Are you ready for some football?

In our house, fall is in full swing! With a house full of football fans (yes, even Hershey had donned a Cowboy's bandanna, poor girl) we've been very busy! Last weekend with the big College football kickoff (which mom prefers) we had a great time cheering for the SEC teams. Our beloved Hogs played a great game, which we were unwilling to be TRUE fans and pay the $36.95 pay-per-view fee to see! Why bother when you can watch a game on tv and listen to the Hogs on the radio? Then tonight, I have become freshly reminded that the official NFL season has kicked off. Brayden is oblivious. To him, a devoted Cowboys fan, the season began in pre-season. No, training camp! He's been VERY excited and I'm thrilled each year that I grew up a sports fan or what in the world would I be doing now? Oh yeah...probably catching up on housework or scrapbooking or taking a bath. Who has the time?

We've had a full week. Brayden enjoyed a great Labor Day weekend with indoor swimming, eating outside, spending time with friends. One event he had been begging to do - return to the driving range. If you're familiar with his story, the last time he went to the driving range with dad was the day we ended up hearing the awful news something was wrong a few short hours later and began this crazy journey. I thought of this but didn't realize the impact it would have on dad to return. It was hard for him, and I've realized I need to remember he's a strong man, but not made of stone. He's admitted how difficult it is for him each day driving to work past the hospital where he saw his baby boy and wife lift off in a helicopter Life-Flight mission to Arkansas Children's Hospital 4 1/2 months ago. It reminds me how detached I am sometimes about the emotions of it all, while both trying to shield it from Brayden and dealing with it on a daily basis. Bryan is awesome and I'm so thankful for him. He enjoyed playing at the driving range with Brayden, no matter what it meant to him. We both realized a few hours later and into the next day we didn't stop to consider Brayden's endurance in all of this! Poor guy was so eager to hit golf balls, he had some pretty sore muscles the next day from all that hitting and swinging for the first time in a while! He still says it was worth it to get to play.

We all needed that extra rest day this week with Labor Day Monday. It definitely helped me get rested up, give Brayden just a fun play day and dad, well, dad worked and has a lovely garage all cleaned out and helped mom around the house!

This week we hit the grindstone again and Brayden has been doing so much better with schoolwork. We're nearly caught up and hopefully this momentum will continue for him. It's been a tough start, but he's been excited to get to call in to his school and read with his friends again. He's also realized he doesn't want to get behind. We'll keep working hard. My company has blessed us with a new computer for Brayden's classroom! Complete with a webcam for us and for them, we'll be able to try some different techniques with keeping Brayden involved and hopefully allowing mom to have a teaching break from some of the tougher subjects. We are excited to get it all set up and try it next week. WOW! How awesome is the company that I am privileged to work for? What a wonderful gift to help Brayden? And us?!?! Thank you so much to Jeff & everyone at Malt-O-Meal for making this happen. While you're out this week, give our bagged cereal a try and keep buying more! They are a fabulous, truly family-oriented company I'm so eager to support and boast about!

Tomorrow we'll learn Brayden's counts and if we return to Little Rock yet again next Monday for another 4-day round. Bryan and I have been asked to attend a local charity event Saturday night to raise money for CMN (Children's Miracle Network). We're honored to attend and nervous about speaking. We're praying our Journey will help others realize how prevalent childhood cancers really are and that their donations will continue to help fund a state of the art hospital in our area that is actively working to help children each day live better lives. It will be hard as I've teetered back and forth from rigid and professional and the way I would approach this in my career, vs. realizing I need to speak from the heart as a mom and really tell Brayden's story. We are truly so thankful for Arkansas Children's Hospital, to have been blessed with a wonderful Oncologist within the first few hours of arriving in ICU there, who has worked to keep Brayden his priority and fight the aggressive Leukemia that was taking over, and to be blessed with a staff that is so professional, yet reassuring and treating us like family each time we're there. We don't have to worry about traveling hundreds and thousands of miles from home and separating our family while we get treatment for Brayden. For that, we are so thankful.

We've had some scares this afternoon. For the first time in a while, Brayden's been in some pain. He actually asked to take a nap today. I couldn't remember if I ever mentioned this before, but he's yet to have 1 nap at home since being diagnosed! I find that a miracle. I thought he'd be in bed all the time and weak and frail and he's been so strong. But I know today and yesterday have been tougher days for him. I'm praying he remains strong. But he's asked me if the tumor will come back or why he's hurting. I'm praying it's nothing and he's just tired and sore from activity. Please keep him in your prayers that with each visit to LR, the Leukemia will slip farther and farther away and no bad cells will EVER return. Hearing Brayden ask those tough questions just breaks my heart and catches my breath as I search for ways to reassure him yet pray for reassurance for myself! That's the scary part in all of this. And hearing those questions from him make it so much more real as his mom.

To some fun things...while at ACH last week, I mentioned how Brayden got to build some things with the crew from Home Depot. He had a blast and I was thankful he was able to have a wonderful distraction from his 4-day stay and round of chemo. Here are his pictures!

We're home!!!

We had quite the waiting game yesterday. After hearing his counts through the night were just 4 hundredths of a point too high to be released, we had to wait until noon for the next check. Then, our sweet nurse kept checking every 20 min for lab results. Almost 3 hours later (gotta be a record for us for the longest lab results EVER) we were SO happy to learn his levels had dropped waaaay down so Brayden could finally go home. I should say that during this waiting game, while mom was working, Brayden was happily working as well...in the playroom with Nini. He was "Building something together" with the crew from Home Depot! He had safety goggles, an apron and a hammer and was having SUCH a good time building a race car mini track and a bean bag toss game. Nini needed some tylenol after all the hammering, but it was an AWESOME way to pass the time for him. He continued setting a record for the most ounces consumed in a 24-hour period. WOW! He had to be floating! But still wasn't eating. His nurse kept asking him repeatedly and we did all we could to coax him to eat. An hour before we left, I finally convinced him to eat some grapes and cheese cubes and he just picked at it.

Finally they were ready to de-access his port. His adorable Nurse let Brayden help push all the buttons. She was so patient with his inquisitive prodding on how everything works. Always an opportunity to learn, right? He was practically running out of the hospital. 4 days just felt like a longer stay this time. We were definitely thrilled to finally be on our way home. 20 minutes into the drive, Brayden was eating finally. After not eating for about 18 hours, he downed his cheese cubes and grapes as well as more water! YEAH! I felt better. He was so happy to see Hershey running out to greet him when we got home. After a home-cooked meal and eating it up, he told me he 'melted into bed.' He was SO glad to be back in his own surroundings.

He hasn't had any more nausea, thank goodness. We're still doing everything preventatively for mouth sores by swishing and swallowing a special mouthwash to protect his mouth and GI tract. I still hope and pray he doesn't have to endure that awful pain.

In the meantime, we're planning as much as we can to take advantage of the holiday weekend and his counts just being barely high enough to continue doing things. We've been warned by the middle of next week, they'll drop again. We won't know until Friday the 11th what they are and if we'll be back in Little Rock again on the 14th for Round 3 of High-Dose Methotrexate. I'll certainly keep everyone updated.

For now, we're working and trying to get schoolwork done so we can enjoy a carefree weekend. And, we are so glad to have all the family back together again! Thanks again to Nini for being there to help Brayden so mom could work, for bringing me 'sweet nectar' each morning (Starbucks Skinny Cinnamon Dolce Latte - it makes everything a little easier when you've had one!). I'll post pictures from his week soon but wanted everyone to know...we're home safe and sound and Brayden is feeling good. Thank you so much for all the prayers & support! We love you all!!!

September Already?

I had been in disbelief at how we arrived to the month of September. I feel like we missed summer completely. Was it even hot? And now this weekend says goodbye to summer. I'm hoping we'll be able to do something fun this weekend for Labor Day. We'll have to be creative and think of something.

After our roommate got to go home yesterday evening, we were surprised to not get another until noon today. I was thankful for a peaceful night's rest with only a couple of interruptions for "commercial breaks" for Brayden. We both slept so much better last night. Brayden unfortunately had an emesis episode this morning. He amazes me how he can give me plenty of warning. Not to dwell on the topic, but it's not one of those things that I know is coming that far in advance when it happens to me. Anyway, poor guy had his nurse laughing. He was apologetic but relieved at how much better he felt and that he'd rescued his pill. Since he really did perk up after and cleaned up again, he kept his meds and water down. I was hesitant, but he decided he wanted to go upstairs to the School. Thankfully, he did great! And they were able to get through a lot more work with him than Nini or I have been able to the last couple of days!

Nini's brilliance with pushing fluids continues! She had bought Brayden some of those Crystal Light green tea flavored water packets? It was about a month ago and Brayden LOVED it! He downed a ton of it and I told her right away we had to get more. Thankfully, I had some in my emergency bag in the car that we had to use. I'm glad it was there. Before noon today, he hadn't been drinking hardly anything. It's really important that he does so he's able to flush the toxins from the chemo out of his body much quicker. After trying and trying, I remembered the packets and 64 oz later in just 6 hours - we've gotta be flushing SOMETHING!! He loves the stuff! And if it helps him drink more water, then our work here is done. They just drew labs so we'll see if we get to go home tonight. It will be a late night but it will be worth it to wake up in our own beds tomorrow morning.

I had to share two quick stories: Brayden is certainly the little charmer with his Nurses. Surprised? A relief nurse came in a few hours ago in between shifts and told us she would be helping us for a bit. She said she was told his room was so much fun, she wouldn't want to leave! So sweet! Then when it was time for her to leave, she told us what a nice young man he was. We heard from someone else how they had observed how joyful Brayden was. WOW! I had just prayed about that a couple days ago! His joy is definitely sustained and I'm so glad the diagnosis hasn't taken that from him. Another thing to be thankful for...Brayden is an incredible young man and even though we're biased, we're seeing it through the eyes of others. I'm honored to be his mother and pray we can do all we can as a family and group of friends to support him and be there for him through all of this.

We miss Daddy. We know it's hard for him not being here with us. We miss him and feel bad he doesn't rest as well without us home with him. But it's a short time and he'll be plenty tired of us soon enough when we're back home. Thanks, Dad, for DVR'ing the Cowboy's game. Who cares that it's pre-season? It's the COWBOYS!! Thanks, Dad, for taking care of Hershey-Dog for us (have we ever told you her nickname is HD?).

In my lament of September arriving, I wanted to share something with you. We were so clueless before Childhood Cancer forever changed our lives. Our hearts will never be the same. I guess that isn't all bad that we are changed. After all, our eyes have been opened to all the many more types of childhood cancers and the daunting numbers of those diagnosed. I know we all hear about adult cancers. Another dad of a kiddo being treated here said recently he thinks maybe talking about this topic is too much for some people and instead of educating ourselves, we all run from it and don't want to talk about it. I'm amazed at how much is being done yet how much is still unknown. Another kiddo we've come to know was here today and it reminded me of his story. Just 4 short years ago, they didn't treat boys with A.L.L. the same way they treat them today. Unfortunately, this caused this young boy (now Brayden's age) to relapse with another type of cancer. So sad. After almost breathing a sigh of relief just pushing the 5-year Remission mark, it hits again...with a vengeance. It's just more than any child should have to endure. Seeing yet another little girl this week (with my mom here) nearly sent her into a tailspin. This sweet little girl we met 2 months ago. She was diagnosed just 5 days before Brayden. She has the more common type of ALL and isn't on the High-Risk protocol. Yet she looks so frail and fragile and her mom told me of their recent 4-week stay in the hospital, of feeding tubes since she couldn't maintain her weight, of difficulty walking and having to halt chemo treatments until her body was able to resume fighting the horrible Leukemia to prevent it from returning and taking over. It's too much. Please read how widespread Childhood Cancers really are...September is Childhood Cancer Awareness Month.

•Each school day, 46 children are diagnosed with cancer.
•One in 330 children will develop cancer by age 20.
•Each year in the U.S. over 12,600 children are diagnosed with cancer.
•Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
•Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
•80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
•There are currently more than 270,000 childhood cancer survivors in the U.S.
•Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.
CureSearch

Little Rock - Day 2

I can see the last few drops of Methotrexate going into his line...so we're a few minutes away from the 24 hr waiting period to begin. Bray hasn't wanted to eat today. Again, an effect of the chemo. Thankfully even with nausea, he hasn't thrown up. Ahem, I mean, emesis. Ms. C knows that was for her! Brayden and I have worked to use the 'clinical' term for vomit for a while now. It makes me laugh to hear him say it. Although, when he has to say it, it's not a funny moment, somehow the word makes it a little easier. He's enjoyed grapes for breakfast & lunch and (ugh!) a bag of fritos and half a PB&J for lunch. We always talk about eating what's most important first (in case he gets queasy) but in this instance, I guess we're thankful he can eat what little he's able.

Nini has been BRILLIANT today with thinking up a creative way to get Brayden to get more water down - ICE CUBES!! The ice and water machine on the unit floor has that yummy sonic crushed ice? All of us love it and will crunch on it. I never thought of giving it to him as a treat. Nini has been making trips back and forth with spoons. I'm hoping this helps him get more water in-take so he can flush those toxens out faster and minimize the impact.

Brayden also enjoyed showing Nini the ropes in the playroom today. They played Wii together. Ok, more like Brayden enjoyed taking advantage of Nini not knowing how to play Wii. At least, that's what I hear. Beyond that, we're still trying to get through schoolwork. It takes a lot longer than it used to. It's very tough to stay caught up. Overall, Brayden's not quite himself today, but still so much better than he could be doing. It's definitely been tough with a roommate: the noises, the food smells that sometimes generate the nausea, the distractions during schoolwork and many more. Our roommate just went home but they're cleaning the room and we may have another roommate coming in. I hope it will be an easy couple more days for him regardless of the roommate status.

I better run. Brayden's found some games online he can play from his room that are keeping him entertained. Another day done with work so we're going to try to do an in-room movie night complete with popcorn (a treat from home!).

Little Rock - Day 1

Is it really Monday? My days are all a jumble. Packing to come back to Little Rock was nice and fun...in that you try to keep it simple, yet prepare for what is needed. And, this time we have schoolwork to pack and mom is working! Nini Annette came with us this time - thank goodness! She is being a big help already!

Brayden was silly as ever getting here and seeing all the familiar faces. I couldn't stop laughing at his story-telling to his Dr. and Nurse! He definitely told ALL about the Branson craziness and, lesson-learned, don't miss out on being at the Dr. visits! Brayden took the opportunity to tell all of dad's stuff on him since he wasn't here! Too funny...

Brayden's counts have dropped a bit. I'm guessing we may have a week off when we are to return in two weeks from today. Maybe not...but they're getting back down to the level where it causes me to not feel as comfortable doing more things. He got to go fishing with dad yesterday and LOVED catching his "Twig Fish". I loved hearing him explain how he thought he had a 'big bass on the line' and it was just a twig from the bottom of the lake!!

For now, we've had some waiting games to play. They have to pre-hydrate Brayden for 6 hrs before he's given the High-Dose Methotrexate, which should happen in about an hour. From there, he'll receive the chemo over 12 hrs, then have another bag for another 12 hrs. We'll wait and see what happens. After checking his levels, we'll know later Wednesday what the return-home plan should be. I'm guessing it will be Thursday afternoon again :-(

For now, we'll get back to trying to push through schoolwork with Nini's help. I was a little bummed we were in a shared room. It's definitely hard enough to see your own sweetie going through the hard times. But being here is always an eye opener of so many kids that are going through hard times with childhood cancer. It's also a reminder of how unbelievably well Brayden is doing. I never want to take that thankfulness for granted. The prayers are definitely not taken for granted. Thanks to everyone for all your continued support through this marathon of chemo treatments for Brayden. It's a long road, but he's off to a good, strong start!

Praying again for no mouth sores, peaceful rest, our neighboring patient to have successful surgery and treatments, and joy overflowing for Sweet Brayden! I'm so thankful this diagnosis hasn't robbed him of that!!

Raising the white flag of surrender

So many giggles last night, my stomach still hurts! We had fun visiting with Nini & Papaw and getting out of the house for a bit after learning Brayden's counts didn't fall too much after a week of treatment. We were all a little wound up last night but there's nothing as great as laughing so hard until it hurts! Brayden really does know how to get us going too. I remember being able to do that with my mom and grandma...he's got the gift! It felt so good just to laugh and be a little carefree.

This has honestly been one of the hardest weeks for me personally since we came home in May. I thought after a weekend getaway and not having a PICC line to flush daily or change bandages weekly and no longer being neutropenic and being afraid of every little germ would make things easier. My mom made a good point. I guess I'm now feeling the stress of those insane 5 weeks when we were in strict isolation and things were so stressful and hard. But in the moment, you push on and I probably didn't deal with it all. It's officially caught up with me. Everything this week has seemed so overwhelming. Thankfully, I raised the white flag of surrender and had a wonderful surprise waiting outside my front door when I woke up: my mom. She was awesome. She jumped in and did all she could to help. It's incredibly hard for me to admit I can't do it all. Between a full-time job, caring for Brayden, now his school year that's kicked off, and still keeping a house in tip-top shape to protect Brayden's immune system, it's just too much. I know I have to get better at asking for help. I'm so thankful for her being here when I needed her. Thanks, Momma! I know also I need to be better at surrendering to the One Who can help carry these burdens for me. It's still not easy. I don't know why...well, I guess I do. We're just human. So I'm praying I can begin to be more familiar with surrendering. It's certainly not going to be easy.

Haircut #3 happened Thursday night, thanks to Nini's help! Can you believe it? Yeah, us either. In 4 months since his diagnosis and start of treatment, we never imagined we'd still be having to cut his hair! True, it doesn't grow as fast, but isn't it bizarre that it grows at all when it should be gone? His Dr. told us (forgive me if I'm repeating) that he's never given a kiddo this much high-dose chemo and had him still have hair! We've stopped asking why; we're just thankful. I was bummed he wanted to part with the faux-hawk. But I'm proud he made his own decision despite all the peer pressure from his nurses and everyone on how cool it looks. He went with his own look, his own decision. And knowing he didn't keep it the old way just to make everyone happy was pretty impressive to me! Certainly something that took me A LOT longer to realize. He's a strong boy and his hair still looks cute.

After going to the local clinic to get his counts yesterday, we celebrated by going to HH (Sonic Happy Hour!). We were glad his counts were still high enough to be able to do a few things. PLUS - the biggee for yesterday was this was the first time Brayden had his port accessed at the local clinic. He was a little nervous when I put on the numbing cream an hour before his appointment. The nurses there are so great and were so patient and answered every question he asked brilliantly by showing him all the tools and taking it one step at a time. He did awesome. I'm hoping now going forward, it's a piece of cake for him.

We leave out VERY early again on Monday morning for Little Rock. Brayden will be admitted and begin his 2nd round of High-Dose Methotrexate. Thankfully he doesn't have to have a spinal (LP) this time, so he'll get to eat and drink on the trip down and I'm hoping he'll get a head-start on being ready to flush everything out of his system. We don't know how long, but again could be there 3-5 days. I'll do my best to post updates for everyone on how he's doing.

Brayden has been SO EXCITED to join in with his 4th grade class a couple times this week by calling in and reading! Popcorn reading is when you read and pick someone else and so on. His teacher was joking it was Brayden popcorn reading! Brayden would read, pick someone, then they'd pick him again! He definitely misses all his classmates. I had a wonderful meeting with his 3rd grade teacher (who was instrumental in helping us get Brayden through 3rd grade after his diagnosis) and his new 4th grade teacher. Such wonderful, Godly women! I'm just sad he's missed time learning from them, but am eager for January when he should be able to return to school. In the meantime, he's been very busy in keeping up his work at home. Some things aren't as easy for him and we're seeing some things pop up we were warned about with the spinal treatments he's been given. He's still persevering, but it's certainly a change for him he notices. It does bother him sometimes.

This week we're praying for safe travels to LR, an uneventful week with his treatments that flush quickly and no mouth sores! We're praying for Brayden's heart and spirit continue to be protected from the harm of leukemia and a cancer diagnosis. We're praying schoolwork becomes easier for him and his frustrations will be minimal as he works through new challenges. We're thankful he only had a few sores on his lip from the last treatment and that his counts have remained strong! We're thankful for a beautiful weekend we can't wait to enjoy!

Getaway

Sorry to leave everyone hanging! Children's lost power Wednesday around 10 and we didn't get our tv or computer back until the next morning. I wasn't sure what to say at that point and my hands were very full. Wednesday night Brayden's first blood draw showed his levels were good - medium. They wanted to ensure the chemo didn't leave his system too quickly, otherwise, not enough time to take effect and do it's proper job in interfering with the cancer cells' growth cycle. We were happy about the first draw. However, through the night they gave Brayden a recovery drug and had to page his Dr. to see how to proceed. Instead of his levels dropping at the next draw, they actually increased. Bizarre and something I actually asked about before that happens, but isn't frequently seen. It was at that point I began to grow skeptical about our getting to go home Thursday. We were up every 2 hrs testing output (or as Brayden calls them, his 'commercial breaks' if you remember from before!) and I was finally getting him to drink more. He was getting 6oz down with each bathroom break. So I was hopeful he'd get it all flushed out of his system. Thanks to the recovery drug and Brayden's drinking more water through the night, finally close to noon we learned his levels were low enough to go home. Here's the catch: Brayden woke up Thursday morning very sick. He couldn't keep his morning meds down the first time and a couple hours later had a repeat episode of just water coming back up. My heart wrenched. I was really worried. But thanks to the second anti-nausea drug, he started feeling better. The bad side? I completely forgot how it messes with his emotions and makes him so off-balance and loopy. He wouldn't sleep at all and was just ready to go home. We were so thankful that he finally kept down about 10oz of water and finally some chocolate ice-cream and got to leave at 3:00. The staff was SO supportive. Everyone knew of his pending trip and he had enough about 1 and was just ready to go. It was the first sign I had from him all week of how exhausted and stressed he was and he had enough. He had been looking forward to this getaway and didn't think he could take another night in the hospital. I didn't know what else to do. I just crawled in his hospital bed next to him and held him and hugged him and reassured him we'd still go, even if it was a day late or 2 days late. We'd go again, no matter what it took. So finally getting the green light to go at my discretion (yikes! no pressure there!) was such a relief to both of us, but left me trying not to push it and get him out TOO fast. That's why I was glad when he started keeping things down so we headed out.

We called dad with the good news and headed home! We couldn't get there fast enough and I was SO relieved he did great on the trip home and actually ate finally with no nausea! We got home, filled oral chemo meds and other prescriptions, unloaded, re-packed and re-loaded, and headed for our Branson getaway! The weekend was AWESOME! We had such beautiful weather; low 80's, totally sunny, no rain. His Dr. had prepped us with how to make the most of the weekend (spf 100, minimal sun, swim early or late, eat outside, etc) and we had our plan! We had lots of funny moments: almost catching the microwave on fire, the automatic coffee pot LIED and said it shut off in 2 hrs and SO DIDN'T, the ceiling light cover falling off on Brayden's head WHILE he was in the shower, dad not knowing how to work the thermostat and waking up to 53 degree temps in our condo, and finally a skunk deterring us from our evening mini golf game! We still made the most of it and had a great time. Brayden got to float the lazy river and for Brayden, this meant running the river as fast as he could! He jumps in with both feet to all he does and that especially meant this weekend with FINALLY getting to enjoy the summer and SWIM! We had so many smiles and hugs and thank-you's this weekend for his appreciation for the getaway. We had a ton of fun with our friends joining us for a bit on Saturday and Brayden bursting with laughter at every little thing Uncle Danny had to say!




We were both excited and sad to leave today to come home. Brayden (after enjoying breakfast on the balcony) said, "This is the most fun I've had in my whole life!" You've gotta love the 9-yr-old short-term memory. But we also realize how differently he views life and certainly appreciates things more. He got to do the Titanic tour today and had been asking to do this for quite a while. While standing in line, a nice gentleman was asking Brayden about school. I let him continue the conversation, internally struggling with whether to interject, change the subject, and protect my sweet boy from the normal question that for Brayden can be intrusive as it sheds light on all that has changed for him. He responded with such maturity and never skipping a beat. I was thankful he was able to answer the questions the gentleman asked without having to reveal all that he is really enduring and able to feel a bit normal for a few days this weekend. I tried to keep my paranoia at bay with all that he was subjected to. We still took many precautions, but I wanted him to have those normal getaway experiences. I still wondered when people looked at him or saw him if they knew. I was thankful he still had his hair and wasn't having to worry about those stares or questions that come with it. For now, he was normal again.

Little Rock Update - Day 2

Today was the first day of school. We hope Brayden's friends and classmates and his new teacher this year for 4th grade had a GREAT first day. We talked about it and even though he's missing it, he said he can't wait to call in and talk to everyone and be back in school. The on-site teacher here at ACH was SO complimentary of Brayden's school and the success we've had thus far and our plans for him. Apparently many kids fall through the cracks and don't have as much support as we've been blessed to have. So a big THANK YOU to everyone at ACA! I've said again and again how thankful we've been to be a part of this school since Kindergarten.

Wow...what a stark contrast to yesterday we've experienced today. Brayden slept in until 10 and did NOT want to eat today. They've had him on continuous anti-nausea meds since last night. Oh yeah, last night. We didn't get to sleep until 11. I was so upset he didn't start his chemo until 11. I felt like we lost so much time that he could have been processing it and hopefully get to go early. He's had a few spurts of energy today which we've made the most of with visiting the garden, strolling halls and watching the rain roll in. His highlight of today was getting to go to the playroom and while playing Wii, 3 of the Arkansas Naturals baseball players walked in! One of them strolled over and introduced himself to Brayden and he was pumped to challenge this ball player to Wii baseball! The player was Colby (#11) and said he played Outfield. We figured we'd google him later and learn more since we follow the Hogs and the Rangers, but that's it. What a cool guy! Brayden confided to me later how nervous he was. They played a round of Home Run Derby and then bowling. The last set, no one had gotten a strike yet, and Brayden nailed one. What a great ending! Brayden gave him some fist bumps then a hug and couldn't stop saying thank you. On the way back to his room, he kept saying how cool that was and how much fun he'd had.

I'm a worried momma tonight, trying to encourage him to drink as much as he can. We ordered his dinner but after 2 bites, it's still sitting. He just doesn't feel up to it. This last bag of chemo will be done tonight at 11 and we'll know late tomorrow night approximately when he might get to go home. We're hoping for early Thursday but it totally is dependent upon his blood results and if the toxicity has left his system enough to be discharged.

It was great to see his Dr. and awesome Nurse today. Brayden was so proud to keep showing off his Picc line, that was FINALLY out of his arm! Beyond that, he was just eager to talk about hopefully getting away this weekend to swim. We're crossing our fingers it works out and he can enjoy a break. We're just praying that the nausea gets better tomorrow, he can keep drinking plenty, and NO MOUTH SORES!! He's resting a little now so I hope that will help and tomorrow can be a better day today.

The 3-Year Countdown Begins!

One exciting thing about today...this officially marks the day when Brayden's 3-years of treatment clock starts! He's been wanting to get to this day for a while. We're certainly viewing it as a celebration. On the one hand, it's a tangible reality that this won't go on forever and the unknown timeline isn't looming ahead. On the other hand, 3 years didn't seem like a lot at first; that is until I started looking BACK 3 years and realized all that has happened in that span of time. Ouch. Reality sets in...We didn't have our house 3 years ago...and that seems like a lifetime all on it's own. We didn't have our dog Hershey. What was life like before her and her kisses and lap hugs and personality to make us laugh? And Brayden...wow. He was just starting 1st grade. That's where it really hurts. My little boy has grown so much in 3 years! He's moved from a shy adorable boy to the funny boy who loves to be sarcastic and loud and get a laugh from his friends! He's gained confidence and is so much more self-reliant! That's when you realize the impact of 3 years, and that's when I start to wonder how the next 3 years will change him, will change all of us. I hope and pray it's for the better. I hope and pray it allows Brayden to further become the young man he was meant to be. I hope and pray it doesn't jade his beautiful view of life and people or cause him to be cynical or negative. He's so positive and maybe it's because he doesn't have the same view of 3 years the way we do with much more activity in the rear view mirror of life to see. I pray it's because his heart and mind is prepared for this journey and he's able to approach it in the manner he has began by tackling it as another step and going full-force with getting through it because he's accepted it's part of who he is now. I pray Bryan and I can get to that point. I pray our friends and family can as well. That's a tough one. Nevertheless, we continue to celebrate the light that is now a dim speck at the end of the tunnel and will anxiously journey to watch it grow brighter with each passing day and pray we can journey to it becoming better, closer, stronger than we were before, remembering to give praise to the One Who never left us through it all.

Little Rock Update - Day 1

Mr. Brayden has been in rare form today! This was such a stark contrast from how we both felt 3 weeks ago before when we tried this round of treatment. It really made me realize how sick he was at the time. I started the day off at 4am (yikes!) and Brayden wasn't far behind at 4:45. Even from the time I woke him up, he was ready to get the show on the road - literally! We had lots of laughs on the long drive south to Arkansas Children's Hospital. When we arrived in clinic, he was happy to see the nurses with whom he makes a regular habit of giving a hard time. The sarcasm ensued quickly! He did SO great with the port access - 3rd time was a charm! I was quietly happy to see I wasn't the only one who gained some poundage over the past 3 weeks in strict isolation with comfort food!! Our jaws dropped open when we learned his counts are at 2761! WHOA! Another new record!!

Brayden did great during the sedation procedure with his spinal (LP) where chemo is injected into his spinal fluid to help fight off those leukemia cells. During sedation, he finally was able to say goodbye to his PICC-line. He was quick to show me when I returned that they let him keep it, just as he requested weeks ago. Don't worry; I'm sure you'll get to see it soon. He's very proud of it and it was certainly interesting to see it outside of his arm. It's amazing to think he's had it just a few days shy of 4 months! WOW! Even more impressive is that it's continued to function properly and help exepdite Brayden's meds all without infection. We said goodbye today to the daily shower ritual of wrapping his arm in press-n-seal before every shower, to the daily flushes and prep we had to do in order to ensure it continued to work properly, to the nasty tape (Brayden's nemesis) and to the weekly dressing changes that in the last few weeks at home in isolation became mom's nemesis! He couldn't stop telling me how free he felt! His poor arm will hopefully return to normal after all the trauma it has endured with all the tape and alcohol.

Today I definitely missed Bryan being here. Not even 3 hours in to his admission to his room on the unit floor, and I've gone through my entire bag of tricks. Games, books, cards, coloring books, joke books, Star Wars guys, a cool new Read & Find from his buddy Andrew, DS games, and the list goes on! We've taken 2 walks already, started 2 movies, played on the internet... Oh, dear. How are we going to stay creative & busy the next few days?!?! What a difference it makes when his counts are higher!!

Brayden has been hydrated all day to try and aide the chemo in processing quickly and minimize the toxicity on his body. We've been warned this med causes bad mouth sores that also can occur all throughout his GI tract - ouch. They're very painful and if they occur, will require some hefty pain meds. While we're admitted and his body processes the chemo, they will keep him on iv fluids, the wonderous anti-nausea iv drug, as well as iv preventative meds to try to reduce the likelihood of mouth sores or at least their impact. We've been told this round will cause his counts to drop, but not as severe as the others he has had. And hopefully since they are higher to start with, we've got some breathing room before we are in the danger zone again. Our prayer focus definitely centers around mouth sores, as not only is it painful to endure, but it also causes him not to want to eat or drink, which can be dangerous.

We'll see how tonight goes. I'll keep trying to be creative and smiling in disbelief at the wonder that is Brayden and all that he continues to endure with astonishing resiliency. If things continue to go well, I'll do more frequent updates this week since it will be easier to post. There's still so much to talk about, especially our weekend of escape!!

An answer to prayer!

We are FLOATING today! After another VERY tough week in isolation, we had been hoping and praying before Brayden's next round of treatment, his counts would go as high as they could. Well, we were absolutely STUNNED today to see his counts the highest they've been since his treatments began on April 23rd! Last week they were only 240 and they were 2000 today! WHAT!?!?!? Brayden was instantly whooping and hollering all around the house, "Yeah, baby! WOOHOO!! YEAH!" It was a riot! The nurse could totally hear his reaction over the phone and while I was in an other room! Within 20 minutes we were packed and prepared to get out of the house for the first time in a VERY long time!

We just got home FINALLY a bit ago and I'm exhausted from our adventures and so is Brayden. We were really trying not to over-do it. Today was really his first taste of summer in such a long time. It was awesome. We were all so thankful for that gift. We needed a reprieve. Brayden did, especially. So even though I'm dragging and really ready for bed, we wanted to share the awesome news with everyone and say it's safe to say, we will NOT be home this weekend!!!

Here's a few of today's highlights, then I promise I'll detail more later.
We went to Sonic (HH FINALLY! His Favorite!), Brayden's school to see all the wonderful teachers and meet his new 4th grade teacher, my sister's office so he could get the first hug in a long time, the sno-cone stand with his cousins and Nini, out to dinner (on the Slim Chicken's patio with cousins & Nini & Papaw), Target (with a mask) to run through and look at school supplies and pick up a few Star Wars guys, then the Bark Park to play with Hershey and his cousins! I'm exhausted!! He is too...but SO excited to be out. I'm glad there was no one at Target. I figured it was safer than WM cause I heard it was pretty empty and we barely saw anyone, in and out pretty quick. I was still very nervous and anxious about finally being out, but it was SO NICE! For a few minutes, we got to forget about everything and have a taste of normalcy. Nevermind the full-body alochol bath we all got when we came home. Just kidding...just some good hot water and soap!

We leave out VERY early for Little Rock Monday morning where he'll be admitted again at Arkansas Children's Hospital. I'll have more time to post updates then from his room when he's resting. We're praying for safe travels, for Brayden's body to remain strong, for the High-Dose Methotrexate to QUICKLY leave his body so his toxicity levels will come down low enough for him to get to come back home. We're praying his sedation for his spinal (LP) and removing his PICC-line (YEAH!!!) go well too. He was saying today he's going to miss it (the PICC-line). It's crazy how you grow attached to it and he's had it now for almost 4 months to the day. It's served him very well and we're SO thankful it stayed infection-free! What a blessing! So more to come, but praying Brayden doesn't get mouth sores, as they're prevalent with this regimen.

Thanks again to everyone for all the love, support and encouragement. It really does help keep us going. Can't wait to tell you more about our big weekend of freedom!! And for now, remembering to be SO thankful for the smallest gifts of a beautiful day outside without a mask!

Second verse...same as the first

After another week in isolation and poor Brayden going stir-crazy, we went Friday to re-check his blood and see if his count levels were high enough to continue treatment. We were hoping they were above 1000 (for his ANC level) so that we could get to the movies one more time. He's been wanting to see G-Force. (PS - he can't be outside much and needs to wear a mask when he does, so the Drive-In isn't an option right now, but one we keep checking on all summer long). Anyway, we found out his counts have dropped again to 240. Remember below 500 is Neutropenic. So we took another deep breath, put the mask back on, and headed home.

I try to be upbeat and positive on here. I don't want these updates to be a downer, but I also don't want to lead everyone into thinking we are super-positive and not feeling the negative effects of this diagnosis. We all are, including Brayden. I probably hide mine more but I don't want you to think it isn't tough for us. In fact, that's an under-statement. I try to be positive for Brayden, but also I want him to see me express emotion so he feels comfortable in doing so as well. That's a delicate balance because I'm almost afraid of what it would look like for me to REALLY express everything I'm feeling. He's gotten upset many times and week before last was probably the hardest for me as a mom in seeing him express these ranges of anger and sadness that I'd never seen in him before. It's not fair is definitely a normal emotion and one that he finally said. I was glad because he's taken this all in stride and has been so strong. But I want him to know he doesn't have to be superman through all of it. As a mom though, in those moments, is when I'm breathing prayers for God to help me to get through it while holding him and trying to reassure him without saying the wrong words. Those are the times when I literally feel my heart ripping. It's those moments when I want to protect my sweet boy from all the bad stuff and carry it myself for him. Isn't that what we're supposed to do? At least until they're older, wiser, stronger, and have more life experience behind them to face it? It's in those moments I reflect back at where the time has gone and pray we've prepared him enough to endure this 3-year marathon of treatment and impact on his body, mind, and spirit.

There are many days I feel like I can't get through it all and don't know how I will. I press on because I know Brayden is and I have to keep cleaning, preparing everything the best I can for him in this little bubble we're in for him in nurturing him until his body is strong enough to rebound those counts...only to go face the next treatment to blast them down again. It's an ugly cycle. I try not to get lost in the long-term or I don't think we could face it. It's literally still day by day and many times hour by hour. Or in those moments when he feels bad, isn't hungry and I keep watching him closely and checking for fever, it's minute by minute.

I again made sure with his awesome nurse that this is okay to be back where we're at. She's reassured me this is still okay. The good news is his platelets have shot back up and stayed up the last two weeks. His red blood cell levels are good and not in the range of needing another transfusion. There is an indicator in his blood work that last week wasn't high which told us his counts weren't on the way back up. I'm guessing they were pretty low throughout this past week and dropped and what we saw this Friday was them finally rebounding. That indicator on this week's tests was higher and shows that his counts are finally on the way back up. But it's a waiting game until then. Brayden is so eager to keep on and get it all over with, each week's delay is pretty frustrating for him, especially since he's restricted to the house.

I'm doing all I can to keep things fun at home and have special treats. Since he hasn't been able to have his favorite Sonic Happy Hour for many weeks, I'm making homemade cherry limeades for him some days. Bryan and I are wishing we can invent something to check his ANC levels daily. You know, like patients with diabetes are able to check their levels? I can see how blood work can be obsessive in determining your lives...what you do that day, where you can go, and what's safe to do. They can drop so quickly, as we learned 2 weeks ago when we thought we were starting treatment, so I feel the need when they're high going forward to do all we can THAT DAY because we won't know how long they'll stay high.

We've remained focused on being thankful. Brayden's nurse was reassuring me this was a long-term effect of the nasty, ugly chemo med we've referred to before, and that it stays in his system for a while. Her gentle reminder that she's surprised he hasn't been hospitalized for fever or neutropenia through all of this reminded me what a real danger that is and to again not focus on the time his counts have been low and he's been in isolation, but be thankful he's made it this far without those other impacts to his body.

Brayden heard me typing and asked if I could tell everyone that he says "thank you for all of you who are following my bloggie." Thank you again for everyone who is praying for him. We still never take that for granted and are so thankful. We're praying now that his counts are on the rise, they can get safely high enough to have some room before we start the next round of treatment. We're praying his picc line stays free from infection, since mom is doing dressing changes from home. And to think I used to be nervous about flushing it! We're praying God continues to protect his little sweet spirit from harm of the effects of this ugly diagnosis. We're praying his body stays strong and free from infection and the chemo continues to to work well with minimal impacts to him.

For now, I'm loving hearing his giggles in the other room while he's watching Tom & Jerry and enjoying being a kid. I'll close and run to spend time with him and enjoy the day...

Isolation Continues...

Yesterday we went again to check Brayden's blood counts (CBC's). I was really surprised to hear he's still neutropenic and will remain in isolation. We have to protect him from outside germs as much as possible since his little system isn't strong enough right now to fight off anything foreign much less endure high-dose chemo. This means we get another week-long break from chemo and traveling to Little Rock. After 2 weeks of pumping Brayden up about getting his PICC line in his arm taken out, looks like it will be hanging around a little longer.

I've said recently it's tough because on the one hand, I appreciate the breaks and hope it gives his body time to get stronger. On the other, the risk for infection and fever is SO high when he's neutropenic, so you can't relax and enjoy the break. We'll keep operating in strict isolation mode at home while nervously holding our breath, checking for fever way too often, and hoping we're keeping him protected from germs.

Getting out yesterday even for a few minutes to get blood labs was good for Brayden. He's used to wearing his mask now and he had waaaaay too much fun chatting it up with the nurses. They laughed and commented he's the only patient that can drag 4 nurses away at a time to come and visit. He was certainly the star of the show while I sat back staring in disbelief at the new counts and results of his blood draw. Nini Annette commented he was probably THRILLED to have someone else to visit with in person besides crazy mom! He agreed to this waaaaay too quickly for my liking :-)

We're praying Brayden keeps up the course he's been on with staying healthy and free from infection with no fever. We're praying he stays in good spirits and that resiliency stays strong. We're praying his counts do recover and can get as high as they can as fast as they can before the next round of chemo. That way maybe they won't have as far to drop next time.

In the meantime my sweet friend Linda gave me an AWESOME idea of letting him shop for his own school supplies on walmart.com! Brilliant! He's still been busy in his fort but with a little less energy this week. We had fun making rice krispie treats one evening. Of course each day has some Star Wars action involved. We're just doing what we can from here since he can't go outside when his counts are this low.

My mom's helping me to organize a blood drive in Brayden's name. Be watching for more details on that since so many have asked for ways of how they can help. This is such a self-less act that helps SO many in need. You don't realize how much it helps until your child is being transfused and you see that donor bag of blood hanging from their iv pole. Or when they say he's dangerously low on platelets and they'll SEE if they have his type. SEE if?!?! You take for granted it's always there. It's certainly made us realize how grateful we are to all those who donate blood. Thank you!!!!

Change of Plans

Just wanted to let everyone know...we got to Little Rock yesterday and Brayden's blood results came back that his ANC counts have dropped and he's Neutropenic again. He wasn't healthy enough to be admitted and begin the next round of chemo. So we got to drive back home. It was a very long day and Brayden was bummed a little. After dealing with all the anxiety of getting the Port accessed again, the numbing cream worked great and he did awesome. Thank goodness, because that will be a regular occurrence for a VERY long time for him. Also, the PICC line is still in so mom got to sweat it out again in doing another of the weekly dressing change, but it worked great.

Say a prayer his counts recover at least above the neutropenic line. This is when I get the most nervous. Last Thursday he was pushing 1000 (which is so much safer) and he was only at 220 yesterday. So he's most definitely in isolation. His Dr. said this is very common and would have been surprised if Brayden DID start treatment yesterday, since no one starts this round on time while recovering their counts from the effect of the aggressive chemo med (the ugly one, we call it) Ara-C. He also made us laugh when he said he's never given a kiddo that much Ara-C and had them still have hair. He was amazed and glad to see Brayden and Brayden did a good job of being his goofy self when he came in the room, pretending to be a Dr.

We'll check his counts again locally on Friday and from that point know whether or not we'll travel back to Little Rock Monday. At that point, they'll check counts again before they start, just to be sure, then he'll go through the sedation for a spinal and removing his PICC line, then admitted and administered the High-Dose Methotrexate and observed. We've been told he'll be in for at least 3 days when that happens.

Thanks for the prayers. We'll let everyone know what we find out. In the interim, we're again making lists of things Brayden wants to do when his counts recover. Yes, he can't wait to see the new G-Force movie. He's been giggling at those previews for a while. He laughed at Ice-Age, but it made me realize my baby is growing up and if it hadn't been for his friends there, I'm not sure if he would have enjoyed it as much. Take care...

Please pray for Stellan

This is one of about 5 blogs I follow and this sweet Mom is in so much fear right now. I've been reading her story for over a year and her son, Stellan, is a miracle to even be here. Their story isn't a short one, but please pray. He's been taken to Children's and now today they are unable to get his heart rhythms back under control. Please pray he'll come out of this danger zone and be responsive to the drugs and his body can begin to come back into normal hear rhythms and not be in distress. Pray for this mom and precious family...

Outings

***I wanted to say thank-you for the comments! I'm sure it's tough sometimes knowing what to say on here for Brayden, but he looks for comments every day and was so excited to see some new ones this week! Thank you so much!!

We've enjoyed, for the first time in quite a while, the opportunity to get Brayden out of the house! Dad loaded up both kiddos (Hershey & Brayden) Thursday morning to go to the walking trail and new Bark park! Brayden had watched this being made for several months and couldn't wait to check it out. He took off in a run and realized quickly his stamina had changed. But the fresh air and beautiful morning did him well. Later that afternoon, we all took off for HH! Brayden was so happy to get another Happy Hour treat at Sonic. We stopped off at a local Farmer's Market and were thrilled to get some fresh veggies. You forget how good everything was INTENDED to taste fresh! Then we got to drive through the Pea Ridge Military Park. Brayden missed the last field trip of 3rd grade getting to do this and even though I know we weren't as fun or educational for him, it was a nice family outing for us. We realized we need to find things like this to do more often. We were blessed with beautiful weather and amazing views and some history thrown in there too.

Yesterday we found out about what's next for Brayden. We are now entering the next block of treatment called "Interim Maintenance". Brayden has completed 3 blocks of treatment since his diagnosis. He'll be admitted Monday morning at Children's for an LP (Lumbar Puncture, aka 'Spinal') where they'll give him Intrathecal Methotrexate again. It's been a while since his last one (June) and Brayden's excited about getting the 'dizzy medicine' again. Just a reminder that this is part of his High-Risk protocol treatment and the spinal chemo is to treat the leukemia cells that were found in his spinal fluid at diagnosis. It's to prevent kiddos woh go into remission after treatment from relapsing with brain cancer. They treat the brain cells completely differently. Then he'll be admitted for a minimum of 3 days. This is to monitor his levels of High Dose Methotrexate in his system that he will be given IV for the first time and he won't be released to come home until those levels have lowered. This will be repeated 3 more times in this block of treatment, but only if his counts are high enough to return and then staying again a minimum of 3 days. Once complete and his counts recover, he will receive 11 days of radiation. After that, he moves to the next block of treatement called 'Delayed Intensification'. It's another 2 months (count dependent) so it could take longer if we have to skip weeks while waiting for his boy to recover. THEN - we go to MAINTENANCE!!! This is the last treatment block he will be on but it will be for a long 2 1/2 years.

After hearing all about what's next for Monday, I was glad we had already planned to go see Ice Age at the movie theater Friday afternoon. Nini and cousin Caleb came with us as well as Brayden's friend Logan from school and we were THRILLED that Mrs. Lembke, Lauren and Juli could come too! The break from the monotony was so good for him. He did great with understanding the need to again wear a mask, take a blanket to sit on, etc. All the precautions that we've used before, he was cool with doing again, this time in front of his friends. It was so nice to hear him laughing and enjoying himself. After the movie, we got some great pictures (will try to post later) and it was so cute to hear that the girls just wanted to know if they could hug him! Even though I was still a nervous wreck about everything, his happiness out-weighed those concerns. I know we have to find balance and knowing it's going to be rough-going next week, was thankful he go this chance to get out and have fun, even for a couple short hours. So thank you Mrs. Lott, Mrs. Lembke and Logan, Juli, Lauren, Nini and Caleb for coming to hang out with Brayden and help get his mind off all things Leukemia for a bit. He loved seeing all of you!!

This will be a rough trip for us. Because Brayden will be admitted for at least 3 days, Bryan is going to stay back so he doesn't have to miss work. This will be the first time I've made the trip by myself with just Brayden and the first time we'll be there alone. I know we'll be fine and other parents have to do this all the time. The security that Bryan brings with him though will be missed and that means no breaks. We're praying for a safe journey, a quick visit, but more than that, Brayden is pretty nervous about having his PICC line pulled. That's the line that's been in his arm since April 29th. It's served him well and done a great job of continuing to work for this long and not getting clogged, not getting infected (thank goodness) and allowing him to have less pokes with the endless blood draws, and IV pushes for all his meds and courses of chemo. I keep trying to remind him we need the PICC out so once his counts increase, he can swim before the summer is out!We're going to try the numbing cream on his port on Monday so hopefully it will make it getting accessed a little easier than last time. We're praying his counts can keep climbing as high as they can before Monday so he starts out higher and stronger for this next round of treatment. We're praying his methotrexate levels lower quickly and he stays well hydrated post-treatment. He has to have preventative meds with methotrexate because it lowers the levels of folic acid in his body. Again, many side effects. He'll have Vincristine with this treatment again and have 6-MP, his oral chemo med, DAILY now for this block of treatment. With all this comes lower counts and risks, so as always, we're praying he stays free of secondary infections and we can keep germs to a minimum and that his body stays strong to recover those counts quickly!

I'll try to post an udpate from Little Rock as soon as I'm able. We are so thankful for all of you continuing to support Brayden and thankful especially for your prayers.

The Latest

Brayden is still hanging in there. His energy level fluctuates from day to day. We've definitely seen his appetite diminish and he's having more trouble sleeping. With his platelets low last week (okay, almost to nothing) his poor legs are all bruised up again. We learned this is common when platelets are low. We're trying to ensure what he does eat is healthy. I was stunned to have to cut his hair. Even though it's still thinning out, it's definitely grown since we cut the faux-hawk. Isn't that crazy? We didn't even think he would have hair at this point to cut. Somehow I managed to do well on the trim with scissors and his faux-hawk is still in tact!

He's having fun with turning our dining room into his play room. We had moved all the decorations off the table because of our game day marathon the last two weekends. Well, he's taken all his blankets (which I keep re-washing) and made a little tent for himself under the table by draping them over the top and down the sides. It's so cute and he's having a ton of fun under there. I drew the line at him eating and sleeping under there. On a rainy day, I wish I could stay under there and play!!

We went back to clinic locally to get chemo on Monday and an update on his counts. He's still hovering above the Neutropenic line which means he still doesn't have a SAFE number of white cells to fight off normal germs that you and I come in contact with every day. This is the reason for isolation and our extra cautiousness on visitors and limiting our time out individually. When Bryan comes in from work, he's having to leave his shoes in the garage and go straight to the shower and washing clothes so Brayden doesn't come in contact with germs he might have brought in with him from work.

The other things we look for in his blood work each time is his platelets and hemoglobin to ensure he's not in the danger zone of needing a transfusion like last week. We were glad these numbers had come up more from last Thursday's update since the transfusion took place a week ago now.

We'll find out by Friday if his counts are high enough to proceed to the next block of treatment. Another unknown in terms of impact to him and his reaction. It will be after this 2-month block of treatment that he will have radiation. We don't know whether to wish for higher counts so he can go to the movies again and get out/have visitors more, or wish for lower counts so he can have another break from treatment.
I'm working on thank-you cards. We've been so appreciative of the support that has been extended to Brayden. I tried to say thank-you on here to everyone but we want to ensure that there isn't anyone that thinks us any less grateful because of the lack of a personalized note. Thank you to Uncle Sammy & Denise & the United Methodist Church in Richardson, TX, for the incredible prayer blanket. Thank you to Amelia for more Hangman pads - YEAH!! Thanks to Miss Wendy & Logan for the AWESOME turtle book and we can't wait to go online and adopt the turtle. Thanks to Miss Juli for never failing to send Brayden an email each week to help keep his mind on other things.

Please pray for Brayden. School supply lists are out, back to school commercials are on, his friends that are calling him are talking about school, and he has to wait. He can't go NEAR a store yet due to isolation. He wants to do his own school supply shopping, as he always has, so he'll have to wait. I've got some silly things in mind to help get him through, but I know it will still be hard on him during this time and not getting to participate in the Back to School events. As of now, he still will have to wait until January to return to school. We're still planning on working with him at home so he doesn't get behind in starting the 4th grade and I'm thankful he won't have to be behind and so thankful for a wonderful school that he's been a part of since Kindergarten.

Jinxed

I figured it out. i jinxed us. After living out of a suitcase for the last 12 weeks, we finally decided about 9 days ago to unpack. Going week to week back and forth to Little Rock, most weeks for 2 days at a time staying there, we got to where we'd leave the basics, wash the dirty stuff, and re-pack leaving the majority of the suitcase in tact. After not having some basic things that you need while in the hospital the first 10 days, we learned quickly to always be prepared! Anyway, I guess finally deciding since we got a 4-week break from Little Rock we could un-pack and put the suitcases away jinxed us. So that was it!

All kidding aside, we had a very long 10-hr day at Children's yesterday. Brayden was so nervous and upset...I've never seen him like that. First the drive down was so stressful. He got a nosebleed and I was really worried. Bryan and I both looked at the speedometer. How fast could we get there? Once there, we were all surprised to hear they would be accessing his port for the first time. Brayden's always been the type if you can prep him for it ahead of time, he's fine. He thought he had 2 more weeks to prepare. This last-minute news really jolted all of us but especially him. He was so scared. We didn't know about it ahead of time so there wasn't time for the Emla or numbing cream to take effect. They did a freeze spray on it that I think hurt more b/c it was so cold trying to numb it. Once it was over, he was fine. We were glad it worked and understood they needed to go ahead and do it to ensure it was working and stayed working. But it was a really traumatic day for the poor guy.

They started the prep meds for the transfusion and began with the first unit. It becomes a waiting game while praying for no adverse reactions and watching his stats be monitored very frequently. I started asking about his counts and we realized they had drawn blood to do the type & cross for his blood transfusion but not for CBC's. I guess since they had been done the day before, they weren't ordered. I asked later to be sure and we saw someone coming in to draw blood for counts. I was almost scared to see them but very curious to get a true ANC read since the local clinic doesn't measure all the differentials the same way to get a true count. So the nurses come in to administer chemo. The PEG Asparaginase is 3 shots given in the muscle in his legs. Even with the numbing cream put on his legs, he was more than a little nervous. He's had it before, but he didn't remember the first time when he was in the hospital right after diagnosis. Then the other times it was done while he was sedated while doing the spinals. So this was new for him. So the nurses are literally about to give the shots and 2 other nurses run in to stop them. His platelets had dropped from 45 the day before to 12 - AAAHHH!! We were trying to figure out what that meant. I guess with them being that low, the concern was if he started to bleed, would it clot and stop on it's own? Scary. They stopped chemo and went to order platelets to be transfused. This was definitely a first for us. We were so thankful they had them there that matched what he needed and to get those going without incident or reaction. Again, another realization to thank all those who donate. You don't realize how thankful you are until you're staring at your sick child with those bags hanging next to them so grateful they are going to help him get stronger to keep fighting through this horrific treatment.

The chemo then was another scary time. Just very traumatic for him. I felt awful. I'm hoping he's past the fear b/c he's going to have those many more times. Anyway, he has to be monitored an hour after receiving that chemo for anaphylactic symptoms (scary) and while waiting, they began the other unit of blood. Soon after, he started perking back up. He didn't even remember the nose bleed in the car. He's been having more trouble with short-term memory loss, so we're being careful not to stress him about forgetting things. We know this is a side-effect and are praying it stays minimal.

We were glad to see his cheeks start pinking up and thankful we were there to even see the counts that his platelets had dropped so much in one day before heading back home. He's still neutropenic. But we go to the local clinic to get CBC's again tomorrow and we're hoping they're at least coming back in the right direction and not still falling. He rested well last night and was better today than yesterday but definitely not back to 100%. I was thankful he ate better and drank more. It's so impossible to get him to do those things while in clinic.

We were so glad to be back home and thankful Brayden didn't spike a temp and have to be admitted. After running on 4 hours of sleep, we couldn't be happier to see our own beds. We're glad the 24 hours are past to see if there was any reaction to all the transfusions and chemo meds. Yesterday was certainly harder than the other visits. It was our first glimpse of seeing low counts EVERYWHERE for him. We've known and been prepared this would happen but it gives you a new low to become adjusted to emotionally when you get there. Just when you think you've taken it all in and prepared yourself, you get swiped down again and remember to keep picking yourself back up, try to keep having faith, and pray he stays strong enough to rebound quickly. We're so glad there's only 1 week left in this 2-month course of treatment. We know the next 2-month round is high-dose methotrexate and aren't sure what all to expect from new drugs. He's had it previously but it was different when given via the Lumbar Puncture aka Spinal for the brain treatment of the cancer cells that were found in his spinal fluid at diagnosis. We'll know a week from tomorrow if we go back to Little Rock the 27th or the 3rd depending on his counts. I don't know to hope for low counts which means a break or high counts so we can move yet again to the unknown.

Wanted to say a quick thank-you to sweet Mary for the 'awesome' t-shirt you sent Brayden! Yes, he's certainly a baseball fan and mom couldn't wash it fast enough for him to wear. He had it on today and would have sooner if we weren't in Little Rock! He loved the card and loved knowing that you follow the blog. By the way, yes, his injury time-out toe cut took a week to heal and with almost no white blood cells, but we're thankful at least it healed. We've been having fun playing with the web cam. If you have one and want to chat with him, please email us at "JonesFam4877@att.net". Take care!!

PS - yes, it is safe to assume I will no longer be UNPACKING our suitcase again!! :-)

Little Rock Bound

Well, we found out that his counts have dropped again. I didn't think it was possible. Last Thursday we were watching his hemoglobin closely. We thought we had more time before needing to have a transfusion. He was at 8.5. Below 8 and he'll need a transfusion. His energy did drop significantly yesterday evening and we noticed something had changed. This morning he was definitely more tired and had less energy and complained his head hurt. This is another sign to watch for when his blood levels get too low. I was pretty stunned to get his CBC results back and see he had dropped all the way to 7.3. Thankfully, we'll leave out for Little Rock VERY early in the morning and they will transfuse him there. With his counts this low, I just am worried to have him admitted for 2 days to do this locally. In Little Rock, they can transfuse in 8 hours. We've been warned it's possible he'll spike a temp. Linda - I love the automated idea! We'll have to patent that! So we're certainly hoping that doesn't happen otherwise he'll have to be admitted.

His platelets have always been high up until this point. However, in 4 days they dropped from 127 down to 46. Below 20 and he'll need more. We've never had to have this done, although have been warned it's part of the process.

To say we're worried is an under-statement. While we enjoyed 1 week off from Little Rock, I'll feel so much better having him there. As it stands, the local clinic didn't have both chemo meds today so he'll have the Asparaginase while in clinic tomorrow too.

Brayden is doing good. He's gotten a couple more headaches since leaving clinic. He's not arguing with laying still and resting. He's eating pretty decent and is drinking lots of water. I guess it goes to show when you're having aggressive treatment, this is what it's designed to do and no amount of nutrition or doing everything right can effect his counts. Thankfully he's stayed high up until this point. We're still praying that his counts rebound quickly and secondary infections or fevers stay out of list of things we have to worry about or that he has to endure.

Thanks for praying for Brayden. We'll keep everyone posted as soon as we know more. I've promised to leave Farmopoly set up on the dining room table for us to pick back up on this weekend. His sweet Uncle John got this for him a few years back. It's a super cute farm-spin version on Monopoly. Bryan and I couldn't help but laugh at how bad he was skunking us at it yesterday. He was so lucky! He had a ton of cash, many properties and inevitably I landed on his $200 rent EVERY TIME! We certainly are thankful that we got to have some fun with him this weekend. Here's hoping we're back soon and can pick it back up!

Neutropenic

Well, I guess he's normal. We went in for the last dose of the yucky Ara-C and found out his counts had REALLY dropped. The nurses at the local clinic are super sweet and meant well, but scared us all. I was sick with worry, anxiety, fear last night. We're already trying to do so much to protect him. Facing the realization that he's now officially neutropenic threw us into another world of fear again. Are we doing enough at home to protect him? I know Our sweet Oncology Nurse was so reassuring in our call this morning and did a lot to help me feel better. Yes, we knew this would happen. Yes, he's in strict isolation. Yes, somehow he's still running around! I've been amazed today begging him to take a 3-day break and relax. Not happening. I swear his energy level is super-human. Even when Bry got home from work (and going to the grocery store for me!) he was more than amazed. We thought, okay, he practically has no white blood cells. He'll be dragging. He'll finally slow down. Maybe we'll get caught up on sleep! Nope. He's still going strong. Thankfully, he still hasn't been nauseated at all. YEAH! That's definitely an answer to prayer. I'm still checking him for fever more times a day than is normal. But he's doing a lot to keep going in drinking lots of water and eating healthy.

What's next? He'll have chemo locally the next two Monday's only: Vincristine & Asaparaginase (we call it asparagus) and then Vincristine again. We're re-checking his CBC's each Monday and Tuesday to stay close to how he's doing. My biggest concern is the last round of Ara-C took a full week to see the effects on his counts. So I'm praying they don't go lower than they are with this round that we just finished yesterday. Thankfully, the next two weeks' chemo doesn't make his counts go lower.

We're watching his counts carefully because his levels are starting to dip into the range of needing another blood transfusion. We're praying we can hold off on this until we're back in Little Rock. If we have to transfuse locally, it requires an overnite stay at the hospital. With low counts, the last place I want him to have to be is a local hospital! Thankfully his platelettes are still good and not in the range where he'll require more, although we know that's a possibility in the future as treatment continues.

He was jumping up and down and cheering like he'd made a touchdown a few hours ago. We'd all been playing in the office (ok, mom was paying bills) and I saw out of the corner of my eye his steri-strip in the floor! It finally came off on it's own from his Port placement surgery! I've gotta say, you can feel it through his skin and he's all about how cool the scar is and everything. Poor Bry almost couldn't touch it while Brayden is excitedly encouraging him, "touch it, dad! Isn't it cool?!" I thought Bryan was going to lose his dinner. It's still hard to imagine all the invasive things he has to go through, but he's so strong and so resilient and we couldn't be prouder of how he's doing. I can't imagine what we did to help him. I am so grateful and thankful for all the prayers, because we want to give credit where it's due and we know God's hand has definitely been on Brayden. To see him up and about and not laying around all day still amazes me. Bryan and I are having trouble keeping up with him!

We're planning a big Game Day tomorrow...dragging out all those fun board games you never have time to play. Yes, Monopoly. And those Cranium games are AWESOME! We've gotten a few over the years and those people are brilliant! We got some fun foods to have and are trying to make isolation more fun for him. We're also planning another list of things he wants to do when his counts go back up. On the top of his list are HH and seeing the new Ice Age movie. HH? Yeah, that's Brayden's code word for his favorite thing: Happy Hour at Sonic. Those people are marketing geniuses. You can't pass up half price gallons of soda or slushies! So it's a fun way to get him a treat. But when his counts are lower, I can't bring myself to let that come in, even with clorox-wiping down the cups!

A big thanks to my sweet circle of friends for all the towels, book for Brayden, more Clorox supplies I never thought I'd use up the first time, paper towels. Thanks to the Tyner & Holloway families! We've never even met, but I'm so thankful to you for the mail lottery you sent to Brayden! He was so excited to get a stack of fun cards from all of you! Thank you so much for caring enough for our sweet boy to send these! Thanks to Miss Cindy for the YUMMY brittle!! MMMMmmmmm.....Thanks to Grandma Sue & Papa Bob for never missing a week with an encouraging card for Brayden. He LOVES the stamps!

Please pray that his counts quickly rebound and come back up. We're praying he doesn't need the transfusion for several weeks until we are back in Little Rock. We're praying no fevers or secondary infections show up and he stays healthy enough to make it without incident to the next round of treatment. Thank you all again for everything.

Hi from Brayden!

2 days to go on the Ara-C - the yucky chemo med! This one is pretty ugly, but we're so thankful this round hasn't been as hard for him as last time. As a matter of fact, last time we were concerned about dehydration and getting extra fluids. This time, I've double-checked his meds to make sure he didn't start taking steroids again! The last 2 days he's suddenly eating double what he was!! We're so thankful he's eating healthfully. His favorite snack right now is kiwi fruit, cheese cubes, and almonds - yumm!! We're hoping his body is working overtime to keep fighting and staying strong. He's doing great with drinking lots of water and I'm just over-joyed he hasn't been sick. His energy level has been back up yesterday and today.

We've been laughing our heads off tonight playing with the new web cam our friends from my sweet Circle gave us! Thank you so much!! What's funny is my little comedian acts all serious and wants to record a quick video for the bloggie. I start recording and he used these chances to be as silly and crazy as he could be! Don't ask how many takes it took before he decided to not do jokes. I'll have to post one of those soon. His laugh is so infectious!.

We had fun cleaning out the game closet and playing boggle - remember that game?!? HE LOVED IT! He had some fun times playing football with dad tonight - indoors, of course. We've almost used up our hangman pages while at clinic. Still trying to find creative ways to keep him occupied but it's definitely challenging with a 9-yr-old little boy who wants to be outside ALL DAY!!

I made it through changing his PICC line dressing. Brayden was so encouraging of what a good job I did. I have to say it was by far the most stressful thing I've ever had to endure. You have to change the dressing in a sterile environment and not cross-contaminate anything, clean under the stitches that are holding the PICC line in his arm with alcohol sticks. But we did it! This is the downside of NOT going to Little Rock where the experts take care of this for him. We're looking forward to hopefully his counts holding or at least not getting too low and maybe a fun game day on Saturday. He's still pale, so here's hoping no transfusions are needed for a while. So two more days to go on the Ara-C and then we'll know if he gets both drugs on Monday when we stay local for treatment. So here's a quick hi from Brayden. We hope you guys like hearing from him directly and I'm sure we'll get lots more practice with the new web cam!

Please Pray for Kate

My heart is heavy. Reading this story has literally put me right back to where we were April 21st and the days beyond. What's awful is when you are faced with a situation like we have been thrown into the last several weeks, you begin to have your eyes opened to others that are hurting and suffering all around you. I meet other family members now that I find myself looking around while at ACH instead of just trying to function. Now that I see things again, I see things differently with each visit. So many other moms, and family members, with kiddos in the Burn Unit, or PICU, or NICU from another mom who hasn't gotten to take her new baby home yet. While I know there are so many out there who are hurting and suffering, we were brought this story by another trusted blogger mom and my heart just pours out to them. Their story hits so close to home and I see ourselves in them. I knew I had to share their story with you. Please pray for Kate. We all know that's all you can do in these times...pray. We were so thankful for all of those who were with us during those early days and those emails and notes of reassuring prayers were so comforting. On the nights I couldn't sleep, I remember looking back and forth from watching monitors to reading notes of encouragement and prayer. We know how much that means to this family because we've been there. This is all so fresh for them and it rips at the wounds that are still fresh and trying to heal in our own family and circumstance. Thank you for taking a minute to hear Kate's story and lift her and her family up in prayer.
http://www.youtube.com/v/ese3zYZ-NA4&hl=en&fs=1

Happy Force of July!

For those of you who didn't know, a lovely cable channel had a special Star Wars Marathon weekend. How do I know, you ask? 3 guesses...since we have the biggest Star Wars fan in the house. This was their promotional tag line, so I can't take credit for it. Other than clearing up any unknown Star Wars trivia I didn't yet know the answers to this weekend, we actually were able to have some fun times! Brayden had a great question on Friday, which lead to the Quote of the Weekend.
"So how old are we?" "We?" I asked. "Our country." "Oh, great question! I think that would be a fun math problem to try out!" So when we got home, he grabbed the calculator - which I didn't think was that funny as it defeats the purpose of trying to keep him engaged in learning. After he finished laughing, he grabbed a pencil and paper and went to work. "233 years old! WOW! We're old! We're older than...Elvis!" Whoa, there. You have some family close to you that's in the Elvis age-range that little statement might offend.
It was definitely a cool question to ask. We've tried each year to reinforce the real meaning of the holidays and celebrating the privilege of freedom is a big thing to be thankful for.
We were SO thankful to make it a full week without losing any meals, if you know what I mean. The new meds they put him on for the anti-acid is definitely helping. He hasn't complained once this week like he had on-going the week prior. I'm hoping that helped. Plus, with the distractions of help of additional anti-nausea meds, we've made it through so far, so good. The biggest distraction of all was planning what he wanted to do for the 4th weekend. We rented some movies Thursday and had a HUGE campout in the living room floor on Friday night. You should have SEEN the look on his face when dad pulled the full-size mattress of our guest bed and brought it into the living room! I thought sleeping on it would be fun for him. The storms woke him up at 4:30 and not going back to sleep the rest of the day after only 5 hrs of sleep had mom and dad BEGGING him to take a nap. But this mattress became his trampoline, light saber training ground, football endzone, you name it. Bryan and I were trying to figure out a way to bottle this energy that came out of nowhere! We were telling Brayden that and he explained to us that would mean we would need an IV to hook up to his PICC line to do that! Of course...if only it were that simple.
Part of his big plan was to get to go to the fireworks stand. So we talked about the plan and that wearing his mask was a MUST! We'd go late for hopes of a smaller crowd, and he'd have to not touch, and clean-up when we got home. He was so excited. Not even 1 minute after walking in, he grabbed my arm and whispered he didn't think he could do this. He was getting stares from everywhere. There were some boys his age around that were just gawking and he was about to break into tears. I put my arm around him and we trudged on as I reassured him they were just curious about the mask and encouraged him not to let them ruin his fun. He made it through and we hustled back to the truck while dad paid for everything. We talked about it quite a bit, over and over. This was tough, because it wasn't like a non-crowded movie theater or being dark where no one could see him. This was a bit more obvious and it was the first time he was hit with those feelings. My heart just broke for him. I know being in clinic is so much easier because the kids there are like him. It was a glimpse of how re-entry into normal life again might be more difficult than what I had originally thought. I'm definitely praying for him.
So we trudged on with our 4th plans. We had a fun get-together with Nini & Papaw at our house. We enjoyed a show put on by dad and Brayden had fun getting to do a few things. We had to laugh again at the mosquitos - if they bit him, what did they get in them from biting Brayden with chemo meds in his blood?!?! I was worried the smoke might be too much, but we tried to relax and have fun and let him enjoy the fun time like he would any other year.
Sunday everything definitely caught up to him. He's been pretty sore after all the running around he was doing. He told us he used up all his gas from all the running around he'd been doing and why didn't he save some? Too funny...
We've been a little worried today. He's looked so pale. But he's eaten SO healthy today and done so great with all the water he's drank. We'll find out an update on his CBC's tomorrow as well as continue the last 4 days of this dose of the ARA-C. We're praying the next several weeks as the effects of this round continues to settle in, that his counts stay strong and he doesn't have to be hospitalized for fever or secondary infections. Pray for me...I get to change his PICC line dressing on my own tomorrow for the first time. I've watched the nurses in clinic do it, but the good part about being home and not going back to Little Rock for 3-4 wks had an adverse effect with mom getting the responsibility of this stressful step. I'm sure it will be just like flushing it when we first got home and taking care of it...once I've done it, it will become like second nature.

Injury Time-Out

We never really know or can expect from day to day how Brayden will do. Wednesday when we did chemo locally was interesting. He luckily kept his prep-meds down. They help prevent Brayden from getting a fever or getting sick from the chemo. He did good until we walked in...and he instantly started feeling nauseated. I think the environment is rough and maybe the anticipation of it had upset him. Bring on the distraction! Brayden was quick to call Nini (who thankfully lives just up the road) and the distraction was on her way! Mom's bag of tricks (or Mary Poppins bag) only goes so deep. But he definitely brought on the big guns with Nini. Before she got there, we had to take a quick run to the restroom. Just walking in put him over the edge. I don't know how he didn't get sick. I was never so happy to see a backdoor we quickly exited. The fresh air and breeze was a welcome distraction. He pulled it together (I don't know how) while looking at the clouds, breathing in the fresh air, and wishing we could just have chemo outside! The nurse was great to have some nausea med #3 ready to go for him. We're still too nervous to give nausea med #2 after that reaction. Thankfully, he got through chemo after the nausea med had taken effect and Nini was there to be her goofy self.
We've been planning our 4th of July weekend for a while as a distraction. We've used up almost all of our Hangman pages. But then there's Nini! We were both so thankful she came back home with us. My workday was VERY busy and I didn't want to work another weekend, so she was great to help us out. This was the first time I had asked, and I guess she knows if I have to ask, I must really need her. She jumped in and folded clothes, did dishes, scurbbed counters in a way she knows I would approve of! But more than anything, it was just great to be able to spend some time with her. We're so thankful for our family and wish they all were just up the road! The rest of the day Brayden did great! No nausea and he was pretty peppy later in the afternoon and evening.
Today, we called in the troops again, so thankfully Nini had the day off and could again join us for chemo. He did great! No nausea or extra meds needed, but I think we got out of there just in time. For some reason, they cook in there and the whole place smells like food! Yesterday they had food from a local Italian place brought in and we literally RAN out the door to avoid the smell! I'm not sure if kids have more of a smell sensitivity with chemo than adults, and since they normally don't do chemo for kids, maybe it's not a big concern? Anyway, it's at least better than the 4 hr drive to Little Rock! I wish we could have the best of both worlds with ACH being closer, but this is the way it is. We were SO happy to hear today that the local clinic CAN get the chemo meds for him, so we've got a 3 week (maybe 4 week depending on counts) break from the drive! YEAH! I'm hoping that will help us all rest up a little and recover from the lack of sleep! Not to mention how happy our car will be for the break!!
This afternoon, while I was working, Brayden was playing with Nini. I come out of the office to see Nini and Brayden enjoying an injury time-out. Brayden's leg is propped up while Nini's eye is covered with a cold cloth. Nini has a weird look on her face. "WHAT HAPPENED!?!?!" Nini and Brayden were quick to explain they were enjoying a fun little game of indoor soccer (with the mini nerf soccer ball) when Brayden kicked the ball right into Nini's eye!!! Then, he was running back for a kick and caught his toe on his basket of toys and fun stuff in the floor and got a cut. I can't believe they both were injured! After checking them both out, I HAD to grab the camera for the evidence. This was too much and instantly I had a title for the blog. Later, Brayden was recounting the story to Aunt Heather who was giving him a hard time for giving Nini a black eye. And we have Brayden's Quote of the Day: "No, I didn't give her a black eye! It was more purple or pink!"