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!!
Jones Family
November 2009
Monday, August 31, 2009
Saturday, August 29, 2009
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!
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!
Sunday, August 23, 2009
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.
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.
Tuesday, August 18, 2009
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.
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.
Monday, August 17, 2009
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!!
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!!
Friday, August 14, 2009
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!
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!
Sunday, August 9, 2009
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...
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...
Saturday, August 1, 2009
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!!!!
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!!!!
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