrect, please don't tell me!) The last several days have continued to be very busy at the Jones house. Friday Brayden had a big field trip - the last one of the year - to the Tulsa Aquarium. I was so thrilled to be able to go. True, my controlling nature may have had some difficulty with the idea of him being 2+ hours away on his own. Yes, with other responsible parents, yet without me! So I was so happy to be able to go and enjoy the experience with him. Since we were close to all of our family that lives in Oklahoma and it was Mother's Day weekend, we made plans for some stops along the way to visit family. First was Brayden's great-grandma, my wonderful Grandma Sue. She's a treasure and I've written about her here before a while back. It's difficult to capture in words what she means to me. It was wonderful seeing her and my Papa too. They're the most wonderful people and feel like home to me. It was an awesome day with perfect weather and Brayden again loved being able to be outside, playing on the tree that's been there since I was little. He got to feed the horse again and play with the dogs and get loved on by awesome great-grandparents.

We then stopped by Brayden's awesome family to visit his Nana Susanne, Papa G, Aunt Kimmie & adorable cousin Kynnli. We loved getting to visit with them and celebrate an early Mother's Day. I've always felt so blessed to marry into such an amazing family!! We didn't want to, but we finally headed back home. We had many more events happening over the weekend. Sunday we had such a lovely brunch at my sister's house and enjoyed my family all being together. It was a wonderful weekend to be fortunate to see so many of our family members and show off Brayden's full head of hair and adorable curls that are starting and his 'chemo highlights' as his Oncologist calls it. I loved spending the rest of the day with my sweet boy and cherishing the wonder that is motherhood. I'm so thankful for him! He & Dad did a great job of making me feel special and appreciated on such a special day.

Brayden's weekly blood counts yesterday showed a drastic drop. I was actually more comfortable finally seeing them come into a normal range for the first time in 5 weeks. If they had been higher yesterday, his chemo levels would have been raised. Brayden definitely seemed different yesterday. He's been more tired and sore yesterday and today. With extra sleep last night, I was hoping he'd feel better this morning. So even though his counts are back in range, I hope the chemo isn't wearing him down too much. We're back to being more precautious, although he's still in school. We're starting to see the countdown for the end of the year. He's not counting down as much as I am! It's a lot of work to help him at home!! I think I dread tests more than he does!! So I'm ready for a break this summer.

Last night's storms were crazy! My boys are both weather obsessors and the Weather Channel was on our tv all afternoon & evening! Brayden announced to me again that he's going to be a storm chaser. I've gotten past the, "Yeah, right! Not if I have anything to say about it!" I know that I certainly don't want my disapproval to push him into it, so it's become our little joke. He LOVES those storm chaser shows and we've always loved how he gives our family little meteorolgy updates when they call. So last night he was glued to the action. We were also worried about our family being impacted by all the storms. After watching more and more video, we think maybe Brayden has decided watching the storms from a distance is better. We'll see!

Crossing off the wish list

What an incredible week we've been having! After returning from Little Rock last Monday, it was Brayden's week to be on steroids, so we knew there would be higher counts as it stimulated his white cell production, thus giving us a little buffer to get out and play a bit more. For the weekend we had some fun outings! Brayden was so happy to be invited to a friend's birthday party and even happier he was able to go! He loved being with almost all the kiddos from his class and playing Lazer Tag! Another welcomed glimpse of normalcy. We were so thrilled to get to spend some time with our sweet friends and have a dinner out with them & Brayden too and get to go bowling! It was Brayden's first time to go since before diagnosis and he LOVES bowling. We decided quickly we were all a little out of practice and this is NOTHING like Wii bowling! He really touched my heart when he said during the game that he almost forgot he had cancer. This was certainly a little thing to do that was a BIG impact to him in just having fun and getting his mind off of everything. It was a big day to get to officially cross off another wish from Brayden's list he made after diagnosis. It seemed so far away until he could be able to do the things he loves so the wish list was a way for him to have something to look forward to. I'm so thankful we're having the opportunity to celebrate and enjoy crossing more things off his list. We got to hang out at Border's and his hot chocolate dessert treat was nothing short of dessert! 3 kinds of chocolate and whipped cream, sprinkles overflowing! YUMM! He was eating it up especially with steroids being in control!

Monday was back to the local clinic for chemo. No surprise that his counts were elevated after a week on steroids. Still, much higher than they've been in the past. If they are high next week and the week after, based on info from his Oncologist, his dosage of chemo will most likely be increased. All the blood results and happenings of getting chemo were over-shadowed by Brayden's activities at the clinic. He LOVES the nurses there and has added more casualties to his teasing and overall sarcastic nature. It got a little out of control (I think only for Mom) while there were giggles and shouting of sport team comparisons and the list goes on. Whatever he can find, he holds on to and loves giving the ladies a hard time. It's great because he always walks in with a smile and leaves with one too. I'm always amazed at how much they get right in there with him in the teasing!

Last night was another big day. We've been wanting to see another movie for a while, as there have been a couple new ones out he could see. It was SO fun! Afterward, Dad hopped in the backseat after so Brayden could ride in the front seat. We drove with the open sun roof and enjoyed the amazing weather while blasting some tunes and looking ridiculous as a family about town jamming like the family without rhythm that we are!

School is still going well for Brayden. There have been some adjustment obstacles but I've been so proud of how hard he's working to just fit in and get back into the swing of things. He wants SO badly to do well. He's only had to miss when we travel to Children's, so I'm thankful that his immune system is staying strong. It might have just a bit to do with the Germ-X in his desk, clorox wipes in his lunch box and mom's daily questions after his initial return about ensuring the 20-second hand washing process is still being done. Hey, he is still a 10-year-old boy that we ALL know struggle with washing those hands! I've said it before - at least I haven't made him obsessive about it but he's doing great remembering to be careful. Recess has been a bit tough for him. He wants to run just as fast as the other boys and play soccer like the good 'ol days. His stamina isn't all the way back, but has improved so much in the last month. He's getting there and we're thankful for those who are supporting him along the way in little ways we may not even realize.

Our evenings have been filled with enjoying the sunshine and hitting some golf balls, practicing the Presidents in order and realizing there is only a few weeks left of school. 4th grade seemed like it only just started in so many ways and it's almost over. Teacher Appreciation was last week and I hope we have adequately expressed our appreciation to the impact the wonderful teachers at his school have had. There is more to look forward to with a busy weekend approaching. Another Mother's Day. I'm thankful beyond words to take it all in. In my heart though is an ache for other mothers that have been drawn close to our hearts this year and in years prior. Please remember them in your prayers; those who have suffered the loss so deep to a mother...God has their names close to heart and I pray gives them a special comfort this weekend.

The Dash

The last 11 days have been so emotional for me and Bryan. Last week, I'm not sure if my post fully reflected the fear that was gripping me. Brayden's out of the normal blood count results really shook me to the core. The nurse tried to reassure me, but I didn't understand why things were suddenly different. Your mind takes you places your heart can't handle. I prayed and tried to stay focused on the present and not allow myself to think beyond the moment. It was just too much. Things got a bit better with the fear still looming in the back of my mind. I was so thankful to get away and get some scrapbooking time with some sweet friends at my Mom's scrapbook getaway weekend at her house. It was wonderfully relaxing and a great way to, if not re-charge, then at least un-plug for a bit. Sunday hit me hard. Suddenly Brayden was lethargic, in pain, and didn't want to eat dinner. My eyes hopefully told Bryan everything I couldn't say as we gathered around him and prayed together...our little tiny family. I kept hearing in my heart that verse ..."where two or three are gathered in my name, there I will be also." I prayed God was with us in that difficult moment of uncertainty and panic of wondering the worst. I couldn't say it out loud. This is the first time I've admitted the core of my fear. Was the Leukemia back?

Brayden finally was able to rest while Bryan and I sat shell-shocked. There was comfort in knowing we were returning to Children's the next morning early. But with that comfort of knowing he's taken care of by the best, did we want to know the results we would see? Sleep was the last thing on our minds as I started to wonder if I needed to pack a bag, get the house ready. Would we return home the next day? Should I take some of Brayden's favorite things with me? It all took me back to one year ago and walking into our house 10 days later than how we'd left it that night after dinner for the ER trip when we learned of Brayden's diagnosis. I was so angry for allowing my thoughts to go there. I was not going to prepare for the worst. Why was my mind racing? I was letting fear take over! Yet, you know and hear statistics and see it all around you. We had a week of that blood work looming overhead and now his physical reactions Sunday sent me into a tailspin.

Bryan and I finally realized we'd have to try to sleep. Around midnight my quiet tears finally allowed to flow without Brayden seeing, I confided in Bryan something I've never said out loud. Isn't it strange how we can have these fears in our hearts but if we don't say them out loud, it won't bring truth to them or the weight of them won't seem impossible to bear? I confided in him that I wondered if we would always worry? Would we always be holding our breath? Would we always wonder at every bruise that comes up in the future? He did his best to comfort and console as we both felt the weight of that answer. Yes. I miss the old days. I miss the worrying about little things that don't even matter now. It seems so far away that we would worry about other things that had nothing to do with sickness or blood work or chemo or hospital stays or horrible things like relapse.

3am shook me out of what little sleep we had found. I got up wondering what to do. Pray. I prayed over Brayden again. My sweet mother-in-law knew some of the fear we were facing and encouraged me to say "I trust you, Lord." That's hard. We want to trust. But do we fully? I was reminded of our Branson weekend celebration a couple weeks ago when Brayden and I were walking around before the show started. There were Bible story pictures on the wall. One was of Abraham and Isaac, with Isaac on the altar. I've thought of this story many times in the early days of diagnosis. Do we really trust God enough to let go of our precious child and give him to Him? Brayden asked about it and the air was gone out of me. I couldn't formulate the words knowing that tears were right on the edge. I told him we'd talk about it some day after only being able to say that God wanted to see if Abraham trusted Him, even with his own son. I trust you, Lord. I can't even type it without getting emotional and feeling the weight of that. I trust you, Lord. Do we really? To the core? Can we let go? I'm still learning and not there even now. I was thankful for that time in the middle of the night while working to relinquish the control I try to maintain on things that aren't mine to control. Brayden is ours but only for a time. I have to remember to keep him in God's hands.

The early morning trip to Little Rock was uneventful. Bryan and I were quiet with my thoughts still spinning out of control. I trust you, Lord. Brayden was much better, still a little nauseated, but certainly in better spirits. We learned he had grown another inch! He's getting so tall. Did we tell you about his spikes? His hair was finally long enough to start gelling again and his spikes are so adorable! Everyone couldn't believe how much hair he's had grow back and how it's starting to curl a bit! His Oncologist looked him over and remarked again how incredible Brayden looks. Other than the pollen suffering that everyone is feeling this year, he looked 'great.' We asked some gentle questions, trying not to worry Brayden. What to look for, should we be worried, how would they know if there was a 'blast' that showed up. The Leukemia starts as a blast and then quickly multiplies. So now we knew a little bit more, but I'm not sure that it helped. I trust you, Lord. It was another 2+ hours before we had the lab results. In that time, another sweet Mom who had reached out to me in the early days was there with her son. His diagnosis came at 3 and then he relapsed. Hearing her story sent that paralyzing fear through me again. I felt myself breaking apart. Bryan decided to take Brayden to walk around. I had been breathing prayers during our waiting time. Finally I stopped. I looked around and started to really see the others in the waiting room. You can tell sometimes at what stage in treatment some of the other Oncology children are in, just by their hair or the looks on the faces of the parents. But it was the other mothers that really got me. Had I missed this all along? Probably so wound up in our situation and my focus on Brayden hadn't allowed me the chance to stop and really see the others around us facing similar battles and fear. My eyes stopped on another mother whose eyes broke my heart. I felt where she was at and remembered it all too well for the first time in a while. She was holding her son with blankets and his mask on. We would have never known it was a little boy who was probably 5 or 6 who was so small and fragile. He had been crying in pain and she was consoling him. You could see she hadn't had much sleep or rest and there was that desperation there that I've felt too. I wanted to do something to help. I realized again the best thing I could do is pray. I felt so selfish for the prayers of mine that day without concern for others around me. I prayed for God to give her that much-needed reprieve and to guard her heart and to provide her a renewed spirit to continue. I pray she felt that in those moments and hours that followed.

Once the boys came back, Brayden's chemo was started and Bryan and I just looked at each other. I finally asked the nurse what I wasn't sure I wanted to know. "So I guess his blood work looked okay to get chemo?" She got another nurse to bring us the copy of the results. Everything was clear. It was such a relief. I'm mad that I allowed doubt to still creep in, but Lord, I trust You. We felt so renewed ourselves with the good news. I love that for now, Brayden was oblivious to our relief. It was another Monday of getting chemo for him. We decided to celebrate and have a rare treat and eat out...actually inside a restaurant at a table! Brayden was jumping up and down at this opportunity he knows doesn't come along often. He did SO great and was careful not to scare me too much and remembering to Germ-X AFTER touching the menu. That evening felt like a new day, like a gift. I was so thankful for that moment of relief and pray that time span until the next worry or fear that creeps up is much longer away. In the meantime, I'm remembering to work to trust Him more.

This week has been a week of loss and grief. Another sweet boy we met via Caring Bridge lost his battle with cancer. He was 8. Please say a prayer for his family during this unimaginable time of loss. He was able to be at home with them after months of chemo his cancer stopped responding and took over his little body. Then Tuesday night we were rocked to the core when we received an email. A little girl from Brayden's school had passed away. I struggled with how to tell Brayden. He's faced loss before and the comfort has been in Heaven and knowing they're in a better place. We sat Brayden down and he talked about how he knew her brother. We gently explained what had happened and we started to pray together as a family for the comfort of this family facing such incredible loss. Suddenly Brayden's grief for this other sweet boy losing his sister was just more than he could bear. It was such a tough couple of hours in comforting him. I was so worried about having the right words to say. I found myself having conversations with him about loss I had hoped to never have. I remembered the fear last year of wondering if I'd have to have those conversations with him at that time. It was hard saying the words out loud. But it was a good reminder for all of us. We're only here on this earth a short time. Please be in prayer for this grieving family as well. The next morning our thoughts were with them as we prepared for school and I dropped Brayden off. It was the last thing I wanted to do. I wanted to keep him with me all day in our little home cocoon. The faces of other parents in the parking lot said it all. I breathed prayers again as we could only imagine what this sweet Mom was feeling today.

Please remember to not take any time with our sweet children for granted. Revel in the mediocre. I love mediocre & boring! I miss those boring days with no reminders of pills or schedules or appts or checking ports or sneaking a check for fever when he's not realizing what I'm doing. Our time is so short. Which brings me to the "Dash" from the title of the post. The other sweet boy that lost his battle on Monday had his funeral this week. An amazing thing was shared at his graveside service that they shared with others on their Caring Bridge site that I wanted to share here. The premise is that on our tombstone we will all have a birth and death date, but it is the dash in between that really matters the most. The people whose lives you have touched will know what the dash really means. It doesn't matter the dates on the other sides of the dash. No matter how short, as we've felt personally in our own lives with other losses, so many have been touched. I pray today that your life has been touched in a special way through Brayden's Journey. How are we spending our dash? Please click hear to read "The Dash Poem". And I promise to work harder to trust Him if you will too?

1 year ago...Thankful

This day is a bit harder than I thought it would be. So much of it mirrored this same day last year. Getting up and ready for school and work. Breakfast with my sweet boy. Fixing lunch for the day. Dad already at work. Dropping him off at school. Walking in with him. Then walking out after hugging/saying goodbyes. Visiting with another Mom about the hectic pace of life. And just a few short hours later...the ER. The "C" word. Tears, losing breath, wondering how I can stand, not able to hold a pencil or face the blue eyes of my sweet boy. How do I tell him? Then the life flight. Then Arkansas Children's Hospital. ICU. Diagnosis. Fear.

Words fail me today. I'm grieving and didn't see it coming. Holding on to the thankfulness and gratefulness and appreciation of another day, another year is getting me by. I'm overwhelmed with sadness. Had I been avoiding this all along? Brayden knows what today is. We talked about it a lot this weekend in our getaway to Branson to celebrate this journey and his amazing strength, tenacity and resilience. He asked me last night, "Mom, so tomorrow. That's the day last year when I was hitting golf balls with Dad at the driving range, right?" Yep. Everything seemed so normal and right and within hours your world collapses all around you. Words you never thought you'd say like survival, success rate, side effects, risks, chest tube, mass, chemo, Leukemia become a part of your vocabulary in a way you scream and wish they never were. Having to face Brayden through this has been the toughest part. I've tried to protect him from it. I can't. So we walk together, hand in hand. The hugs and pats, and leans and kisses the last few days from Brayden have been so special. I don't want to take them for granted. I love when he unexpectedly rubs my back or gives me a hug without me asking for one or smothering him with one! I'm so thankful for those moments. It's impossible to fathom how after this year we could ever take even one of those for granted.

I'm not sure how the rest of the hours of today will unfold. We want to honor Brayden's courageous fight and celebrate all that he has endured while knowing so many risks and what-if's that loom overhead. I want to share more with each of you and pray I have the strength to do so. I'm working to not be fearful this week. Brayden's blood results on Monday knocked the breath out of me. After a double-check they were confirmed. His counts aren't too low...they're worrying me they are too high. I'm working to not be alarmed until we return to ACH on Monday. It concerns me that the pattern they've had for 4 months next week has never shown this. Before I ask a million more questions and let fear grip me into paralysis, I'm trying to breath and not read too much into the results. For now, we're thankful he was able to receive chemo. He's so happy to be at school this week. For that, I am thankful.

I spent some time this past weekend reading old emails. I've kept them all. Every note and email and card. So much of what each of you and many others said carried us through. It was unnerving to read my words from those first hours and days and be sent into a tailspin of emotion and feel, smell, hear all that happened one year ago today. Realization has dawned that we have yet to truly heal from it all. It feels like we're just now able to start to look at the fresh wound we've tried to avoid. Have we gone through the motions? Does shock really last this long? It scares me to wonder if Brayden is where we are. I pray his sweet spirit, his precious heart full of faith and without the knowledge of what unbelief even looks like has helped him to move forward further than where we are. I pray we aren't holding him back from his emotional healing from the scars from the last year. I feel more ill-equipped than ever to ensure I am providing what he needs. So I hold fast to the faith that I am not his Provider and I can never give Brayden ALL he needs. So we pray and I hear Brayden's thankful words to our Father for his healing and helping him to get through this past year and I cry tears of thankfulness for a child whose generations of faith throughout our families have prepared him for such a time as this. Psalm 5:11

I read this today and it met me right where I am from a daily email called (In)Courage written by Robin.
- we are not raising our children for ourselves but for someone else; whether that's relative to their future mates or solely for service to the King;
- that regardless of circumstantial or perceived danger, their is no safer place than in the center of God's will;
- there is no greater joy than to know our children are walking in truth

Here are my good intentions finally coming to fruition with some pictures to share and see the thankfulness of normalcy at play for Brayden.

December 2009 - Mom's favorite shirt


January 2010





February 2010 - silly Brayden with sprouts of new baby hair starting to peak through


March 2010 - Return of Spring and a chance to play outside


10th Birthday




Finally able to see the AR State Capital in person


March 29th, 2010 - 1st Day Back to school. So happy to finally use his new backpack


Birthday Celebration finally with family


April 2010 - Time with family, Great-Grandparents indeed!!


Easter - Time with family


1-year Celebration weekend in Branson - Noah the Musical


Looking up and seeing this melted my heart...Daddy's Footsteps


4/19 - Impromtu Field trip - while getting Chemo on Monday at the local Oncology clinic, they took Brayden back and let him look at his own blood under the microscope! Check out those curls coming in!


4/20 - Back to good times - soaking up the spring sun & loving outside with Hershey

Celebration Blood Drive

It's hard to imagine it's been 1 year tomorrow....1 year since our lives were forever changed. Although hardly a day goes by when we're not gripped by fear of the what-if's, we're so thankful for this gift of new life and 1 year we have been given with our sweet Brayden. A lot has changed since last year's ER visit, life flight to Arkansas Children's Hospital, ICU and the horrible diagnosis of a rare form of Leukemia, T-Cell ALL. Countless rounds of aggressive, high-risk Chemotherapy, Radiation, blood transfusions, and a year of missed school and times with friends tested our hearts and we've leaned on our love for one another and our faith to get us through. We're so thankful for all the prayers sent up on Brayden's behalf. We're thankful for little things today like another birthday, new baby hair growing back and his bald head becoming more of a memory, returning to school and friends and recess, a chance to go out to eat or see a movie or just play outside after so many days in strict isolation while his system was too weak to fight off even his own germs.

Brayden has been truly resilient and yet we have another 2 1/2 years to go with weekly chemo and monthly trips to Arkansas Children's Hospital while we long for the day we hear REMISSION. We want to celebrate Brayden's journey this past year since his diagnosis and all that he's endured by having another Blood Drive to give back. We have been personally touched by other donors and taking a few minutes to give blood and give back is such a priceless gift. Please help us honor Brayden's fight and sign up today to give blood! We want to help get enough donors in to reach our goal and are so thankful to all those who gave last time to help us surpass our goal! If you donated last time, you can give again!! Please join us on this special day of celebration Wednesday, May 12th, 9-3 at the Bentonville Plaza. You can drop in to donate or use the details below to secure your appointment time. Thank you in advance for your time & giving the gift of life!!

1st Day of School, Easter, and Time

What a week! Such a whirlwind and I can’t believe another week has passed. Brayden’s had a great week. After his Oncologist increased the dosage on his medicine that helps with the Neuropathy in his legs, we saw an amazing difference. He’s not complained nearly as much about the leg pain and we were so relieved to see him able to get around a bit easier before his big return to school. That first morning back was a flurry of activity. A truly special moment was our little drive to school, windows down, breathing in the spring air, listening to the creek as we passed by, having our morning prayer. He said, “Just like the old times, huh, Mom?” Yep – and I wouldn’t want it any other way. What a blessing, what a miracle. As I was treasuring the quiet moments, we pulled into the school parking lot and I reach for my camera and realize…Brayden is GONE! He tore off through the parking lot as I yelled after him. I guess the anticipation was just too much. I trailed behind him hearing all the kiddos in the hallway telling each other, “Brayden’s back!” It was so special! His teacher from last year gave me a hug and was grinning from ear to ear. I was glad she was able to fill me in on what I missed. Brayden had burst through his classroom door announcing, “I’m BAAAACK!” Too funny. So there aren’t many pictures for me to share, but I’ll share what I can!

The two half-days back were so full of activity and excitement. The kids were so supportive and so excited to have him back. We played a little trick on him while the kids sang Happy Birthday to him at lunch, even though he wasn’t staying. There were so many wonderful moments. He was drinking it all in and seeing him beaming was doing my heart good and I could tell from him the enjoyment of being back at his school with all his friends, his classmates, his teacher, was also doing his heart good. The long Easter weekend was a good break to see how his stamina would hold out. We were able to have a celebration dinner with our family for his birthday. Due to his counts, we had to put any get-togethers on hold from before. We had a fun dinner at World Garden and Aunt Stephanie had some yummy birthday cupcakes waiting for us at her house. He was so cute seeing him love on his cousins he hadn’t been able to see in a while.

Friday we headed out for my Grandparents’ in Oklahoma. It’s so peaceful there. Just seeing the beautiful land, hearing the birds, smelling the fresh air rejuvenated both me and Brayden. He’s decided he wants to move there and of course, Grandma would LOVE to have us closer! I was so glad she was able to see him so healthy. She hadn’t seen him through the hair loss, Radiation effects, and the last 4 months when it had been so tough to see him and there was no denying the impact his treatment protocol was having on him. Even though it had been a while, I know the wait was a good thing and it was good for her to see him with lots of hair and looking so much healthier than before. Brayden loved getting to be in a hotel – just me and him – that night. Dad had to work, so we were on our own. The next morning, we headed over to Bryan’s family’s house to hang out, dye Easter eggs, have a big hunt at the park and play. We realized it had been over a year since we’d been to their house. Wow…it was so good to see everyone again. Brayden’s other cousin turned 2 a few months back and it was precious to see them so happy to see one another. It was a gorgeous day and we loved having time to visit and enjoy the Easter festivities with family. Sunday marked Brayden’s first time to be back at Church in over a year. He loved getting to see all the familiar faces. Our hearts were warmed by all the encouraging smiles and hugs and reminders of prayer sent up on Brayden’s behalf over the past 11 months. We were sad to have to head home, but we knew Monday was another big day!

Today marked Brayden’s first FULL day back at school. He was so anxious last night planning his lunch to pack for the next day. Just getting to stay a whole day and getting to eat lunch with his friends was reason to celebrate. I’m still a bundle of nerves. We prepped with plans to make sure he’s cautious and using Clorox wipes, Germ-X, and washing his hands correctly throughout the day. I know the risks with having him in school yet we know the benefits for him being there are so substantial. He’s no longer in his little bubble with me each day. I’m praying he has endurance to make it through a long day. I pray his stamina holds out without him having to over-do it to keep up with his friends at recess. Then after the school day, we’ll go directly to the local clinic to check his blood counts and have his monthly chemo cycle administered. The new normal for all of us…sitting at work wondering if he’s okay and how he’s doing and what he’s thinking still knowing the chemo continues and the battle rages on against his body. I hope the worry subsides as we settle in more to our new normal.

It’s been an incredible week. I was reading another Mom’s words as they fight with their daughter and identified so intimately with her words resonating about time. Cancer steals time and you wake up and think it should be the start of the school year…it’s the end. I’m glad he’s going back but did we really lose a year? Are there really only 7 weeks left? I’m trying to frame it in my head that we gained a year in a very special way vs. wrapping my brain around the time that has passed. The time aspect has been hitting me especially hard in such an emotional way lately. I guess it’s the realization how quickly he’s growing up. Spring is here again and it feels like time stood still in some ways for us since last Spring’s changes. We felt like we missed summer and it’s crazy to think it’s circling back again. I was fortunate to give blood at another ACH family’s drive last week. It was wonderful to see the tremendous response they were able to receive. I had been unable to give at Brayden’s Blood Drive in December because of him having to be in un-planned Isolation. It was so fulfilling to be able to give back in such a personal way and realize how much this means to our family and others. Brayden was so protective when I got back home and checking out my wound! It’s nothing compared to what he has to endure yet seeing him so protective of what little I endured caused me to wonder when he will truly grasp the gravity of all he has been through. We try to protect him from so much as well as those of you who follow his journey here. There are still so many moments we hold our breath and pray for the miracle to continue – that Brayden’s response to treatment will continue to remain positive and that his protection from all that he’s endured will remain. I try to push all the fear aside and continue to live each day. Even while some things seem so tedious like taxes, work, bills and school – I try to focus on the little moments in life and not take any of those for granted.

Our 10-year-old

So weird...still can't get used to this! I feel so old! I've really been reminiscing with Brayden over the days when he was a baby. Such a sweet, happy baby! Always smiling and happy, rubbing his feet together like a cricket when he would eat. He rarely cried and the only way I knew he was awake from his nap is when I'd hear him playing! I'd love opening that door to seeing his big grin greeting me above the bumper pad in his bed. Oh, where do the days go? He's been eating up the memories. Yes, we have scrapbooks, but he's actually been allowing me to be a bit mushy and I'm loving it!!

We had a big time eating a fun dinner in the hotel room, playing games and watching some tv to finish out Brayden's big day. NO ONE slept well. We were so miserable in a different hotel. It was too emotional to be back in the one we had lived in during Radiation, but this one was just not good for anyone to get rest. Nevertheless, we pressed on this morning. Sedation mornings are never fun. I think the not getting to eat part is even worse when he KNOWS he can't eat. A normal day, he might not even be awake yet! But a sedation day is torture. It was great getting to see his sweet Sedation Nurse. She was too sweet in bringing him a birthday gift. She's too partial to Brayden and he's figured this out. So when we heard who the Dr. would be for his Sedation procedure, Brayden was excited. This is a fabulous Dr. who had worked on Brayden so much while in the PICU. We saw him finally a few months back and finally realized through some of his words how bad things had been in those first days. Anyway, Brayden loves him (we do too) and Brayden was excited to hear. Suddenly, I look over and his Sedation Nurse has phoned him in alerting him the procedure is ready to go and the green light for him to come over...when she hands BRAYDEN THE PHONE!!! My mouth dropped. Brayden says, in a very 10-yr-old voice trying to be 20, "Yes, this is Brayden Jones. I'm ready for my Sedation procedure please." I hear Dr. X howling with laughter on the other end of the phone. Oh no. Now not only does Brayden get leeway with tricking the machines, applying his own connectors, playing with the breathing mask, he's now PHONING IN HIS OWN PROCEDURE?!?! We love how much they love our sweet boy.

Brayden's counts were great today as we said good-bye to Round 1 of 11 for Maintenance cycles. We were glad there were no interruptions to chemo for this typically tough first 90 days. But we remember Brayden is anything but typical. His sedation procedure went well and we realized again from another nurse how thankful we are to have the Oncologist we have...when understanding how other procedures are handled with other Oncologists. He definitely is getting superb treatment and we are SO thankful. Dr. S is thinking his extreme leg pain is a result of the Neuropathy worsening or the medicine not able to control it as much. When you think about it, it has been a year that this dosage has worked. We could have had to drop the Vincristine chemo med that causes the Neuropathy, but without it, a cure is so much more difficult to achieve. So we're increasing his medicine dosage to help the Neuropathy and after a very rough day, he's resting also with a pain pill. For Brayden, that's incredibly rare. We're definitely hoping and praying this helps give him some relief.

Brayden's Radiation follow-up was surreal. He admitted it was strange to be back. I was surprised he didn't want to go to the back treatment rooms to say hi to the team that worked with him. But I totally understood. After his check-up and some laughs, he was happy to be out of there and on our way again.

My favorite part of this new 10-year-old methodology is 'Must I?' I swear, if he calls me Mother, I'm gonna cry. But after nearly every request I made of him today, it was promptly followed with, "Must I" I blame it on Little House on the Prairie. I can't keep a straight face when he says it, but it sure makes him sound older than 9 when he says it.

Tonight after the arduous drive home, we finished the final prep work for his official return to school! Tomorrow is the big day. It feels like the 1st day of Kindergarten with all the butterflies and anxiety. For me...not him! Backpack is packed and set out, clothes are prepped and ready, lists are made, but I'm not sure I'm ready for this. I know it's going to be a GREAT thing. I've got my camera ready and am SO happy for him to have this opportunity to return to school. It's been so long and I'm really happy for him to have a little time to remember what it's like to be in 4th grade. I'm glad he'll have the whole 4th quarter to be there with his friends. I do hope he doesn't try to hide his struggles. He has a tendency to not let others see the ways he is held back, especially with the Neuropathy and his endurance. I know his need to fit in and be his old self will be strong so my hope is he is happy to meet them where he is today and doesn't over-compensate. But he comes from a long line of over-compensators! Poor thing! Anyway, we better close with rest for all and the big day coming tomorrow. I'll work to post an update and some new pictures of all that hair coming in soon!!!

Happy 10th Birthday!

What a year...what 10 years! It's remarkable to me to think I have a son that's ten today. Brayden - I meant every word that I said in your card. You are such an amazing boy and your Momma still - and always will - think that you are the BEST of all the sons! We've had an amazing birthday week. Although limited to outdoor activities, we've still made time for practicing golf swings in the front yard, watching a birthday DVD at home of "The Blind Side" (so good) and having a mini celebration at home this morning. Brayden didn't waste any daylight on his big day! He watched the clock anxiously until the exact moment of his birth. He gave a big cheer in the car when he was 'officially' in the double-digits. Wow. Using these new digits, he began new calculations for the upcoming milestones in his life. 16...driving. Whoa...I just want to slow the clock just a bit and breathe in these moments.

This morning he had his celebratory birthday breakfast. After enjoying his new movie and special dinner last night, he enjoyed another movie while mom got ready. After sending him off to his room, he was able to come back out EXACTLY 10 minutes later. (thank goodness the tape held or he may not have given me one minute more!) We had some decorations and balloons ready for him with wrapped gifts and a special Golf Theme. He had a 3-D golf ball cake and after dad directed him in from his room blindfolded, his expression was awesome. He had a great time opening his gifts. Dad found a great deal on a golf bag and some clubs at a pawn shop about a month back while coming back from a road trip. Brayden has been BEGGING for them at least twice a week. It's been hard for Bryan to not slip up reminding Brayden he was cleaning them up to sell. So the sheer joy on Brayden's face to see that was for him was awesome! Dad got him his first golf glove and some practice balls of his own, and now he's ready for the day they can officially go on their first 18 together! (Mom is dreaming of uninterrupted scrapbooking time on those father-son golf outings!)

We had to wrap up the festivities and head out on the road. We're now in Little Rock and about to get some dinner. It's been wonderful just to take it all in today. After hearing Brayden beg almost 1 year ago to see the Capital building outside his room at Children's, we were so happy to fulfill that wish for him today. The flowers were SO beautiful planted all around the building! It was such a full-circle moment for me. I remember those nights looking out of his room at the lit-up Capital building and he was just begging to go see it. I promised him we WOULD go see it but he had to work hard on taking care of himself so he could get better. I remember the feeling of wishing we could just sneak out and go do that without hesitation. That feeling of being trapped and not knowing what the future would hold and screaming inside that it would happen...that he could really get to go someday. Not knowing when or how long away it would be...but still wishing and pleading for that day. It was a beautiful moment to take it all in and get some of those memories on film today.

We have more lists of wishes after he starts on steroids tomorrow night and his counts tick up. It will be a VERY full work week for Mom & Dad, hopefully a return to school for Brayden, and then an awesome Easter long weekend with getting to see family. We're going to make the most of each afternoon/evening this week for more things he wants to do for his birthday.

I'll post some pics soon of an incredible gift he received from sweet Ken & team at Crossmark on Friday. We went after work and Brayden's reaction was priceless! He was gifted with a shadow box set with an autographed football from Dallas Cowboys player Marcus Spears! I was so proud of him and how thankful he was and how amazed he was at such a gift. It meant so much to him. Thank you to Ken & the team for making this happen for him!!! He also was able to have lunch with sweet Korey, our Red Cross contact, as we worked on finalizing details for his second Blood Drive. More details to follow soon!! Thank you to sweet Korey for such a lovely lunch and some yummy sushi! Brayden was SO happy to finally get to go back and enjoy one of his favorites! Thanks also to Nini Annette for helping out so much on Brayden's Spring Break. Even though we were limited on what we could do, thank you for playing and helping and doing what you do best!

I better run. We've got a big day tomorrow. Please say a prayer that Brayden's spinal fluid will remain clear of any Leukemia blasts as he undergoes his sedation for chemo. He'll have 2 other chemo meds administered through his port. We want to ask questions about all the leg pain he's been having and are praying it isn't anything that will interfere with his progress or be permanent. He also has his 3-month Radiation follow-up visit, so we pray that is uneventful for him. It will be quite emotional returning. Looking back at pictures recently, I realized it was during that time there was no denying he was another pediatric cancer patient and that moment just took my breath away. We pray tomorrow is uneventful overall and we have safe travels home to continue the Birthday Week festivities.

I don't want to take a moment for granted today. It's a truly special day. When our lives were frozen in time last year, a birthday celebration seemed so far away and so uncertain. It's truly a celebration today and one that we hope and pray we never take for granted. We are SO proud of you, Brayden! Keep smiling, keep wishing and keep that sweet spirit!!

1st Day of Spring?!?!

Last year I told Brayden when we saw snow on his birthday, to soak it up because it may be the last time he’ll see SNOW in almost April in Arkansas again! WOW! After Saturday’s snow, maybe I’m wrong? I think this may be one of the few times where we went for a walk in 70 degree temps the day before and were worried about a sunburn to a dumping of snow the very next day! It certainly was pretty, though. Hershey had fun eating up the snow and running and playing in it again. We always love the snow, but this time, I think we were all ready for spring. Seeing the daffodils start blooming last week and some green finally coming on the trees had us coming down with spring fever! So the blast of snow was a complete shock. SO now can we please move into spring? PLEASE?!?! We’re so ready for the drive-in movies, picnics, the park, dinner outside. SO CLOSE!!!

After a week of isolation, Brayden was busy keeping up with school work. He’s been a little bit more active. His legs are still SO sore for him a lot of the time. It’s on our list to ask his Oncologist about to see if the Neuropathy is getting worse or what to do to help him. But it has been good to see him finally getting more active again. We’re making some plans for fun birthday activities for him as soon as he’s able. Also, we’re working on a surprise for him since the 1-year mark since his diagnosis is approaching. We know there is no better way to celebrate all that he’s endured and come through than to give back. We have another Blood Drive scheduled for May 12th. For everyone that gave blood last December, we THANK YOU! You can give blood again!!! We want to honor Brayden’s journey and help give back to so many other children who walk this journey too, who have to endure daily blood transfusions, in so many cases. Please be thinking about giving back and keep your calendar open. Brayden will be in school that day, fingers crossed, but we’ll be planning to bring him by after school as long as his counts hold up. My plan is to be there in person to thank each one of you for your generosity. It means so much to our family.

Sunday marked 11 months since his diagnosis. Some will say how fast it has flown by and others say it must have dragged on for us. I think both are true in some ways. It’s unbelievable to fathom how much our lives have changed. I pray it continues to be for the good. We certainly never imagined medicine schedules and being more protective as a mom than I already was, yet this is our new reality. I wonder what a day will look like without having to think again if we did all we could do to protect him, did we give all the meds, and having those constant reminders in the back of my head going on each day. Seeing him with more hair and a bit more energy is so encouraging. But the questions from him still hit me in ways I can never predict. He’s still trying to wrap his brain around 2 years of this schedule. It’s the worst kind of feeling for a mother – to not be able to protect him from that. I just pray that we can continue to encourage him in the right way that he can turn these ashes into beauty for his life with God in his life.

Yesterday Brayden received his dose of chemo, marking the end of the 1st 12-week Maintenance cycle of chemo. He has almost 11 more to go over the next 2+ years. I was in awe that his counts were high enough to receive chemo yesterday. After last week’s numbers, we really thought he might be too low to receive it this week. I marvel at him. He’s made it through the first 90 days and not had to skip a dosage. YEAH! We were cautioned how difficult this could be and how likely colds and fevers, thus hospitalizations can be. What a celebration to realize he has come through yet another hurdle with minimal impacts! We were warned chemo could be skipped, knowing that every time a dosage isn’t given there is a risk for the aggressive leukemia cells to re-gain their hold. Thank goodness for his protection from that and that the chemo has been able to continue its work without interruption.

We’ve got some big days ahead. Brayden’s birthday then a return trip to Arkansas Children’s Hospital. This will mark the 2nd of the 12-week rounds of the Maintenance Cycle, so he’ll have to have a sedation and spinal (lumbar puncture) to continue to the chemo to treat the cells found in his brain. He’ll have 2 chemo meds given via his port. Then he’ll kick off a week of steroids again. We’re excited about Easter weekend and getting to see some of our family. Then just weeks away is the big 1-year mark since his diagnosis. I hope we can properly celebrate his journey. I want him to really see how hard he has fought and how proud we are of his endurance and tenacity. I know one day he will realize how miraculous this journey has been for him. In some ways I want to protect him from that for now. I love that he knows nothing other than fighting and taking each day and that there will be another side to this and that positivity keeps him moving forward. The innocence of children is beautiful and I love that his youth protects him from that deeper level of knowledge that the older ones of us know too well from all that we have seen and heard in our years. So I want to still celebrate that innocence in knowing nothing more than he will fight and win. We want to share this with each of you, in a unique way. Please feel free to send well-wishes or congratulations on a special post I’ll work to do for him. So many of you follow us without us even knowing until we have a question or comment. He would love to hear from each of you and I want to keep this for his scrapbook. His prayer map is still up and serves as an awesome reminder when we walk by it each day. We don’t take any of that for granted and appreciate all the prayers that have been sent up over the last year on his behalf. Thank you to all of you and the extensions of you in your families, friends, Church families, that have and continue to intercede for Brayden. We appreciate each one of you!!!

Group Hug

I’m a little sad today, so I’m going to try and focus on the positives. Yesterday Brayden had his weekly chemo at the local Oncology clinic. That’s when they check his blood counts first and if they’re high enough, he receives his IV chemo for the week, Methotrexate. This is the one they increased the dosage of after his first month. The goal is to keep his counts above Neutropenic stage but not allow them to go too high where it risks his cell growth getting out of control in order to keep the Leukemia cells from coming back. The good news is Brayden’s counts were barely just high enough to receive his chemo. But they are just a handful of cells enough before he’s Neutropenic again. So we’re back to implementing all the procedures to keep him protected from having a secondary fever. Along with that, had to make a tough decision and cancel his birthday plans. It was a hard decision, but we know we need to first keep him safe. We’re brainstorming some alternate plans and see what we can figure out. But we’re all a little disappointed. Brayden is putting on a brave face.

He’s had a very rough couple of days. His legs are giving him a lot more trouble and he’s having a lot of pain in them. We’re hoping his Neuropathy isn’t getting worse and it’s so hard to see him in pain. Certainly we hope tomorrow is a better day for him after he had some nausea today as well.

We’re keeping our fingers crossed his counts recover enough to still receive chemo next week. I know he’s looking forward to Spring Break next week but especially the week after when he’ll be back on steroids again and can get out a bit more to enjoy his birthday week and Easter week. We’re so excited about some family time Easter weekend that will give us all a boost.

Thank you all for your continued prayers for Brayden. I know it can be a discouraging time right now with having to take isolation precautions for him to keep him safe. The pain in his legs can really wear him down and just cuts Bryan and me to the core to see him in pain. Bryan said it’s almost like his body started catching up since January with what it’s been enduring the last 10 months. He’s now starting to really show the effects when you see him walk and how his mobility is a bit limited. We just pray his heart and spirit stay protected from the emotional impacts of this journey and that his happiness and joy continue to bubble over. We all enjoyed a group hug earlier and are hoping for better days again soon.

Birthday Month!

Yes, in the Jones house for years we realized celebrating 1 day each year just isn’t enough. This may have began when Mom was still pregnant with Brayden and wanted more of Dad’s attention. But that’s a story for another day!! I think the birthday month celebration may also be because we were told for weeks Brayden would come early. So my initial due date of March 17th was thought to be so far off! Recently I told Brayden about that and he was bummed thinking how cool a St. Patrick’s Day birthday would have been. Ah, how your mom too wishes you had come on time and not waited another 2 weeks!! How little did we know he would barely make his entrance with only 2 days to spare before the next month of April. So I think it’s fitting we celebrate the whole month of March for Brayden’s big celebration. This year, more than any other year, will truly be a celebration!! We’ve got some fun plans in place. Brayden heard of some other kids who decided to not have birthday presents, but ask for donations for AR Children’s Hospital instead. He knows how much time we spent there and how the little things helped our visits to be more comfortable. He knows how blessed we were with so many gifts to him during that time and I’m so proud of him for unselfishly giving up his gifts to help other children who may not have such a big support system and we can bless them together! We’re also planning another Blood Drive, so all those who donated in December, it will be time to give again! We want to do this to honor Brayden’s Journey and celebrate him! Please watch for the date to be posted VERY SOON!

I was recently reading back over my first posts on this blog. Whoa. It takes you right back. It’s amazing to see how far we have come, especially Brayden. Those first few days were so uncertain, so scary. We weren’t sure if the tumor in his chest wall would shrink or if the chemo attacking it would cause it to break up and shred his liver and kidneys and cause life-threatening effects. We weren’t sure if his lung would go back to normal after having a chest tube in place for 4 days. We didn’t know if his white blood cell count would respond and drop enough. We didn’t know if his heart had suffered damage or would be strong enough to endure the coming months and years of chemo. There was more we didn’t know, but what we did know was that we were surrounded with love and support from so many, with prayers being sent up on our behalf. We knew God was with us and we KNOW he carried us during those unimaginable days I still can’t bear to go back and reflect upon. THANK YOU!!!

Well so much has continued to happen in Brayden’s progress. I’m not sure if everyone saw the last update here. The good news is Brayden hasn’t been experiencing any additional numbness in his fingers. The trip to Little Rock quickly had a scary start. You may have heard about the 3 semi trucks involved in a bad accident in Russellville early that Monday morning. We were literally less than 1 exit length behind that wreck. One of the drivers fell asleep at the wheel, hit another truck and had a very sad ending. We were stuck for an hour and a half wondering what could have happened. When we finally drove past it was surreal. The guard rail had been broken off the top and this huge semi had gone off the road and overturned and had caught fire. Apparently there were concerns for hazardous fumes burning so the interstate was shut down for a while. We were so thankful for protection and even though we were late, were glad we were arriving safe and sound. Brayden was happy to be back and see all the familiar faces after the last 2 months with weather preventing his visits. His Oncologist was so happy to see his hair coming back in! He looked closely for bald spots and was happy with how consistent his hair was. I guess that’s another thing we didn’t know was possible that it doesn’t always grow back all over. We knew it could be completely different, but didn’t realize the baldness in some areas could potentially be permanent. The thing I’ve been loving is how baby soft it is! If he thought I kissed his bald head a lot, I definitely can’t stop rubbing and kissing his soft, soft hair! He’s looking so much more healthier with his eyebrows growing back in too. What a big difference. Thankfully Brayden’s counts were high enough to receive his chemo dose and we were back on our way home. It’s amazing to me his counts haven’t dropped so low that he has had to skip chemo. Like I said before, it’s surreal to now wish for chemo. As his local Nurse told me, we’re working for a cure here and that’s the most important thing. I still get nervous about low counts but now will be more nervous if chemo has to be skipped. They did raise his dose after the first month to keep his counts in control. They don’t want to give the cells too much freedom to go crazy and produce too much on its own. He’s continued to respond well.

This past week he finished up his monthly round of steroids. The higher counts meant more freedom again. With the beautiful weekend, we visited parks 4 different times! It was an incredible gift. He was thrilled to get to spend some time with friends and enjoy a picnic too. Hershey joined us as well and we knew she was happy to be out for so many hours from the house. The fresh air and sunshine did all of us a ton of good! None of us wanted to go home. This round of steroids didn’t affect him like last time with the 15-16 hours of sleep. He’s still working on building up his endurance. Especially after the weekend at the parks, he was so sore. We’ve been doing more stretches and walking and trying to build up his endurance. I know it will take some time and he’ll have to be patient. His weekly chemo locally went well also. As we expected, after a week of steroids his counts were higher and his chemo went well. He’ll have the weekly chemo Methotrexate given for the next 2 years, and monthly he’ll continue to have Methotrexate and Vincristine. He has two more weeks before our return trip to Little Rock, where this will mark the end of 1 round of Maintenance Chemo. I calculated up he has 10 more of these rounds to complete over the next 2 years before he’ll be done and celebrate his last chemo.

This next trip to ACH brings many good things! We’re hoping upon the trip home Brayden will begin back at school! To say he’s excited is an understatement!! I think that new level of normalcy will be a blessing but I'm also so very nervous. He goes from excitement and laying out his lunchbox and backpack to being apprehensive too. It's been a long time and I know it will be good for all of us, but it will certainly be a huge transition as well. Thank you all for your continued prayers and we hope to be able to thank each one of you in person some day!! Now back to celebrating the Birthday Month!!!

Uncle Danny

Brayden's sweet Uncle Danny wrote this for him. The day he sent it to me and Bryan we just lost it. It's so beautiful and was such an amazing way of sharing his special gift with Brayden in such a special way. I asked him if it was okay to post here and he agreed. I just never thought it would take me this long! We're so thankful for amazing friends in our lives who have truly brought so much more love and joy to each of us! We can't imagine this last year without you guys! You dropped everything to be with us in Little Rock when we heard the news. I'll never forget that horrible phone call to you & solid words back to tell Brayden his Uncle Danny was on his way. Oh, my heart broke into a million pieces. You stood strong with us in knowing Brayden would fight and make it through. You've laughed with us, worried with us, and we love you both so much!!

What do you think of in the morning
When the sun starts to rise
Most of us think coffee and work
And never really realize

For what is going on
Cause it’s hidden by their grins
It’s a deadly disease called cancer
Who knows when it started
Or how it might end

The journey is long and weary
And may last for years
Your faith will be tested
And your eyes full of tears

But he wears his grin
Just to show you how to be strong
For he is not afraid of the journey
Cause he knows he’s not alone

For in his eyes you can see
The power he has to win
So believe it in your hearts
As he already does with his grin

The space is now empty
Where once something was
He body is free
Of this deadly cause

It will take time
But the pace can be slow
Take this opportunity
To watch the little man grow

And I have one big wish
I would love to pass along
I wish all the other little grins
Were as strong as
BRAYDEN K. JONES

Where has the time gone?

I'm so sorry to all of our devoted readers for leaving you in a lurch. I did a double-take tonight. It's been one month tomorrow since I did an update here? There's no way! I guess since we're living it day in, day out, I forget to keep everyone in the loop. My mind can't even comprehend it's been one month. I promise to try harder in the coming days and weeks to keep everyone updated. I will tell you your comments are such an encouragement to uplift our family. I think I may have started to doubt if we really still have readers or active followers, so I held back. That, in addition to a crazy several weeks with a flurry of activity have kept me from posting. But, I'm back. Please feel free to send any questions you may have. We love each of you and want to be sure we continue to share in ways that help you to see where Brayden is at in his journey and help you to know how to agree with us in prayer for his protection and healing.

Well, the biggest news is Brayden made it through the 1st month of Maintenance Chemotherapy with flying colors! His counts stayed steady and he did so well. All the crazy snow here at home and then in Little Rock held us back from making the trip. So we continued here at the local Oncology clinic. Since my last update, his bone pain from Radiation finally began to subside after the 5th week. So thankful!! Then...2 weeks ago, his counts didn't quite come up to where they had the time before with the round of steroids. I knew we had been warned this would happen. Sure enough, this last week's Monday chemo showed his counts hovering above the Neutropenic range, but still high enough to proceed with chemo. That's tough because you know it's going to drop his counts again, but we need the chemo to keep working and prevent new Leukemia cells from forming. We know skipping a dose of his weekly chemo was a likelihood and very common in this phase of treatment, but were hoping we could avoid it. I've grown from being terrified of the chemo hitting his body, watching it be pushed into the port just above his heart, to being thankful for it because it's working to save our sweet boy. So now facing a trip to the Oncology clinic on Monday and worrying his counts won't be high enough to receive that dose of chemo has me concerned. We're praying his counts rebound but stay within a good range so that he can continue with his treatment but not be too high. It's a delicate balancing act.

When he started the 2nd month of Maintenance, he kicked it off with the 5 days of steroids again. We were prepared and ready with healthy snacks, knowing he eats more. But this time was far different. At the same time, it was decided his counts were a bit high the month before, so his weekly chemo dosage was increased. He received an increased dose of the Methotrexate, another round of Vincristine, then continues the nightly chemo med at home. We don't know what was different, but it was such a shock to us. After 6 good weeks, we forgot about how bad the nausea can be. His bright eyes were dull again. Suddenly he was sleeping 16 hours a day from bedtime until 1 and 2:00 in the afternoon. It was so incredibly hard to be reminded of all those feelings and worry again. He had just been looking SO good. So the last 2 weeks have been tough. His appetite has made a SIGNIFICANT drop in the past 2 weeks as well. We're working on eating as good as possible and not drinking calories, even from V8 or OJ to try and ensure he doesn't fill up from drinking. It's ben tough to see him so vulnerable again. And even in the toughest days, I don't remember him being so weak, so exhausted, and just dragging so much. What hit my heart the hardest was hearing him say he felt like he was in the hospital again. Those days came back like a flood. I guess I try to stay present and focused on the here and now and to reflect on those days or be thrown back to them in that moment with Brayden just broke my heart.

Thankfully before all this hit, he had a couple GREAT days. We got to see a movie again. He got to eat out at 2 of his favorite restaurants, 1 with our sweet friends. He got to enjoy the Super Bowl at our friends' house and still cheer a little bit (before he crashed) even though his 'Boys weren't playing. He got to go with me to the new Neighborhood Market later one evening. You would have thought it was a toy store! He was so happy just to be out and after not being in a store for so many months, it was a thrill for him to shop a bit for some healthy snacks. He was able to visit his buddies at Mom's old office at Jack Link's and sweet talk them into some jerky and some fun stuff. He was especially thrilled to get to see his friends at school for an hour. He even got to have a sleepover at Nini's and to be able to have a night away from Mom & Dad had him more than excited and asking for another night away! Finally, his cousin celebrated his birthday at Fast Lane, the same place Brayden got to have his party at last year. It was just 3 weeks prior to his diagnosis that he had his party there and it had been at the top of his list to get to go back. We never dreamed it would be this long. So that was a really nice celebration for him. But even in that fun time, he was still a boy who, under the surface, didn't have the stamina or ability to run with the other boys. He took it all in stride and we're planning the next trip back. We've all been so thankful for those opportunities he's had to feel 'normal' again.

We're praying Brayden is able to bounce back soon. With his counts so low, we're back on guard with germs, following all the old precautions we were able to let slide for the past 6 weeks. The reminder of his Oncologist's warning to me that even the slightest cold could give him a huge setback has us praying also for his protection from any germs. He's done so great so far, so we're praying that continues.

A big celebration is quickly approaching. 10 months tomorrow will mark the time that has passed since Brayden's diagnosis. His 10th birthday coming up is followed closely by the 1 year mark. We're working on planning a special "Celebration" for him that we would love to share with you. There have been some special things for us that he's had to miss, like the Spirit Night and the Blood Drive. We're hopeful that this also marks the 12-week end of the first rotation of his Maintenance cycle. Another 12-week cycle will begin, but this will be 90 days beyond when he began Maintenance and when we're hoping he can return to school. So there are so many milestones to celebrate. We'll share more information soon, but for now, if you would like to join us, we're planning on offering the opportunity to bring donations for Arkansas Children's Hospital in lieu of gifts for Brayden. We're working to coordinate another blood drive, so that those who gave in December will be able to give again! If you would like to join us, please email us at jonesfam4877@att.net.

Before I go, I wanted to share another piece of BIG news that happened last week. Brayden's sweet bald head started to show some little black dots! Each day we'd see the changes and his little eyebrows are coming back in too! I'll try to post a new picture soon so everyone can see how his hair is coming back in! His nurses last week were so surprised to see this big change! It's SO soft! I guess if he thought I kissed his head a lot before, I really am now! It's a great sign of life and his recovery and a little peak at normalcy creaping back in for him. We can see so much excitement on the horizon for him and can't wait.

What's next is another weekly Oncology appt Monday then Little Rock the following week. We're praying for his protection. He started to complain of numbness in one of his fingers. My heart stopped. So far the neuropathy caused by the Vincristine was isolated to his legs. He takes a pill 3 times a day to help with this. We knew that if it spread, it can cause permanent damage to him. Many times the Vincristine will be stopped as part of the monthly chemo regimen to prevent that damage. We hope and pray that this doesn't continue because we know this Chemo is key to the success rate or Leukemia Remission. Please pray with us? Love and blesings to all of you!!!

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.

Whirlwind Weekend...And a Miracle

Wow...the days have really flown by lately. We had a BIG surprise and got to take Brayden Friday afternoon for the last hour of school to be with his friends. I was cracking up! He all of a sudden couldn't walk or stay quiet! He ran to his classroom and it was precious seeing all of his classmates' faces light up! He knocked and ran in to his class! His teacher had this look and I okayed everyone that he was alright. They took turns and ran up to give him big hugs. His buddy still did their old secret handshake/body bump! Brayden assured me later he did it with his right shoulder away from his port. Did my eyes bulge that much when he did it that he caught that look of concern in my eye? I had to smile that he thought of that and was so proud he was being careful. I felt so bad for his sweet teacher. Brayden literally had no filter and said EVERYTHING he thought! He marched straight to his desk and started unpacking. I guess right before we left when he asked me if he could take the Cowboys backpack he got this summer, he made sure to pack it up! He was settling in. He said several times, "Whew! This is so much better than the webcam!" I kept trying to sshhhh him but it was in vain. He was just overjoyed to be able to be physically with his class again for the first time in 4th grade.

Our timing was good in that he got to present a Book Report he had done for the class with some of the other children. Then they got to go to the corner for one of their curriculum books and popcorn read. As I sat back and took it all in, my heart was full. He was finally able to interact and feel normal for just a bit. I also mourned the loss of the normal days he'd missed. My heart lurched hearing another buddy mention the infrequent haircuts Brayden would be needing! Brayden took it in stride saying he'd be having more haircuts again soon. Hearing him read, seeing the sweet looks from his friends, realizing he was having this special time was so emotional. There are times when it hits me just how much things have changed and seeing him amongst his peers was another time. But hearing his comments and outbursts and seeing his smile put all of that aside. He truly loved that last hour of the day and is counting the days until he can go back full time.

We knew Brayden could go for a quick visit because his counts were so high. He's been on steroids and will begin another chemo tomorrow. So prior to that dose, we knew we had some time for him to enjoy more freedom. We met my sister, her fiancee, and my nephew at Brayden's old favorite restaurant. He soaked it all in and everything tasted so much better after missing the treat for so long and having the company of family with us to smile and laugh. We ran to Barnes & Noble, one of his old favorite places, and checked out some books. He's still very aware of looks and stares but is doing so much better with it. Sometimes he will get upset and a little mad, and other times he realizes it just comes with the territory.

The next day was finally Christmas with Bryan's side of the family. We met them halfway in Oklahoma and it was so good for him to see his sweet cousin that just turned 2. He can't hold back the kisses and hugs with her and she will giggle and laugh at just about anything he does. It was great to see some awesome family friends come out to see him as well. Seeing his Nana, Papa G, and Aunt Kimmie was so special and getting to catch up with them. The few hours we spent together just wasn't long enough. He had some trash talk going on football and I think put everyone's hearts at peace getting to see him so lively and active and incredibly energetic. We kept hearing how good he looks and how tall he's gotten. 5 feet for 9yrs old - just trying to keep up with his Daddy & Papa G!

We decided to surprise his Papaw David at work on our way home and that was SUCH a nice treat. He always will tell Brayden "UNCLEAN! UNCLEAN!" when he tries to come hug him before he's showered after work. So when Brayden ran over he had this look of panic. I reassured him it was okay and it was so sweet to see him take it all in.

We definitely made the rounds this weekend in trying to see our family. We're not sure how his bone marrow will respond. Speaking of...I have some incredible news. We made it to Little Rock and back last Wednesday for Brayden's treatment. We had to get up at 3am, so it was a very long day that took a few more to recover. Then with all our activities this weekend, I haven't stopped to post an update. So, we learned Brayden's end of treatment date will be in August 2012. Wow...that seems so far away. We got more information about what his Maintenance Treament Roadmap will look like. His awesome Oncologist is having 1 chemo med he is to get once a week done via his port. This is WAAAAAY better than the 20+ pills he would have had to take to get it down. His schedule will be:
- Week 1 - Little Rock for Vincristine Chemo via port, check counts, physical, etc. Once every 3 months, he'll also receive a Spinal Sedation (LP) with Intrathecal Chemo (Methotrexate) to treat the Leukemia cells present in his brain. With Week 1, he'll be on 5 days of Steroid dosage
- Weeks 2, 3 & 4 - He can receive Methotrexate chemo via his port locally
- Daily he is on another chemo pill each night before bed with varying doses throughout the week

This treatment plan will repeat in 12-week cycle/intervals for the 2 1/2 yrs. We had many questions about his counts and how everything will shake out. We were warned it can be another roller coaster ride. With the High-Risk aggressive treatment he's been on, his Oncologist reminded us just how much of an impact this has on his body. That along with the Radiation can take a toll. Even a cold can give him a big setback and cause his body to take a lot of time to recover. His counts may take longer to drop going forward, but they will also take longer to recover. They will adjust his chemo dosage based on his counts and how his body responds. He reassured us many times his counts may be too low to receive chemo and that this is completely normal and part of the response of his system to all he's been through. His bone marrow may be so 'burned out' it may take it a while to bounce back and recover. So, we'll have to be cautious and pay attention each week to see how he's doing and then remember to not plan too far ahead.

Are you ready for a Miracle? We certainly didn't see it coming. His Oncologist was so wonderful in coming to see Brayden and check on his progress even though it wasn't his day to be in Clinic. We're so thankful for him and his awesome nurse. Have I said before how he's always so calm? I remember when he was explaining Brayden's diagnosis, all the risk factors, and his voice was so even and calm. After seeing the Hudson special with Captain Sully on the US Airways flight, it's that same calm. "Brace for Impact." It's amazing. That's when you know they have a gift. So, he calmly explains the treatment roadmap, his chemo for the day, and that he'll also be receiving a Bone Marrow biopsy. Yikes! My breath caught. I didn't see this one coming yet. After 8 months of treatment, you hope and pray it's working. You push your faith and cling to it that his body is responding, the Leukemia cells are staying gone and not returning. But with every time Brayden has a new pain or trouble breathing or a headache, you can't push it out of your mind. It's the first thing I think of and I hate it. I long for the day when that isn't my first thought...wondering if the Leukemia is back or if it's really gone. To suddenly have a microscopic report of how he's responding was something I wanted to run from...the fear grips you again and you aren't sure if you want to know. But Dr. S keeps us so normal and even-keeled and reassures this is just part of the process and we'll have results back soon. Those 20 minutes after we kissed Brayden goodbye and his sedation process began, became one of the hardest of the many, many times we've repeated the same process. All the old, familiar feelings came back while we waited. You try to push it aside and cling to faith and it just resonates and taunts you, unrelenting. We went back to be with Brayden as he was coming out of sedation. My eyes caught the vials with his bone marrow on the tray and his nurse take them away, knowing it wouldn't be long and wondering what was in that vial that our eyes couldn't see. We had other fears and concerns sweep in with some unusual pain Brayden's been having. We were so worried he had a fractured hip or pelvis. So we sent out texts for prayers from our family while we waited for an x-ray. All the steroids he's been on make his bones so soft and breaks are so common for oncology kids. Did I forget to mention how he can't stay still when he's with his cousins and thinks he can jump off of stairs and run around? Maybe the x-ray was a welcome distraction from the looming results and we sent up many thanks that he was okay and everything looked good.

And almost as calmly as it was announced that he would have one, his Bone Marrow results were explained to be clear. CLEAR! No Leukemia blasts were found!!!!!!!!!!! IT WAS BRAYDEN'S MIRACLE! No matter how much you hope and pray it's working, the reassurance that all he's had to endure the last 8 months has worked sent such a calm and peace over us! It was truly miraculous to us. It will still be 3 yrs before his Oncologist will say the word "Remission" to us. But this was the answer we had hoped for and had been afraid to ask about. Thank you, Jesus, for your protection! Thank you for the healing! Thank you for the restoration for Brayden!