We have just been soaking it all in lately. We’re soaking in our non-traveling weeks to Little Rock. We are so thankful for a wonderful Oncology Clinic with great staff close by. Brayden went Monday to receive this week’s dose of chemo (Methotrexate). He’s still taking his nightly chemo meds at home – each and every night. It’s setting in with him that 2 ½ years of all these pills is a long time. He’s being strong and getting it done. But the first week of Maintenance (1/4) that he had to take steroid pills as well was not fun. There’s an additional antibiotic each week 3 times, twice daily, that’s also not fun for him. As a Mom, I’m trying to teach him how this medicine is working to help him and we keep talking about it, encouraging him about it. He certainly is normal and reaches his frustrations about all of it sometimes. But he continues to amaze me with his positive outlook and his determination.
We travel back to Little Rock for Brayden’s monthly chemo and check-up to Children’s in 2 weeks. Our car is probably so thankful for the break from those weekly miles! We’re watching Brayden’s counts closely, as always. They are always high after steroids so last week was a bit of a shock to see them. This week’s appointment they were back down a range that we were familiar with, but one that will still allow him to not be in isolation. Seeing that drop certainly has reminded me of all that we’ve been warned about. We’re working to do what we can for now and enjoy this freedom.
We’ve kept very busy lately with visiting family, friends, and getting out of the house a bit more. Mom & Dad even got a couple hours away for our first date night in a while! Getting to go to HH (Happy Hour at Sonic) was a big treat for Brayden. He loved getting to eat out as a special treat. I tried not to be too offended at how good he kept saying the food tasted! He’s been loving the warmer weather in the afternoons. He and Dad have been getting some practice golf swings in each day and just getting to be outside more has been such a gift. The daily grind has kept us all busy between school and work activities. Brayden worked so hard over the beginning of Christmas break and got all caught up with school. It’s a good thing - since then school has really picked up! They are studying the 50 states, capitals, where they are on a map, etc. Each week is a quiz. He’s also picked back up in Bible now that 2nd Semester has started and is enjoying that. He was cheering yesterday on the webcam. He was able to participate with the class in their Latin lesson! He shared with me some of the new words he learned and was definitely enjoying that opportunity.
Brayden is continuing to have a lot of pain from Radiation, although it has lessened in the last week. His Neuropathy in his legs has been an issue since his diagnosis with the effects of Chemo that one of the meds has caused for him. Lately, however, he’s really having more trouble walking. We’re hoping now with more exercise it will help increase his stamina and hopefully help strengthen his muscles again. He gets frustrated sometimes that he can’t move as fast and it’s very common to hear his pain when he stands up or moves after being still for a bit. But you rarely hear him complain about it.
It’s so hard for me to fathom that it’s been 9 months since Brayden’s diagnosis. We have seen some awesome things in that time that has brought our family a mixture of joy, sorrow, happiness, pain, but most of all hope. There are hard times but we persevere. We’ve seen so many sad endings for other families fighting, but we’ve seen so many with endurance and faith that help push us to want to do and be better in the midst of this journey and battle for Brayden. Please remember there are so many fighting. We took a quick trip to Hobby Lobby the other night. Brayden’s getting more and more comfortable with the looks and was having a tough time staying still! After being patient with Mom looking at stickers, we went to the section with all the cool models and play sets. Another Mom was there with her son shopping for a school project. She asked if we were as well and we said no. Inside I was begging for her to stop asking and stop looking. Suddenly she said, “What are you battling there, buddy?” While staring at his bald head she was waiting for his response. I wanted to scream. Why ask? He was quick to answer back he was just looking at the ‘army guys.’ Suddenly my pain and flash of anger rising up to protect Brayden melted away when she looked at us with knowing eyes. She told us how good God is to protect our boys. She stepped aside to show us her son, also about Brayden’s age, with his full head of hair. She then shared how for 2 years he waited for his hair to grow back after battling a brain tumor. She acknowledged how they too know Little Rock like ‘the back of my hand.’ I was instantly so grateful for this meeting and for the Mom speaking up. She encouraged Brayden and the boys smiled and waved at one another. Brayden sometimes feels so alone in his battle. So happening upon another boy who has traveled this journey was such an encouragement to both of us. He looked like any other boy, just there working on a school project. Soon that will be Brayden and we’re so thankful for him to see another sign of hope and what will be and that he too can fight through to the other side.
Jones Family
November 2009
Thursday, January 21, 2010
Monday, January 11, 2010
Whirlwind Weekend...And a Miracle
Wow...the days have really flown by lately. We had a BIG surprise and got to take Brayden Friday afternoon for the last hour of school to be with his friends. I was cracking up! He all of a sudden couldn't walk or stay quiet! He ran to his classroom and it was precious seeing all of his classmates' faces light up! He knocked and ran in to his class! His teacher had this look and I okayed everyone that he was alright. They took turns and ran up to give him big hugs. His buddy still did their old secret handshake/body bump! Brayden assured me later he did it with his right shoulder away from his port. Did my eyes bulge that much when he did it that he caught that look of concern in my eye? I had to smile that he thought of that and was so proud he was being careful. I felt so bad for his sweet teacher. Brayden literally had no filter and said EVERYTHING he thought! He marched straight to his desk and started unpacking. I guess right before we left when he asked me if he could take the Cowboys backpack he got this summer, he made sure to pack it up! He was settling in. He said several times, "Whew! This is so much better than the webcam!" I kept trying to sshhhh him but it was in vain. He was just overjoyed to be able to be physically with his class again for the first time in 4th grade.
Our timing was good in that he got to present a Book Report he had done for the class with some of the other children. Then they got to go to the corner for one of their curriculum books and popcorn read. As I sat back and took it all in, my heart was full. He was finally able to interact and feel normal for just a bit. I also mourned the loss of the normal days he'd missed. My heart lurched hearing another buddy mention the infrequent haircuts Brayden would be needing! Brayden took it in stride saying he'd be having more haircuts again soon. Hearing him read, seeing the sweet looks from his friends, realizing he was having this special time was so emotional. There are times when it hits me just how much things have changed and seeing him amongst his peers was another time. But hearing his comments and outbursts and seeing his smile put all of that aside. He truly loved that last hour of the day and is counting the days until he can go back full time.
We knew Brayden could go for a quick visit because his counts were so high. He's been on steroids and will begin another chemo tomorrow. So prior to that dose, we knew we had some time for him to enjoy more freedom. We met my sister, her fiancee, and my nephew at Brayden's old favorite restaurant. He soaked it all in and everything tasted so much better after missing the treat for so long and having the company of family with us to smile and laugh. We ran to Barnes & Noble, one of his old favorite places, and checked out some books. He's still very aware of looks and stares but is doing so much better with it. Sometimes he will get upset and a little mad, and other times he realizes it just comes with the territory.
The next day was finally Christmas with Bryan's side of the family. We met them halfway in Oklahoma and it was so good for him to see his sweet cousin that just turned 2. He can't hold back the kisses and hugs with her and she will giggle and laugh at just about anything he does. It was great to see some awesome family friends come out to see him as well. Seeing his Nana, Papa G, and Aunt Kimmie was so special and getting to catch up with them. The few hours we spent together just wasn't long enough. He had some trash talk going on football and I think put everyone's hearts at peace getting to see him so lively and active and incredibly energetic. We kept hearing how good he looks and how tall he's gotten. 5 feet for 9yrs old - just trying to keep up with his Daddy & Papa G!
We decided to surprise his Papaw David at work on our way home and that was SUCH a nice treat. He always will tell Brayden "UNCLEAN! UNCLEAN!" when he tries to come hug him before he's showered after work. So when Brayden ran over he had this look of panic. I reassured him it was okay and it was so sweet to see him take it all in.
We definitely made the rounds this weekend in trying to see our family. We're not sure how his bone marrow will respond. Speaking of...I have some incredible news. We made it to Little Rock and back last Wednesday for Brayden's treatment. We had to get up at 3am, so it was a very long day that took a few more to recover. Then with all our activities this weekend, I haven't stopped to post an update. So, we learned Brayden's end of treatment date will be in August 2012. Wow...that seems so far away. We got more information about what his Maintenance Treament Roadmap will look like. His awesome Oncologist is having 1 chemo med he is to get once a week done via his port. This is WAAAAAY better than the 20+ pills he would have had to take to get it down. His schedule will be:
- Week 1 - Little Rock for Vincristine Chemo via port, check counts, physical, etc. Once every 3 months, he'll also receive a Spinal Sedation (LP) with Intrathecal Chemo (Methotrexate) to treat the Leukemia cells present in his brain. With Week 1, he'll be on 5 days of Steroid dosage
- Weeks 2, 3 & 4 - He can receive Methotrexate chemo via his port locally
- Daily he is on another chemo pill each night before bed with varying doses throughout the week
This treatment plan will repeat in 12-week cycle/intervals for the 2 1/2 yrs. We had many questions about his counts and how everything will shake out. We were warned it can be another roller coaster ride. With the High-Risk aggressive treatment he's been on, his Oncologist reminded us just how much of an impact this has on his body. That along with the Radiation can take a toll. Even a cold can give him a big setback and cause his body to take a lot of time to recover. His counts may take longer to drop going forward, but they will also take longer to recover. They will adjust his chemo dosage based on his counts and how his body responds. He reassured us many times his counts may be too low to receive chemo and that this is completely normal and part of the response of his system to all he's been through. His bone marrow may be so 'burned out' it may take it a while to bounce back and recover. So, we'll have to be cautious and pay attention each week to see how he's doing and then remember to not plan too far ahead.
Are you ready for a Miracle? We certainly didn't see it coming. His Oncologist was so wonderful in coming to see Brayden and check on his progress even though it wasn't his day to be in Clinic. We're so thankful for him and his awesome nurse. Have I said before how he's always so calm? I remember when he was explaining Brayden's diagnosis, all the risk factors, and his voice was so even and calm. After seeing the Hudson special with Captain Sully on the US Airways flight, it's that same calm. "Brace for Impact." It's amazing. That's when you know they have a gift. So, he calmly explains the treatment roadmap, his chemo for the day, and that he'll also be receiving a Bone Marrow biopsy. Yikes! My breath caught. I didn't see this one coming yet. After 8 months of treatment, you hope and pray it's working. You push your faith and cling to it that his body is responding, the Leukemia cells are staying gone and not returning. But with every time Brayden has a new pain or trouble breathing or a headache, you can't push it out of your mind. It's the first thing I think of and I hate it. I long for the day when that isn't my first thought...wondering if the Leukemia is back or if it's really gone. To suddenly have a microscopic report of how he's responding was something I wanted to run from...the fear grips you again and you aren't sure if you want to know. But Dr. S keeps us so normal and even-keeled and reassures this is just part of the process and we'll have results back soon. Those 20 minutes after we kissed Brayden goodbye and his sedation process began, became one of the hardest of the many, many times we've repeated the same process. All the old, familiar feelings came back while we waited. You try to push it aside and cling to faith and it just resonates and taunts you, unrelenting. We went back to be with Brayden as he was coming out of sedation. My eyes caught the vials with his bone marrow on the tray and his nurse take them away, knowing it wouldn't be long and wondering what was in that vial that our eyes couldn't see. We had other fears and concerns sweep in with some unusual pain Brayden's been having. We were so worried he had a fractured hip or pelvis. So we sent out texts for prayers from our family while we waited for an x-ray. All the steroids he's been on make his bones so soft and breaks are so common for oncology kids. Did I forget to mention how he can't stay still when he's with his cousins and thinks he can jump off of stairs and run around? Maybe the x-ray was a welcome distraction from the looming results and we sent up many thanks that he was okay and everything looked good.
And almost as calmly as it was announced that he would have one, his Bone Marrow results were explained to be clear. CLEAR! No Leukemia blasts were found!!!!!!!!!!! IT WAS BRAYDEN'S MIRACLE! No matter how much you hope and pray it's working, the reassurance that all he's had to endure the last 8 months has worked sent such a calm and peace over us! It was truly miraculous to us. It will still be 3 yrs before his Oncologist will say the word "Remission" to us. But this was the answer we had hoped for and had been afraid to ask about. Thank you, Jesus, for your protection! Thank you for the healing! Thank you for the restoration for Brayden!
Our timing was good in that he got to present a Book Report he had done for the class with some of the other children. Then they got to go to the corner for one of their curriculum books and popcorn read. As I sat back and took it all in, my heart was full. He was finally able to interact and feel normal for just a bit. I also mourned the loss of the normal days he'd missed. My heart lurched hearing another buddy mention the infrequent haircuts Brayden would be needing! Brayden took it in stride saying he'd be having more haircuts again soon. Hearing him read, seeing the sweet looks from his friends, realizing he was having this special time was so emotional. There are times when it hits me just how much things have changed and seeing him amongst his peers was another time. But hearing his comments and outbursts and seeing his smile put all of that aside. He truly loved that last hour of the day and is counting the days until he can go back full time.
We knew Brayden could go for a quick visit because his counts were so high. He's been on steroids and will begin another chemo tomorrow. So prior to that dose, we knew we had some time for him to enjoy more freedom. We met my sister, her fiancee, and my nephew at Brayden's old favorite restaurant. He soaked it all in and everything tasted so much better after missing the treat for so long and having the company of family with us to smile and laugh. We ran to Barnes & Noble, one of his old favorite places, and checked out some books. He's still very aware of looks and stares but is doing so much better with it. Sometimes he will get upset and a little mad, and other times he realizes it just comes with the territory.
The next day was finally Christmas with Bryan's side of the family. We met them halfway in Oklahoma and it was so good for him to see his sweet cousin that just turned 2. He can't hold back the kisses and hugs with her and she will giggle and laugh at just about anything he does. It was great to see some awesome family friends come out to see him as well. Seeing his Nana, Papa G, and Aunt Kimmie was so special and getting to catch up with them. The few hours we spent together just wasn't long enough. He had some trash talk going on football and I think put everyone's hearts at peace getting to see him so lively and active and incredibly energetic. We kept hearing how good he looks and how tall he's gotten. 5 feet for 9yrs old - just trying to keep up with his Daddy & Papa G!
We decided to surprise his Papaw David at work on our way home and that was SUCH a nice treat. He always will tell Brayden "UNCLEAN! UNCLEAN!" when he tries to come hug him before he's showered after work. So when Brayden ran over he had this look of panic. I reassured him it was okay and it was so sweet to see him take it all in.
We definitely made the rounds this weekend in trying to see our family. We're not sure how his bone marrow will respond. Speaking of...I have some incredible news. We made it to Little Rock and back last Wednesday for Brayden's treatment. We had to get up at 3am, so it was a very long day that took a few more to recover. Then with all our activities this weekend, I haven't stopped to post an update. So, we learned Brayden's end of treatment date will be in August 2012. Wow...that seems so far away. We got more information about what his Maintenance Treament Roadmap will look like. His awesome Oncologist is having 1 chemo med he is to get once a week done via his port. This is WAAAAAY better than the 20+ pills he would have had to take to get it down. His schedule will be:
- Week 1 - Little Rock for Vincristine Chemo via port, check counts, physical, etc. Once every 3 months, he'll also receive a Spinal Sedation (LP) with Intrathecal Chemo (Methotrexate) to treat the Leukemia cells present in his brain. With Week 1, he'll be on 5 days of Steroid dosage
- Weeks 2, 3 & 4 - He can receive Methotrexate chemo via his port locally
- Daily he is on another chemo pill each night before bed with varying doses throughout the week
This treatment plan will repeat in 12-week cycle/intervals for the 2 1/2 yrs. We had many questions about his counts and how everything will shake out. We were warned it can be another roller coaster ride. With the High-Risk aggressive treatment he's been on, his Oncologist reminded us just how much of an impact this has on his body. That along with the Radiation can take a toll. Even a cold can give him a big setback and cause his body to take a lot of time to recover. His counts may take longer to drop going forward, but they will also take longer to recover. They will adjust his chemo dosage based on his counts and how his body responds. He reassured us many times his counts may be too low to receive chemo and that this is completely normal and part of the response of his system to all he's been through. His bone marrow may be so 'burned out' it may take it a while to bounce back and recover. So, we'll have to be cautious and pay attention each week to see how he's doing and then remember to not plan too far ahead.
Are you ready for a Miracle? We certainly didn't see it coming. His Oncologist was so wonderful in coming to see Brayden and check on his progress even though it wasn't his day to be in Clinic. We're so thankful for him and his awesome nurse. Have I said before how he's always so calm? I remember when he was explaining Brayden's diagnosis, all the risk factors, and his voice was so even and calm. After seeing the Hudson special with Captain Sully on the US Airways flight, it's that same calm. "Brace for Impact." It's amazing. That's when you know they have a gift. So, he calmly explains the treatment roadmap, his chemo for the day, and that he'll also be receiving a Bone Marrow biopsy. Yikes! My breath caught. I didn't see this one coming yet. After 8 months of treatment, you hope and pray it's working. You push your faith and cling to it that his body is responding, the Leukemia cells are staying gone and not returning. But with every time Brayden has a new pain or trouble breathing or a headache, you can't push it out of your mind. It's the first thing I think of and I hate it. I long for the day when that isn't my first thought...wondering if the Leukemia is back or if it's really gone. To suddenly have a microscopic report of how he's responding was something I wanted to run from...the fear grips you again and you aren't sure if you want to know. But Dr. S keeps us so normal and even-keeled and reassures this is just part of the process and we'll have results back soon. Those 20 minutes after we kissed Brayden goodbye and his sedation process began, became one of the hardest of the many, many times we've repeated the same process. All the old, familiar feelings came back while we waited. You try to push it aside and cling to faith and it just resonates and taunts you, unrelenting. We went back to be with Brayden as he was coming out of sedation. My eyes caught the vials with his bone marrow on the tray and his nurse take them away, knowing it wouldn't be long and wondering what was in that vial that our eyes couldn't see. We had other fears and concerns sweep in with some unusual pain Brayden's been having. We were so worried he had a fractured hip or pelvis. So we sent out texts for prayers from our family while we waited for an x-ray. All the steroids he's been on make his bones so soft and breaks are so common for oncology kids. Did I forget to mention how he can't stay still when he's with his cousins and thinks he can jump off of stairs and run around? Maybe the x-ray was a welcome distraction from the looming results and we sent up many thanks that he was okay and everything looked good.
And almost as calmly as it was announced that he would have one, his Bone Marrow results were explained to be clear. CLEAR! No Leukemia blasts were found!!!!!!!!!!! IT WAS BRAYDEN'S MIRACLE! No matter how much you hope and pray it's working, the reassurance that all he's had to endure the last 8 months has worked sent such a calm and peace over us! It was truly miraculous to us. It will still be 3 yrs before his Oncologist will say the word "Remission" to us. But this was the answer we had hoped for and had been afraid to ask about. Thank you, Jesus, for your protection! Thank you for the healing! Thank you for the restoration for Brayden!
Monday, January 4, 2010
More Pictures as Promised
Wow! 4 posts in 1 day - I'm certainly making up for lost time! I took a couple hours tonight after Brayden went to bed to catch up on some of these pictures we had been wanting to share. He has really changed, especially since Radiation. Here are some of the things we wanted to visually show you and share with his bloggie friends.
Happy New Year 2010!
Brayden managed to stay up past midnight to celebrate with some yummy food, sparkling grape juice from Nini Annette, great friends, fun games, and some yummy food. He had an AWESOME time finally getting to see some friends and Uncle Danny did an incredible job of keeping Brayden laughing all night with only the humor that Uncle Danny can bring!
Christmas Morning
This pic absolutely CRACKS me up! We usually get Hershey a little something and this time Brayden helped her open it. Even when you say the word 'treat' Hershey's ears perk up, she stands taller, and is VERY eager to hear where and when she can get said treat! Brayden's laugh is so infectious and makes me smile! He could hardly keep from laughing while Hershey sat at attention asking politely for this treat Brayden kept talking about! It was a great moment.
The magic and wonder of Christmas morning! Brayden melted our hearts when he told us this was his best Christmas ever because we were all together. I had to write down some of our favorite quotes from that day and the days leading up to it so I wouldn't forget some of the amazing things he said! Our favorite this year was on Christmas Eve when he was wondering if he was on the naughty or nice list this year. Dad asked him which one he thinks he was on. Brayden didn't miss a beat and said, "Since I've been a little of both, Santa needs to have a Maybe list to put me on!" Priceless.
White Christmas
Waking up to a white Christmas in our backyard is SO RARE! I missed how long it's been since the last one. But the magic and miraculous event wasn't lost on us. Although he could only enjoy it from the deck, Brayden wasn't missing a moment to take it all in. It was amazing to see and SO beautiful with the Christmas morning sun shining on it!
After Mom & Dad finally got to bed around midnight, we were so thankful for Brayden's agreement the night before. When trying to plan when to get up and make breakfast, I decided toask him what time he was planning on getting up. I threw out 8:00 and was stunned when he said, "DEAL!" Score one for mom! I could sleep in a bit! So imagine my surprise at 6:30 when I walk into our living room and see this! His gift from Santa had definitely been inspected and was far away from the other gifts. He had read a newspaper article about his Papa G from 15 years ago. He had his school yearbook out in the middle of the floor and a few toys. His anticipation just got the best of him! I reassured him to always wake me up next time and my heart broke a little thinking of him trying to go back to sleep after being up since 1am! But it was so precious to see him sleeping in his robe from Santa in his Christmas PJ's on the love seat while waiting beside the tree!
Reindeer Food
Since Brayden was tiny, we'd always make reindeer food on Christmas Eve to throw out on the lawn so the Reindeer could have a snack too while Santa was having cookies...or this year, candy sushi! I loved how this pic turned out since it was snowing when Brayden bundled up and went out to throw it out on our lawn!
Candy Sushi
I had heard about this neat idea and since Brayden LOVES sushi but hasn't been able to have it in a while, I thought it would be fun to make some! Well, Brayden decided after making it, this would be better to leave Santa the sushi instead of cookies this year. I told him it was completely up to him. I was in the floor hysterically laughing when he added that instead of hot chocolate, as he's always left him, he needed to leave him Miso soup since hot chocolate doesn't go with candy sushi!
Christmas Wrapping
Brayden's wrapping skills officially surpassed Dad's this year...which isn't saying much! Sorry, Dad! Brayden really got into helping to wrap this year and by the time it came for Dad to wrap Mom's presents, he realized just how much more Brayden had learned this year while helping Mom and promptly put him to work! Brayden ate it up that he got to show up his Dad on his skillz!!
Awaiting Christmas
This picture just makes my heart full. Our family finally back together again just in time for the week before Christmas. Brayden and I being away from home the 2 weeks in Little Rock for Radiation were the longest we'd been away since his initial diagnosis and time spent at ACH. It was just too long. So finally being back home and seeing my boys in their sweet robes sipping their Christmas eggnog was just too much to pass up.
Christmas Carolers
Brayden was SO happy to see them! Even though you can't see it, there were smiles abounding under his mask. Hopefully soon he'll be able to join them and hug them again and next year go with them on their Christmas carols to bring joy to others! Thank you to the ACA fam for bringing smiles and songs into our hearts for Christmas!
Happy New Year 2010!
Brayden managed to stay up past midnight to celebrate with some yummy food, sparkling grape juice from Nini Annette, great friends, fun games, and some yummy food. He had an AWESOME time finally getting to see some friends and Uncle Danny did an incredible job of keeping Brayden laughing all night with only the humor that Uncle Danny can bring!
Christmas Morning
This pic absolutely CRACKS me up! We usually get Hershey a little something and this time Brayden helped her open it. Even when you say the word 'treat' Hershey's ears perk up, she stands taller, and is VERY eager to hear where and when she can get said treat! Brayden's laugh is so infectious and makes me smile! He could hardly keep from laughing while Hershey sat at attention asking politely for this treat Brayden kept talking about! It was a great moment.
The magic and wonder of Christmas morning! Brayden melted our hearts when he told us this was his best Christmas ever because we were all together. I had to write down some of our favorite quotes from that day and the days leading up to it so I wouldn't forget some of the amazing things he said! Our favorite this year was on Christmas Eve when he was wondering if he was on the naughty or nice list this year. Dad asked him which one he thinks he was on. Brayden didn't miss a beat and said, "Since I've been a little of both, Santa needs to have a Maybe list to put me on!" Priceless.
White Christmas
Waking up to a white Christmas in our backyard is SO RARE! I missed how long it's been since the last one. But the magic and miraculous event wasn't lost on us. Although he could only enjoy it from the deck, Brayden wasn't missing a moment to take it all in. It was amazing to see and SO beautiful with the Christmas morning sun shining on it!
After Mom & Dad finally got to bed around midnight, we were so thankful for Brayden's agreement the night before. When trying to plan when to get up and make breakfast, I decided toask him what time he was planning on getting up. I threw out 8:00 and was stunned when he said, "DEAL!" Score one for mom! I could sleep in a bit! So imagine my surprise at 6:30 when I walk into our living room and see this! His gift from Santa had definitely been inspected and was far away from the other gifts. He had read a newspaper article about his Papa G from 15 years ago. He had his school yearbook out in the middle of the floor and a few toys. His anticipation just got the best of him! I reassured him to always wake me up next time and my heart broke a little thinking of him trying to go back to sleep after being up since 1am! But it was so precious to see him sleeping in his robe from Santa in his Christmas PJ's on the love seat while waiting beside the tree!
Reindeer Food
Since Brayden was tiny, we'd always make reindeer food on Christmas Eve to throw out on the lawn so the Reindeer could have a snack too while Santa was having cookies...or this year, candy sushi! I loved how this pic turned out since it was snowing when Brayden bundled up and went out to throw it out on our lawn!
Candy Sushi
I had heard about this neat idea and since Brayden LOVES sushi but hasn't been able to have it in a while, I thought it would be fun to make some! Well, Brayden decided after making it, this would be better to leave Santa the sushi instead of cookies this year. I told him it was completely up to him. I was in the floor hysterically laughing when he added that instead of hot chocolate, as he's always left him, he needed to leave him Miso soup since hot chocolate doesn't go with candy sushi!
Christmas Wrapping
Brayden's wrapping skills officially surpassed Dad's this year...which isn't saying much! Sorry, Dad! Brayden really got into helping to wrap this year and by the time it came for Dad to wrap Mom's presents, he realized just how much more Brayden had learned this year while helping Mom and promptly put him to work! Brayden ate it up that he got to show up his Dad on his skillz!!
Awaiting Christmas
This picture just makes my heart full. Our family finally back together again just in time for the week before Christmas. Brayden and I being away from home the 2 weeks in Little Rock for Radiation were the longest we'd been away since his initial diagnosis and time spent at ACH. It was just too long. So finally being back home and seeing my boys in their sweet robes sipping their Christmas eggnog was just too much to pass up.
Christmas Carolers
Brayden was SO happy to see them! Even though you can't see it, there were smiles abounding under his mask. Hopefully soon he'll be able to join them and hug them again and next year go with them on their Christmas carols to bring joy to others! Thank you to the ACA fam for bringing smiles and songs into our hearts for Christmas!
Cowboys Chemo Celebration
- COWBOYS CHEMO CELEBRATION - 12/23/09
I had mentioned how Brayden's local Oncology Nurses take such good care of him! Going forward in his treatment, we'll be there each week and only be in Little Rock once a month. I'm so thankful for such wonderful nurses. We've come to really trust them and rely on them. Sweet Deanna has gone above and beyond. She's reassured me, offered her expertise, shared her personal cell phone with me and checked in on Brayden when she knew how incredibly frightened I was to take him to the local hospital for his blood transfusion. She's confided in me how well she preps and cleans/sterlizes the room before Brayden comes in for blood work or treatments! I guess that was to reassure me I don't have to come in and clean a second time with all the days he's been Neutropenic! She even has learned to wipe down the light pull because she knows how ancy Brayden is and will TOUCH EVERYTHING! She's learned to laugh as Brayden counts for her to access his port and puts up with him wanting to sit up to be accessed instead of laying down. She's SO patient with all of his questions each and every time. We're SO thankful for her! As if that wasn't enough, she decided to do something special for Brayden. To celebrate his finishing all the High-Risk aggressive chemo regimen the last 8 months and finishing Radiation to where he can move onto Maintenance Chemo, she knew what she wanted to do. She went so above and beyond and contacted the Dallas Cowboys to get Brayden an autographed picture of Felix Jones. Her letter moved me to tears as I read how she felt about our Brayden and how she wanted to surprise him with this reward of all that he's endured while still maintaining his smile and sweet personality. She had gone above and beyond to organize this little celebration for him, made him a Cowboys blanket (now he didn't have to fight Dad for his!) and had these two autographed pictures framed for him!
I was so glad Brayden agreed to wear his Cowboys stocking hat just for me. The nurses all loved it and when we came around the corner, they were all cheering and clapping for him! He was so amazed and kept saying lots of "WOW!"s and "COOL!"s. They definitely made his day.
Sweet Katie and Brayden have a special relationship. He instantly loved her sarcasm that he can equally share. She's discovered his love of the Cowboys and he's discovered how to tease her about her beloved Chicago Bears. She knows how much he can't stand Hannah Montana so she's used that against him oh so many times! It's gotten to where I'm sure Brayden has a little crush on Miss Katie. We've finally gotten him to where he'll at least tell her bye again. But his teasing her is relentless and he had gotten so embarrassed to where he would run out the back door when he was done to avoid her teasing back! So precious. I love that even these visits can make him smile and laugh.
These ladies have hid quiet tears while treating Brayden. They've had to give the awful Asparaginase shots in his legs twice now. They've grown to love our sweet boy and I'm so thankful for them!!
I had mentioned how Brayden's local Oncology Nurses take such good care of him! Going forward in his treatment, we'll be there each week and only be in Little Rock once a month. I'm so thankful for such wonderful nurses. We've come to really trust them and rely on them. Sweet Deanna has gone above and beyond. She's reassured me, offered her expertise, shared her personal cell phone with me and checked in on Brayden when she knew how incredibly frightened I was to take him to the local hospital for his blood transfusion. She's confided in me how well she preps and cleans/sterlizes the room before Brayden comes in for blood work or treatments! I guess that was to reassure me I don't have to come in and clean a second time with all the days he's been Neutropenic! She even has learned to wipe down the light pull because she knows how ancy Brayden is and will TOUCH EVERYTHING! She's learned to laugh as Brayden counts for her to access his port and puts up with him wanting to sit up to be accessed instead of laying down. She's SO patient with all of his questions each and every time. We're SO thankful for her! As if that wasn't enough, she decided to do something special for Brayden. To celebrate his finishing all the High-Risk aggressive chemo regimen the last 8 months and finishing Radiation to where he can move onto Maintenance Chemo, she knew what she wanted to do. She went so above and beyond and contacted the Dallas Cowboys to get Brayden an autographed picture of Felix Jones. Her letter moved me to tears as I read how she felt about our Brayden and how she wanted to surprise him with this reward of all that he's endured while still maintaining his smile and sweet personality. She had gone above and beyond to organize this little celebration for him, made him a Cowboys blanket (now he didn't have to fight Dad for his!) and had these two autographed pictures framed for him!
I was so glad Brayden agreed to wear his Cowboys stocking hat just for me. The nurses all loved it and when we came around the corner, they were all cheering and clapping for him! He was so amazed and kept saying lots of "WOW!"s and "COOL!"s. They definitely made his day.
Sweet Katie and Brayden have a special relationship. He instantly loved her sarcasm that he can equally share. She's discovered his love of the Cowboys and he's discovered how to tease her about her beloved Chicago Bears. She knows how much he can't stand Hannah Montana so she's used that against him oh so many times! It's gotten to where I'm sure Brayden has a little crush on Miss Katie. We've finally gotten him to where he'll at least tell her bye again. But his teasing her is relentless and he had gotten so embarrassed to where he would run out the back door when he was done to avoid her teasing back! So precious. I love that even these visits can make him smile and laugh.
These ladies have hid quiet tears while treating Brayden. They've had to give the awful Asparaginase shots in his legs twice now. They've grown to love our sweet boy and I'm so thankful for them!!
Radiation Graduation Day
I had such good intentions of posting this before now. Looking back over these pictures brought back such a surge of emotions. I suddenly realized even our family has yet to see these. I hope it helps explain what Brayden has endured.
As part of Brayden's High-Risk treatment protocol (based on a study) he was to have 8 fragments of Radiation treatment. This was due to the time of diagnosis, his spinal fluid was showing with Level 2 of Leukemia cells present in his brain. We had been dreading this part of his treatment. The side effects are too numerous to mention. The main one being the likelihood of developing secondary cancers. It's so gut-wrenching as a parent and we're thankful for a wise Oncologist and his guidance to help lead us in the path of keeping Brayden the most safe and preserving his health. This wasn't optional for his treatment. In fact, this was the best chance he has of ensuring the Leukemia cells don't hide and come back later in his brain, as used to be the case 20+ years ago when the survival rate for ALL Leukemia was so much lower. Thank goodness for all the research. It's hard however to be thankful for Radiation. Nevertheless, we pressed on.
I've already posted several details in December about Radiation in general. We were so thankful Brayden didn't suffer a lot of the immediate sickness that could have been present. He did well. There certainly were side effects and those haven't dimished yet in the two weeks that have followed. Here are some more details and pictures for you from his treatments December 9-18:
This was the room as it looked when he walked in. They had a place for him where his mask was kept each day. The first time we saw that 6 inch thick door and this room it was a bit overwhelming. Brayden asked many questions. He thought the tv's were so cool! It had his information on them and he thought that was neat. He liked the beautiful picture on the ceiling and I reassured him about the camera on the wall in front of the table that showed him to me while I waited on the other side of the door. He chose to have music playing the last few days of treatment. He was sure to ask the Treatment Team lots of questions about all the machines and they were so patient to explain everything to him to help make him more comfortable.
Each day the nurses would have their masks on so that he could take his off when he came into the room since he was Neutropenic all during treatment. He was glad he didn't have to change into a gown. The table he had to lay on was SO uncomfortable. They had a neck piece sized for him that was ready for him each day we came in. They would also place a lumbar support under his knees and velcro his feet together. He insisted on keeping his shoes on. All of this was in an effort to minimize any movement. I gave him a tip to put his hands under his hips so he would have a place for them. In an effort to be perfectly still, his arms seemed to not know exactly where to go so that seemed to help.
These lasers had to line up with the exact places on his mask. The treatment teams did x-rays twice to confirm the Radiation was being concentrated on the exact right places in his brain.
This is a close-up of Brayden's mask he was eager to show. Once it was made the first day, it held the exact shape of his face, nose, chin. The team had to ensure the placement was exact and precise before it would snap into the table to confine him in place and not allow any movement.
Saying goodbye right before Radiation started once he was all in place. The team would slide his table into position. After we left, everything was controlled by the team on computers. I was amazed at everything they watch on 3 different screens. Then the big machine would rotate. You could hear the clicking sound the Radiation would make coming out of the machine. Then it would rotate again completely to the other side to treat the other side of his brain.
Each day he was complete with another treatment day down, his sweet team had this calendar made up for him and waiting with stickers. It was such a great visual to see how far he was coming and how soon he'd be done. SO THOUGHTFUL!
This sweet smile is what greeted me after his team came in and unsecured everything from the table. He was known to say "Get this thing off!" He was SO happy to finally be done and not have to come back again.
Placing his final sticker was such a tangible way of being finally done!
These sweet girls made his day! I remember the first day him telling me how cute the girlies were!! Sweet Jennifer & Tara were so vibrant and eager to visit with him and help make him more comfortable. He loved chatting it up with them.
His Treatment Team presented him with his Diploma on Friday, December 18th. Along with Jennifer & Tara again is Michael. I was so reassured with their expertise of Brayden and so thankful for the wonderful care they gave him. They seemed to go the extra mile and we are so thankful for them!
As part of Brayden's High-Risk treatment protocol (based on a study) he was to have 8 fragments of Radiation treatment. This was due to the time of diagnosis, his spinal fluid was showing with Level 2 of Leukemia cells present in his brain. We had been dreading this part of his treatment. The side effects are too numerous to mention. The main one being the likelihood of developing secondary cancers. It's so gut-wrenching as a parent and we're thankful for a wise Oncologist and his guidance to help lead us in the path of keeping Brayden the most safe and preserving his health. This wasn't optional for his treatment. In fact, this was the best chance he has of ensuring the Leukemia cells don't hide and come back later in his brain, as used to be the case 20+ years ago when the survival rate for ALL Leukemia was so much lower. Thank goodness for all the research. It's hard however to be thankful for Radiation. Nevertheless, we pressed on.
I've already posted several details in December about Radiation in general. We were so thankful Brayden didn't suffer a lot of the immediate sickness that could have been present. He did well. There certainly were side effects and those haven't dimished yet in the two weeks that have followed. Here are some more details and pictures for you from his treatments December 9-18:
This was the room as it looked when he walked in. They had a place for him where his mask was kept each day. The first time we saw that 6 inch thick door and this room it was a bit overwhelming. Brayden asked many questions. He thought the tv's were so cool! It had his information on them and he thought that was neat. He liked the beautiful picture on the ceiling and I reassured him about the camera on the wall in front of the table that showed him to me while I waited on the other side of the door. He chose to have music playing the last few days of treatment. He was sure to ask the Treatment Team lots of questions about all the machines and they were so patient to explain everything to him to help make him more comfortable.
Each day the nurses would have their masks on so that he could take his off when he came into the room since he was Neutropenic all during treatment. He was glad he didn't have to change into a gown. The table he had to lay on was SO uncomfortable. They had a neck piece sized for him that was ready for him each day we came in. They would also place a lumbar support under his knees and velcro his feet together. He insisted on keeping his shoes on. All of this was in an effort to minimize any movement. I gave him a tip to put his hands under his hips so he would have a place for them. In an effort to be perfectly still, his arms seemed to not know exactly where to go so that seemed to help.
These lasers had to line up with the exact places on his mask. The treatment teams did x-rays twice to confirm the Radiation was being concentrated on the exact right places in his brain.
This is a close-up of Brayden's mask he was eager to show. Once it was made the first day, it held the exact shape of his face, nose, chin. The team had to ensure the placement was exact and precise before it would snap into the table to confine him in place and not allow any movement.
Saying goodbye right before Radiation started once he was all in place. The team would slide his table into position. After we left, everything was controlled by the team on computers. I was amazed at everything they watch on 3 different screens. Then the big machine would rotate. You could hear the clicking sound the Radiation would make coming out of the machine. Then it would rotate again completely to the other side to treat the other side of his brain.
Each day he was complete with another treatment day down, his sweet team had this calendar made up for him and waiting with stickers. It was such a great visual to see how far he was coming and how soon he'd be done. SO THOUGHTFUL!
This sweet smile is what greeted me after his team came in and unsecured everything from the table. He was known to say "Get this thing off!" He was SO happy to finally be done and not have to come back again.
Placing his final sticker was such a tangible way of being finally done!
These sweet girls made his day! I remember the first day him telling me how cute the girlies were!! Sweet Jennifer & Tara were so vibrant and eager to visit with him and help make him more comfortable. He loved chatting it up with them.
His Treatment Team presented him with his Diploma on Friday, December 18th. Along with Jennifer & Tara again is Michael. I was so reassured with their expertise of Brayden and so thankful for the wonderful care they gave him. They seemed to go the extra mile and we are so thankful for them!
Hiding Out
It’s been so good to be at home together. We apologize for not keeping the blog more updated. It’s fallen on our priority list lately with just spending time together. Last Monday’s plans to Little Rock were cancelled late Sunday night after I had already posted the last update. Brayden’s counts were just on the border of qualifying to start the Maintenance phase of chemo. Since there was another indicator that they may not be on the rise, his Nurse thought it best to give him one more week to recover, so we had another week at home last week. We were happy to learn Thursday Brayden’s counts had climbed a bit more. Saturday, for the first time in 3 months, we got to be with some of our family. It was our family Christmas with them and so nice to see everyone. It warmed up my heart to see Brayden hug his cousins and to see all their little faces light up to be reunited. Being around family again was such a good feeling. It was hard to sit back and relax and not be over-protective of Brayden. He ended up playing way too hard, hurt his back and got an ugly scratch on his cute, bald head. Every day is another test to see if I can let go and let God take care of him and putting him in His hands and not mine. As a Mom, I don’t know how long – if ever – we fully learn that lesson. Nevertheless, the smiles abounded and our hearts were filled up again with love that surrounded us. It was nice to feel missed and I know it was SO good for Brayden to finally see everyone.
It’s incredibly hard to realize and fathom it’s 2010. Brayden is making lists of things he is so eager to do...normal things he’s missed out on now for far too long over the last 8 months since his diagnosis. My mind can’t comprehend how much has changed. We’ve had a lot of good days, but the reminders are always there. I woke up the other morning and my heart lurched. When he’s sleeping, those bright eyes aren’t shining...and I can’t deny that he’s enduring the effects of cancer: his sweet bald head, his pale skin, his eyebrows gone, and the dark circles that form around his eyes. Ugh...how did we get here? Then, later, when his excitement is there about Christmas and snow and all things 9-yr-old boys get excited about and those big blue eyes are shining, I focus back on the present and remember what a gift Brayden is to us and pray we soak it all in. He’s starting to grasp how long 2 ½ more years really is...and it’s gut-wrenching to explain it and hear the sadness in his voice when he talks about it. So I guess these last two weeks I’ve been hiding out a bit from sharing my feelings on here. It’s been incredibly wonderful and yet so hard at the same time. We’ve missed a lot of special traditions started just when Brayden was 8 months old his first Christmas. It’s been sad to look at the ornaments and special reminders of things in past years. He was so scared and so hesitant to see our family because of how different he looks. I guess these are challenges all families struck with a diagnosis go through. It’s just been so tough to have these conversations and have more realization from Brayden of all that he’s internalizing. I’m glad he’s talking about it but what my heart wouldn’t give that he wouldn’t have those feelings in the first place or to take it all from him.
For now, we’re continuing to focus on the good things. We’re trying to reassure Brayden with all the increased pills he’ll be taking at home for the next 2 ½ years, at least that means less frequent trips to Little Rock. It means no more overnight stays in the hospital for the High-Risk chemo. He’ll get more time at home and hopefully a chance to see his friends at school soon. Hopefully he’ll get to start knocking things off his list of wishes to do and feel a little more carefree.
Please join us in praying for relief for Brayden. He’s been in a lot of pain over the last week in his lower back, his ribs. He has a lot of trouble walking at times. We’re also praying for safe travels to Little Rock Wednesday and that the weather will hold out for us to make it there and back. We’re praying his bone marrow is able to kick in and keep new, baby, healthy cells growing. We pray for peace for Brayden's heart and his resiliency he's exhibited to keep propelling him forward. We pray for happier times for Brayden to renew his sweet spirit so he can continue this journey.
It’s incredibly hard to realize and fathom it’s 2010. Brayden is making lists of things he is so eager to do...normal things he’s missed out on now for far too long over the last 8 months since his diagnosis. My mind can’t comprehend how much has changed. We’ve had a lot of good days, but the reminders are always there. I woke up the other morning and my heart lurched. When he’s sleeping, those bright eyes aren’t shining...and I can’t deny that he’s enduring the effects of cancer: his sweet bald head, his pale skin, his eyebrows gone, and the dark circles that form around his eyes. Ugh...how did we get here? Then, later, when his excitement is there about Christmas and snow and all things 9-yr-old boys get excited about and those big blue eyes are shining, I focus back on the present and remember what a gift Brayden is to us and pray we soak it all in. He’s starting to grasp how long 2 ½ more years really is...and it’s gut-wrenching to explain it and hear the sadness in his voice when he talks about it. So I guess these last two weeks I’ve been hiding out a bit from sharing my feelings on here. It’s been incredibly wonderful and yet so hard at the same time. We’ve missed a lot of special traditions started just when Brayden was 8 months old his first Christmas. It’s been sad to look at the ornaments and special reminders of things in past years. He was so scared and so hesitant to see our family because of how different he looks. I guess these are challenges all families struck with a diagnosis go through. It’s just been so tough to have these conversations and have more realization from Brayden of all that he’s internalizing. I’m glad he’s talking about it but what my heart wouldn’t give that he wouldn’t have those feelings in the first place or to take it all from him.
For now, we’re continuing to focus on the good things. We’re trying to reassure Brayden with all the increased pills he’ll be taking at home for the next 2 ½ years, at least that means less frequent trips to Little Rock. It means no more overnight stays in the hospital for the High-Risk chemo. He’ll get more time at home and hopefully a chance to see his friends at school soon. Hopefully he’ll get to start knocking things off his list of wishes to do and feel a little more carefree.
Please join us in praying for relief for Brayden. He’s been in a lot of pain over the last week in his lower back, his ribs. He has a lot of trouble walking at times. We’re also praying for safe travels to Little Rock Wednesday and that the weather will hold out for us to make it there and back. We’re praying his bone marrow is able to kick in and keep new, baby, healthy cells growing. We pray for peace for Brayden's heart and his resiliency he's exhibited to keep propelling him forward. We pray for happier times for Brayden to renew his sweet spirit so he can continue this journey.
Subscribe to:
Posts (Atom)
