Brayden picked out the title. One of the sweet nurses that we have when admitted to ACH, likes to remind Brayden it's just a "Popcorn Visit. We pop in and pop out." It was a cute reminder for me to be thankful for others that were having to stay longer. So yesterday was another popcorn visit.
We got back from Little Rock a couple of hours ago. We found out late Saturday for sure Brayden's counts had rebounded enough to begin the last 2 weeks of this block of treatment called Consolidation. This is the two weeks we've been dreading. We know from last time, the Cytoxin he got on Monday (that requires him to be admitted to monitor output and kidney function overnight) can be ugly. The Ara-C he has started is the one that caused Brayden to see his first glimpse of nausea during chemo. He didn't have to have a sedation for a spinal or LP, so he got to eat breakfast and we had a good trip down. We're perfecting pit stops when in the beginning, just the thought of it would bring paralyzing fear. Think about it: you're bringing a little one home (yes, he's still little to me) who needs to be isolated from germs, yet we have to stop to use the bathroom - where, exactly on the 4-hr drive home? I'm thankful he's a boy, so we can make things, how should I say, easier logistically? Us girls aren't so lucky in that department. Thanks to another mom's advice who's been through this, I just pack up gloves, clorox wipes, and include them with the trip. We found a nice little mom & pop stop about mid-way we've used several times. The catch is you have to make a purchase. Oh, and a minimum purchase to use a debit card. Inevitably, we don't leave with cash. It's work enough remembering to gas up before we leave! I'm getting off track...
So, unfortunately Brayden's been having a lot of nausea lately. We've thought it's related to acid reflux based on how he's described it. It's unfortunate because he had a week break from chemo, so I was hoping he wouldn't be sick. He was...15 min into our clinic visit. Poor guy. They got his Zofran going (the miracle anti-nausea drug that usually works) and we headed over to be admitted. Each time we cross our fingers and hold our breath for a private room so we can both stay with him at the hospital. The last time we didn't get so lucky; poor Bryan slept in the waiting room while I slept in the chair in the room. This time, there was a fold-out couch, but only one parent could stay in the room. We used points generously donated from my work family to allow him a bed to sleep in. I was jealous of his nice hotel room shower...it's a long story.
While in Clinic, we had a great visit with Brayden's Dr. and getting caught up with him. Brayden is still doing great with a few things: the Peripheral Neuropathy has brought on a couple of episodes. Imagine restless leg syndrome exponentially multiplied. He had trouble standing or holding things and it was really scary last week when it happened. Luckily a pain pill helped him to finally relax and give him some relief until it passed. It was hard for me to see him like that. Thankfully his Dr. says this is a good sign of healing with the nerve signals. So the healing brings with it a not-so-great side effect. His port site is healing great! It was nice to see so many of the people we are growing fond of with all that they do to help our sweet boy. We're trying a new med to help with the acid and hopefully ease that issue. He's got some bumps on his legs as a side-effect of the Ara-C. All in all, he's doing good.
So, we got him to his room and ready to prep him with pre-chemo meds when he got sick again. They tried another med to ease the nausea and for the first time, Brayden had a dystonic reaction to it. We were thankful if it was going to happen, it happened there. The staff was great and responded immediately. If Brayden hadn't woken up agitated (which he NEVER is) we may not have noticed anything right away. He was having involuntary muscle spasms in his upper body and in his legs. He was telling us how he didn't feel right. The Dr. was there within seconds to check him out and, of course, Brayden tells him he's fine! AAAHHH!!! Anyway, after his exam, Benadryl to the rescue and he was good to go. His nurse was SO sweet to come down and check on him later after hearing of his reaction. She had to see for herself the non-by-the-book patient that had this reaction! She's awesome...and I'm not just saying that because we found out last week she's reading the bloggie!
It's amazing how when he's sick and sleeping and you WANT him to drink and eat you miss the crazy days of the steroids! I was over-joyed when he finally kept a little sprite down, water, and a popsicle before dozing back off after the 2nd anti-nausea med.
We were so blessed to have a visit from our friends Brian and Kathie who were also in town. They were so sweet to come by and visit with Brayden and then bring us back a YUMMY lunch from PF Chang's! What a treat and nice break from the hospital cafeteria! We snuck some food while Brayden was napping. Later that evening, he woke up a little more peppy and I was telling him how Kathie and Brian had brought him some fortune cookies! He wanted one and I thought, yeah, that's bland and safe. Nope...10 minutes later, it returned. So we went to nausea medicine #3. When Brayden's admitted for chemo, they keep him on continuous Zofran iv thru his PICC line, so poor guy was really not feeling well. With nausea medicine #3, he got CRAZY loopy!! His nurse came in to give him his meds and he kept nodding off while taking them! Suddenly he looked down at the pill cup and said, "Why are there 4 pills?" We both couldn't hold back our giggles. I reassured him, "There's only 2 pills, sweetie. Let's take these quickly and go back to sleep!" He was quite the entertainer for both of us.
Through the night, they kept checking Brayden's output for toxicity. I got a little nervous when they came in to increase his fluids because of some results that came back. Thankfully, by mid-day today, he was good to go. But it made for an interesting night. The funniest was after his loopiness from anit-nausea med #3, he popped up from sleeping and announced he was hungry around 10. I was never so happy that he kept a banana down and some more water. He rested the rest of the night (minus bathroom breaks!)
This morning he finally rebounded and enjoyed sleeping in, a nice, late breakfast, and thankfully no nausea. It was a long trip home. I felt awful for him. The anti-nausea med #3 brought out some serious emotional side effects. But riding in the backseat with him and just giving him love and support and a shoulder seemed to help. We got distracted with a movie. But I think the endurance is going to be tough for him this week and next. Please say a prayer for him.
We were excited to learn that after Brayden is done with this two weeks of treatment, we might get a 3-4 week break from trips to Little Rock and can do chemo locally. From the start of the next block of treatment (called Interim Maintenance or Re-Induction) 3 years from that date is when he finishes treatment. Again this doesn't account for delays in treatment due to low counts or infections, etc. But we've got the roadmap now for everything and the 4 sheets of paper really look less initimidating than we thought! It was harder to hear Brayden say, "So treatment will be done in 2012?" Wow...putting it that way, though, reminds us how long that really is. We'll have 2 1/2 or more months before radiation. He has many more Spinals or LP's in his future where they inject Methotrexate for the brain cell treatment separate from the rest of his blood treatment. He was happy to hear that because, he's addicted to the dizzy medicine. In a good way! Again, I'm thankful he's not anxious about having it done!
We've got chemo locally for the yucky Ara-C Wednesday & Thursday. They'll give him fluids if he's been nauseated, and do an iv push of the chemo. If he's not been sick, it usually takes 30 min. He's got chemo pills to take by month for the next two weeks. He goes back Monday thru Thursday to have the same chemo push locally. Then the break. So here's praying he can enjoy the 4th and we can speed past this Ara-C and keep moving on!!
Jones Family
November 2009
Tuesday, June 30, 2009
Sunday, June 28, 2009
Chef Brayden
Brayden has really been dreading this next week. His only solace is that he knows getting through it will put him closer to the finish line, so he's pressing on! We went to get CBC's (blood work) done locally on Friday afternoon. Since Brayden's counts were too low to be admitted and begin the next chemo 2-week regimen last Monday, we had to wait. He was pumped to run in and run out just for a blood draw from his PICC line. I think the staff was glad to see him much peppier that they have before! The last time we were there, we were begging for fluids and stronger anti-nausea meds. He did great and was cracking us up! Nini went with us and we passed the time with more Hangman. He thought he was SOOOO sneaky! I beat him...
The results came back quick and showed surprisingly in 3 days, his counts were back up above 1000 - what?!?! So we waited for the official word from his nurse, but I started preparing him. It looked like we would be back in Little Rock on Monday. He was bummed, to say the least, but is keeping perspective. He bounded out of the clinic almost at a full run and couldn't be happier to get back outside!
We had big plans for the weekend. Dad was going on a camp/fishing trip with our friend, Danny, so Brayden and I planned to make homemade pizza as part of our daddy-escape weekend. I was a little worried. Yesterday started out pretty rough. He was having some problems with his legs and hands, I'm assuming stemming from the Peripheral Neuropathy. He's being medicated for it, but this was a bizarre episode we're going to ask about. I felt awful for him. After some meds, he was finally able to relax and take a nap. Unfortunately, when he woke up, he was so sick. He felt better afterward, but I was concerned if any nutrition from breakfast or lunch was left. I was feeling like the rest of the weekend would look much different than we had planned. Suddenly, he pepped up. He was feeling much better. We've been wondering if he's got an ulcer or something. He's having a lot of problems with stomach acid and that's WITH medication. So we'll find out about that too.
I had resigned myself to thinking homemade pizza would be replaced with ramen noodles when he eagerly jumped up and asked for his apron. When he was about 5 I got him the cutest Chef's hat and apron from Pampered Chef. He wore it once then to humor me. Even though he liked the apron, I think he was afraid it was too over-the-top. I don't think he ever wore the hat again. Just in case, it's kept in the kitchen for the one time he'll wear it. Sometimes at Christmas when we're baking or making Reindeer Chow, he'll humor me and wear the apron. So after he asked for it to begin the homemade pizza, I BEGGED him to let me take a picture of him with the hat! I won't disclose how much bargaining I had to do to get him to relinquish approval to post said picture here.
Isn't he so cute?!?! I was totally hands-off on this. He did it all. Somewhere down the line, he decided he likes pineapple on his pizza. I never remembered him trying it but in the last couple of years, he loves pineapple and canadian bacon. This time he went with pineapple and veggies. I think more cheese wound up in his mouth than on the pizza. Don't get me started on the olives. The boy has always been an olive fan. I usually discourage snacking while cooking, but it was his pizza - go for it! He was very insistent on how it needed to be done and he did a great job all on his own!
The finished product looked great! He took a bite and couldn't stop complimenting himself on how good it was! "This is the best pizza EVER!"
Nini Annette joined us for a sleepover. We had fun watching Enchanted and seeing Brayden make fun of it! I'm trying to force the songs out of my head even still. Those things stick in there when nothing else will!
Daddy made it home after us waking up before 6 to some crazy loud thunder this morning! Brayden enjoyed filling dad's spot in the big bed with mommy. He's catching up on sleep with dad now after being woken up so early and dad, of course, not sleeping much at all while camping, was thankful for the nap.
I've gotta be honest. Friday was a tough day for me. I was reading a devotional late that night and realized we don't have to have flowery words when we pray. God knows what we want; he just wants us to ask. I've always been the one to think He's too busy for my stuff and I can handle it. I really couldn't handle it all on Friday. Things were hectic and stressful for me BEFORE this journey began with Brayden's diagnosis. Now, I've realized how much I need help. I haven't been sleeping well and with the weekly trips to Little Rock, it's like we can never get caught up on sleep. I'm not going to mention the cleaning responsibilities. And Brayden. When he's good; I'm good. But when he's not, it's almost more than I can bear. I don't know how other moms do it. I was telling my mom this is like week 10. How do parents in Years 2 and 3 do it? I related it once to a friend to that feeling you have when you're waiting for a loved one who's in surgery? You're holding your breath, praying everything goes well and hoping nothing bad happens. That's how I feel so much of the time. Does it ever stop? From checking hourly for fever, mouth sores, digestive stuff, water intake, healthy food, exercise, PICC lines, port area to heal, medicine, ANC counts, and all the other stuff PLUS keeping up with his medical bills and stuff is like running a business. I was reading recently in a Leukemia book the hospital gave us how important documenting is for many reasons. There's just too much.
So Friday night, 11:00, I'm dragging, exhausted and still have to go to the grocery store and NOT eager to go. As I'm putting in another load of laundry, my thoughts went back to the devotional. God just wants us to tell him what we need - in our words. I prayed a simple prayer. It's not easy to admit we can't do it all, especially for me. It's easier to pray for someone than to pray for ourselves. But I know I need Him now more than ever and not always just for the big stuff. So after dragging into bed at 2 am, I was thankful for a new day and renewed energy. Even with the hard stuff with Brayden when he wasn't feeling well, I'm thankful for good times with him not long after. We may have to look harder for the good times or things to be thankful for, but they're still there.
So we're headed back to Little Rock VERY early on Monday. I really hope in the 3 days since the CBC until chemo, his body will build up more counts to have banked for the next two weeks that are going to be tough. He'll be admitted on Monday and hopefully going home Tuesday afternoon. We'll do chemo locally the following two days. We found out IF the local clinic can get another chemo med to administer to him, we MIGHT get a 3-week reprieve from traveling to Little Rock!! YEAH!!!! I hope it works out. My car will be thankful for the rest; Bryan will be thankful to not have to drive and miss work. I will be thankful to not have to pack and un-pack and I KNOW Brayden will be thankful to not have that 7-hr round-trip! Here's praying it works out and we get a travel break!!
The results came back quick and showed surprisingly in 3 days, his counts were back up above 1000 - what?!?! So we waited for the official word from his nurse, but I started preparing him. It looked like we would be back in Little Rock on Monday. He was bummed, to say the least, but is keeping perspective. He bounded out of the clinic almost at a full run and couldn't be happier to get back outside!
We had big plans for the weekend. Dad was going on a camp/fishing trip with our friend, Danny, so Brayden and I planned to make homemade pizza as part of our daddy-escape weekend. I was a little worried. Yesterday started out pretty rough. He was having some problems with his legs and hands, I'm assuming stemming from the Peripheral Neuropathy. He's being medicated for it, but this was a bizarre episode we're going to ask about. I felt awful for him. After some meds, he was finally able to relax and take a nap. Unfortunately, when he woke up, he was so sick. He felt better afterward, but I was concerned if any nutrition from breakfast or lunch was left. I was feeling like the rest of the weekend would look much different than we had planned. Suddenly, he pepped up. He was feeling much better. We've been wondering if he's got an ulcer or something. He's having a lot of problems with stomach acid and that's WITH medication. So we'll find out about that too.
I had resigned myself to thinking homemade pizza would be replaced with ramen noodles when he eagerly jumped up and asked for his apron. When he was about 5 I got him the cutest Chef's hat and apron from Pampered Chef. He wore it once then to humor me. Even though he liked the apron, I think he was afraid it was too over-the-top. I don't think he ever wore the hat again. Just in case, it's kept in the kitchen for the one time he'll wear it. Sometimes at Christmas when we're baking or making Reindeer Chow, he'll humor me and wear the apron. So after he asked for it to begin the homemade pizza, I BEGGED him to let me take a picture of him with the hat! I won't disclose how much bargaining I had to do to get him to relinquish approval to post said picture here.
Isn't he so cute?!?! I was totally hands-off on this. He did it all. Somewhere down the line, he decided he likes pineapple on his pizza. I never remembered him trying it but in the last couple of years, he loves pineapple and canadian bacon. This time he went with pineapple and veggies. I think more cheese wound up in his mouth than on the pizza. Don't get me started on the olives. The boy has always been an olive fan. I usually discourage snacking while cooking, but it was his pizza - go for it! He was very insistent on how it needed to be done and he did a great job all on his own!
The finished product looked great! He took a bite and couldn't stop complimenting himself on how good it was! "This is the best pizza EVER!"
Nini Annette joined us for a sleepover. We had fun watching Enchanted and seeing Brayden make fun of it! I'm trying to force the songs out of my head even still. Those things stick in there when nothing else will!
Daddy made it home after us waking up before 6 to some crazy loud thunder this morning! Brayden enjoyed filling dad's spot in the big bed with mommy. He's catching up on sleep with dad now after being woken up so early and dad, of course, not sleeping much at all while camping, was thankful for the nap.
I've gotta be honest. Friday was a tough day for me. I was reading a devotional late that night and realized we don't have to have flowery words when we pray. God knows what we want; he just wants us to ask. I've always been the one to think He's too busy for my stuff and I can handle it. I really couldn't handle it all on Friday. Things were hectic and stressful for me BEFORE this journey began with Brayden's diagnosis. Now, I've realized how much I need help. I haven't been sleeping well and with the weekly trips to Little Rock, it's like we can never get caught up on sleep. I'm not going to mention the cleaning responsibilities. And Brayden. When he's good; I'm good. But when he's not, it's almost more than I can bear. I don't know how other moms do it. I was telling my mom this is like week 10. How do parents in Years 2 and 3 do it? I related it once to a friend to that feeling you have when you're waiting for a loved one who's in surgery? You're holding your breath, praying everything goes well and hoping nothing bad happens. That's how I feel so much of the time. Does it ever stop? From checking hourly for fever, mouth sores, digestive stuff, water intake, healthy food, exercise, PICC lines, port area to heal, medicine, ANC counts, and all the other stuff PLUS keeping up with his medical bills and stuff is like running a business. I was reading recently in a Leukemia book the hospital gave us how important documenting is for many reasons. There's just too much.
So Friday night, 11:00, I'm dragging, exhausted and still have to go to the grocery store and NOT eager to go. As I'm putting in another load of laundry, my thoughts went back to the devotional. God just wants us to tell him what we need - in our words. I prayed a simple prayer. It's not easy to admit we can't do it all, especially for me. It's easier to pray for someone than to pray for ourselves. But I know I need Him now more than ever and not always just for the big stuff. So after dragging into bed at 2 am, I was thankful for a new day and renewed energy. Even with the hard stuff with Brayden when he wasn't feeling well, I'm thankful for good times with him not long after. We may have to look harder for the good times or things to be thankful for, but they're still there.
So we're headed back to Little Rock VERY early on Monday. I really hope in the 3 days since the CBC until chemo, his body will build up more counts to have banked for the next two weeks that are going to be tough. He'll be admitted on Monday and hopefully going home Tuesday afternoon. We'll do chemo locally the following two days. We found out IF the local clinic can get another chemo med to administer to him, we MIGHT get a 3-week reprieve from traveling to Little Rock!! YEAH!!!! I hope it works out. My car will be thankful for the rest; Bryan will be thankful to not have to drive and miss work. I will be thankful to not have to pack and un-pack and I KNOW Brayden will be thankful to not have that 7-hr round-trip! Here's praying it works out and we get a travel break!!
Friday, June 26, 2009
Brayden's Days
Please let me know if any of you have questions you want to know or things you want to hear from Brayden. I had one recently about his days and thought I would share a few things.
Since Brayden was 6 months old, he would sleep 12 hrs a night. I know, we're lucky and yes, we realize what an anomaly it really is. On school nights, as he got older, he transitioned into 10 hrs a night. Since his diagnosis, he's happily reverted back to his old schedule. I know it's good for him and he has only taken 1 nap since this all started, so to get the good, deep sleep, hopefully his body is working on repairing good cells. He LOVES breakfast, in case I haven't made that very clear in prior posts! He loves Little House on the Prairie, Phineas & Ferb, Suite Life of Zach and Cody. I don't let him play Playstation during the weekdays, not as a punishment, but he agrees there are lots of other things he can do. I'm blessed to have a little craft room up front, so there are limitless craft options for him between coloring, stickers, you name it. We've been working on Vacation Stations for school, which has little weekly refreshers in it so the kiddos retain more before the next year.
Then there's the Brayden games. Since he was little, he's been obsessed with sports. I've always wanted to be the kind of mom where this is his house too. He needs to be respectful of it, but we can play in the house. So our living room has been a football field, soccer field, baseball field, golf green - but since that 'one' time mom hasn't been as allowing of that. Don't misunderstand; these aren't full-size balls and he uses nerf or smaller versions to play. But he's got his get-up for each sport. Football he's got his band with the plays on his arm, his quarterback towel on his waste, his eye patches, his helmet, and usually his football pants we bought for him when he was 5 (which are now like spandex on him) but he insists on still wearing. Yesterday, he comes into the office where I'm working donning mis-matching soccer socks up to his knees and is reassuring me it's okay, he's just playing. Okay...I don't think I would have said anything anyway. 10 minutes later I hear a crash while on a conference call with my boss. Brayden's crying. He must have figured out sometime in between the announcement of his socks and the crash that he can slide with them on wherever we have the ceramic tile floor that I'm incessantly mopping! Poor guy. I was worried because of the new port, but he assured me he fell on his butt. I told him that's why God gave us that extra padding back there. The socks were quickly removed.
The next sport has been a daily event since baseball season has been here and our beloved Baseball Hogs got to go to the College World Series - woohoo! Those games were a blast to be a part of via tv. It's so great they even got to go! Anyway, he's got these miniature bats and mini whiffle balls? I think they're Bryan's for practicing swings in the backyard. Anyway...these wound up in Brayden's ball drawer (yes, we have one just to hold the balls) and he's using them to SMACK them in the living room...I mean baseball field. And he's got his pretend bases down and he's running them! It was fun to watch. All this complete with his Razorback bike helmet that doubles as a batting helmet. (By the way, he informed me yesterday he's started his Christmas list. He wants a catcher's helmet). On good days, this never stops; the Brayden Games, that is. It's been so scary hot to go outside very long and because we have to be careful of the sun sensitivity I'm glad he's having fun inside. I'm still going to try to sneak a picture but I don't think he'd approve of me posting it on HIS bloggie. Hopefully the visual picture I tried to paint is evidence enough!
Then there's this...his room is definitely expanding to other parts of the house.
My dining room floor has become a movie setup for the meeting of the Star Wars Trilogy series - both parts - as well as the Clone Wars! Can I just say what a marketing genius George Lucas is?
Yes, there's definitely evidence of a boy in the house everywhere we look. He's having fun and still being as creative as ever.
On our recent trip home from chemo, we reminisced of the old days and opened the sun roof, cranked up the toons, and did our crazy dances while screaming to the music. It was so much fun, my stomach hurt from laughing so hard.
He's proud his port is healing so well. He was petrified of taking a shower yesterday, but I reassured him the Dr. approved it. Besides, mom was so done with sponge baths for him! I think he got a little braver after the shower and came to show me he could feel where the port was! It's pretty neat. Since he'll have it for at least 3 yrs or more (some kids much longer), I'm certain he'll have fun showing it off at school when he goes back in January.
He played his first game of War with me. I used to despise this game when I was younger. It goes on forever! But it was a ton of fun playing and teaching him and we had TRIPLE WAR! That had never happened to me before! You know, where the cards tie, then you have war, then they tied again...and again!! Afterwards, I told him he needed to play 52-card pick-up. I remember when my uncles taught me how to play this so-called game. The look on his face when he threw the cards into the air was of sheer exhilaration!
We're finding ways to have fun. Whether it's books, light saber fights, card games, you name it. He's talking to his Nini's and Papa's at least once a day. Honestly, the days fly by and are over before we know it.
Since Brayden was 6 months old, he would sleep 12 hrs a night. I know, we're lucky and yes, we realize what an anomaly it really is. On school nights, as he got older, he transitioned into 10 hrs a night. Since his diagnosis, he's happily reverted back to his old schedule. I know it's good for him and he has only taken 1 nap since this all started, so to get the good, deep sleep, hopefully his body is working on repairing good cells. He LOVES breakfast, in case I haven't made that very clear in prior posts! He loves Little House on the Prairie, Phineas & Ferb, Suite Life of Zach and Cody. I don't let him play Playstation during the weekdays, not as a punishment, but he agrees there are lots of other things he can do. I'm blessed to have a little craft room up front, so there are limitless craft options for him between coloring, stickers, you name it. We've been working on Vacation Stations for school, which has little weekly refreshers in it so the kiddos retain more before the next year.
Then there's the Brayden games. Since he was little, he's been obsessed with sports. I've always wanted to be the kind of mom where this is his house too. He needs to be respectful of it, but we can play in the house. So our living room has been a football field, soccer field, baseball field, golf green - but since that 'one' time mom hasn't been as allowing of that. Don't misunderstand; these aren't full-size balls and he uses nerf or smaller versions to play. But he's got his get-up for each sport. Football he's got his band with the plays on his arm, his quarterback towel on his waste, his eye patches, his helmet, and usually his football pants we bought for him when he was 5 (which are now like spandex on him) but he insists on still wearing. Yesterday, he comes into the office where I'm working donning mis-matching soccer socks up to his knees and is reassuring me it's okay, he's just playing. Okay...I don't think I would have said anything anyway. 10 minutes later I hear a crash while on a conference call with my boss. Brayden's crying. He must have figured out sometime in between the announcement of his socks and the crash that he can slide with them on wherever we have the ceramic tile floor that I'm incessantly mopping! Poor guy. I was worried because of the new port, but he assured me he fell on his butt. I told him that's why God gave us that extra padding back there. The socks were quickly removed.
The next sport has been a daily event since baseball season has been here and our beloved Baseball Hogs got to go to the College World Series - woohoo! Those games were a blast to be a part of via tv. It's so great they even got to go! Anyway, he's got these miniature bats and mini whiffle balls? I think they're Bryan's for practicing swings in the backyard. Anyway...these wound up in Brayden's ball drawer (yes, we have one just to hold the balls) and he's using them to SMACK them in the living room...I mean baseball field. And he's got his pretend bases down and he's running them! It was fun to watch. All this complete with his Razorback bike helmet that doubles as a batting helmet. (By the way, he informed me yesterday he's started his Christmas list. He wants a catcher's helmet). On good days, this never stops; the Brayden Games, that is. It's been so scary hot to go outside very long and because we have to be careful of the sun sensitivity I'm glad he's having fun inside. I'm still going to try to sneak a picture but I don't think he'd approve of me posting it on HIS bloggie. Hopefully the visual picture I tried to paint is evidence enough!
Then there's this...his room is definitely expanding to other parts of the house.
My dining room floor has become a movie setup for the meeting of the Star Wars Trilogy series - both parts - as well as the Clone Wars! Can I just say what a marketing genius George Lucas is?
Yes, there's definitely evidence of a boy in the house everywhere we look. He's having fun and still being as creative as ever.
On our recent trip home from chemo, we reminisced of the old days and opened the sun roof, cranked up the toons, and did our crazy dances while screaming to the music. It was so much fun, my stomach hurt from laughing so hard.
He's proud his port is healing so well. He was petrified of taking a shower yesterday, but I reassured him the Dr. approved it. Besides, mom was so done with sponge baths for him! I think he got a little braver after the shower and came to show me he could feel where the port was! It's pretty neat. Since he'll have it for at least 3 yrs or more (some kids much longer), I'm certain he'll have fun showing it off at school when he goes back in January.
He played his first game of War with me. I used to despise this game when I was younger. It goes on forever! But it was a ton of fun playing and teaching him and we had TRIPLE WAR! That had never happened to me before! You know, where the cards tie, then you have war, then they tied again...and again!! Afterwards, I told him he needed to play 52-card pick-up. I remember when my uncles taught me how to play this so-called game. The look on his face when he threw the cards into the air was of sheer exhilaration!
We're finding ways to have fun. Whether it's books, light saber fights, card games, you name it. He's talking to his Nini's and Papa's at least once a day. Honestly, the days fly by and are over before we know it.
Wednesday, June 24, 2009
2 months in...
We've had a roller coaster 72 hours. We left for Little Rock Sunday afternoon and thankfully had a good trip. We enjoyed a walk to the pool at the hotel and got to put our feet in at dusk (with a mask on) and Brayden seemed thrilled to push the boundaries of the steps of the pool. Freaking me out has become his favorite past time. I know he still is a boy wanting to explore, I just prefer it in other areas NOT open water with a gaping PICC line hole in his arm going straight to his heart, ya know? So I'm not over-reacting, right? Honestly, it was so relaxing to be in the cooler evening weather by the quiet pool and just enjoy the company of my sweet boy. We read more and prepped all I could on the impending Port surgery the next morning. We were all anxious about it, but we had some great materials from the hospital to help explain in detail what was going to happen. The past several days prior, he still wasn't at all sure about this THING they were going to cut him open and put in him. What's so bad about the PICC line? Sure, we have to maintenance it like crazy, wrap it before he can shower each day, pray it doesn't become infected, pray the lines don't clot off, change the bandage and keep it clean each week, but other than that, why mess with what's working? Even with the promise of swimming this summer once his port heals, I guess he can't get past the part of, "yeah, but they'll still have to cut me open!"
We get to the hospital early and ready to go and Brayden is being his cute self. We had fun playing Hangman on these cute little pads of paper I found to keep in our bag of goodies when we go to clinic. He was very, um, excited to celebrate when he would beat me. We passed the time waiting for pre-op, then talking with the Dr., the nurse, the anesthesiologist, the other nurse, then the Child life Specialist. I love how the hospital is geared toward kids and she came in and helped prepare him for what was going to happen. He seemed good to go...until he heard "Intubation." All the prep work we did didn't include that little tidbit. "What's intubation?" he was quick to ask. My eyes were darting at the team trying to figure out how we missed this part of the process. Thankfully, they would at least wait until he was sedated before putting the breathing tube down his throat and after the surgery was complete, it would be pulled out before he came to. I'll leave out the part about the medical corrections that were made about not taking out his PICC line so his port had time to heal. The hardest part for us was saying goodbye to him after some prayers together and walking to the waiting room. Each week when he's had his spinals or Lumbar Punctures, we at least get to hold his hand and stay with him until he's asleep. This was different.
So we waited...we laughed how the desk nurse said to be back in 20 min. We rushed back and guess what? The surgery hadn't started yet. They let us know when it had started and the Dr. was great to come out and talk to us when it was over. He said he did great. And we waited some more. It was another hour and a half before we could go see him in recovery. He did great, but was quick to show us he had an iv put in. WHAT?!?! So his nurse nodded in understanding. He has a PICC line, a Port and now an IV? Poor guy....Then he got really sick really fast. The surgery went great, but coming out from under the anesthesia he didn't do so well. They gave him a couple more anti-nausea medications and some morphine because he was hurting. It was awful to see him sick. And we waited. The orders were lost to get Brayden's blood drawn that morning and the floor where they were waiting for him to be admitted had his room ready, but there were no orders for him to go to the floor. This went on for an hour and finally Brayden's awesome nurse came down personally to re-write the orders and get the blood drawn. And we waited more. Almost 2 hours of the lab not receiving the blood before his Recovery nurse went to check and the blood never got sent to the labs. Thankfully it hadn't clotted yet and they could still use it for his labs. Then we wait more for the labs to do the tests. Brayden was resting peacefully...Bryan and I? Not so much. If Brayden hadn't been resting peacefully, it would have been a different several hours entirely.
Bryan and I had been so convinced Brayden would be admitted. We knew 4 days ago his ANC's were above 1600 and they just needed to be 750 to be admitted and start the next round of 2-weeks of Ara-C and Cytoxin. Finally labs were back and his nurse came down to talk to us. Well, Brayden was finally back to being textbook. His counts had plummeted to just above 600, which 500 is Neutropenic stage. We were stunned. I knew the day before he wasn't quite as energetic but neither Bryan nor I could believe it. It happened so fast! So at 2:00, we were headed home. We finally got moved to post-op where they were pushing him to wake up, sit up, get dressed, and as soon as he would drink something, they were sending him home. It was too fast. They even had us sign discharge papers. Brayden started throwing everything up. He was so exhausted and felt awful. He couldn't keep anything down. They got him started back on his iv, waited another hour, we tried some water. He kept down 5oz, they took out the iv, and all I could think about was the 4 hour drive ahead of us and how in the world he was going to do on the way home. He was almost dressed when suddenly Bryan grabbed the basin just in time. He threw up all the water. We were thankful when they let him rest and called his Nurse. They warned us he would probably get admitted.
The Dr. on call on his unit came to see him. It was cool because we hadn't met her yet and she works with Brayden's Dr. She walked in and said, "I've heard about the faux-hawk! How are you feeling? Are you hurting?" Brayden did his normal thing saying he was fine. We all laughed when she said, "Yeah, I've also heard how you NEVER complain or ask for medicine so I'll take that with a grain of salt!" WHOA! She had him pegged! It was cool to hear that because they do know him pretty well. She reassured us we would get him up to the floor, get more fluids and continuous anti-nausea meds through the night and start slow. Once he could keep clear fluids down, move up and then hopefully go home the next day. Bryan and I felt so much better. Even though his was an out-patient surgery, with his low counts, it was nice to know professionals would be watching him every hour through the night and we could rest knowing he was in good hands.
Within an hour of finally moving to the floor (about 9:30) we were all worn out. Brayden got comfortable after keeping his regimen meds down with water. He hadn't been able to take them all day. I felt better watching the clock as he kept them down. Bryan and I finally were able to get some rest around 11.
The next day he did great. After literally barely moving through the night, he had slept for nearly 24 hours. His Dr. and Nurse came to see him and loved giving him a hard time about "Did they put chemo in while doing the anesthesia? That was a lot of throwing up!" Basically, this was so much more anesthesia than his previous procedures, he just didn't respond well to it. He got up and moving around pretty quick and we were excited when he announced he was hungry after keeping water and juice down. He scarfed 2 bowls of cheerios (mental work note: there were no Scooters there. Try to get Alt Channels to sell in to the hospital...oh, nevermind). Considering the situation we would have never touched cheerios, but were thankful he was eating. We got to go home around 2 and he did great on the way home.
So the plan is to do some blood work on Friday or Saturday locally and see if his counts are high enough to come in on Monday to again try the next round of chemo. His Nurse had told us before T-Cell patients NEVER complete chemo on time by the schedule because of these things and it's totally normal. Brayden was finally there. We were thankful we had the higher counts because we got to do a lot of things we wouldn't have. This means were back to being in Isolation. This is the lowest his counts have been so far, so we're being careful.
He's been in great spirits. We got to see what the port looked like from his social worker buddy, Stephanie. We laughed when she said, "Do you want to see what your port looks like?" He gasped, "NO!" I said, "No, not yours specifically but what ANOTHER one looks like?" "OH!" he said. She laughed and reassured him we would be looking under his skin at his. It helped, I think for all of us to understand it a little better. It's thicker than what we thought but about the size of a quarter. He's aware of it now that he's home and we're working on him not favoring that arm or shoulder so it heals with him doing his normal things.
He did have a rough time of it yesterday morning. He woke up at 4:30 and got sick. But we were happy to anti-nausea meds took effect quickly. He had a very healthy dinner the night before after we got home from Little Rock. So all in all, he's doing great. By the end of the day yesterday he was running around and playing more.
It hit us Monday when we were being admitted the date was 2 months from his initial diagnosis. I couldn't believe how much things have changed for us in that short amount of time. I'm so proud of how Brayden is doing. I can't imagine how hard this must be for him, but he's persevering. We're celebrating our week-long break without chemo and making plans for the next outing. We're remembering to enjoy it all!
We get to the hospital early and ready to go and Brayden is being his cute self. We had fun playing Hangman on these cute little pads of paper I found to keep in our bag of goodies when we go to clinic. He was very, um, excited to celebrate when he would beat me. We passed the time waiting for pre-op, then talking with the Dr., the nurse, the anesthesiologist, the other nurse, then the Child life Specialist. I love how the hospital is geared toward kids and she came in and helped prepare him for what was going to happen. He seemed good to go...until he heard "Intubation." All the prep work we did didn't include that little tidbit. "What's intubation?" he was quick to ask. My eyes were darting at the team trying to figure out how we missed this part of the process. Thankfully, they would at least wait until he was sedated before putting the breathing tube down his throat and after the surgery was complete, it would be pulled out before he came to. I'll leave out the part about the medical corrections that were made about not taking out his PICC line so his port had time to heal. The hardest part for us was saying goodbye to him after some prayers together and walking to the waiting room. Each week when he's had his spinals or Lumbar Punctures, we at least get to hold his hand and stay with him until he's asleep. This was different.
So we waited...we laughed how the desk nurse said to be back in 20 min. We rushed back and guess what? The surgery hadn't started yet. They let us know when it had started and the Dr. was great to come out and talk to us when it was over. He said he did great. And we waited some more. It was another hour and a half before we could go see him in recovery. He did great, but was quick to show us he had an iv put in. WHAT?!?! So his nurse nodded in understanding. He has a PICC line, a Port and now an IV? Poor guy....Then he got really sick really fast. The surgery went great, but coming out from under the anesthesia he didn't do so well. They gave him a couple more anti-nausea medications and some morphine because he was hurting. It was awful to see him sick. And we waited. The orders were lost to get Brayden's blood drawn that morning and the floor where they were waiting for him to be admitted had his room ready, but there were no orders for him to go to the floor. This went on for an hour and finally Brayden's awesome nurse came down personally to re-write the orders and get the blood drawn. And we waited more. Almost 2 hours of the lab not receiving the blood before his Recovery nurse went to check and the blood never got sent to the labs. Thankfully it hadn't clotted yet and they could still use it for his labs. Then we wait more for the labs to do the tests. Brayden was resting peacefully...Bryan and I? Not so much. If Brayden hadn't been resting peacefully, it would have been a different several hours entirely.
Bryan and I had been so convinced Brayden would be admitted. We knew 4 days ago his ANC's were above 1600 and they just needed to be 750 to be admitted and start the next round of 2-weeks of Ara-C and Cytoxin. Finally labs were back and his nurse came down to talk to us. Well, Brayden was finally back to being textbook. His counts had plummeted to just above 600, which 500 is Neutropenic stage. We were stunned. I knew the day before he wasn't quite as energetic but neither Bryan nor I could believe it. It happened so fast! So at 2:00, we were headed home. We finally got moved to post-op where they were pushing him to wake up, sit up, get dressed, and as soon as he would drink something, they were sending him home. It was too fast. They even had us sign discharge papers. Brayden started throwing everything up. He was so exhausted and felt awful. He couldn't keep anything down. They got him started back on his iv, waited another hour, we tried some water. He kept down 5oz, they took out the iv, and all I could think about was the 4 hour drive ahead of us and how in the world he was going to do on the way home. He was almost dressed when suddenly Bryan grabbed the basin just in time. He threw up all the water. We were thankful when they let him rest and called his Nurse. They warned us he would probably get admitted.
The Dr. on call on his unit came to see him. It was cool because we hadn't met her yet and she works with Brayden's Dr. She walked in and said, "I've heard about the faux-hawk! How are you feeling? Are you hurting?" Brayden did his normal thing saying he was fine. We all laughed when she said, "Yeah, I've also heard how you NEVER complain or ask for medicine so I'll take that with a grain of salt!" WHOA! She had him pegged! It was cool to hear that because they do know him pretty well. She reassured us we would get him up to the floor, get more fluids and continuous anti-nausea meds through the night and start slow. Once he could keep clear fluids down, move up and then hopefully go home the next day. Bryan and I felt so much better. Even though his was an out-patient surgery, with his low counts, it was nice to know professionals would be watching him every hour through the night and we could rest knowing he was in good hands.
Within an hour of finally moving to the floor (about 9:30) we were all worn out. Brayden got comfortable after keeping his regimen meds down with water. He hadn't been able to take them all day. I felt better watching the clock as he kept them down. Bryan and I finally were able to get some rest around 11.
The next day he did great. After literally barely moving through the night, he had slept for nearly 24 hours. His Dr. and Nurse came to see him and loved giving him a hard time about "Did they put chemo in while doing the anesthesia? That was a lot of throwing up!" Basically, this was so much more anesthesia than his previous procedures, he just didn't respond well to it. He got up and moving around pretty quick and we were excited when he announced he was hungry after keeping water and juice down. He scarfed 2 bowls of cheerios (mental work note: there were no Scooters there. Try to get Alt Channels to sell in to the hospital...oh, nevermind). Considering the situation we would have never touched cheerios, but were thankful he was eating. We got to go home around 2 and he did great on the way home.
So the plan is to do some blood work on Friday or Saturday locally and see if his counts are high enough to come in on Monday to again try the next round of chemo. His Nurse had told us before T-Cell patients NEVER complete chemo on time by the schedule because of these things and it's totally normal. Brayden was finally there. We were thankful we had the higher counts because we got to do a lot of things we wouldn't have. This means were back to being in Isolation. This is the lowest his counts have been so far, so we're being careful.
He's been in great spirits. We got to see what the port looked like from his social worker buddy, Stephanie. We laughed when she said, "Do you want to see what your port looks like?" He gasped, "NO!" I said, "No, not yours specifically but what ANOTHER one looks like?" "OH!" he said. She laughed and reassured him we would be looking under his skin at his. It helped, I think for all of us to understand it a little better. It's thicker than what we thought but about the size of a quarter. He's aware of it now that he's home and we're working on him not favoring that arm or shoulder so it heals with him doing his normal things.
He did have a rough time of it yesterday morning. He woke up at 4:30 and got sick. But we were happy to anti-nausea meds took effect quickly. He had a very healthy dinner the night before after we got home from Little Rock. So all in all, he's doing great. By the end of the day yesterday he was running around and playing more.
It hit us Monday when we were being admitted the date was 2 months from his initial diagnosis. I couldn't believe how much things have changed for us in that short amount of time. I'm so proud of how Brayden is doing. I can't imagine how hard this must be for him, but he's persevering. We're celebrating our week-long break without chemo and making plans for the next outing. We're remembering to enjoy it all!
Sunday, June 21, 2009
Escape
Just typing that makes me think of silly Dory on finding Nemo when she ennunciates it when they're in the submarine with the sharks: "ESC-AP-EH!" What? You say I'm watching too much Disney & Pixar? Anyway, we've been so blessed to have some moments of escape lately. I can't remember if I shared we had our first date night...and then another! All within 2 weeks thanks to Nini & Papaw. We loved catching up with our awesome friends Danny & Kathleen. We always have fun when we're with them and it was nice to laugh and hang out again.
Then we had another chance for escape when we diverted on our trip home to see our family. Thursday I had several hours of work time where I escaped the house for the first time in 2 months for a face-to-face meeting with our customers. Yikes...it was the toughest 7 hrs for me to be away from Brayden for that first time. Bryan's been working so much and has only had a couple of weekends off, but working all weekdays we're home. And, his hours have changed so he's literally gone all day while Brayden and I have found our way within a new schedule to maintain work from home and everything else. Being outside our little bubble reminded me there's so much I probably still haven't felt or dealt with. But I was just glad to finally be back home and knowing after 10 txt messages and several phone calls later, Bryan did just fine and Brayden didn't know I was gone. Kidding...
I took the bull by the horns and scheduled a Girls' Night for my sweet friends in our Circle. Not everyone could be there due to crazy summer schedules, recovering kiddos, etc. But Friday night was an escape with my dear friends who mean the world to me. I am so blessed to literally have some of the best women around to support and uplift me and encourage me. And...to make me laugh! It was so great just to get caught up with what's going on in their lives. I realized I'm probably more starved for adult communication than I realized! I tried not to hog the conversation! But it was a great escape to my favorite restaurant and with the coolest waiter I always request. He's more than sweet and takes such good care of us. That escape was bittersweet, even with the glorious 4+ hours just visiting, laughing and catching up at the restaurant. It also came with the realization things in this old environment I was in before now being in it now, just isn't the same.
Our Saturday brought opportunities for more escape. Unfortunately, Bryan had to work. Brayden and I escaped from our eggs, oatmeal or yogurt menu for breakfast and went to blueberry pancakes! YUMM!! That was a real treat (and request) that I was happy to escape with! We escaped some much-needed housework with catching up on our Little House on the Prairie episodes we had DVR'd. THEN...we were more than excited to escape the house and get the wonderful chance to go back to the movies! We knew when Brayden's counts were so great on Wednesday we HAD to see Up! My sister had told me it was literally her favorite movie of all-time. Being a chic, trendy, 21-yr old who doesn't normally pick a Pixar movie as her pick of the week, I knew we needed to check it out. Nini & Papaw joined in the escape with us and we were more at ease with our new procedures each time we go to the movies. I was really nervous at first. Even with this movie being out for several weeks, going to a matinee when I thought everyone else would be at the lake or shopping, and at the lesser-crowded, lesser-known theater in the area, was stunned at how many people were there. We trudged on and were grateful to be in the back row and 3 entire empty rows in front of us. It wasn't that bad once my eyes adjusted. Then, within not even 20 minutes in, I knew why there were so many people there. I seriously almost couldn't make it through the movie. I was grateful to hear Brayden's fits of laughter and near-miss on spewing his bottled sprite we snuck in with us (Dr.'s orders! So that doesn't count in breaking the movie theater rules, right?) He had such a great time escaping and just laughing and experiencing this great movie. It has such an incredible message. Young or old...kids or no kids...you've GOT to see this movie and really listen to to the story and the lesson in it. I remember hearing a trailblazing world-renowned scrapbooker say not to take more time to preserve the memory than what it took to make it. I think of that a lot and hope we are doing more memory-making and not forgetting all the little things that happen in life instead of looking for the BIG things to put in a book. Life is all around us and it's such a precious gift and one that I pray we never squander. I feel guilty sometimes and wonder if we're doing enough to celebrate that gift and give back to others or help others along the way. It was definitely a special afternoon with my sweet boy.
We escaped a healthy dinner for probably the worst take-out choice we could EVER make but it was Brayden's. Don't even ask...I'm too ashamed to tell you where we went through the drive-thru. But I was glad that without Bryan, I still worked it all out with alcohol wiping everything down right after it came in the car and Germ-X'ing and sitting and enjoying the conversation with the best 9-yr-old!
We decided to escape returning home to do chores and instead, reminisce. I took him the houses I lived in when we first moved here when I was 8. Talk about a crazy walk down memory lane. And, PS, I realized areas of our beloved community have gone WAAAAAY downhill. But we made it through without issue and enjoyed a beautiful afternoon in the air conditioning and Brayden realizing his mom used to play basketball, ride bikes, fish, and who knew I used to be that outdoors-ie?
We finished off by escaping our bedtime! We celebrated with ice-cream and a movie at home with lots of blankets in the floor and falling asleep. What a day.
Please pray for Brayden Monday & Tuesday. We have to escape back to Little Rock for port surgery early Monday morning. If his counts are good, we will be admitted and begin back the last 2 weeks of this block of treatment, which we've been warned will be the hardest. This is the medicine Brayden had trouble with last time. And since the reaction to the medicine is cumulative, we know the more in his system over time, the more difficult. They'll monitor his reaction overnite, then we should hopefully get to come home Tuesday afternoon. We'll do chemo locally again Wed & Thurs, repeating Little Rock on the following Monday, then local chemo Tues, Wed, and Thurs. I just pray it's not as bad as it was last time. It was really tough to see him so sick. We're praying his counts stay strong, his body stays healthy, he's able to keep enough fluids and nutrtition down and we can move on! He's a little nervous about the port surgery, but the promise from his Dr. he'll be able to go swimming in 4 weeks or so is hopefully encouragement enough! We keep talking through it to be sure he knows what to expect. But it's definitely a little intimidating for all of us. We know it will be better in the long-run and that's what we're focusing on.
I'm a little sad tonight. Bryan's wedding ring made an escape. I don't think it was intentional. His first ring escaped last summer while in the ocean. Last fall for our big wedding anniversary, we up-graded (or I guess technically replaced) and got him the coolest ring. I'm regretting not taking pictures of our rings together now. He's looked everywhere - literally dumpster diving with the boxes at work - and can't find it. I'm so sad. While it's all in perspective, you know how us girls can be. Losing one wedding band is tough enough. Losing two, you're hoping it's not a cosmic sign. I know, I know. It's not that big of a deal but I know my girls can relate. We're still holding out a fraction of hope that by calling the Pawn Shops we can try to find a size 15 ring I swear not many men could wear. So maybe we'll be able to find it? Here's hoping the ring can find its way back home and not permanently escape.
Then we had another chance for escape when we diverted on our trip home to see our family. Thursday I had several hours of work time where I escaped the house for the first time in 2 months for a face-to-face meeting with our customers. Yikes...it was the toughest 7 hrs for me to be away from Brayden for that first time. Bryan's been working so much and has only had a couple of weekends off, but working all weekdays we're home. And, his hours have changed so he's literally gone all day while Brayden and I have found our way within a new schedule to maintain work from home and everything else. Being outside our little bubble reminded me there's so much I probably still haven't felt or dealt with. But I was just glad to finally be back home and knowing after 10 txt messages and several phone calls later, Bryan did just fine and Brayden didn't know I was gone. Kidding...
I took the bull by the horns and scheduled a Girls' Night for my sweet friends in our Circle. Not everyone could be there due to crazy summer schedules, recovering kiddos, etc. But Friday night was an escape with my dear friends who mean the world to me. I am so blessed to literally have some of the best women around to support and uplift me and encourage me. And...to make me laugh! It was so great just to get caught up with what's going on in their lives. I realized I'm probably more starved for adult communication than I realized! I tried not to hog the conversation! But it was a great escape to my favorite restaurant and with the coolest waiter I always request. He's more than sweet and takes such good care of us. That escape was bittersweet, even with the glorious 4+ hours just visiting, laughing and catching up at the restaurant. It also came with the realization things in this old environment I was in before now being in it now, just isn't the same.
Our Saturday brought opportunities for more escape. Unfortunately, Bryan had to work. Brayden and I escaped from our eggs, oatmeal or yogurt menu for breakfast and went to blueberry pancakes! YUMM!! That was a real treat (and request) that I was happy to escape with! We escaped some much-needed housework with catching up on our Little House on the Prairie episodes we had DVR'd. THEN...we were more than excited to escape the house and get the wonderful chance to go back to the movies! We knew when Brayden's counts were so great on Wednesday we HAD to see Up! My sister had told me it was literally her favorite movie of all-time. Being a chic, trendy, 21-yr old who doesn't normally pick a Pixar movie as her pick of the week, I knew we needed to check it out. Nini & Papaw joined in the escape with us and we were more at ease with our new procedures each time we go to the movies. I was really nervous at first. Even with this movie being out for several weeks, going to a matinee when I thought everyone else would be at the lake or shopping, and at the lesser-crowded, lesser-known theater in the area, was stunned at how many people were there. We trudged on and were grateful to be in the back row and 3 entire empty rows in front of us. It wasn't that bad once my eyes adjusted. Then, within not even 20 minutes in, I knew why there were so many people there. I seriously almost couldn't make it through the movie. I was grateful to hear Brayden's fits of laughter and near-miss on spewing his bottled sprite we snuck in with us (Dr.'s orders! So that doesn't count in breaking the movie theater rules, right?) He had such a great time escaping and just laughing and experiencing this great movie. It has such an incredible message. Young or old...kids or no kids...you've GOT to see this movie and really listen to to the story and the lesson in it. I remember hearing a trailblazing world-renowned scrapbooker say not to take more time to preserve the memory than what it took to make it. I think of that a lot and hope we are doing more memory-making and not forgetting all the little things that happen in life instead of looking for the BIG things to put in a book. Life is all around us and it's such a precious gift and one that I pray we never squander. I feel guilty sometimes and wonder if we're doing enough to celebrate that gift and give back to others or help others along the way. It was definitely a special afternoon with my sweet boy.
We escaped a healthy dinner for probably the worst take-out choice we could EVER make but it was Brayden's. Don't even ask...I'm too ashamed to tell you where we went through the drive-thru. But I was glad that without Bryan, I still worked it all out with alcohol wiping everything down right after it came in the car and Germ-X'ing and sitting and enjoying the conversation with the best 9-yr-old!
We decided to escape returning home to do chores and instead, reminisce. I took him the houses I lived in when we first moved here when I was 8. Talk about a crazy walk down memory lane. And, PS, I realized areas of our beloved community have gone WAAAAAY downhill. But we made it through without issue and enjoyed a beautiful afternoon in the air conditioning and Brayden realizing his mom used to play basketball, ride bikes, fish, and who knew I used to be that outdoors-ie?
We finished off by escaping our bedtime! We celebrated with ice-cream and a movie at home with lots of blankets in the floor and falling asleep. What a day.
Please pray for Brayden Monday & Tuesday. We have to escape back to Little Rock for port surgery early Monday morning. If his counts are good, we will be admitted and begin back the last 2 weeks of this block of treatment, which we've been warned will be the hardest. This is the medicine Brayden had trouble with last time. And since the reaction to the medicine is cumulative, we know the more in his system over time, the more difficult. They'll monitor his reaction overnite, then we should hopefully get to come home Tuesday afternoon. We'll do chemo locally again Wed & Thurs, repeating Little Rock on the following Monday, then local chemo Tues, Wed, and Thurs. I just pray it's not as bad as it was last time. It was really tough to see him so sick. We're praying his counts stay strong, his body stays healthy, he's able to keep enough fluids and nutrtition down and we can move on! He's a little nervous about the port surgery, but the promise from his Dr. he'll be able to go swimming in 4 weeks or so is hopefully encouragement enough! We keep talking through it to be sure he knows what to expect. But it's definitely a little intimidating for all of us. We know it will be better in the long-run and that's what we're focusing on.
I'm a little sad tonight. Bryan's wedding ring made an escape. I don't think it was intentional. His first ring escaped last summer while in the ocean. Last fall for our big wedding anniversary, we up-graded (or I guess technically replaced) and got him the coolest ring. I'm regretting not taking pictures of our rings together now. He's looked everywhere - literally dumpster diving with the boxes at work - and can't find it. I'm so sad. While it's all in perspective, you know how us girls can be. Losing one wedding band is tough enough. Losing two, you're hoping it's not a cosmic sign. I know, I know. It's not that big of a deal but I know my girls can relate. We're still holding out a fraction of hope that by calling the Pawn Shops we can try to find a size 15 ring I swear not many men could wear. So maybe we'll be able to find it? Here's hoping the ring can find its way back home and not permanently escape.
Friday, June 19, 2009
4th Grade Bound!
It's getting more challenging to post frequent updates! I'm taking a quick lunch break to share the great news with everyone. We have had a great week. Brayden's had a couple of challenges with nausea, but nothing as bad as a few weeks ago. This week in Clinic in Little Rock we found out (wow) his counts are still good! His Dr. said he is doing amazing and said Brayden is doing really well. His nurse hadn't planned for him to be able to continue treatment next week thinking his counts would have dropped. We liked hearing her say, "Can he not do anything by the book?!?!" I guess that shows he is doing well! So he had some nausea before we could get his Zofran going in clinic. COE: Dad will not bring coffee into the room again before Brayden has had his iv started. Nice. ANYWAY, his spinal sedation went well again. We're glad this will be his last one for a bit after having them back to back for 7 straight weeks. His sedation nurse is truly the best, so even though we're glad he won't have to have one, we're going to miss seeing her sweet smile each week and how much she adores Brayden and how great she takes care of him. He's uncomfortable sometimes on the drive home after his procedure, but he never complains unless we hit a bump or rough patch in the road. I think by now Bryan has memorized those spots in the road since we've made this drive so many times!!! We've figured out to order his food early (didn't know we could order him food while in clinic til this past week!) and have it ready after he comes out of sedation. It gives his blood sugar a chance to normalize quicker and he did better this week. So well, in fact, we decided to surprise our family. We got to take a trip on the way home to see Grandma Sue & Papa Bob! These are truly the most special people in my life and my Grandma is my soul-twin, I swear. She has been my rock throughout my life and if I can strive to be a fraction of the person she is, I will surpass being the best person I can be. She is truly amazing and loves beyond measure or understanding. She's home to me when I get to be with her or talk to her. So to get to have even just 2 hours with them was so amazing. I think getting to see how good Brayden looks was good for them too. We had fun just sitting out in the yard under the trees I remember when I was Brayden's age. It's more than peaceful to be there. Brayden loved getting to play in the dirt and with the trees, play with the dogs, pet the horse, and mom had fun dishing out the Germ-X but trying to relax and let him have fun being a boy for a few hours. We LOVE Papa's garden (yummy cucumbers!) and hearing Brayden ask him to teach him to shoot a gun (AH!). Brayden is so blessed to have them in his life and be surrounded with their love. Thanks, Grandma for the sherbet and the time to get to see you!!
We were thankful to get to swing through and surprise Bryan's family. They are family to me too and are what I have always dreamed for a family to have the privilege of marrying into. They are the best support for Brayden and I'm so glad they are in his life. Nini Sue, Papa G, Aunt Kimmie all were so happy to see Brayden. He was too busy loving on cousin Kynnli whom he ADORES and can't get enough of! He was so excited to see extended Church family who were there and have been praying for him and sending notes of encouragement and support. It did Brayden so much good to be encouraged and uplifted with all of that love for those 4 hours. Sure, it made getting home extra late, and made mom stress a little with all the people, but we got cleaned up and changed clothes before heading home and bathed in some more Germ-X and so far, so good! We were all thankful for that special time with everyone.
We found out what the future holds for Brayden's treatment plan details. I asked his Dr. that aside from the nausea, Brayden's energy level has been so high and it seems like he's doing really well. He said this block of treatment should be the hardest and we're just praying Brayden's strength continues and that he can get through it and be ready for easier days. He told us because Brayden is so tall for his age and is a bigger kid than the average new 9-yr-old (duh) his treatment protocol and doses are as though they were treating a teenager. I'm still amazed even with that, his body is fighting so hard and he's doing so well. I just pray that continues. We start the Cytoxin and Ara-C (the ugly ones) next Monday and if his counts are good still, will be admitted overnight. He will have surgery on Monday afternoon to have his port put in. They will give it time to heal before using, then his PICC line will be removed. After that, he can swim!! We were so happy to hear that! Maybe if his counts stay high, he can enjoy a little bit of summer...with spf 70! He'll have 1 dose of radiation in 3-4 weeks (again, count dependent). He will have 1/3 of the dose in 8-day fragments. So we will have to spend 11 days in Little Rock during those treatments. We're thankful it's only one time we'll have to do this. Beyond that, barring no secondary infections or concerns with his counts, we keep trudging through the treatments each week.
We were so blessed to have a visit from Brayden's teacher on Monday afternoon. Check out her shirt! A dad of one of Brayden's classmates brought these in and all the kiddos wore them the last day of school to their Awards Assembly! Watching the dvd of the assembly had us all in tears. The support we have received is overwhelming from this school. Mrs. McCall is truly a treasure; the type of teacher you realize still exists with her and other teachers at ACA. She finds it a blessing and a joy to teach and you can see it in her. We were so excited to have her present Brayden with his award and his report card...2 percentage points from being on the A/B Honor Roll! AWESOME!! I'm so proud of how hard he worked after his diagnosis and missing 3 weeks of work in pushing to get caught up and working so hard for all the time it took. He was so happy to hear he gets to go to 4th grade! After talking Mrs. McCall's ear off, Brayden was so pumped about the Team Brayden shirts and I will post what the back of them say and share more about the Awards Assembly when I have more time.
We enjoyed celebrating Brayden's big accomplishment. I baked him a big cake and we were so happy that Nini, Aunt Stephanie, Zach, Caleb & Ally got to celebrate with us that night on Brayden's accomplishments. He certainly deserves to celebrate all that he's persevered and succeeded!!
We're taking it easy and getting ready for Father's Day weekend. Thank you again to all of you for your support. I'll work to post again this weekend with more details, but we're so thankful for all the blessings of Brayden's progress.
We were thankful to get to swing through and surprise Bryan's family. They are family to me too and are what I have always dreamed for a family to have the privilege of marrying into. They are the best support for Brayden and I'm so glad they are in his life. Nini Sue, Papa G, Aunt Kimmie all were so happy to see Brayden. He was too busy loving on cousin Kynnli whom he ADORES and can't get enough of! He was so excited to see extended Church family who were there and have been praying for him and sending notes of encouragement and support. It did Brayden so much good to be encouraged and uplifted with all of that love for those 4 hours. Sure, it made getting home extra late, and made mom stress a little with all the people, but we got cleaned up and changed clothes before heading home and bathed in some more Germ-X and so far, so good! We were all thankful for that special time with everyone.
We found out what the future holds for Brayden's treatment plan details. I asked his Dr. that aside from the nausea, Brayden's energy level has been so high and it seems like he's doing really well. He said this block of treatment should be the hardest and we're just praying Brayden's strength continues and that he can get through it and be ready for easier days. He told us because Brayden is so tall for his age and is a bigger kid than the average new 9-yr-old (duh) his treatment protocol and doses are as though they were treating a teenager. I'm still amazed even with that, his body is fighting so hard and he's doing so well. I just pray that continues. We start the Cytoxin and Ara-C (the ugly ones) next Monday and if his counts are good still, will be admitted overnight. He will have surgery on Monday afternoon to have his port put in. They will give it time to heal before using, then his PICC line will be removed. After that, he can swim!! We were so happy to hear that! Maybe if his counts stay high, he can enjoy a little bit of summer...with spf 70! He'll have 1 dose of radiation in 3-4 weeks (again, count dependent). He will have 1/3 of the dose in 8-day fragments. So we will have to spend 11 days in Little Rock during those treatments. We're thankful it's only one time we'll have to do this. Beyond that, barring no secondary infections or concerns with his counts, we keep trudging through the treatments each week.
We were so blessed to have a visit from Brayden's teacher on Monday afternoon. Check out her shirt! A dad of one of Brayden's classmates brought these in and all the kiddos wore them the last day of school to their Awards Assembly! Watching the dvd of the assembly had us all in tears. The support we have received is overwhelming from this school. Mrs. McCall is truly a treasure; the type of teacher you realize still exists with her and other teachers at ACA. She finds it a blessing and a joy to teach and you can see it in her. We were so excited to have her present Brayden with his award and his report card...2 percentage points from being on the A/B Honor Roll! AWESOME!! I'm so proud of how hard he worked after his diagnosis and missing 3 weeks of work in pushing to get caught up and working so hard for all the time it took. He was so happy to hear he gets to go to 4th grade! After talking Mrs. McCall's ear off, Brayden was so pumped about the Team Brayden shirts and I will post what the back of them say and share more about the Awards Assembly when I have more time.
We enjoyed celebrating Brayden's big accomplishment. I baked him a big cake and we were so happy that Nini, Aunt Stephanie, Zach, Caleb & Ally got to celebrate with us that night on Brayden's accomplishments. He certainly deserves to celebrate all that he's persevered and succeeded!!
We're taking it easy and getting ready for Father's Day weekend. Thank you again to all of you for your support. I'll work to post again this weekend with more details, but we're so thankful for all the blessings of Brayden's progress.
Friday, June 12, 2009
Movie Week!
After a rough time of it last weekend, we were so glad Brayden was feeling better earlier this week. We were still taking it easy and sticking with the bland, carb, starchy stuff. Brayden asked for rice. White rice hasn't existed here for about 2 yrs, so I'm thinking is fiber rich brown rice going to HELP his stomach!?!? That was a funny conversation. White bread? No go either. But we made it through. He did so great. I kept encouraging him and we were planning for the good times. So, once he'd had his first good day of keeping everything down (water first, then bread, then meds...and so on) we wanted to surprise him. We pretended we were at the Drive-in (which he LOVES to go to) in our living room! He'd been reading Charlotte's Web with his class and it had been years since he'd seen the re-make with Dakota Fanning? So we got it all set up and had such a good time getting our minds off of everything! Sure, no popcorn or movie candy, but we had so much fun.
Tuesday afternoon we headed back to Little Rock. We had to be in clinic at 7:30 for another spinal sedation. Have I mentioned Brayden is going to need to go to therapy after this? Each week he asks urgently, "Do I get to have the dizzy medicine? Do I have another spinal?" Mom quickly keeps reminding him it's for medicinal purposes only and if our bodies aren't sick we shouldn't look forward to that medicine and won't need it anymore! It's actually cute that he doesn't have any anxiety about it. Me, on the other hand, am thinking of joining in with the dizzy medicine for these procedures, trips to the grocery store (which thanks to my sweet hubby I haven't had to do in a few weeks) and outings. We're thankful for a night in different surroundings (sometimes) but it's still stressful watching out for germs. Thanks again to the Clorox team for the donations! Anyway, we found out in clinic the next day that we had our favorite sedation nurse. She's awesome and has totally gone above and beyond to take care of Brayden for the 7 spinal sedations he's had. We love her and she thinks the world of Brayden. Last week we met a new sedation Dr. and he is so neat! He stayed and talked to us for 30 min after the procedure was over and Brayden was awake again. He was complimenting Brayden's resiliency. I love that word! It just really gave us a boost to hear him talk about our sweet boy and encouraged us that hopefully we're doing something right in all of this. We heard lots about discipline later from another Dr. Apparently we're doing good after having to correct him for confusing sarcasm with sassiness and pushing it too far with a nurse. We've definitely tried to hold the line with him. Early on, he definitely pushed it with Dad, just to see how far he could get. He realized quickly nothing in that department was changing, which is really hard sometimes. His Dr. told us, "It's my job to help him recover and get him to remission. After he's there, the monster you created for the last 3 years by not disciplining is who YOU have to live with!" So I guess we're doing okay there too.
Anyway, the spinal again went great. Each week they are removing spinal fluid and injecting chemo meds to fight the leukemia cells that were found in his brain the first week. This is part of this treatment regimen. Brayden, again giddy to get the dizzy medicine, inevitably has everyone laughing when we come back in. They've told us it's a kind of truth serum, so mom's tried asking a million questions when he's coming out of it. No dice...I say either he's already incredibly honest or the truth serum doesn't work!
Prior to the spinal, they always draw labs and that's what we're eager to here: how his counts are. Turns out he was REALLY anemic. His sedation Dr. that had only met him the week before said right away he looked pale. I felt bad...I guess I missed it. Seeing him everyday didn't stand out with the change they saw from 7 days ago. This was the day we were excited to hopefully leave clinic before noon. WRONG! 2 units of blood have to be given over 4 hrs PLUS prep meds PLUS post nausea meds for the right home. We were there for a LONG 11 hours that day. BUT - on the bright side, we didn't have to be admitted, he isn't neutropenic, and we didn't have to get blood here which would have required a 2-day hospital stay. They are still stunned he's rocking the faux-hawk with lots of hair still. We definitely lose a lot each day, but it's hanging in there! There's also stunned his ANC counts were above 1000! The typical person's is 10,000 and when Brayden falls below 1,000, it's isolation. Below 500 is strict isolation and neutropenic. So they encouraged us to get him out quick because he only had a few days before his counts dropped off. They've also reassured us many weeks we may not be able to get treatment due to his low counts, so we'll have to miss a week of chemo while he recovers. Another mom encouraged us to celebrate those breaks that you get!!
He was very sick that day in clinic between the sedation (methotrexate), 2 shots in the legs while in sedation (PEG or Asparaginase) and Vincristine iv push. Luckily no oral meds now that we're done with the 2-week chemo regimen for that. So home meds are really down to only 6 on some days, 10 on others. So they pumped him full of meds again. He ate a quick lunch and mom was begging him to drink some fluids. It still amazes me he could not feel well and still act so full of energy! His blood pressure, you can see in this picture, was very low. So we again said a prayer of thanks for the blessing of the blood that a blood donor had given to help Brayden.
After Zofran, sedation meds, Benadryl, Tylenol, Oxycodone AND Phenergan, we were assured he would be OUT all the way home. Really? One thing we've noticed is these meds don't seem to affect him as much as they would me, who would be laying over drooling and totally out of it! He hung in there until it was time to finally go home. We had a VERY long drive hitting a huge front of storms that was extending all across Arkansas. We pulled under an over-pass in Clarksville to wait it out when the rain was so heavy we couldn't see the road. It sounds like it was pretty bad, so I'm glad we hung out there. Brayden was fine and wide awake and we started noticing how much color he was getting back in his little cheeks! We finally made it home around 10, never so happy to be back.
So I'm having this urgency to do what we can do while we can. We decided to surprise Brayden and take him to the movies last night! We used to go fairly often and this was his first outing to somewhere other than Little Rock and the hospital in 7 weeks! We did all the prep we needed to (thanks again to another mom for the great advice!) Luckily there were only 2 small families there not close to us. Nini & Papaw came along with us to see Night at the Museum: Battle of the Smithsonian! Brayden LOVES the National Treasure series and the Night at the Museum movie. We took snacks, Clorox wipes, masks, bottled water for him and a huge blanket to lay over his seat, and tons of Germ-X. It actually went very smoothly and we had a GREAT time escaping for 2 hours! Luckily I didn't need any anti-anxiety medicine too desperately for the outing. (I seriously don't have any but if you have a hook-up, just let me know.) You could tell by all the awesome giggles and smiles Brayden had a GREAT time! We were so happy to go and get to have this treat we may not get to have again for a while.
One more week of another spinal (Yeah, more dizzy medicine!) and it looks like we're done with that for a bit. We'll have to be admitted in 3 weeks and it looks like that's when he'll get his port put in. As well, we'll go back to the yucky meds that made him sick for another two weeks, but after that, we move to the next 2-month block of therapy. There are 6 blocks in Phase 2 and each block lasts 2 months, if there are no interruptions due to low counts or infection. So that's what we're up against. We're so thankful he's staying strong and doing so well! We're praying he stays strong in spirit and continues to be resilient. His attitude, even with the sickness, has been so great. Thanks again for the calls! Thanks also for the comments on the blog. We read them all and go back to old postings to make sure we didn't miss any. We are so thankful for all of you!!!
Tuesday afternoon we headed back to Little Rock. We had to be in clinic at 7:30 for another spinal sedation. Have I mentioned Brayden is going to need to go to therapy after this? Each week he asks urgently, "Do I get to have the dizzy medicine? Do I have another spinal?" Mom quickly keeps reminding him it's for medicinal purposes only and if our bodies aren't sick we shouldn't look forward to that medicine and won't need it anymore! It's actually cute that he doesn't have any anxiety about it. Me, on the other hand, am thinking of joining in with the dizzy medicine for these procedures, trips to the grocery store (which thanks to my sweet hubby I haven't had to do in a few weeks) and outings. We're thankful for a night in different surroundings (sometimes) but it's still stressful watching out for germs. Thanks again to the Clorox team for the donations! Anyway, we found out in clinic the next day that we had our favorite sedation nurse. She's awesome and has totally gone above and beyond to take care of Brayden for the 7 spinal sedations he's had. We love her and she thinks the world of Brayden. Last week we met a new sedation Dr. and he is so neat! He stayed and talked to us for 30 min after the procedure was over and Brayden was awake again. He was complimenting Brayden's resiliency. I love that word! It just really gave us a boost to hear him talk about our sweet boy and encouraged us that hopefully we're doing something right in all of this. We heard lots about discipline later from another Dr. Apparently we're doing good after having to correct him for confusing sarcasm with sassiness and pushing it too far with a nurse. We've definitely tried to hold the line with him. Early on, he definitely pushed it with Dad, just to see how far he could get. He realized quickly nothing in that department was changing, which is really hard sometimes. His Dr. told us, "It's my job to help him recover and get him to remission. After he's there, the monster you created for the last 3 years by not disciplining is who YOU have to live with!" So I guess we're doing okay there too.
Anyway, the spinal again went great. Each week they are removing spinal fluid and injecting chemo meds to fight the leukemia cells that were found in his brain the first week. This is part of this treatment regimen. Brayden, again giddy to get the dizzy medicine, inevitably has everyone laughing when we come back in. They've told us it's a kind of truth serum, so mom's tried asking a million questions when he's coming out of it. No dice...I say either he's already incredibly honest or the truth serum doesn't work!
Prior to the spinal, they always draw labs and that's what we're eager to here: how his counts are. Turns out he was REALLY anemic. His sedation Dr. that had only met him the week before said right away he looked pale. I felt bad...I guess I missed it. Seeing him everyday didn't stand out with the change they saw from 7 days ago. This was the day we were excited to hopefully leave clinic before noon. WRONG! 2 units of blood have to be given over 4 hrs PLUS prep meds PLUS post nausea meds for the right home. We were there for a LONG 11 hours that day. BUT - on the bright side, we didn't have to be admitted, he isn't neutropenic, and we didn't have to get blood here which would have required a 2-day hospital stay. They are still stunned he's rocking the faux-hawk with lots of hair still. We definitely lose a lot each day, but it's hanging in there! There's also stunned his ANC counts were above 1000! The typical person's is 10,000 and when Brayden falls below 1,000, it's isolation. Below 500 is strict isolation and neutropenic. So they encouraged us to get him out quick because he only had a few days before his counts dropped off. They've also reassured us many weeks we may not be able to get treatment due to his low counts, so we'll have to miss a week of chemo while he recovers. Another mom encouraged us to celebrate those breaks that you get!!
He was very sick that day in clinic between the sedation (methotrexate), 2 shots in the legs while in sedation (PEG or Asparaginase) and Vincristine iv push. Luckily no oral meds now that we're done with the 2-week chemo regimen for that. So home meds are really down to only 6 on some days, 10 on others. So they pumped him full of meds again. He ate a quick lunch and mom was begging him to drink some fluids. It still amazes me he could not feel well and still act so full of energy! His blood pressure, you can see in this picture, was very low. So we again said a prayer of thanks for the blessing of the blood that a blood donor had given to help Brayden.
After Zofran, sedation meds, Benadryl, Tylenol, Oxycodone AND Phenergan, we were assured he would be OUT all the way home. Really? One thing we've noticed is these meds don't seem to affect him as much as they would me, who would be laying over drooling and totally out of it! He hung in there until it was time to finally go home. We had a VERY long drive hitting a huge front of storms that was extending all across Arkansas. We pulled under an over-pass in Clarksville to wait it out when the rain was so heavy we couldn't see the road. It sounds like it was pretty bad, so I'm glad we hung out there. Brayden was fine and wide awake and we started noticing how much color he was getting back in his little cheeks! We finally made it home around 10, never so happy to be back.
So I'm having this urgency to do what we can do while we can. We decided to surprise Brayden and take him to the movies last night! We used to go fairly often and this was his first outing to somewhere other than Little Rock and the hospital in 7 weeks! We did all the prep we needed to (thanks again to another mom for the great advice!) Luckily there were only 2 small families there not close to us. Nini & Papaw came along with us to see Night at the Museum: Battle of the Smithsonian! Brayden LOVES the National Treasure series and the Night at the Museum movie. We took snacks, Clorox wipes, masks, bottled water for him and a huge blanket to lay over his seat, and tons of Germ-X. It actually went very smoothly and we had a GREAT time escaping for 2 hours! Luckily I didn't need any anti-anxiety medicine too desperately for the outing. (I seriously don't have any but if you have a hook-up, just let me know.) You could tell by all the awesome giggles and smiles Brayden had a GREAT time! We were so happy to go and get to have this treat we may not get to have again for a while.
One more week of another spinal (Yeah, more dizzy medicine!) and it looks like we're done with that for a bit. We'll have to be admitted in 3 weeks and it looks like that's when he'll get his port put in. As well, we'll go back to the yucky meds that made him sick for another two weeks, but after that, we move to the next 2-month block of therapy. There are 6 blocks in Phase 2 and each block lasts 2 months, if there are no interruptions due to low counts or infection. So that's what we're up against. We're so thankful he's staying strong and doing so well! We're praying he stays strong in spirit and continues to be resilient. His attitude, even with the sickness, has been so great. Thanks again for the calls! Thanks also for the comments on the blog. We read them all and go back to old postings to make sure we didn't miss any. We are so thankful for all of you!!!
Saturday, June 6, 2009
Side Effects, Friends & Stars
Wow. Some things have caught up with us. We've had two ugly nauseating days that have made me thankful today was our last dose of this round of chemo medicine that's ugly. We'll need that two week break. Yes, more meds are constantly on-going and he'll have a new 2-week regimen Wednesday with other meds. But this one was taking its toll. We're thankful no fever! We're also thankful to be able to go to the local clinic both days while getting chemo and get souped up with iv meds. Today we had to go a little farther with 2 more meds, but we finally were able to get some relief for Brayden. Bless his heart, he's had a rough day today. His nurse was awesome and so sweet. He was able to keep a little food down finally last night and we were up again at 5:40 this morning. We started right in with the anti-nausea medication hoping it would help. It didn't take care of all of it. So we were so happy to be able to keep chemo-prep meds down the second time and make it all the way to clinic 40 minutes away just in time for some iv help. I was so thankful being able to be there to help him with every drip of iv medicine and fluids that were filling him back up, preventing dehydration. After 2 hours in clinic and a long drive home, I finally let out a sigh of relief when he was able to drift off for a nap. We were able to get a couple of sips of water in before we moved him to his bed.
It's amazing how thankful you become for downing an entire bottle of water, in sips, but still those 8oz are precious! He was able to keep down some dinner (bread and bland pasta) and it couldn't make me smile bigger to see him eat! I kept checking and breathing prayers of thanks every time his head is cool. We're praying tomorrow is easier for him. It was tough to see him hurting yesterday and today. As a mom, it just screams against every instinct you have to see your baby in pain.
Mouth sores caught up with us last Tuesday. They aren't too bad and we're hoping they stay less severe and go away! He has a nasty mouthwash that probably isn't easing the nausea. It sure doesn't make eating or drinking fun with them. But he's pushing through and rinsing anyway and making it happen!
We were so blessed to see some bloggie friends today at clinic. God is awesome! We will be praying for you & your family! We were also very thankful to get to see some neighbors and good friends Friday evening we've had for longer than Brayden's been here! It did Brayden so good to get to share popsicles and play light sabers and ball with Gracie & Logan. He used up energy he didn't know he had! Who would have thought he was so sick a few hours earlier and just had chemo!!!
Last night was a special night. Earlier in the day when Brayden was at clinic and feeling so awful, he whispered to me he wanted to take our blanket outside, lay in the grass, and look at the stars. Just like we did another time before. YOU BET WE CAN! Anything for my sweet boy. So last night, with a 10-minute rotation cycle update of daylight check from Brayden, we finally ventured into the yard with our blankets and enjoyed the beauty of the starry summer night. Wasn't the moon amazing! We're taking it all in. We're thankful for the moments that take our breath away.
I forced Bryan to make an appearance on the bloggie. Brayden's feeling better finally (12 hrs later) and they're enjoying some Daddy-son time playing with toys from our friends at Mega Blocks given to us while at ACH. I just LOVE this picture! I'll run for now and join in this special family time together. Enjoy this beautiful weekend!!
It's amazing how thankful you become for downing an entire bottle of water, in sips, but still those 8oz are precious! He was able to keep down some dinner (bread and bland pasta) and it couldn't make me smile bigger to see him eat! I kept checking and breathing prayers of thanks every time his head is cool. We're praying tomorrow is easier for him. It was tough to see him hurting yesterday and today. As a mom, it just screams against every instinct you have to see your baby in pain.
Mouth sores caught up with us last Tuesday. They aren't too bad and we're hoping they stay less severe and go away! He has a nasty mouthwash that probably isn't easing the nausea. It sure doesn't make eating or drinking fun with them. But he's pushing through and rinsing anyway and making it happen!
We were so blessed to see some bloggie friends today at clinic. God is awesome! We will be praying for you & your family! We were also very thankful to get to see some neighbors and good friends Friday evening we've had for longer than Brayden's been here! It did Brayden so good to get to share popsicles and play light sabers and ball with Gracie & Logan. He used up energy he didn't know he had! Who would have thought he was so sick a few hours earlier and just had chemo!!!
Last night was a special night. Earlier in the day when Brayden was at clinic and feeling so awful, he whispered to me he wanted to take our blanket outside, lay in the grass, and look at the stars. Just like we did another time before. YOU BET WE CAN! Anything for my sweet boy. So last night, with a 10-minute rotation cycle update of daylight check from Brayden, we finally ventured into the yard with our blankets and enjoyed the beauty of the starry summer night. Wasn't the moon amazing! We're taking it all in. We're thankful for the moments that take our breath away.
I forced Bryan to make an appearance on the bloggie. Brayden's feeling better finally (12 hrs later) and they're enjoying some Daddy-son time playing with toys from our friends at Mega Blocks given to us while at ACH. I just LOVE this picture! I'll run for now and join in this special family time together. Enjoy this beautiful weekend!!
Wednesday, June 3, 2009
Phase 2 Full Throttle
So sorry for the delay in posting an update. I can't believe a week has gone by. We got back home last Thursday and Brayden was thrilled to get to swing by school and say hi before the last day to his teachers and staff that were still there. It was a last-minute decision and one we're so glad we made. It did a world of good to see Brayden soaking up all that love and encouragement. He was sad to miss the last field trips, the cowboy day, the last day of school celebration and awards assembly. But he has so loved all the emails, phone calls, and encouragement his awesome classmates have sent him. Bryan and I used to think no way we'd allow calls from girls at his age! So ya have cancer and mom and dad let the rules slip! He was a busy boy Monday with 5 calls from girls! He was chatting away and loving every minute of it! So thank you guys for the calls! We hope everyone has a good summer and are glad to finally be done with schoolwork and have a break! We'll be working hard to stay on track for 4th grade and kick off 2nd semester back with the group!!!
The test on his kidneys last week in Radiology didn't give any results due to some other circumstances, so we left last Thursday with a strong start to Phase 2 and a heavy dose of chemo. We did treatments locally 2 days after and we're so thankful he's still doing well. We had fun celebrating with some ice-cream and a walk in the park for the first time in FOREVER!! Mom picked up a bug while at ACH last week and came home with a fever of 101. Thank goodness I threw on the mask when I did and we quickly isolated myself :-( It was tough, but we're thankful Brayden didn't get sick and after a weekend of Bryan playing mom AND dad to two of us, we got through it to enjoy Sunday again together as a family.
This last week has really flown by! Brayden had his treatments again today in Little Rock: spinal with chemo, foley, and iv chemo. We're thankful he was able to complete the Radiology test today on his kidneys. The good news is everything looks great and there aren't any issues. I mentioned about a month ago how he was born with something different and we weren't sure if/when it would affect his treatments. The good news is it's nothing to worry about and his body is still responding well.
He's still rockin' the faux-hawk (sp?). We're hoping it will still be around at least for another week or two. All his nurses are having fun teasing him about it and inevitably people are commenting on how cool it is!! He's said more than once he was glad he cut it so no regrets! I think it totally fits him and we'll have to try it again in the future. I'm sure I won't have to remind myself of this when he's 15 since he'll prove it to me with this in writing!
The procedures today went well all in all. He definitely felt more effects today than before and we saw more nausea than before. His counts have definitely dropped in the week since Phase 2 aggressive chemo began and we'll be watching those closely next week. We'll continue chemo locally for the next 3 days and those teams have been great to get to meet and know. Apparently Home Health isn't available in our area anymore for kiddos and so this group is seeing him and we're so thankful.
We're praying he continues to stay healthy and strong. We're praying no secondary infections delay us, although we know they are highly likely as his counts drop from the chemo. We're praying he continues to have good results and the resiliency he's shown continues to grow and strengthen. We're thankful for peace for Brayden and God's love that has enveloped him so strongly since having to face all of this.
We were thankful to see some family two weekends ago for the first time since leaving ACH 4 weeks prior. It was a great boost for all of us, especially Brayden to see his cousins. Brayden's Quote that keeps sticking with me: "I really missed them. It felt good to have them here." Thanks to Zach for all the COOL autographed sports stuff! WOW!! Thanks to the Praise Team for the awesome MP3 player loaded with many of his fav songs he can't stop singing. Thanks to Chris for the cool drumsticks! He knew right away they were from you!! Thanks to everyone for the cards and goodies. Thanks to Ms. Kathi for the AMAZING Hogs gift box of stuff! He's still looking through all the programs page by page!
Thanks to everyone for the cool cards and postcards from your vacations! COOL IDEA! Thanks to my sweet circle of friends for the awesome web cam I'm intimidated to set up but working on. Thanks to Aunt Kimmie for her donation to Locks of Love in Brayden's name. That is an amazing, selfless gift. We love you!!
The test on his kidneys last week in Radiology didn't give any results due to some other circumstances, so we left last Thursday with a strong start to Phase 2 and a heavy dose of chemo. We did treatments locally 2 days after and we're so thankful he's still doing well. We had fun celebrating with some ice-cream and a walk in the park for the first time in FOREVER!! Mom picked up a bug while at ACH last week and came home with a fever of 101. Thank goodness I threw on the mask when I did and we quickly isolated myself :-( It was tough, but we're thankful Brayden didn't get sick and after a weekend of Bryan playing mom AND dad to two of us, we got through it to enjoy Sunday again together as a family.
This last week has really flown by! Brayden had his treatments again today in Little Rock: spinal with chemo, foley, and iv chemo. We're thankful he was able to complete the Radiology test today on his kidneys. The good news is everything looks great and there aren't any issues. I mentioned about a month ago how he was born with something different and we weren't sure if/when it would affect his treatments. The good news is it's nothing to worry about and his body is still responding well.
He's still rockin' the faux-hawk (sp?). We're hoping it will still be around at least for another week or two. All his nurses are having fun teasing him about it and inevitably people are commenting on how cool it is!! He's said more than once he was glad he cut it so no regrets! I think it totally fits him and we'll have to try it again in the future. I'm sure I won't have to remind myself of this when he's 15 since he'll prove it to me with this in writing!
The procedures today went well all in all. He definitely felt more effects today than before and we saw more nausea than before. His counts have definitely dropped in the week since Phase 2 aggressive chemo began and we'll be watching those closely next week. We'll continue chemo locally for the next 3 days and those teams have been great to get to meet and know. Apparently Home Health isn't available in our area anymore for kiddos and so this group is seeing him and we're so thankful.
We're praying he continues to stay healthy and strong. We're praying no secondary infections delay us, although we know they are highly likely as his counts drop from the chemo. We're praying he continues to have good results and the resiliency he's shown continues to grow and strengthen. We're thankful for peace for Brayden and God's love that has enveloped him so strongly since having to face all of this.
We were thankful to see some family two weekends ago for the first time since leaving ACH 4 weeks prior. It was a great boost for all of us, especially Brayden to see his cousins. Brayden's Quote that keeps sticking with me: "I really missed them. It felt good to have them here." Thanks to Zach for all the COOL autographed sports stuff! WOW!! Thanks to the Praise Team for the awesome MP3 player loaded with many of his fav songs he can't stop singing. Thanks to Chris for the cool drumsticks! He knew right away they were from you!! Thanks to everyone for the cards and goodies. Thanks to Ms. Kathi for the AMAZING Hogs gift box of stuff! He's still looking through all the programs page by page!
Thanks to everyone for the cool cards and postcards from your vacations! COOL IDEA! Thanks to my sweet circle of friends for the awesome web cam I'm intimidated to set up but working on. Thanks to Aunt Kimmie for her donation to Locks of Love in Brayden's name. That is an amazing, selfless gift. We love you!!
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