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!

More Pictures as Promised

Wow! 4 posts in 1 day - I'm certainly making up for lost time! I took a couple hours tonight after Brayden went to bed to catch up on some of these pictures we had been wanting to share. He has really changed, especially since Radiation. Here are some of the things we wanted to visually show you and share with his bloggie friends.

Happy New Year 2010!
Brayden managed to stay up past midnight to celebrate with some yummy food, sparkling grape juice from Nini Annette, great friends, fun games, and some yummy food. He had an AWESOME time finally getting to see some friends and Uncle Danny did an incredible job of keeping Brayden laughing all night with only the humor that Uncle Danny can bring!


Christmas Morning
This pic absolutely CRACKS me up! We usually get Hershey a little something and this time Brayden helped her open it. Even when you say the word 'treat' Hershey's ears perk up, she stands taller, and is VERY eager to hear where and when she can get said treat! Brayden's laugh is so infectious and makes me smile! He could hardly keep from laughing while Hershey sat at attention asking politely for this treat Brayden kept talking about! It was a great moment.


The magic and wonder of Christmas morning! Brayden melted our hearts when he told us this was his best Christmas ever because we were all together. I had to write down some of our favorite quotes from that day and the days leading up to it so I wouldn't forget some of the amazing things he said! Our favorite this year was on Christmas Eve when he was wondering if he was on the naughty or nice list this year. Dad asked him which one he thinks he was on. Brayden didn't miss a beat and said, "Since I've been a little of both, Santa needs to have a Maybe list to put me on!" Priceless.


White Christmas
Waking up to a white Christmas in our backyard is SO RARE! I missed how long it's been since the last one. But the magic and miraculous event wasn't lost on us. Although he could only enjoy it from the deck, Brayden wasn't missing a moment to take it all in. It was amazing to see and SO beautiful with the Christmas morning sun shining on it!


After Mom & Dad finally got to bed around midnight, we were so thankful for Brayden's agreement the night before. When trying to plan when to get up and make breakfast, I decided toask him what time he was planning on getting up. I threw out 8:00 and was stunned when he said, "DEAL!" Score one for mom! I could sleep in a bit! So imagine my surprise at 6:30 when I walk into our living room and see this! His gift from Santa had definitely been inspected and was far away from the other gifts. He had read a newspaper article about his Papa G from 15 years ago. He had his school yearbook out in the middle of the floor and a few toys. His anticipation just got the best of him! I reassured him to always wake me up next time and my heart broke a little thinking of him trying to go back to sleep after being up since 1am! But it was so precious to see him sleeping in his robe from Santa in his Christmas PJ's on the love seat while waiting beside the tree!


Reindeer Food
Since Brayden was tiny, we'd always make reindeer food on Christmas Eve to throw out on the lawn so the Reindeer could have a snack too while Santa was having cookies...or this year, candy sushi! I loved how this pic turned out since it was snowing when Brayden bundled up and went out to throw it out on our lawn!


Candy Sushi
I had heard about this neat idea and since Brayden LOVES sushi but hasn't been able to have it in a while, I thought it would be fun to make some! Well, Brayden decided after making it, this would be better to leave Santa the sushi instead of cookies this year. I told him it was completely up to him. I was in the floor hysterically laughing when he added that instead of hot chocolate, as he's always left him, he needed to leave him Miso soup since hot chocolate doesn't go with candy sushi!


Christmas Wrapping
Brayden's wrapping skills officially surpassed Dad's this year...which isn't saying much! Sorry, Dad! Brayden really got into helping to wrap this year and by the time it came for Dad to wrap Mom's presents, he realized just how much more Brayden had learned this year while helping Mom and promptly put him to work! Brayden ate it up that he got to show up his Dad on his skillz!!


Awaiting Christmas
This picture just makes my heart full. Our family finally back together again just in time for the week before Christmas. Brayden and I being away from home the 2 weeks in Little Rock for Radiation were the longest we'd been away since his initial diagnosis and time spent at ACH. It was just too long. So finally being back home and seeing my boys in their sweet robes sipping their Christmas eggnog was just too much to pass up.


Christmas Carolers


Brayden was SO happy to see them! Even though you can't see it, there were smiles abounding under his mask. Hopefully soon he'll be able to join them and hug them again and next year go with them on their Christmas carols to bring joy to others! Thank you to the ACA fam for bringing smiles and songs into our hearts for Christmas!

Cowboys Chemo Celebration

- COWBOYS CHEMO CELEBRATION - 12/23/09
I had mentioned how Brayden's local Oncology Nurses take such good care of him! Going forward in his treatment, we'll be there each week and only be in Little Rock once a month. I'm so thankful for such wonderful nurses. We've come to really trust them and rely on them. Sweet Deanna has gone above and beyond. She's reassured me, offered her expertise, shared her personal cell phone with me and checked in on Brayden when she knew how incredibly frightened I was to take him to the local hospital for his blood transfusion. She's confided in me how well she preps and cleans/sterlizes the room before Brayden comes in for blood work or treatments! I guess that was to reassure me I don't have to come in and clean a second time with all the days he's been Neutropenic! She even has learned to wipe down the light pull because she knows how ancy Brayden is and will TOUCH EVERYTHING! She's learned to laugh as Brayden counts for her to access his port and puts up with him wanting to sit up to be accessed instead of laying down. She's SO patient with all of his questions each and every time. We're SO thankful for her! As if that wasn't enough, she decided to do something special for Brayden. To celebrate his finishing all the High-Risk aggressive chemo regimen the last 8 months and finishing Radiation to where he can move onto Maintenance Chemo, she knew what she wanted to do. She went so above and beyond and contacted the Dallas Cowboys to get Brayden an autographed picture of Felix Jones. Her letter moved me to tears as I read how she felt about our Brayden and how she wanted to surprise him with this reward of all that he's endured while still maintaining his smile and sweet personality. She had gone above and beyond to organize this little celebration for him, made him a Cowboys blanket (now he didn't have to fight Dad for his!) and had these two autographed pictures framed for him!


I was so glad Brayden agreed to wear his Cowboys stocking hat just for me. The nurses all loved it and when we came around the corner, they were all cheering and clapping for him! He was so amazed and kept saying lots of "WOW!"s and "COOL!"s. They definitely made his day.
Sweet Katie and Brayden have a special relationship. He instantly loved her sarcasm that he can equally share. She's discovered his love of the Cowboys and he's discovered how to tease her about her beloved Chicago Bears. She knows how much he can't stand Hannah Montana so she's used that against him oh so many times! It's gotten to where I'm sure Brayden has a little crush on Miss Katie. We've finally gotten him to where he'll at least tell her bye again. But his teasing her is relentless and he had gotten so embarrassed to where he would run out the back door when he was done to avoid her teasing back! So precious. I love that even these visits can make him smile and laugh.
These ladies have hid quiet tears while treating Brayden. They've had to give the awful Asparaginase shots in his legs twice now. They've grown to love our sweet boy and I'm so thankful for them!!

Radiation Graduation Day

I had such good intentions of posting this before now. Looking back over these pictures brought back such a surge of emotions. I suddenly realized even our family has yet to see these. I hope it helps explain what Brayden has endured.

As part of Brayden's High-Risk treatment protocol (based on a study) he was to have 8 fragments of Radiation treatment. This was due to the time of diagnosis, his spinal fluid was showing with Level 2 of Leukemia cells present in his brain. We had been dreading this part of his treatment. The side effects are too numerous to mention. The main one being the likelihood of developing secondary cancers. It's so gut-wrenching as a parent and we're thankful for a wise Oncologist and his guidance to help lead us in the path of keeping Brayden the most safe and preserving his health. This wasn't optional for his treatment. In fact, this was the best chance he has of ensuring the Leukemia cells don't hide and come back later in his brain, as used to be the case 20+ years ago when the survival rate for ALL Leukemia was so much lower. Thank goodness for all the research. It's hard however to be thankful for Radiation. Nevertheless, we pressed on.

I've already posted several details in December about Radiation in general. We were so thankful Brayden didn't suffer a lot of the immediate sickness that could have been present. He did well. There certainly were side effects and those haven't dimished yet in the two weeks that have followed. Here are some more details and pictures for you from his treatments December 9-18:

This was the room as it looked when he walked in. They had a place for him where his mask was kept each day. The first time we saw that 6 inch thick door and this room it was a bit overwhelming. Brayden asked many questions. He thought the tv's were so cool! It had his information on them and he thought that was neat. He liked the beautiful picture on the ceiling and I reassured him about the camera on the wall in front of the table that showed him to me while I waited on the other side of the door. He chose to have music playing the last few days of treatment. He was sure to ask the Treatment Team lots of questions about all the machines and they were so patient to explain everything to him to help make him more comfortable.


Each day the nurses would have their masks on so that he could take his off when he came into the room since he was Neutropenic all during treatment. He was glad he didn't have to change into a gown. The table he had to lay on was SO uncomfortable. They had a neck piece sized for him that was ready for him each day we came in. They would also place a lumbar support under his knees and velcro his feet together. He insisted on keeping his shoes on. All of this was in an effort to minimize any movement. I gave him a tip to put his hands under his hips so he would have a place for them. In an effort to be perfectly still, his arms seemed to not know exactly where to go so that seemed to help.


These lasers had to line up with the exact places on his mask. The treatment teams did x-rays twice to confirm the Radiation was being concentrated on the exact right places in his brain.


This is a close-up of Brayden's mask he was eager to show. Once it was made the first day, it held the exact shape of his face, nose, chin. The team had to ensure the placement was exact and precise before it would snap into the table to confine him in place and not allow any movement.


Saying goodbye right before Radiation started once he was all in place. The team would slide his table into position. After we left, everything was controlled by the team on computers. I was amazed at everything they watch on 3 different screens. Then the big machine would rotate. You could hear the clicking sound the Radiation would make coming out of the machine. Then it would rotate again completely to the other side to treat the other side of his brain.


Each day he was complete with another treatment day down, his sweet team had this calendar made up for him and waiting with stickers. It was such a great visual to see how far he was coming and how soon he'd be done. SO THOUGHTFUL!


This sweet smile is what greeted me after his team came in and unsecured everything from the table. He was known to say "Get this thing off!" He was SO happy to finally be done and not have to come back again.


Placing his final sticker was such a tangible way of being finally done!


These sweet girls made his day! I remember the first day him telling me how cute the girlies were!! Sweet Jennifer & Tara were so vibrant and eager to visit with him and help make him more comfortable. He loved chatting it up with them.


His Treatment Team presented him with his Diploma on Friday, December 18th. Along with Jennifer & Tara again is Michael. I was so reassured with their expertise of Brayden and so thankful for the wonderful care they gave him. They seemed to go the extra mile and we are so thankful for them!

Hiding Out

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

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

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

Merry Christmas!

We've been so happy to be home. The time has flown and I've had SO much last-minute things to do since last Friday, an update has been lower on my priority list. I hadn't checked email or anything in a looooong time. But I wanted to wish everyone a very Merry Christmas and hope that love and peace fill your hearts and homes this season.

Brayden has had a BIG time since being home and prepping for Christmas. I've jotted down some notes to share later. Highlights have definitely included his friends from school swinging by on Christmas Eve afternoon to sing Christmas carols from the driveway. So sweet! The nurses at the local clinic went ABOVE and beyond to celebrate Brayden's move from the High-Risk aggressive chemo to his Maintenance regimen for 2 1/2 yrs. He had an awesome Cowboys' blanket made for him by his sweet nurse that takes such good care of him. He LOVES it! She also put together a HUGE surprise for him to get an autographed photo to him from Felix Jones! He's liked Felix since his days at AR playing for the Razorbacks! He was so overwhelmed. Waking up Christmas morning at home was SUCH a blessing for us all to be together. AND, we had a WHITE CHRISTMAS which for us is incredibly rare!! But such a neat way to wake up!

We were stunned to get his counts last Wednesday and after strict isolation for so long, he was no longer Neutropenic! His counts were at 799! He was so happy. The bummer is it looks like we'll be going to Little Rock tomorrow. Please pray for safe travels, his protection from chemo and its nasty effects. He'll be having a spinal sedation and intrathecal chemo as well as IV chemo, and will now begin a marathon of pills at home. We're praying he responds well and now that we're moving into this phase of chemo, the Leukemia cells to stay gone and Brayden to be forever healed. He's still recovering from Radiation with more pain and some side effects, but we're so thankful he didn't have the nausea like we had been warned was possible.

I'll try to post more in the coming days. Happy New Year!!

So good to be home

Friday was such a rush of activity. We had done a lot of packing and prep work Thursday night. We were crossing our fingers for good blood results and hopes that Brayden could do more. Friday morning he was so excited to be going to his last Radiation appt. We got there pretty early and got some pictures with the wonderful staff. They gave him his countdown calendar and he thought it was so cool he got to take his mask/helmet with him. He got a hat and a diploma to show his ‘graduation’ from Radiation. It was great getting to say goodbye to everyone and Merry Christmas wishes. We headed to Children’s. We needed to get another check of Brayden’s counts since his ANC was in the low 200’s the prior Monday. After his port access and blood draw was complete, we took a walk to the floor to check on some friends while waiting for the results to come back. It was a welcome relief to hear that they both had gotten to go home recently. After visiting with all the nurses, Brayden let out a cheer when he heard his ANC’s…although Mom wasn’t cheering. If Brayden’s counts had been high enough, he’d have to come back for chemo today in Little Rock and start the Maintenance phase of his treatments. He was just pumped to hear he wouldn’t have to come back this week! Me, on the other hand, not so much. Hearing he was Neutropenic and his counts had dropped to the low 100’s has me again on high alert. We’re hoping and praying his counts are high enough next week to see all of our family for the first time since early October. The yucky Ara-C is doing its job in the long-lasting effects we were warned about. This is week 5 since and he’s still Neutropenic. Nevertheless, at least his red blood cells and platelets didn’t require transfusions, so on the bright side, we were heading home!

We quickly loaded up the last of our things and headed out of town! Thankfully, we didn’t have to stop. I warned Brayden ahead of time with his counts that dangerously low, we needed to try to get straight home. We couldn’t have been happier to be back. Seeing Dad & Hershey a few hours later was so wonderful! Brayden had so much fun showing him all the Radiation stuff. This weekend has flown by with all the Christmas prep to complete and me getting out VERY late Friday to re-stock groceries and get ready for the 10 days to come. We had a few scares with Brayden having a sore throat, but so thankful nothing developed. I was physically ill with worry and I don’t know how I will ever learn to let go of that concern or if as a Mom, that’s even possible. I was so happy to see his bright shining eyes the next morning after he finally ate a better breakfast. Brayden and I were busy on Saturday wrapping presents. He did SUCH a good job on Dad’s presents! We were definitely enjoying the Christmas activities at home – baking, looking through Christmas cards, reading through school stuff and cards & gifts from his friends! Thank you!!!

We go back to check his counts Wednesday locally and I’m just praying they’re above Neutropenic level so we can breathe a small sigh of relief for now. Regardless, I think we’ve learned to still have fun and enjoy all the moments we have together. I’ll try to post some pics soon. Brayden definitely can’t hide what he’s going through anymore and I noticed how different he looks even after Radiation. We’re so thankful for how strong he was and how well he did in enduring those 8 treatments. Even though he’s Neutropenic and has been so tired, weak, & in some pain, we’re thankful he’s fighting and not having to spend this time in Little Rock or in the hospital from a fever with being Neutropenic. We’re so thankful we’re together at home and pray for him to regain his strength, for all the Leukemia cells to be killed in his brain after the Radiation and especially in his body after the long 8 months he’s endured of High-Risk aggressive chemotherapy. We pray that everyone remember the true reason for this special season and be filled with peace and love for one another. Merry Christmas!

Radiation Days 5 & 6...100's of Thank You's!

WOW! I just noticed this is my one-hundredth entry. Unreal, since 8 months ago I never could have imagined we would be sharing so many things with all of you here about Brayden's unexpected journey. I hope we've said thank you enough for sharing with us in this journey with prayers and encouragement.

We wanted to send a BIG thank you out to everyone who donated blood today! 64 units were able to be banked to help so many others who need it. I hear the Red Cross staff traveled EARLY from Springfield today and were so happy to be working on behalf of Brayden's drive. We're thankful for them being here and making that drive. Thank you to Paula of the Bentonville Plaza for use of the great location! Thank you to Korey from the Red Cross for organizing the event and allowing us a way in which to give back. Thanks to my mom, aka Brayden's Nini Annette for representing us today when we couldn't be there. We hope everyone liked seeing Brayden's beads on his buddy, Champ and a visual representation of all that he's been through so far. More than once today Brayden said he wished he could be there...we both do, to thank each of you in person. We hope each of you liked the Team Brayden bracelets as a small token of our appreciation for your time and special gift today. We also couldn't have made this happen without Nini Annette pulling together volunteers to give of your time off to come and help make this happen. Thank you to Hannah, Amber, Phil, Denise & Tiffany.

Thank you for the encouraging calls, emails, and pictures that have come our way from today's Blood Drive. It was the next best thing since we weren't able to be there in person. I didn't want to post certain pictures without permission, but Brayden and I have really enjoyed getting to look at them and hope you enjoy this one. Brayden was thinking how neat it was to see a couple giving platelets! It truly is amazing how differently we look at things like this now.

Yesterday was a rough day. I just couldn't muster up the courage to post. Brayden had wanted to go for a short walk after we got back from Radiation. I reluctantly agreed and hoped the fresh air would do him some good but the cold air wouldn't hurt him. The old Brayden couldn't just walk...he wanted to run. After running some sprints with me begging him to take it easy, I finally coaxed him into going back to our hotel room. Within minutes, he told me he didn't feel well. He crashed. He had just worn himself out and didn't want to eat. I blamed myself and hate not knowing what to do and how to balance letting him be a boy and yet trying to protect him. I was run-down myself and this time being here in isolation is beginning to be longer than what we thought. All of it was beginning to be too much and take its toll on both of us. Thankfully, after a long rest, Brayden finally ate a bit and was more like himself. That helped a little...until he wanted to watch a St. Judes special on tv. It was good for him to identify with other kids. But their stories hit too close to home. Again, I found myself in denial suddenly realizing the kids we were watching with the same diagnosis were just like Brayden. How did that become our life, and something I'd never wish for my sweet boy and want to protect him from? It was a very hard night. Today's fresh day and perspective was a blessing. So was how much better he did. He wasn't as tired and didn't get the yucky taste. His stickers are filling up on his calendar. Just 2 days left! He had more x-rays today to be sure everything is still on track. Thank goodness there were no issues. We were shocked to see how much weight he's lost in the week since he started Radiation. It's a good thing he had the steroids before the last month to have some extra to give!

When we came back to the hotel, he had a good lunch and was able to get some schoolwork done. Since he's been in rare form with some lovely comments. "You used to write in cursive when you were in school, mom? They had cursive back then? Was that before the Titanic? What about the Civil War?" I guess I'll be making him a timeline of my life and these important historical events during Christmas break to give him a better visual that his mom is NOT that old! He decided to - on the fly - plan his 10th birthday coming in March. He has said he wants to go back to the Sam Walton museum. Nice. I think we can make that happen...of all the things he would want to do! Tonight it's been fun hearing all the good stories and positive comments from today's Blood Drive. It's pepped us both up and it's been a great gift that each of you have given!!

Tomorrow we hope time starts to go by quicker as we pack and get ready to leave Friday. He'll have his final doses of Radiation tomorrow & Friday. We'll also get an update on his counts to determine if they're high enough to start the Maintenance phase of his chemo the following Monday. We're not sure to hope that his counts are low enough to have a break or high enough so he can continue. Of course we pray they aren't Neutropenic levels though. We're still praying for his protection from the ugly effects of Radiation and his immune system can keep fighting and not have any germs that he can't fight off that effect his system. Until we're home, just a few days to go and we can't wait to stop and breathe and focus on the beauty of the Christmas season without Dr.'s appts or chemo for a little bit!

Radiation Day 4

Brayden announced this morning he's halfway through Radiation! Thank goodness...it's been a bit of a rougher day. We started out early at ACH to get an update on Brayden's blood work and check his counts. We had been crossing our fingers they were high enough so he could get out and get a change of scenery. Remember he's been in isolation since October. Poor guy...He had a great time seeing his Nurse buddies again. We were SOOOOO happy to see his Oncologist's Head Nurse back! Whew, did we miss her! Brayden was pumped that he only had to get blood work and the port access didn't have to stay in there long. After being accessed quite a bit the last several weeks, he told me this weekend his port was feeling good after almost a week-long break. He had a check-up from another Oncologist and we talked about the impact of Radiation. After waiting a bit, we saw his results. The good news is his hemoglobin and platelets are high enough to not have to worry about transfusions right now. The negative is that he's certainly Neutropenic...not what we had hoped. But that's okay. We're all set up at the hotel and at least we were prepared with Dad being back home.

We headed over to Radiation for Day 4 and he again did great. Thankfully no sick taste this time. I guess the Zofran has helped. But it wasn't long before he was getting nauseated once we got back. Thankfully he had a good breakfast and lunch before he crashed. He took a looong nap. The thing that we saw the most last week is how tired the Radiation makes him. I was glad he was at least able to nap since last week he wouldn't or couldn't. He was peppier after he woke up and I was so thrilled. He had been hurting and not feeling well when he went to take the nap so seeing him more himself just did my heart good.

We're praying Brayden's body stays strong and free from infection. With him not having much infection fighting ability, it makes me extra nervous and makes fever so much more likely. He's done great so far and we pray it continues. We pray his counts recover, he stays strong and these last 4 days of Radiation go by quickly!