Wow...I'm working on writing a speech for Brayden being chosen as the Champion Child for this year's Will Golf 4 Kids and Color of Hope Gala for the Arkansas Children's Hospital fundraiser. Tommorrow is not only the big day for the event - it begins the 1-year countdown until Brayden is done with chemo. I can't wrap my brain around that. Then - when you consider how far we've come, it's more than I can fathom. In those early days, it hurt too much to see this far. We could't look beyond the next hours or test results or day. To say we're thankful and so proud of Brayden is just the tip of the iceberg.
He's a bit intimidated by the Gala tomorrow. We all are...so we try to use this for good and help the other kids, help the hospital, and focus on the celebration of all he's endured and just how tremendously far he's come. It's easy to get sidetracked by all the pomp and circumstance of it. But at the heart of it all is a little boy who's faced more adversity than my heart can handle and has a daily fight with Leukemia and keeps on going, keeps on smiling, and continues to bring my life so much joy than I ever knew possible.
His chemo has been going well. His counts have been good. We've had a few concerns here and there with his ANC being almost too low then his hemoglobin taking a dip making me worried about needing a possble transfusion. But all in all, he continues to be so resilient and persevere.
Please say a prayer for us tomorrow with all the events that we remember to enjoy one another and breathe in all the moments. It will be an emotional time for us as we watch the hospital show Brayden's video and documenting his story and journey since diagnosis. We just want to do what we can to help! The fundraising money for the event will go for an Infusion room at the new Oncology wing at ACH. You can read more about it here: Color of Hope Champion Child, Brayden Jones, Patient Story
Jones Family
November 2009
Thursday, August 11, 2011
Sunday, June 19, 2011
Brayden & Relay for Life
We'll post more pictures and details later. Such an emotional night for us. Brayden absolutely loved it and didn't want to go home or stop walking until all the luminaries were lit at dark. Even then, he wanted to keep walking and was so exhausted by the time we left at 11. Thank you to all the volunteers and workers who stayed the 12 hours thru the night til 7 am the next morning to help raise funds for the American Cancer Society.
Brayden saw this the next morning on the front page of the Benton County Daily Record and ran squealing to show me!
Relay for Life - Benton Co Daily Record Front Page
Brayden saw this the next morning on the front page of the Benton County Daily Record and ran squealing to show me!
Relay for Life - Benton Co Daily Record Front Page
My baby's on the radio!!
The Jones Fam were total hamms this morning. Since we posted on here about Brayden being chosen Champion Child for the Will Golf 4 Kids fundraiser for Arkansas Children's Hospital, things have really pushed into high gear lately. Brayden absolutely loved meeting Jennifer Irwin and she was so sweet and gracious to us.
After doing the radio interview with her & Mike from the committee, Brayden has been anxiously awaiting the air date that happened this morning. We set our alarms & woke up early and tried to figure out how to record it to share here for everyone. Like his momma, he's too critical of himself! We were both squirming in our seats and there were a few hitting our head moments of embarassment, but he did SO GREAT! That was all done in 1 take, y'all!! No editing! So proud of Brayden. We didn't rehearse or practice - everything was from his heart since we had no idea what to expect. More than anything, we hope this helps bring awareness. Even if you can't golf or go to the Gala, you can still support ACH and all its efforts at www.willgolf4kids.org.
AWESOME JOB, BRAYDEN!!! I recorded it and tried to post it here, but it appears the file is too big. We'll keep trying. Now...on to Father's Day celebrations!
After doing the radio interview with her & Mike from the committee, Brayden has been anxiously awaiting the air date that happened this morning. We set our alarms & woke up early and tried to figure out how to record it to share here for everyone. Like his momma, he's too critical of himself! We were both squirming in our seats and there were a few hitting our head moments of embarassment, but he did SO GREAT! That was all done in 1 take, y'all!! No editing! So proud of Brayden. We didn't rehearse or practice - everything was from his heart since we had no idea what to expect. More than anything, we hope this helps bring awareness. Even if you can't golf or go to the Gala, you can still support ACH and all its efforts at www.willgolf4kids.org.
AWESOME JOB, BRAYDEN!!! I recorded it and tried to post it here, but it appears the file is too big. We'll keep trying. Now...on to Father's Day celebrations!
Monday, June 13, 2011
Brayden's Relay for Life & Survivor Dinner
Friday was our first time to participate in the American Cancer Society's Relay for Life events for Rogers/Bentonville. We have signed up Brayden as a survivor and he will do a special walk this Friday at Pinnacle. Bryan is walking on a team for his work in honor and support of Brayden. If you'd like to support his walk and donate to the American Cancer Society, you can click on his page here.
Friday's dinner kicked off with such a neat God hug to us. If the timing hadn't worked just right, we'd missed it. As we were walking in, a sweet teacher who used to teach at Brayden's school was walking over to her window to close it and just happened to see Brayden! She ran out to greet us and it was SO wonderful to see her! We'd missed her this past year and it was so awesome getting to catch up with her and her to see how great Brayden's been doing. She prayed with us and was just such an encouragement to us.
On to the dinner, we felt so uncomfortable and uncertain. They did a lovely job with some sweet volunteers. Finally we saw some familiar faces of another Mom who'd reached out to us in the early days of diagnosis with her 11-yr-old son who'd battled the same diagnosis with relapse & transplant procedures & 6+ yrs of treatment since he was 3. We were SO grateful they were there and sat with us. The boys were adorable as they were digging through their special goody bag you could tell had been hand-packed for the 3 young men who were survivors attending that night. There was another young man of the same age who was a special speaker for that night telling of his Lymphoma diagnosis and his 3-month treatment. After he was finished, the boys ran to the back to meet him in person and share stories. Once this young man heard of Brayden's treatment plan and our sweet friend who was there too going through his own long journey since age 3, he was visibly surprised with imagining the duration of the treatment. I loved getting to see the 3 of them together and this is what I had hoped - that Brayden would be reminded he isn't in this alone and there are others going through the same struggles and others who have come through to the other side!!
A special moment in the night was when Brayden received his Survivor pin, celebrating 2 more birthday's since diagnosis. Brayden also gave me a special Caregiver pin. It was a neat moment and one that seemed so surreal. Brayden was the newest diagnosed male patient in attendance that night.
This Friday we will participate in the Relay for Life walk. Please feel free to come out and join us. Brayden will walk in the Survivor Lap at 7pm, then there will be a Caregiver walk, then we walk for a cure in thanks to the donations that have come in. We're hoping it's not too hot and we have good weather!! It's a great way to honor those who have endured their battle against cancer, honor those who have lost their fight, and work to ensure all those diagnosed have the opportunity to celebrate more birthdays!
Friday's dinner kicked off with such a neat God hug to us. If the timing hadn't worked just right, we'd missed it. As we were walking in, a sweet teacher who used to teach at Brayden's school was walking over to her window to close it and just happened to see Brayden! She ran out to greet us and it was SO wonderful to see her! We'd missed her this past year and it was so awesome getting to catch up with her and her to see how great Brayden's been doing. She prayed with us and was just such an encouragement to us.
On to the dinner, we felt so uncomfortable and uncertain. They did a lovely job with some sweet volunteers. Finally we saw some familiar faces of another Mom who'd reached out to us in the early days of diagnosis with her 11-yr-old son who'd battled the same diagnosis with relapse & transplant procedures & 6+ yrs of treatment since he was 3. We were SO grateful they were there and sat with us. The boys were adorable as they were digging through their special goody bag you could tell had been hand-packed for the 3 young men who were survivors attending that night. There was another young man of the same age who was a special speaker for that night telling of his Lymphoma diagnosis and his 3-month treatment. After he was finished, the boys ran to the back to meet him in person and share stories. Once this young man heard of Brayden's treatment plan and our sweet friend who was there too going through his own long journey since age 3, he was visibly surprised with imagining the duration of the treatment. I loved getting to see the 3 of them together and this is what I had hoped - that Brayden would be reminded he isn't in this alone and there are others going through the same struggles and others who have come through to the other side!!
A special moment in the night was when Brayden received his Survivor pin, celebrating 2 more birthday's since diagnosis. Brayden also gave me a special Caregiver pin. It was a neat moment and one that seemed so surreal. Brayden was the newest diagnosed male patient in attendance that night.
This Friday we will participate in the Relay for Life walk. Please feel free to come out and join us. Brayden will walk in the Survivor Lap at 7pm, then there will be a Caregiver walk, then we walk for a cure in thanks to the donations that have come in. We're hoping it's not too hot and we have good weather!! It's a great way to honor those who have endured their battle against cancer, honor those who have lost their fight, and work to ensure all those diagnosed have the opportunity to celebrate more birthdays!
Friday, June 10, 2011
The Power Team!
Brayden's 5th grade teacher surprised him with a big event at school!! She clued me & Dad in on the big surprise and even up to the day of the event, he had no idea what was in store for him. His adorable classmates wore their "Team Brayden" shirts they had originated a couple years ago. Once they arrived in the gym for the special presentation, Brayden was honored & called out for his courageous battle since diagnosis with special Power Team senior member, John Kopta. Brayden was made an honorary Power Team Member!! He was blown away and so proud!
The things they did literally left the kids in awe. John has been with the Power Team over 20 years and is still amazing audiences with his incredible strength and faith in God. John & Big Country started in with some amazing accomplishments: blowing up a hot water bottle until it pops, lifting two girls on a bar and swinging them around in circles… then he bends the bar with it in his teeth! Then John tears a Tulsa phone book in half. Big Country breaks a Louisville slugger bat in half! They were so gracious to autograph it and give it to Brayden! Big Country also popped open a soda can with his hands only…all over the kids!
We're so thankful for their witness & testimony as well as their encouragement of Brayden's fight with Leukemia. What an honor for him and such an awesome experience!! A very heartfelt thank you to John & Big Country & the Power Team for your awesome gift and service and for blessing Brayden with such a memorable experience!
The things they did literally left the kids in awe. John has been with the Power Team over 20 years and is still amazing audiences with his incredible strength and faith in God. John & Big Country started in with some amazing accomplishments: blowing up a hot water bottle until it pops, lifting two girls on a bar and swinging them around in circles… then he bends the bar with it in his teeth! Then John tears a Tulsa phone book in half. Big Country breaks a Louisville slugger bat in half! They were so gracious to autograph it and give it to Brayden! Big Country also popped open a soda can with his hands only…all over the kids!
We're so thankful for their witness & testimony as well as their encouragement of Brayden's fight with Leukemia. What an honor for him and such an awesome experience!! A very heartfelt thank you to John & Big Country & the Power Team for your awesome gift and service and for blessing Brayden with such a memorable experience!
Thursday, June 9, 2011
Radio Rockstar Brayden
We posted on here and learned a couple of months ago that Brayden had been chosen to be the Champion Child for the Will Golf 4 Kids annual fundraiser for Arkansas Children's Hospital. One of the things he got to do was visit a local radio show and be interviewed by Jennifer Irwin! He was SO excited! Walking into the control room he immediately took the seat next to Jennifer and was eating up the opportunity! Jennifer was lovely and so wonderful to us. Mike Sewell, the chair for the Will Golf 4 Kids golf tournament joined us as well to help raise awareness about the charity and its events.
We were SO glad to hear the interview Jennifer conducted with us wouldn't be live. The edited version (whew!) will air Sunday morning, June 19th at 7am on Clear Channel stations. Or, you can listen live on 107.9 link here! Just click "Listen Live" box.
Great job, Brayden!! You really were a Radio Rockstar!
We were SO glad to hear the interview Jennifer conducted with us wouldn't be live. The edited version (whew!) will air Sunday morning, June 19th at 7am on Clear Channel stations. Or, you can listen live on 107.9 link here! Just click "Listen Live" box.
Great job, Brayden!! You really were a Radio Rockstar!
Wednesday, June 8, 2011
Relay for Life for Brayden
Wow - we really miss all of you! Brayden and I have talked frequently over the last several weeks about the blog. Things have taken priority that I would prefer didn't, but such it goes sometimes. Brayden is doing really well. He's growing so fast that I've been really nervous (quietly so) as to not alarm him. His counts haven't been able to be in the 'safe' range really since Christmas. It's been scary week to week. I try not to let the fear take over but I'm still human and it's a hard battle to fight with myself each week. Being a mom still takes over our hearts and heads as we want to protect our babies - or young men!
Brayden's now 5'4" and has grown 4" taller since January's check-up. Every 6 weeks is the most frequently his chemo dosages can be increased. So it's been an increase, a waiting game, watching counts & blood results each Monday, then seeing what happens for next week. Each Monday it's the same cycle. I watch him super closely to try to read what's happening under the surface. It's impossible to predict as I've continued to learn the last 5 months. Each 6 week cycle after 1 chemo med is increased & his counts don't fall within range, then next chemo med is increased as an alternate, then it's the wait and see game again. All the while, I wonder what is happening on the inside. Will his liver function uphold the increased strain of the new dosage? Are his higher counts because he's (heaven forbid) relapsing? Your mind goes crazy. It's hard to imagine but you begin to prefer the days of isolation because at least then, you knew the chemo was working. I know I'm losing it when I have those thoughts. It's an insane cycle no one should have to endure or face.
All in all, he had a great visit at Children's last week. He had a spinal sedation with intrathecal chemo to treat those cells present in his brain. With all the increases to keep up with this big growth he's been having, he's up to 47 pills a day for this past week. Insanity for sure. He's pushing through it all like a trooper. The days following the spinal are never easy for him. But he persevered. His nurse has been so supportive in encouraging me he's fine and he's just a growing boy! We're hopeful things will settle back in to a normal pattern again and his counts will resume.
School has ended and he's excited about summer. 5th grade was such a blessing for him since it's the first time since 2nd grade he's been able to start and end the school year in completion with his class without treatment or isolation or diagnosis interfering. I can't believe summer is approaching...or should I say here! We've got a lot of fun and exciting things to share over the coming days that are in the works.
One of the things I wanted to share is that I signed Brayden up as a surivor for Relay for Life this year through the American Cancer Society. There's a special walk next week. We've not participated before and aren't sure what to expect. We heard another 11-year-old boy will be speaking and I hoped it would encourage Brayden to see that he's not alone. He's come so far in the past 26 months and I hope the walk will help him to feel that support and encouragement. Seeing visually that he's not alone in his battle I think will also be good for him. Feel free to check out his page at:
Brayden's Relay for Life Page
Stay tuned! I promise to post more and can't wait to share about his recent antics on the radio!!!
Brayden's now 5'4" and has grown 4" taller since January's check-up. Every 6 weeks is the most frequently his chemo dosages can be increased. So it's been an increase, a waiting game, watching counts & blood results each Monday, then seeing what happens for next week. Each Monday it's the same cycle. I watch him super closely to try to read what's happening under the surface. It's impossible to predict as I've continued to learn the last 5 months. Each 6 week cycle after 1 chemo med is increased & his counts don't fall within range, then next chemo med is increased as an alternate, then it's the wait and see game again. All the while, I wonder what is happening on the inside. Will his liver function uphold the increased strain of the new dosage? Are his higher counts because he's (heaven forbid) relapsing? Your mind goes crazy. It's hard to imagine but you begin to prefer the days of isolation because at least then, you knew the chemo was working. I know I'm losing it when I have those thoughts. It's an insane cycle no one should have to endure or face.
All in all, he had a great visit at Children's last week. He had a spinal sedation with intrathecal chemo to treat those cells present in his brain. With all the increases to keep up with this big growth he's been having, he's up to 47 pills a day for this past week. Insanity for sure. He's pushing through it all like a trooper. The days following the spinal are never easy for him. But he persevered. His nurse has been so supportive in encouraging me he's fine and he's just a growing boy! We're hopeful things will settle back in to a normal pattern again and his counts will resume.
School has ended and he's excited about summer. 5th grade was such a blessing for him since it's the first time since 2nd grade he's been able to start and end the school year in completion with his class without treatment or isolation or diagnosis interfering. I can't believe summer is approaching...or should I say here! We've got a lot of fun and exciting things to share over the coming days that are in the works.
One of the things I wanted to share is that I signed Brayden up as a surivor for Relay for Life this year through the American Cancer Society. There's a special walk next week. We've not participated before and aren't sure what to expect. We heard another 11-year-old boy will be speaking and I hoped it would encourage Brayden to see that he's not alone. He's come so far in the past 26 months and I hope the walk will help him to feel that support and encouragement. Seeing visually that he's not alone in his battle I think will also be good for him. Feel free to check out his page at:
Brayden's Relay for Life Page
Stay tuned! I promise to post more and can't wait to share about his recent antics on the radio!!!
Wednesday, March 30, 2011
Birthday Celebration Continued
Brayden's birthday festivities continued with his trip to the local oncology clinic for chemo after school. His sweet Nurses surprised him with a procedure room all decorated up with balloons, a cake and candles & a gift! Even while having his weekly chemo, the birthday festivities were a great distraction. He loved the cake and chowed down to celebrate. The gift they so sweetly got for him was a new DS game he's been talking about for days! He even replayed the commercial with the game on it several times for me. It's all he talked about! So when he opened it, he was SO happy and SO surprised! Thank you to each one of you for all you did to make Brayden's birthday special.
Brayden's counts have been a little higher than we'd like. Even after increasing his chemo, I've been wondering why they haven't dropped more. They did come down some but not in the safe range yet. I'm wondering when we go back to Little Rock if that means they'll have to increase his chemo again? Anyway, other than his counts being a little too high (and not wanting the cell growth to get so crazy that the Leukemia comes back) his other stats looked good. He had developed a nasty cough and some drainage out of the blue so we were worried about that.
After chemo, he wanted to go see what to spend his family birthday money he'd received on and then to his favorite restaurant. It's been FOREVER since we've been there and he really had a great time. I was a little worried though when he barely touched his food and wondered if he wasn't feeling well. After dinner, he matter of factly got up from the table and stated, "Well, I finally feel like I'm 11 now." There you go!
We went home so he could open our presents and I took some more pictures and relished the fact I'm the mom of an 11-year-old. Wow. He felt the effects of chemo as the night progressed. We let him soak his feet in this cool foot bath he likes and that (I hope) helps sometimes with his neuropathy pain. The next morning, though, he was pretty yucky. I finally got him to have some yogurt so he could get his morning meds down. Between chemo and the nasty cough and drainage that came out of nowhere, I was glad the preventative antibiotics started and hoped after a few doses, he'd be feeling better and this could kick whatever was going on. Sure enough, by this morning he was back to himself. Dad and I had a few glances exchanged last night while watching over Brayden. Brayden said he felt like he did when he was first diagnosed, so I was worried something was going on. You hold your breath wondering if he'll spike a fever and then the ER rush is on to get him iv meds quickly. Or, if you're over-reacting? It's tough to know what to do other than try to be in tune with how he is and just let him rest as much as he can.
And so it goes. We hope the rest of this week is better for Brayden and more celebrations to plan for his 2-year since diagnosis in a few weeks!
Brayden's counts have been a little higher than we'd like. Even after increasing his chemo, I've been wondering why they haven't dropped more. They did come down some but not in the safe range yet. I'm wondering when we go back to Little Rock if that means they'll have to increase his chemo again? Anyway, other than his counts being a little too high (and not wanting the cell growth to get so crazy that the Leukemia comes back) his other stats looked good. He had developed a nasty cough and some drainage out of the blue so we were worried about that.
After chemo, he wanted to go see what to spend his family birthday money he'd received on and then to his favorite restaurant. It's been FOREVER since we've been there and he really had a great time. I was a little worried though when he barely touched his food and wondered if he wasn't feeling well. After dinner, he matter of factly got up from the table and stated, "Well, I finally feel like I'm 11 now." There you go!
We went home so he could open our presents and I took some more pictures and relished the fact I'm the mom of an 11-year-old. Wow. He felt the effects of chemo as the night progressed. We let him soak his feet in this cool foot bath he likes and that (I hope) helps sometimes with his neuropathy pain. The next morning, though, he was pretty yucky. I finally got him to have some yogurt so he could get his morning meds down. Between chemo and the nasty cough and drainage that came out of nowhere, I was glad the preventative antibiotics started and hoped after a few doses, he'd be feeling better and this could kick whatever was going on. Sure enough, by this morning he was back to himself. Dad and I had a few glances exchanged last night while watching over Brayden. Brayden said he felt like he did when he was first diagnosed, so I was worried something was going on. You hold your breath wondering if he'll spike a fever and then the ER rush is on to get him iv meds quickly. Or, if you're over-reacting? It's tough to know what to do other than try to be in tune with how he is and just let him rest as much as he can.
And so it goes. We hope the rest of this week is better for Brayden and more celebrations to plan for his 2-year since diagnosis in a few weeks!
Monday, March 28, 2011
Happy 11th Birthday, Brayden!
Wow...11! I was reading over last year's posts and we were cheerful in what we shared but the emotion of it was very different. This time last year Brayden's counts dropped & we had to cancel his birthday party we had planned with his friends. It was so gut-wrenching to make that decision. He handled it like a trooper and yes, we had a bunch of fun things at home planned to keep his spirits high. One year ago he had just finished his first round of Maintenance chemo and spent his actual birthday in Little Rock. It was the first time he finally got to see the Capital building up close. All the spring flowers and trees blooming brightened our day. The day after he spent in his Radiation follow-up appointment, reliving all the emotion, and having a spinal sedation with chemo.
This year...we're SO happy he's been doing well enough to share his birthday celebration with his friends and family. We were sad not everyone could join us, but being back to the same place he celebrated 2 years ago and then weeks later was diagnosed was also emotional. We stayed positive & I tried to stay in the moment. What an awesome celebration! Brayden has come SO far and has been so truly resilient. He has been counting down the days to get to have his Star Wars party we planned to have last year and finally get to use all the fun decorations! He carefully put together all the goody bags and helped me prep all the other decorations. He was insistent we get to the location early so he could help me set up! I told him he didn't have to and that was a 'mom thing.' He REALLY wanted to help so we were sure to get there in time so he could have his fun arranging all the Star Wars stuff and getting everything ready for his friends to arrive. He had helped pick out his cake a few weeks ago and it was so cool!! The cupcakes had little mini light sabers on them!! His excitement of the day was overflowing. The boys had fun playing Lazer Tag and wearing themselves OUT!
He decided last year he had so many things people had blessed him with after his diagnosis that he'd share his birthday with having friends at his party bring toys for the kids at ACH. Since he didn't get to do this last year with his party cancelled, he decided to do it this year. Last week I think he realized what he had committed to and said, "but I'll still have gifts from family, right?" Yes, I'm glad he asked otherwise we'd start to wonder if his wings had sprouted too early! Thank you to everyone who came & shared in this special celebration with us. We can't wait to share the gifts with the ACH kiddos in the Oncology wing on your behalf! We know it will bring a lot of smiles.
We continued the celebration with Brayden's favorite dinner mom cooked Saturday night and Sunday with his favorite breakfast and then homemade sushi yesterday for lunch! Whew! We all need to hit the walking trail this week!!! He was roaring to go this morning bounding out of bed on his actual birth date at 6am! This is his first day back after Spring Break. This time last year was his first day back after a full year off. Wow...I'm bummed he'll have chemo today again, like any other Monday. But his awesome Nurses are what make the chemo seem not so bad. It's so great seeing them and from what I hear, they have a few things planned. Tonight we're hoping his counts are good enough for him to get to go to his favorite restaurant we haven't been to in ages. Then he'll finally get to open presents from Mom & Dad.
Brayden, we're so proud of you! You have SUCH a good heart and you are such a fighter. Even with all the adversity you face, you take it and persevere and rarely complain. Your positivity and outlook constantly teach me each day. We're so blessed to have you as our son. I hope you never forget that we're with you all the way, buddy. Still, not a day goes by that I wish I could carry this burden for you & take the pain and hardship on for you. My heart will never be okay with having to watch you endure all that you have in these nearly 2 years. I continue to learn that I am not in control and am reminded that you are only mine for a time and that you are a child of God and I have to trust you to Him. Know that you are NEVER alone with Him in your heart. Thank you for all your laughter & goofiness! I promise to keep being silly too if you keep laughing WITH me and not AT me! Happy Birthday, sweet boy! To the best of ALL the sons!
This year...we're SO happy he's been doing well enough to share his birthday celebration with his friends and family. We were sad not everyone could join us, but being back to the same place he celebrated 2 years ago and then weeks later was diagnosed was also emotional. We stayed positive & I tried to stay in the moment. What an awesome celebration! Brayden has come SO far and has been so truly resilient. He has been counting down the days to get to have his Star Wars party we planned to have last year and finally get to use all the fun decorations! He carefully put together all the goody bags and helped me prep all the other decorations. He was insistent we get to the location early so he could help me set up! I told him he didn't have to and that was a 'mom thing.' He REALLY wanted to help so we were sure to get there in time so he could have his fun arranging all the Star Wars stuff and getting everything ready for his friends to arrive. He had helped pick out his cake a few weeks ago and it was so cool!! The cupcakes had little mini light sabers on them!! His excitement of the day was overflowing. The boys had fun playing Lazer Tag and wearing themselves OUT!
He decided last year he had so many things people had blessed him with after his diagnosis that he'd share his birthday with having friends at his party bring toys for the kids at ACH. Since he didn't get to do this last year with his party cancelled, he decided to do it this year. Last week I think he realized what he had committed to and said, "but I'll still have gifts from family, right?" Yes, I'm glad he asked otherwise we'd start to wonder if his wings had sprouted too early! Thank you to everyone who came & shared in this special celebration with us. We can't wait to share the gifts with the ACH kiddos in the Oncology wing on your behalf! We know it will bring a lot of smiles.
We continued the celebration with Brayden's favorite dinner mom cooked Saturday night and Sunday with his favorite breakfast and then homemade sushi yesterday for lunch! Whew! We all need to hit the walking trail this week!!! He was roaring to go this morning bounding out of bed on his actual birth date at 6am! This is his first day back after Spring Break. This time last year was his first day back after a full year off. Wow...I'm bummed he'll have chemo today again, like any other Monday. But his awesome Nurses are what make the chemo seem not so bad. It's so great seeing them and from what I hear, they have a few things planned. Tonight we're hoping his counts are good enough for him to get to go to his favorite restaurant we haven't been to in ages. Then he'll finally get to open presents from Mom & Dad.
Brayden, we're so proud of you! You have SUCH a good heart and you are such a fighter. Even with all the adversity you face, you take it and persevere and rarely complain. Your positivity and outlook constantly teach me each day. We're so blessed to have you as our son. I hope you never forget that we're with you all the way, buddy. Still, not a day goes by that I wish I could carry this burden for you & take the pain and hardship on for you. My heart will never be okay with having to watch you endure all that you have in these nearly 2 years. I continue to learn that I am not in control and am reminded that you are only mine for a time and that you are a child of God and I have to trust you to Him. Know that you are NEVER alone with Him in your heart. Thank you for all your laughter & goofiness! I promise to keep being silly too if you keep laughing WITH me and not AT me! Happy Birthday, sweet boy! To the best of ALL the sons!
Friday, March 25, 2011
Good News!
We received an update call from the Make-A-Wish foundation a few weeks ago. It was such a neat call as they checked in to see how Brayden was doing in his treatment schedule. His Oncologist still wants Brayden to be done with treatment before he does his wish. So since his diagnosis began just a few weeks after Brayden turned 9, I don't know if I've adequately expressed here just how frequently his Make-A-Wish comes up. At first I just couldn't imagine that he would get to have this chance to have his wish granted. How neat! But you always associate that with a different scenario--at least I do. My mind immediately goes to those sweet kiddos who are terminal and the emotion just hits you. When his Social Worker saw our reaction early on to hearing that he would be granted a Wish, she reassured us that now the Foundation grants wishes to ALL kiddos who have a cancer diagnosis and endure chemotherapy. Once we understood, then it seemed daunting to answer the question of what he would want since end of treatment was still 3 1/2 yrs away and so much could change with Brayden's likes and dislikes. How little did I know at the time how motivating his Wish would be for him. When times are tough, we always talk about his Wish. Without us prompting, no kidding, it comes up at least once a week. AND EVERY WEEK IT CHANGES!! We smile and have to laugh now because you can get whiplash from him changing his mind. But it is very awesome that he has that ability to change his mind and have this to look forward to. I'm very curious to see by the time he's 12 1/2 what he will end up deciding!! She said she'll check back again on us and hopes Brayden continues to do well!
So we had another exciting call. In January, the Foundation at ACH had contacted us about doing a story for Brayden. They have a quarterly publication sort of like a magazine that goes out to their supporters. My company has been a long-time supporter of ACH and it's always neat to see the things we receive in literature promoting the hospital and success stories. She asked a lot of questions and then we didn't hear anything back. We figured they found another child to feature or changed their minds. Fast forward to last week - I received a call at work from the Foundation. There is an annual fundraiser with many sponsors initially started by Walmart that is held each August with all the proceeds supporting Arkansas Children's Hospital. With my company's sponsorship, it was a privilege to attend last year. It was so emotional reading the material and seeing all that ACH does and feeling such a personal connection and gratitude for all that was being done. The dinner was lovely, decorations so extravagant. There were celebrities and everyone was dressed up and silent auctions and live auctions. But at the end of it all - I was so grateful to everything around me in knowing so personally how it had helped Brayden and how we had been touched by this hospital and how without them...I don't know what we would have done or where we would have gone that night in the ER - when we were 3 days away from losing him.
So - the Foundation each year chooses a Champion Family for their Color of Hope Gala. She told us they fell in love with Brayden's story and loved our connection to the community and said we had been chosen for the 2011 Champion Family! WOW! We are so honored and so amazed at this opportunity to give back. We truly feel that we owe such a debt of gratitude for all that has been done in Brayden's care. We've wanted to give back in small ways to ACH - but never imagined having the forum to give back in such a public way!
They are going to use Brayden's story to promote the event and are also going to have a film crew join us at one of Brayden's upcoming visits to ACH. WHAT!?!? We are truly blown away and certainly intimidated by this opportunity. We hope that through Brayden's story, just as we've prayed, it can help others. We hope it will allow others to see the benefits the hospital can bring and help continue monetary support. So we're pushing aside our fears and intimidation in hopes of helping others! I can't wait to share more here with you...
Monday, March 21, 2011
Birthday Month!
Wow - March seems like it just started and I'm sad to see it quickly moving past. Brayden - wow. He's growing! After missing 2 months prior due to all the crazy snow & winter weather, we finally had our Little Rock appt a couple weeks ago. It was so great to see everyone and have that comforting feeling of being sort of home in some way. We loved getting to see his sweet Nurse, his Oncologist, and his sedation Nurse and all the other wonderful familiar faces. It was time for Brayden to have another spinal sedation where he is sedated for a procedure where spinal fluid is drawn from him to be tested to ensure there aren't any leukemia cells growing in his brain. Injected back into his spinal fluid is chemo meds (intrathecal chemo) to continue to treating those cells. We're glad this only happens once every 12 weeks. He doesn't like not getting to have breakfast or anything to drink those mornings and leaving the house before 5am for that drive, we are always hoping he can just sleep as much as possible until the procedure is done. This procedure also kicks off another cycle of chemo and continues his countdown! We're now down to 16 months remaining of treatment!
We were shocked at the ACH visit to hear Brayden has grown 2" taller in the last 3 months! Of course, we knew with his stronger counts the last couple of months combined with his growth that leads to an increase in his chemo dosage. Dr. S. heard the question and I knew the answer before it was out of my mouth. But I was surprised to hear the increase would be by more than 25%. Brayden did so well during the sedation. We always leave the room during the procedure and usually are back before he's waking up from the sedation medicine. We were surprised he was already awake! He still has to continue laying down for 35+ minutes post-procedure so it doesn't give him a terrible headache. We've heard how nasty those can be. This time, it was more difficult to keep Brayden still and down! He was wide awake and not groggy at all and ready to sit up. Thankfully he made it until the time (as he stared at the clock while we tried to keep his mind off of it!) and was ready for some food! The trip back went well and we did our normal run of getting all the monthly meds filled. It was steroid week where, with his new chemo dosage, is up to 147 pills for that week. He trudged through and thanks to the help of pickles being his craving of choice, literally had to be excreting pickle juice through his skin! He doesn't believe me but it HAS to be true!
Unfortunately, he did have a harder time bouncing back after this chemo round. I'm not sure if it was the spinal sedation with chemo or the monthly chemo round but he was yucky for the first time in a while. It was harder to take, since he's been doing so good for so long, to see him that way. The meds definitely helped those side effects and he rested well, which was I hope helpful to his body to get a rest and keep fighting. It's been an emotional couple of weeks for me that started with him being sick this time. He's been counting the days until his 11th birthday since March 1st, just in case we forgot it was his birthday month! Knowing the calendar then brings a special 2-year celebration since his diagnosis just 3 weeks later is hitting me this year. I've read all the old emails in those first hours and days from 2009 from his bedside at Arkansas Children's Hospital. Wow...I'm speechless. It's truly amazing how our brains work and how reading an email can put you right back in that place emotionally, physically, smelling those smells. During this time we've also found out some amazing news that I can't wait to share about a way we can give back that's really good news. The only thing is answering some questions and sharing has peeled back those layers to the raw emotion of what we endured those first hours, days and weeks. 2 weeks ago while on his way to work, Bryan can't help but always glance over at the hospital and be reminded of that night with Brayden in the ER when he was life-flighted on Angel One to ACH. This day, he called me. It sent such a riveting emotional reaction because this day, Angel One was again on the helipad. 2 years later and in many ways, it seems like yesterday.
We do what we can only do and continue to focus on the positive. Brayden continues to persevere and do so remarkably well. That is one of the incredible benefits of our LR trips to be reassured and reminded he's okay. There's so much that continues to battle on just underneath the surface and we don't want to ignore it but we also work to try to keep things normal for all of us, whatever that new normal is for us. We're worried with the increased chemo his counts will drop. While we know that they need to come down to stay in control of his cell growth so the Leukemia doesn't enter back in, we just are hoping they don't drop too low and he can continue doing the fun things he loves.
He's enjoying spring break this week. While planning some fun activities last week, I mentioned his local Oncology clinic visit today. His reaction just broke my heart. "Monday?!?! But it's spring break!" He just didn't remember it continues and never stops - every week. No rest. No breaks. Even for spring break. I tried to reassure him and say the right words thinking in the back of my mind that I wish he could have a break. I hope my feeble attempt helped him. Maybe with a break from school and schoolwork, he can have plenty of rest this week and combined with planning for his big birthday he'll be focusing on things that are fun and exciting to overshadow everything else. I know that's what we are trying to do too...
Thank you all for your prayers and continued support. I can't wait to share the other exciting news and more about his upcoming celebrations. Our hearts continue to be heavy for others still fighting their battle with relapse - a word we hope & pray we never utter in regards to Brayden. Meanwhile another celebrates with good news of remission. So again we focus on the big birthday month and so much to be thankful for and hopefully the next post we'll be a little more upbeat.
We continue to pray for the protection of Brayden's liver function as it filters out the harmful toxins from the chemo. We pray for the protection of his heart. We pray for his already immune-compromised system to remain strong and keep him protected from outside infections. We pray for his healthy cells to remain healthy and the chemo to continue doing its job in complete healing from Leukemia. We pray for protection for Brayden's spirit as he continues this battle to remain positive and optimistic and to be rejuvenated with even more spirit to fight. We pray for the other families fighting that God would lift them and carry them during those tough times and that they would feel Him holding them and feel His love so close. We pray for the many other children fighting that there would be a cure....and no child has to endure what too many continue to face each day.
We were shocked at the ACH visit to hear Brayden has grown 2" taller in the last 3 months! Of course, we knew with his stronger counts the last couple of months combined with his growth that leads to an increase in his chemo dosage. Dr. S. heard the question and I knew the answer before it was out of my mouth. But I was surprised to hear the increase would be by more than 25%. Brayden did so well during the sedation. We always leave the room during the procedure and usually are back before he's waking up from the sedation medicine. We were surprised he was already awake! He still has to continue laying down for 35+ minutes post-procedure so it doesn't give him a terrible headache. We've heard how nasty those can be. This time, it was more difficult to keep Brayden still and down! He was wide awake and not groggy at all and ready to sit up. Thankfully he made it until the time (as he stared at the clock while we tried to keep his mind off of it!) and was ready for some food! The trip back went well and we did our normal run of getting all the monthly meds filled. It was steroid week where, with his new chemo dosage, is up to 147 pills for that week. He trudged through and thanks to the help of pickles being his craving of choice, literally had to be excreting pickle juice through his skin! He doesn't believe me but it HAS to be true!
Unfortunately, he did have a harder time bouncing back after this chemo round. I'm not sure if it was the spinal sedation with chemo or the monthly chemo round but he was yucky for the first time in a while. It was harder to take, since he's been doing so good for so long, to see him that way. The meds definitely helped those side effects and he rested well, which was I hope helpful to his body to get a rest and keep fighting. It's been an emotional couple of weeks for me that started with him being sick this time. He's been counting the days until his 11th birthday since March 1st, just in case we forgot it was his birthday month! Knowing the calendar then brings a special 2-year celebration since his diagnosis just 3 weeks later is hitting me this year. I've read all the old emails in those first hours and days from 2009 from his bedside at Arkansas Children's Hospital. Wow...I'm speechless. It's truly amazing how our brains work and how reading an email can put you right back in that place emotionally, physically, smelling those smells. During this time we've also found out some amazing news that I can't wait to share about a way we can give back that's really good news. The only thing is answering some questions and sharing has peeled back those layers to the raw emotion of what we endured those first hours, days and weeks. 2 weeks ago while on his way to work, Bryan can't help but always glance over at the hospital and be reminded of that night with Brayden in the ER when he was life-flighted on Angel One to ACH. This day, he called me. It sent such a riveting emotional reaction because this day, Angel One was again on the helipad. 2 years later and in many ways, it seems like yesterday.
We do what we can only do and continue to focus on the positive. Brayden continues to persevere and do so remarkably well. That is one of the incredible benefits of our LR trips to be reassured and reminded he's okay. There's so much that continues to battle on just underneath the surface and we don't want to ignore it but we also work to try to keep things normal for all of us, whatever that new normal is for us. We're worried with the increased chemo his counts will drop. While we know that they need to come down to stay in control of his cell growth so the Leukemia doesn't enter back in, we just are hoping they don't drop too low and he can continue doing the fun things he loves.
He's enjoying spring break this week. While planning some fun activities last week, I mentioned his local Oncology clinic visit today. His reaction just broke my heart. "Monday?!?! But it's spring break!" He just didn't remember it continues and never stops - every week. No rest. No breaks. Even for spring break. I tried to reassure him and say the right words thinking in the back of my mind that I wish he could have a break. I hope my feeble attempt helped him. Maybe with a break from school and schoolwork, he can have plenty of rest this week and combined with planning for his big birthday he'll be focusing on things that are fun and exciting to overshadow everything else. I know that's what we are trying to do too...
Thank you all for your prayers and continued support. I can't wait to share the other exciting news and more about his upcoming celebrations. Our hearts continue to be heavy for others still fighting their battle with relapse - a word we hope & pray we never utter in regards to Brayden. Meanwhile another celebrates with good news of remission. So again we focus on the big birthday month and so much to be thankful for and hopefully the next post we'll be a little more upbeat.
We continue to pray for the protection of Brayden's liver function as it filters out the harmful toxins from the chemo. We pray for the protection of his heart. We pray for his already immune-compromised system to remain strong and keep him protected from outside infections. We pray for his healthy cells to remain healthy and the chemo to continue doing its job in complete healing from Leukemia. We pray for protection for Brayden's spirit as he continues this battle to remain positive and optimistic and to be rejuvenated with even more spirit to fight. We pray for the other families fighting that God would lift them and carry them during those tough times and that they would feel Him holding them and feel His love so close. We pray for the many other children fighting that there would be a cure....and no child has to endure what too many continue to face each day.
Tuesday, February 1, 2011
Spring or Winter?
WOW! You know it's Arkansas when you have a swing of 73 degrees and the next day you're stocking up for a possible winter storm. Literally, 3 days later, it's sleeting outside. I went to pick up Brayden from school yesterday for his weekly chemo visit and he was jumping up and down as he waited his turn. He barely got the car open before screaming, "School's already closed for tomorrow!" What? I was relieved to not have to hold my breath and worry about traveling on the ice on our hills and curves to get him to school but was laughing a little. Ahh...to be young and think ice=school closing and not ice=power outages and worry for your family!! My sister said it best; it's not like we will starve in 2 days. I will say the -6 actual temp has me a little nervous following this storm. Snow is one thing; ice is another in NWA. We've been burned before!!
Brayden's weekly chemo visit went well. His counts were all in good shape. His adorable nurse gave him some yummy hot chocolate while we waited talking mostly about the impending weather. His counts were in a good range - not too high and not to low - so it's a good week! He's feeling good this week and loving the less pills each day with steroid week becoming a distant memory. We'll hope he doesn't have the nausea today after his methotrexate chemo yesterday. You never know if it will bother him from week to week.
He loved getting outside and soaking up the warm air on Saturday. As for today, he's getting ready to play in some more snow! Of course, that will be after 10, I'm sure, before he wakes up. Hopefully he'll get some good sleep. Mom? Well, a little nervous and on edge worrying about a power outage, but we're praying we stay warm & cozy to enjoy the snow. We pray the same for you!!
Brayden's weekly chemo visit went well. His counts were all in good shape. His adorable nurse gave him some yummy hot chocolate while we waited talking mostly about the impending weather. His counts were in a good range - not too high and not to low - so it's a good week! He's feeling good this week and loving the less pills each day with steroid week becoming a distant memory. We'll hope he doesn't have the nausea today after his methotrexate chemo yesterday. You never know if it will bother him from week to week.
He loved getting outside and soaking up the warm air on Saturday. As for today, he's getting ready to play in some more snow! Of course, that will be after 10, I'm sure, before he wakes up. Hopefully he'll get some good sleep. Mom? Well, a little nervous and on edge worrying about a power outage, but we're praying we stay warm & cozy to enjoy the snow. We pray the same for you!!
Wednesday, January 19, 2011
Steroid Week = Stare-a-DROID week
Brayden's made jokes for a while about his steroid pills. There's definitely a scientific reason for everything he takes and we're so thankful for the research that's improved the success rate for treatment for Leukemia. Our family can all agree about one thing - WE DON'T LIKE the steroids! There have been MANY funny stories the past 21 months involving the side effects of steroids: our first July 4th platter of deviled eggs neatly in the fridge the night before and the morning after - GONE! I digress...Can you guess what week last week was? Yes, steroid week. It definitely impacts the cellular activity, so we know there are reasons. We just try to not think about the effects of steroids too greatly. We know there have been MUCH more intense dosages and we've endured those. His monthly dose is much more tolerable - just 1 week. It never fails by that last dose at the end of the week, we're all celebrating. But what we've come to realize is the effects of those can last well into the second week. BOOO!!! I don't know if you've heard of users of steroids who abuse its uses, but those side effects remain true even if you're taking it to help combat Leukemia. So we jokingly call them this because it causes Brayden to turn into a droid for a little bit! Poor guy - I can't imagine what all is going on in his body. I know he does his best to stay true to himself. All the chemicals have such an effect and this is so true of the emotional effect stare-a-droids have. The food symptoms are the least of our worries! We do our best with knowing glances between me & Bryan mentally remembering what week it is in his treatment plan, take a deep breath, and move on. Then, before you know it, our sweet Brayden is back again.
The worst thing about this time of the month in his treatment cycle is how sore it can make him. Some days he's sore to the touch. We do back massages and anything we can to help him. But on these days, it just kills me and makes me physically ill to hear him wince and remind me today's when he's hurting all over. I'm so glad those days aren't lingering and move away quickly.
Monday's chemo at the local clinic went well. Of course, with steroid week, his counts were artificially higher than normal. We throw this week out when measuring his counts since we know it's impacted from the steroids. There were some dips to his hemoglobin and platelet measures, but nothing to be alarmed about. It's hard to look at the numbers and not catch your breath for a second and wonder if it's the start of a decline or just a short-term dip. All in all, he's still doing so remarkably well. That's what keeps us going and propelling us forward.
For now, my little weather man will keep a close watch on the snow forecast. It was just too scary cold last time to let him play in it, but we'll have to get out there and enjoy the white stuff if we get as much as they're saying. He's crossing his fingers he'll get some snow...and, of course, a snow day. Some things never change...
Wednesday, January 12, 2011
No Snow Days for Chemo
What is up with it being colder here in Arkansas than in Northern Wisconsin? HUH? This was to be our Little Rock week, but the huge storm that moved in had other plans. Poor Little Rock got dumped with snow Sunday and definitely changed our travel plans for our 5am departure Monday morning. Thankfully, our great nurse at ACH and our great nurse at the local Oncology clinic worked together to ensure Brayden could stay on track with getting his monthly chemo administered here instead. It made things a little crazy with not being sure when we were to leave and worried we needed to make it home before our snow was to hit. Thankfully, it all worked out.
We were really thankful the monthly chemo med was available at the local clinic. Brayden's counts came back really well and all signs were good. He received his chemo dosages and we were so glad this wouldn't mess up our Little Rock schedule either.
I think no matter how much school you miss, at 10, any snow day is still a cause for celebration. The day after chemo can sometimes hit him hard. Thankfully with his school closed he was able to sleep in and get some rest.
This is his steroid week, so it's back to 24 pills per day. He's still a rockstar with knocking them all back. We were a little nervous his chemo dosage might be increased. His counts have been good - but a little too good. In an effort to ensure they keep his new cells in control and keep the leukemia at bay, they are aggressive with increasing his chemo when his system gets too comfortable with the dosage, or, in Brayden's case, he grows and it needs to be adjusted. Thankfully this time, things are staying the same and we'll continue to see how he progresses. We were surprised at how high his counts were 3 weeks ago and then quickly glad when in the following days he started fighting a cold or some sort of upper respiratory thing. We were nervous about his cough moving into his chest and his nurses did a great job of ensuring his lungs were okay. Christmas night was a little scary. I sat up with him expecting any moment he'd spike a temp and we'd have to rush to the ER. Thankfully, his higher counts maybe helped him fight it off and he made it through without a trip to the hospital. The next week we definitely saw the impact to his counts as they had dropped to their lowest point in weeks. Thank goodness!!
It's tough not to be nervous when they're too high and too concerned when they're too low. I'm not sure if there will come a time when our breath doesn't catch right as his blood results are being handed to us.
The New Year brought similar thinking to our small family. It's amazing how 2012 being the year Brayden finishes treatment seemed to loom so far in the distance when he was diagnosed early 2009. Now, as 2011 was ushered in, it was surreal to hear Bryan and Brayden both say separately how it helped 2012 seem not so far away anymore. It's never far from our thinking. And here I thought I was the only one who seemed to keep considering what 2011 meant to us in terms of Brayden kicking chemo for good.
The past few months have been difficult in hearing of so many at ACH losing their battle with pediatric cancer. I can't wrap my brain around that. Brayden and I were half listening to the news the other night when he heard about a memorial service for a local teenage girl who lost her battle with leukemia. The look on his face was so painful. We've tried to protect him from the realities of cancer. It's one of the things we were so grateful for in the beginning...childhood innocence and ignorance about cancer is a blessing. Kids like Brayden don't have a preconceived idea in their minds of what the fight is like. We're praying for those newly diagnosed in their fight and those who have relapsed who have touched our lives since his diagnosis and pray Brayden continues to be shielded and protected from that possibility.
All in all, we have so much to be thankful for. Brayden continues to march on through his treatment so strong. Our family marveled at how healthy he looks in comparing our Christmas card this year to just one year ago. Thank you all for the impact you've had on our lives. Thank you for continuing to pray. We're reminded of you each day when we walk to Brayden's room and see his prayer map on the wall. You mean so much to us!!!
In the meantime, it's back to studying for school and trying to stay warm as my fingers are going numb as I type!! BRRRR!!! We're ready for spring....and counting down even more the 20 months until Brayden's LAST CHEMO CELEBRATION!!!!!!!!!!
We were really thankful the monthly chemo med was available at the local clinic. Brayden's counts came back really well and all signs were good. He received his chemo dosages and we were so glad this wouldn't mess up our Little Rock schedule either.
I think no matter how much school you miss, at 10, any snow day is still a cause for celebration. The day after chemo can sometimes hit him hard. Thankfully with his school closed he was able to sleep in and get some rest.
This is his steroid week, so it's back to 24 pills per day. He's still a rockstar with knocking them all back. We were a little nervous his chemo dosage might be increased. His counts have been good - but a little too good. In an effort to ensure they keep his new cells in control and keep the leukemia at bay, they are aggressive with increasing his chemo when his system gets too comfortable with the dosage, or, in Brayden's case, he grows and it needs to be adjusted. Thankfully this time, things are staying the same and we'll continue to see how he progresses. We were surprised at how high his counts were 3 weeks ago and then quickly glad when in the following days he started fighting a cold or some sort of upper respiratory thing. We were nervous about his cough moving into his chest and his nurses did a great job of ensuring his lungs were okay. Christmas night was a little scary. I sat up with him expecting any moment he'd spike a temp and we'd have to rush to the ER. Thankfully, his higher counts maybe helped him fight it off and he made it through without a trip to the hospital. The next week we definitely saw the impact to his counts as they had dropped to their lowest point in weeks. Thank goodness!!
It's tough not to be nervous when they're too high and too concerned when they're too low. I'm not sure if there will come a time when our breath doesn't catch right as his blood results are being handed to us.
The New Year brought similar thinking to our small family. It's amazing how 2012 being the year Brayden finishes treatment seemed to loom so far in the distance when he was diagnosed early 2009. Now, as 2011 was ushered in, it was surreal to hear Bryan and Brayden both say separately how it helped 2012 seem not so far away anymore. It's never far from our thinking. And here I thought I was the only one who seemed to keep considering what 2011 meant to us in terms of Brayden kicking chemo for good.
The past few months have been difficult in hearing of so many at ACH losing their battle with pediatric cancer. I can't wrap my brain around that. Brayden and I were half listening to the news the other night when he heard about a memorial service for a local teenage girl who lost her battle with leukemia. The look on his face was so painful. We've tried to protect him from the realities of cancer. It's one of the things we were so grateful for in the beginning...childhood innocence and ignorance about cancer is a blessing. Kids like Brayden don't have a preconceived idea in their minds of what the fight is like. We're praying for those newly diagnosed in their fight and those who have relapsed who have touched our lives since his diagnosis and pray Brayden continues to be shielded and protected from that possibility.
All in all, we have so much to be thankful for. Brayden continues to march on through his treatment so strong. Our family marveled at how healthy he looks in comparing our Christmas card this year to just one year ago. Thank you all for the impact you've had on our lives. Thank you for continuing to pray. We're reminded of you each day when we walk to Brayden's room and see his prayer map on the wall. You mean so much to us!!!
In the meantime, it's back to studying for school and trying to stay warm as my fingers are going numb as I type!! BRRRR!!! We're ready for spring....and counting down even more the 20 months until Brayden's LAST CHEMO CELEBRATION!!!!!!!!!!
Saturday, December 18, 2010
Blood Drive Results & Updates
Thank you to everyone who came out & supported the Blood Drive! We had a goal of 40 units, but were happy that my last donation of the day got us to 24. Every bit helps! Brayden had an early out for Christmas Break and was so thrilled to get to man the check-in table at the blood drive. He did so great! Ms. Korey from the Red Cross so sweetly gave him a beautiful ornament and this cool shirt! Brayden decided to have everyone sign a hat that donated. Towards the end of the day, we were cracking up at him organizing and picking things up all on his own to get ready to go. He was quite the host for the day!
He seemed to really enjoy getting to see those who donated. Both Dad & Mom were able to give and it's a race to see who was done quicker. Of course, Dad always wins that one! Donating blood is truly a precious gift to give. Thank you all who took time out of this busy season to come out to visit & donate!!
Just a quick update on Brayden's treatments - we had a long day in Little Rock this past week. Thankfully, the results were good. Brayden had his quarterly spinal sedation with intrathecal chemo to treat the leukemia cells that were present in his brain at the time of his diagnosis. He admitted he was a bit nervous this time and it really surprised me...he's usually cool as a cucumber. He doesn't like not being able to eat or drink after midnight for his sedations. Thankfully, we were able to get back to the procedure room quickly and there was some tv to distract him as well as some friendly faces in the staff that works with him to keep his mind off of it. It still is so surreal when Bryan and I leave that room after kissing him goodbye for him to get 'the dizzy medicine.' It brings back such strong memories of us walking away while Brayden's enduring life-saving procedures. Each week, we still hold our breath and over analyze all his lab results. Thankfully, Brayden is so resilient and staying so strong without having interruptions to chemo and continuing his weekly regimen. After his sedation procedure was complete and he stayed laying down for the required 15 minutes, he chowed on some yogurt, grapes, chocolate milk (of course) and we went to the floor next door where he stayed upon his first diagnosis and spent many days during the first 6 months of his treatment. It was like a kick in the gut...for both of us. The best part was seeing his nurses! One especially who was in the early pictures and we found out later was the one who came to PICU to give Brayden his first chemo. She couldn't ask questions fast enough and they loved hearing AND SEEING how well Brayden is doing! Another nurse told us how good it is to see the kiddos who are doing well. They don't always get to see their progress and it's so encouraging for them. We learned that 29 precious children at Arkansas Children's Hospital lost their fight with pediatric cancer in 2010. My heart can't handle wondering if some of them were ones we saw while in clinic, sat next to, smiled a knowing smile while walking the hospital halls. Please keep those families in your prayers this Christmas. We continue to be thankful for the amazing staff at ACH. They hold a very special place in our hearts. We've also heard of another one who has relapsed. They're a local family who need your prayers and are at St. Jude receiving a very new type of therapy and we pray even with the dismal success rate, he beats the odds. We also have held in our hearts the past couple of a months a graduate from Brayden's school who was diagnosed with cancer. Our prayers stay close to her & her family.
Brayden continues his regimen this week with steroids, which always come with lovely side effects: extra hunger, wild mood swings, pink cheeks, swollen effects on his body, and the list goes on. Brayden's become a master at taking all his pills in one gulp & I'm amazed how far he's come! Each night between 5-6 pills, each morning 3 and on his antibiotic days and with steroids, the daily dosage becomes 22. He's truly a trooper.
We had a wonderful time tonight getting to visit the Fayetteville Square Lights of the Ozarks! It's been a tradition for a while. Although, last year, we drove around the square in our pj's in the car - since we had just gotten back from radiation and Brayden was in isolation. It was wonderful to get to be out in the chilly weather and Brayden was really into the Christmas spirit! This morning he kicked off the day with barely able to sleep in...some Christmas money in a card from his great aunt was burning a hole in his pocket! Then we went to Lowe's to finish off his train. It's taken 3 weeks to build each part of the train and he did such an awesome job putting the project together at Kid's Clinic all on his own. I remember the days when we needed to help supervise and read the next steps. Those are so long ago. I just sat and watched him and couldn't help seeing the other little kids around whose parents were still helping. Where does the time go?
What a day...he's loving the Christmas countdown and I can't believe how FAST Christmas is approaching! I just want to freeze time a little. I hope we're able to enjoy the upcoming days and knock off all our wishes of things to do in preparation for Christmas. We've got some movies to watch, some cocoa to drink, and some presents to wrap! But most of all, some love to give and some memories to make of being home all together and being so thankful for the true reason for the season! MERRY CHRISTMAS!!!
He seemed to really enjoy getting to see those who donated. Both Dad & Mom were able to give and it's a race to see who was done quicker. Of course, Dad always wins that one! Donating blood is truly a precious gift to give. Thank you all who took time out of this busy season to come out to visit & donate!!
Just a quick update on Brayden's treatments - we had a long day in Little Rock this past week. Thankfully, the results were good. Brayden had his quarterly spinal sedation with intrathecal chemo to treat the leukemia cells that were present in his brain at the time of his diagnosis. He admitted he was a bit nervous this time and it really surprised me...he's usually cool as a cucumber. He doesn't like not being able to eat or drink after midnight for his sedations. Thankfully, we were able to get back to the procedure room quickly and there was some tv to distract him as well as some friendly faces in the staff that works with him to keep his mind off of it. It still is so surreal when Bryan and I leave that room after kissing him goodbye for him to get 'the dizzy medicine.' It brings back such strong memories of us walking away while Brayden's enduring life-saving procedures. Each week, we still hold our breath and over analyze all his lab results. Thankfully, Brayden is so resilient and staying so strong without having interruptions to chemo and continuing his weekly regimen. After his sedation procedure was complete and he stayed laying down for the required 15 minutes, he chowed on some yogurt, grapes, chocolate milk (of course) and we went to the floor next door where he stayed upon his first diagnosis and spent many days during the first 6 months of his treatment. It was like a kick in the gut...for both of us. The best part was seeing his nurses! One especially who was in the early pictures and we found out later was the one who came to PICU to give Brayden his first chemo. She couldn't ask questions fast enough and they loved hearing AND SEEING how well Brayden is doing! Another nurse told us how good it is to see the kiddos who are doing well. They don't always get to see their progress and it's so encouraging for them. We learned that 29 precious children at Arkansas Children's Hospital lost their fight with pediatric cancer in 2010. My heart can't handle wondering if some of them were ones we saw while in clinic, sat next to, smiled a knowing smile while walking the hospital halls. Please keep those families in your prayers this Christmas. We continue to be thankful for the amazing staff at ACH. They hold a very special place in our hearts. We've also heard of another one who has relapsed. They're a local family who need your prayers and are at St. Jude receiving a very new type of therapy and we pray even with the dismal success rate, he beats the odds. We also have held in our hearts the past couple of a months a graduate from Brayden's school who was diagnosed with cancer. Our prayers stay close to her & her family.Brayden continues his regimen this week with steroids, which always come with lovely side effects: extra hunger, wild mood swings, pink cheeks, swollen effects on his body, and the list goes on. Brayden's become a master at taking all his pills in one gulp & I'm amazed how far he's come! Each night between 5-6 pills, each morning 3 and on his antibiotic days and with steroids, the daily dosage becomes 22. He's truly a trooper.
We had a wonderful time tonight getting to visit the Fayetteville Square Lights of the Ozarks! It's been a tradition for a while. Although, last year, we drove around the square in our pj's in the car - since we had just gotten back from radiation and Brayden was in isolation. It was wonderful to get to be out in the chilly weather and Brayden was really into the Christmas spirit! This morning he kicked off the day with barely able to sleep in...some Christmas money in a card from his great aunt was burning a hole in his pocket! Then we went to Lowe's to finish off his train. It's taken 3 weeks to build each part of the train and he did such an awesome job putting the project together at Kid's Clinic all on his own. I remember the days when we needed to help supervise and read the next steps. Those are so long ago. I just sat and watched him and couldn't help seeing the other little kids around whose parents were still helping. Where does the time go?
What a day...he's loving the Christmas countdown and I can't believe how FAST Christmas is approaching! I just want to freeze time a little. I hope we're able to enjoy the upcoming days and knock off all our wishes of things to do in preparation for Christmas. We've got some movies to watch, some cocoa to drink, and some presents to wrap! But most of all, some love to give and some memories to make of being home all together and being so thankful for the true reason for the season! MERRY CHRISTMAS!!!
Thursday, December 16, 2010
Conquer Fears - Conquer Cancer
We need your help! We are hosting our 3rd Red Cross Blood Drive since Brayden's diagnosis. We are more fully aware than ever, on a very personal level, how critical blood donations are. Pediatric cancer and the aggressive chemo that goes with it literally kills the good and bad cells. So many kids are only able to continue fighting because of blood and platelet transfusions. We've had some scary moments at our local hospital and at Arkansas Children's Hospital being told they 'hoped' there was blood available. This is so hard for me to fathom. I guess this should cause us to realize the effect pediatric cancer can have. We hope there is always blood available for each child to continue their fight. Will you help us? Will you ask others to help us?
This is an incredible gift you can give this Christmas season - the gift of life. I know it's a busy time. We hoped having it this time would help, but we haven't gotten much response. If you can, please stop by or schedule an appointment to donate. This is our way of giving back to help other kids. Thankfully, Brayden hasn't had to have a blood transfusion in several months. We look at his blood work results each week to make sure he's not in the danger zone. Thank you for your help in conquering the fear so we can work together to keep the kids fighting and conquer cancer!
Help us donate - it is the most important gift you can give this Christmas!!
American Red Cross Blood Drive in honor of Brayden Jones
Friday, December 17th
Bentonville Plaza, Suite 835
12 to 6pm
Join us to help give back in honor of Brayden's fight against T-Cell Acute Lymphoblastic Leukemia. Since his diagnosis April 22, 2009, he's come a long way! He has 2 more years of treatment left and after some hiccups this summer, we're SO thankful for each blood donation to help him & others continue to fight. So many blood transfusions are needed for him & other kiddos enduring aggressive chemo treatments. We hope there is never a time when parents hear that blood is not available for their child. Thank you to those who have celebrated & donated with us last year in December & this year in May. Please join us again!
- Bryan, Lisa and Brayden Jones
Please remember to bring a photo id or your Red Cross Donor Card and to eat 1-2 hours before donating. To avoid a wait, please schedule an appointment at www.redcrossblood.org and enter sponsor code BENTONPLAZA.
Saturday, December 11, 2010
A few things you missed...
Thank you to everyone for your encouragement to keep blogging. Brayden's doing great. Other than a week or two with low counts, he's done great. So much has happened...we wanted to share with you a few. Enjoy! We're so thankful for each of you & your continued prayers & support.
Annual Son's Day with a trip to the Little Rock Zoo! After a year and a half of frequent trips to Little Rock, we finally got to see the Zoo!!
And...Brayden was finally able to enjoy the swimming pool in Little Rock he was only able to previously enjoy from looking out the window. I told him last summer when he had his picc line in and was unable to swim, the time would be here before he knew it to enjoy that pool! He relished each moment, diving without a care into the water, and it was an unreal, full circle moment for me to see him with such joy.
Thanks to a dear friend, Brayden was able to fulfill a true "Make a Wish" moment by seeing up close the Razorback Football Field & Stadium! 200+ pics later, that was a day he'll NEVER forget after being able to fulfill many wishes in Hawg Stadium! Thank you just doesn't seem to be enough for how amazing this was for Brayden. WOW!
Heroes were among us as a great friend (my former boss) followed his passion & put his dream of competing in an Ironman into a foundation he formed to raise money for pediatric cancer research. Truly amazing...more from me on this BIG event later. It's been truly remarkable to follow Mike's Ironman journey for us all, but especially for Brayden.
Brayden got a tip from a friend that Will Ferrell was making an appearance at our local WM. The Christmas movie "Elf" has been the source of countless laughter at the Jones house many, many times. Last year during Brayden's Radiation treatments when we were staying in Little Rock, we watched it again and again! It was such a wonderful experience for Brayden to get to meet him in person. He was so nice, shook Brayden's hand, and spoke to him. I asked Brayden if he told him he wasn't the real Will Ferrell; he smelled like beef & cheese. Nope - Brayden's favorite line would have been SO good to use there!!
Fall came quickly for us. Last year, so much of this time for Brayden was spent in isolation. Really, from September to January, he was at home the bulk of the time and we weren't able to spend much time with family or continue a lot of our traditions. This year, we are literally soaking it all in and trying to make each moment expand a bit more. Brayden was so thrilled to be able to go back to the Pumpkin Patch this year. I took so many pics! It was a beautiful afternoon and the colors were amazing! Brayden was being so nurturing of the pumpkins he picked! He had a ton of fun with the hayride and exploring as much of the farm he could fit in and picked some great pumpkins!
We decided to make the most of the fall colors and the beautiful fall afternoon & literally let the road lead us! Nini was a big help driving when I'd pull over to the side of the road & start taking pics! We didn't have much daylight left & I was wanting to capture as many memories as I could. My little man is growing so fast!! More than the pictures, I will treasure this exploration afternoon as we ran & darted in the woods & trekked up hills and followed the sunset & the trees. Mommy was definitely spontaneous & I know Brayden was enjoying being there to witness such an event!!
We loved being able to be with family this Thanksgiving. It was a far cry from last year's experience. We had spent the week at ACH with Brayden undergoing daily chemo treatments. Thanksgiving Day, we were in patient. After Brayden was released, we drove home with him still in isolation. I remember being so sad and just exhausted and ready for normalcy. Some dear friends had lovingly paid for a local restaurant to have a Thanksgiving dinner ready for us to come home to. That was such a blessing and SUCH an amazing gift. We did our best to pay that blessing forward this year. Our hearts were full that Brayden was able to again enjoy those traditions this year. Even though we were sad to not be able to see all of our family due to Dad's crazy work schedule, it was a step closer to normalcy and helped us to remember to be thankful. My favorite quote for Thanksgiving that I put in my cards really rings true for us.
"The truest measure of our thanksgiving is how we use the blessings for which we give thanks."
We're hoping December goes by SO slowly for us this year! Brayden continues to recall where we were this time last year - living in Little Rock for 2 weeks with daily Radiation treatments, Brayden's hair loss, and being pretty sick at times. It was startling to me how out of the blue the other day, he said he had that 'taste' again that he used to get during his radiation treatments. After a few strange seconds, I realized he was drinking hot chocolate for the first time this fall! He used to drink hot chocolate each day he'd go to Radiation as a treat. It was a good way to get rid of the taste. It just crushed my heart for him. So being home and being together this year is the biggest Christmas gift for us. Being able to put up our Christmas tree and not rushing and knowing we're home together is wonderful.
We loved getting to go out to the local mall last weekend & just hang out. It occurred to me we had only gotten to do this one other time in the year and a half since Brayden's diagnosis. It was reminiscent of normalcy again and Brayden LOVED getting to be out. We froze but it was good to be cold & enjoy that the holiday season was here!
One of my best friends came over to photograph us for Christmas this year. I loved the moments she captured with Hershey & Brayden!!
Didn't she do an incredible job? I hope this catches everyone up a bit. Please continue to be in prayer for Brayden's protection from the chemo and its effect on his liver and his heart. We are thankful for his healing. He continues with weekly trips to the local Oncology clinic for chemo, his nightly chemo regimen, monthly steroids & additional chemo at AR Children's Hospital, and every 3 months chemo via his spinal fluid. He's working very hard in school and definitely has had to work harder this year. We're not sure if this is a result of the radiation effects, but he's had to overcome some other things. All in all, we hold firm to the strength he possesses and continues to be resilient above all expectations. His wonderful Oncologist continues to reassure us of how well Brayden continues to do and respond to treatment. Thankfully he hasn't had any recent interruptions to chemo and we hope and pray it continues to do the work of keeping Brayden on the road to full healing.
We send huge wishes to each of you & your families this year. I'll work to do better of keeping updates here. Your encouragement to do so pushes me beyond the hard times some time as it's still a week to week battle with new blood results to agonize over and hold your breath while reading. But I am reminded how much we have to be thankful for...and that is what we continue to cling to each day. MERRY CHRISTMAS!!!!
Wednesday, September 8, 2010
We're on a roll!
Wow - Labor Day? Really?!?!?! We had a great kickoff to the holiday weekend with getting to go to the Drive In. I love that we still have one around. We've wanted to go sooner but there haven't been many kid-friendly movies playing WHILE weather was cool enough to breathe! Thankfully, both worked out timed perfectly. Actually, we got a little chilly! The temp definitely took a nose dive that night after the cold front moved through the night before with some vicious storms Hershey wasn't happy about. We took lots of blankets and snacks and were snuggly buggly in the back of Dad's truck to watch some good movies. We had a GREAT time, even with the cold air and all the dampness clinging to everything...oh, yeah, and driving home at midnight. It was a terrific weekend to do it though, right?
Saturday Brayden & I enjoyed some fun Mom & Son time with a trip south to a great town and our fav mexican restaurant and enjoyed some yummy ceviche! Oh...and he endured a trip to Hobby Lobby. It was good times. In case you haven't heard, college football season kicked off and in the SEC, it's business! So we had ESPN on the radio and he was literally running from TV to TV in the restaurant. Thankfully they weren't busy so it wasn't distracting others. But not only was he trying to keep up with the other conferences, we were on a strict schedule to be back home for our beloved Hogs kickoff! I've gotta say, I've told my hubby before how lucky he is to have a wife who loves football. But this kickoff weekend? By Sunday I was needing a break! My boys were hard core in the arrival of football season. I realized when looking at the sun coming through the windows, the cooler air, and football on - fall is definitely here! Where does the time go....
I was happily scrapbooking while listening to the Hogs on the radio at home that night. It was a great thing to feel like we all had a little more time with the extra day on the weekend. We typically dread Monday's because it's treatment day locally or we're making the drive to Little Rock and it means a 4am morning. Luckily, we all got a Monday off, as the local clinic was closed. So the weekend felt ESPECIALLY long for us and for Brayden. I loved getting some time to scrapbook. Then we enjoyed visiting with our sweet friends who came over Sunday afternoon as well as spending time with family.
Tuesday still came too quickly. We spent Sunday replacing a dryer that, honestly, looks brand new. Bummer...and thank goodness for wonderful friends who are so helpful. Anyway, my adorable, sweet boy informs me at 9 o'clock Monday night (even with a long weekend and me asking the same question on Friday), "Oh - Mom? I have 3 tests tomorrow." Great. Not sure what we can do about that with no time to spare the night before when we had extra time to study this weekend. Please tell me I'm not the only one? Is it a boy thing or a 10-yr-old thing? We're still working on that trying to let go and empower Brayden to be responsible for his work. Oh, that's tough. We want to encourage him to do his best and still hold high expectations. How high is too high?
So back to Tuesday. Brayden had a great time as usual at the local clinic. The oncology clinic is always very full the day after a holiday. It's so disheartening to see so many receiving treatment. I'm wondering if they're starting to dread Brayden's silliness & teasing of the nurses but I'm hoping it brightens their day to see him smiling and energetic and happy to see everyone. Brayden's definitely on a roll! His counts were great again!!!! He's definitely on the right trend to have his chemo increased to compensate for his recent growth. And, man, how many times lately have people commented on how big he's getting?!!? Steroids definitely are helping that but certainly a lot is also genetic with Dad coming in at 6'5". Brayden's doing his part to keep up. We were really so thrilled that Brayden's counts have remained so steady. I've gotten so rattled lately with him having a slight runny nose - most likely allergies like mom - and hearing of kiddos in class being sick already! Yucky strep...Thankfully, he's done great without incident. He was happy to get to go celebrate with another haircut. Wow, now it's really growing fast and thick! He looked like a mini me of his dad when they got back from his haircut. He's so precious!
Poor, sweet Hershey had to go in today for a sedation. Brayden was relating all to her in what he's gone through. She had to have a full cleaning on her teeth. With how docile she is, I'm betting she could have been fine to stay awake. But bless her heart! She's so out of it! I can't imagine putting her through this again next year! Brayden's lost his sympathy quickly for her wondering why she's still so out of it! It's been hours already! By now he's up & running and ready to eat after his sedations! We're hoping she feels much, much better tomorrow and doesn't hold it against us for trying to keep her healthy.
I was looking at a lot of pictures this weekend and came across the pictures from the weeks prior to Brayden's diagnosis and the days and weeks after. Amazingly, I don't even remember doing it, there are some pics of him from the ER that night & from ICU on my old cell phone that I developed. I hadn't been able to convince myself to look through them yet until this weekend. It was so staggering how at the time we thought he was fine yet looking back how fragile he looks. He was so thin in the weeks following and so weak. His little body was put through so much! It's amazing to see how much progress he continues to make. We're so thankful for all of your continued prayers. Each time someone asks me how he's doing, I am reminded of how blessed we are with how healthy he's remained even through the hard times and all the ups and downs and uncertainty. The risks are so great and he's remained on track and doing so well with his treatments.
We've got a big weekend coming up. Have I told you about Son's Day? When Brayden was about 4, he asked us about why there wasn't a holiday for Sons. There's a Mother's Day, Father's Day, Grandparents' Day...what about sons? I told him, "Sweetie - for you, every day is Son's Day." So true. But we kind of stumbled onto something fun and have continued the tradition. We've had to adjust it around this year & last year since it used to be in July. But we'll be celebrating this weekend. Sometimes we completely surprise him with fun activities for the day and other years we've let him plan every detail in advance from what time we get up to what we eat and so on. This year we've been working on some things we'd hoped to do with him sooner but we're glad his counts are good and we can finally celebrate. I can't wait to share more about it later!!
Saturday Brayden & I enjoyed some fun Mom & Son time with a trip south to a great town and our fav mexican restaurant and enjoyed some yummy ceviche! Oh...and he endured a trip to Hobby Lobby. It was good times. In case you haven't heard, college football season kicked off and in the SEC, it's business! So we had ESPN on the radio and he was literally running from TV to TV in the restaurant. Thankfully they weren't busy so it wasn't distracting others. But not only was he trying to keep up with the other conferences, we were on a strict schedule to be back home for our beloved Hogs kickoff! I've gotta say, I've told my hubby before how lucky he is to have a wife who loves football. But this kickoff weekend? By Sunday I was needing a break! My boys were hard core in the arrival of football season. I realized when looking at the sun coming through the windows, the cooler air, and football on - fall is definitely here! Where does the time go....
I was happily scrapbooking while listening to the Hogs on the radio at home that night. It was a great thing to feel like we all had a little more time with the extra day on the weekend. We typically dread Monday's because it's treatment day locally or we're making the drive to Little Rock and it means a 4am morning. Luckily, we all got a Monday off, as the local clinic was closed. So the weekend felt ESPECIALLY long for us and for Brayden. I loved getting some time to scrapbook. Then we enjoyed visiting with our sweet friends who came over Sunday afternoon as well as spending time with family.
Tuesday still came too quickly. We spent Sunday replacing a dryer that, honestly, looks brand new. Bummer...and thank goodness for wonderful friends who are so helpful. Anyway, my adorable, sweet boy informs me at 9 o'clock Monday night (even with a long weekend and me asking the same question on Friday), "Oh - Mom? I have 3 tests tomorrow." Great. Not sure what we can do about that with no time to spare the night before when we had extra time to study this weekend. Please tell me I'm not the only one? Is it a boy thing or a 10-yr-old thing? We're still working on that trying to let go and empower Brayden to be responsible for his work. Oh, that's tough. We want to encourage him to do his best and still hold high expectations. How high is too high?
So back to Tuesday. Brayden had a great time as usual at the local clinic. The oncology clinic is always very full the day after a holiday. It's so disheartening to see so many receiving treatment. I'm wondering if they're starting to dread Brayden's silliness & teasing of the nurses but I'm hoping it brightens their day to see him smiling and energetic and happy to see everyone. Brayden's definitely on a roll! His counts were great again!!!! He's definitely on the right trend to have his chemo increased to compensate for his recent growth. And, man, how many times lately have people commented on how big he's getting?!!? Steroids definitely are helping that but certainly a lot is also genetic with Dad coming in at 6'5". Brayden's doing his part to keep up. We were really so thrilled that Brayden's counts have remained so steady. I've gotten so rattled lately with him having a slight runny nose - most likely allergies like mom - and hearing of kiddos in class being sick already! Yucky strep...Thankfully, he's done great without incident. He was happy to get to go celebrate with another haircut. Wow, now it's really growing fast and thick! He looked like a mini me of his dad when they got back from his haircut. He's so precious!
Poor, sweet Hershey had to go in today for a sedation. Brayden was relating all to her in what he's gone through. She had to have a full cleaning on her teeth. With how docile she is, I'm betting she could have been fine to stay awake. But bless her heart! She's so out of it! I can't imagine putting her through this again next year! Brayden's lost his sympathy quickly for her wondering why she's still so out of it! It's been hours already! By now he's up & running and ready to eat after his sedations! We're hoping she feels much, much better tomorrow and doesn't hold it against us for trying to keep her healthy.
I was looking at a lot of pictures this weekend and came across the pictures from the weeks prior to Brayden's diagnosis and the days and weeks after. Amazingly, I don't even remember doing it, there are some pics of him from the ER that night & from ICU on my old cell phone that I developed. I hadn't been able to convince myself to look through them yet until this weekend. It was so staggering how at the time we thought he was fine yet looking back how fragile he looks. He was so thin in the weeks following and so weak. His little body was put through so much! It's amazing to see how much progress he continues to make. We're so thankful for all of your continued prayers. Each time someone asks me how he's doing, I am reminded of how blessed we are with how healthy he's remained even through the hard times and all the ups and downs and uncertainty. The risks are so great and he's remained on track and doing so well with his treatments.
We've got a big weekend coming up. Have I told you about Son's Day? When Brayden was about 4, he asked us about why there wasn't a holiday for Sons. There's a Mother's Day, Father's Day, Grandparents' Day...what about sons? I told him, "Sweetie - for you, every day is Son's Day." So true. But we kind of stumbled onto something fun and have continued the tradition. We've had to adjust it around this year & last year since it used to be in July. But we'll be celebrating this weekend. Sometimes we completely surprise him with fun activities for the day and other years we've let him plan every detail in advance from what time we get up to what we eat and so on. This year we've been working on some things we'd hoped to do with him sooner but we're glad his counts are good and we can finally celebrate. I can't wait to share more about it later!!
Thursday, September 2, 2010
I feel the need...the need, FOR SPEED!
Friday, August 27th - Little Rock Air Force Base - 53rd Airlift Squadron
Okay, so I'm a doofus in forgetting I already spilled the beans on here about Brayden's Pilot for a Day! I guess the surprise is when it happened? He was SO thrilled to be chosen 1 of 4 boys by his Social Worker at Children's to get to participate in this amazing opportunity. All 4 boys that went are receiving treatment or care at Children's for various reasons. It was neat to meet another Oncology patient & family. Little Rock Air Force Base has started this new program in allowing these kiddos to get to come on the base and be a Pilot for a Day! Last Friday, we started our day VERY early at 4am to drive to Jacksonville, AR, for the big event. Driving up on the base was incredible. We were greeted with a huge C-130 right on the parking lot. I was worried about Brayden touching anything but they were so encouraging that nothing was off limits.
Seriously, he was a joy to have around us that day and show us what being an Air Force Pilot is really all about. He was so down to earth and it was only when other personnel came in contact with him on the base we remembered, this is the real deal! Captain Jason and Sergeant Tom were amazing hosts and we were honored to be their guests for the day.
We were thankful to Capt. Jason for holding up the 40lb helmet so Brayden didn't collapse! The boys were able to tour the mobile command unit and disposal vehicle that they use to respond to bomb threats and that it's also used for some celebrities and foreign dignitaries. COOL! We asked if names of who she's protected is classified. Nice. Next, she introduced the boys to JERRK - Joint Effort Rapid Response Kommand Robot. While she began demonstrating all the buttons and controls of the robot, she was explaining how it is used to help protect soldiers by allowing the robot to get closer to the bomb. It was amazing to hear how they're using this technology to diffuse the bomb in order to be able to use the bomb components as evidence to catch more terrorists. To use the robot & diffuse a bomb is a huge victory in their work. She began to demonstrate how the robot works and was working to figure out why it wasn't moving. The best quote of the day was when Brayden said, "I think the safety is on." Bambi smiled & had to give Bray kudos for being so smart - it was on! Capt. Jason seemed to get as much of a kick out of that one as we did. I suddenly realized why he was over in the corner sitting on a tractor when Bambi handed the controls over to Brayden. He loved getting to maneuver the robot and it's shoulder, elbow, wrist controls to practice picking up a fake bomb. Bambi was amazed at how well the boys do when she's worked with Air Force Pilots who couldn't do that well with the robot their first time. I don't think Capt. Jason thought that was as funny as we did. Meanwhile...I swear I could hear the "Danger Zone" music playing in the background.
We next headed over to the runway. WOW! Were we ever up close! We were told the media would be there and Brayden wasn't too happy about the tv camera. But being able to climb inside a real C-130 on the runway made him forget about the camera all together! The boys were a flurry of activity being right on the runway & so close to the action of the planes landing & taking off back to back, jumping in the pilot seat & getting to check out all the buttons, the cargo area, and seeing how the real heroes return home from overseas in these planes. AMAZING!
Next up was a tour of the Air Force Fire Department. It was pretty neat to see when we got there, they were just returning from being out on a call! Thankfully everything was okay, but we found out 2 planes were coming in & 1 engine had gone out and another had a distress call on board. Wow! The boys were allowed to completely explore the fire engine and see one of the men demonstrate the imense fire-proof suit they have to wear. They boys were able to see how if they stop moving, there's a distress signal that is sent and how it has it's own breathing system for the men while they're in the suit. Brayden loved being able to climb into the fire engine and explore all around. Everything was SO BIG there! 
Oh, our final destination. The boys knew it was coming yet no one was prepared for how amazing it was. THE FLIGHT SIMULATOR! We had an instructor who is the most experienced on C-130 training and explained to us how this is how all pilots are now trained. They only fly in an actual plane 1 time before their training is complete. It costs nearly $6MM to train 1 pilot and only 1 hour in the flight simulator costs $20,000! Needless to say, the parents were all thankful for the 1 hour our boys got to spend but I know I felt a little guilty about the cost - WOW! We were surprised to learn we'd be able to go with the boys - 30 min flight, 6 people per trip, so we broke up into 2 groups. Brayden was the youngest boy that day but letting others go first was something his excitement erased that day! He was out the door first already on his way to the simulator with Capt. Jason. This thing was AMAZING! I'm getting dizzy just recalling it. You really felt like you were in a plane. The computer has so many abilities to make it any type of weather environment, any time of day, any location. Brayden got to start out taxiing down the runway of the actual Little Rock Air Force Base! It was SO realistic! He got to take off and I looked at Nini & the other Mom and realized what we were in for! Thankfully the instructor was at the computer to help 'lessen' the impact we might have felt of some of the maneuvers Brayden tried. I kept reminding him to listen to everything Capt. Jason was telling him and was SO thankful he was in the co-pilot seat. Brayden got to fly closer to the simulated downtown Little Rock, circle around, try to land, and then took back off again without stopping!! It wasn't too much longer he was starting to realize he was really in control and took a nosedive! We really felt it and thankfully the instructor helped stop the simulator before we all felt the effect of a crash! Here are some of Brayden's quotes from his 'flight':
The next boy got his turn to 'fly' and the instructor worked with him to refuel in air from another tanker! So cool. I sat by the control panel and got to see Brayden's flight path (big circles!) and kept marveling at how amazing this all really is! This is Brayden's picture that the Editor of the Base Newspaper took and displayed on their website for the event.
Okay, so I'm a doofus in forgetting I already spilled the beans on here about Brayden's Pilot for a Day! I guess the surprise is when it happened? He was SO thrilled to be chosen 1 of 4 boys by his Social Worker at Children's to get to participate in this amazing opportunity. All 4 boys that went are receiving treatment or care at Children's for various reasons. It was neat to meet another Oncology patient & family. Little Rock Air Force Base has started this new program in allowing these kiddos to get to come on the base and be a Pilot for a Day! Last Friday, we started our day VERY early at 4am to drive to Jacksonville, AR, for the big event. Driving up on the base was incredible. We were greeted with a huge C-130 right on the parking lot. I was worried about Brayden touching anything but they were so encouraging that nothing was off limits.
Our pilot guide told Brayden that plane was actually flown in Vietnam. WOW! Getting to meet Captain Jason who is a C-130 pilot was really neat. He exuded that pilot confidence you only see on tv - shades & all!
Seriously, he was a joy to have around us that day and show us what being an Air Force Pilot is really all about. He was so down to earth and it was only when other personnel came in contact with him on the base we remembered, this is the real deal! Captain Jason and Sergeant Tom were amazing hosts and we were honored to be their guests for the day.Once we met the 3 other boys and their families, we were off to our first stop - the beautiful outdoor museum. There were several plans & helicopters on display along with a time capsule the boys thought was really cool. Seeing all of this up close was surreal to think about how each is used to help protect our country and freedom.
The next stop was touring the EOD - Explosive Ordinance Disposal facility. We got to meet the awesome Ms. Brown (please forgive me for forgetting her title!). She was incredible and really gave me that "You Go GIRL!" moment. She had literally just returned from Afghanistan a couple weeks prior. This phenomenal soldier is actually over there diffusing bombs and working to keep our troops and the people safe from terrorists. If you've seen the Hurt Locker movie (we haven't), she pointed out how accurate it is to what her job really is each day. She demonstrated her bomb suit which weighs over 70lbs. Her helmet alone is 40lbs! It was amazing to hear her tell us how the owner of the company that makes the bomb suits ($50k each!) demonstrates the effectiveness of the suits by putting them on himself and getting blown up on camera to prove how safe the suit is for our troops! Bray thought that reminded him of Ironman.
We were thankful to Capt. Jason for holding up the 40lb helmet so Brayden didn't collapse! The boys were able to tour the mobile command unit and disposal vehicle that they use to respond to bomb threats and that it's also used for some celebrities and foreign dignitaries. COOL! We asked if names of who she's protected is classified. Nice. Next, she introduced the boys to JERRK - Joint Effort Rapid Response Kommand Robot. While she began demonstrating all the buttons and controls of the robot, she was explaining how it is used to help protect soldiers by allowing the robot to get closer to the bomb. It was amazing to hear how they're using this technology to diffuse the bomb in order to be able to use the bomb components as evidence to catch more terrorists. To use the robot & diffuse a bomb is a huge victory in their work. She began to demonstrate how the robot works and was working to figure out why it wasn't moving. The best quote of the day was when Brayden said, "I think the safety is on." Bambi smiled & had to give Bray kudos for being so smart - it was on! Capt. Jason seemed to get as much of a kick out of that one as we did. I suddenly realized why he was over in the corner sitting on a tractor when Bambi handed the controls over to Brayden. He loved getting to maneuver the robot and it's shoulder, elbow, wrist controls to practice picking up a fake bomb. Bambi was amazed at how well the boys do when she's worked with Air Force Pilots who couldn't do that well with the robot their first time. I don't think Capt. Jason thought that was as funny as we did. Meanwhile...I swear I could hear the "Danger Zone" music playing in the background. We all cheered when Brayden was able to successfully pick up the fake bomb with the robot hand. It's amazing to think if this were a real EOD, it would only take 1/2 lb of pressure to detonate it. How incredible that this is her job!!
I saw Capt. Jason peeking outside through the windows while the boys were operating the JERRK robot and was wondering what he was smiling and in awe about...then I saw it. The SEGWAY!! Capt. Jason was sure to the let the boys know he'd never gotten to ride the segway before. Bambi then showed the boys how the Segways are used to assist them in diffusing the bombs. No wonder - with the 70lb suit & 40lb helmet, the segway is a big help in getting them to the bomb location quicker AS WELL AS getting them away from it quicker. I took some deep breaths & tried not to be the over-protective mom of the group. The boys watched with wide eyes as she demonstrated how to ride the segway. The other mom was in disbelief that someone on base didn't get the memo & parked their BMW out there! No one told them there would be 4 boys on the base learning to drive/ride a segway within close proximity! Thankfully there were helmets and Bambi did a great job of staying right with Brayden. Everytime he'd come close to where he started out, he'd do a QUICK turn and head back out the other way. You could tell he was loving it and didn't want his ride to end.
Brayden's attention as soon as the segway ride ended was on the airstrip right next to us. You could see the C-130's taking off then coming back in to land. Bambi explained to him that this is how they practice and they do routes around Little Rock. We couldn't believe how close they were and it was so neat to watch. Little did we know how much closer we would get! It was really neat to tour the Ammunition Room. There were SO many different bombs & shells and the boys were free to explore. Brayden thought it was really neat to be holding a 50 caliber shell, hand grenades, and this cool bazooka thing he had on his shoulder. We were clueless but the boys thought it couldn't be cooler.
We next headed over to the runway. WOW! Were we ever up close! We were told the media would be there and Brayden wasn't too happy about the tv camera. But being able to climb inside a real C-130 on the runway made him forget about the camera all together! The boys were a flurry of activity being right on the runway & so close to the action of the planes landing & taking off back to back, jumping in the pilot seat & getting to check out all the buttons, the cargo area, and seeing how the real heroes return home from overseas in these planes. AMAZING!
The next stop was to the 53rd Airlift Squadron for lunch with all the pilots! This was really neat to hear stories of those who had just returned from overseas or who was missing because they had just deployed. There was a special honorary 'Winging' ceremony for each boy to receive their very own flight suit, scarf, and token. This was very special and a big deal. Not only did Brayden get to sit with Sgt. Tom & Capt. Jason and enjoy some yummy pizza, the guys really went out of their way to make him feel at home and very honored. As soon as Brayden received his flight suit, he looked to Capt. Jason for approval & took off! I told him I only could hope that Brayden didn't return with his flight suit on with his clothes in hand!!! I definitely made sure to ask about the care of the flight suit & they were quick to assure me they are machine washable. I told them, "Good, because I have no idea how I'm going to talk him into getting out of this thing!" Brayden was so proud to show back up in his very own custom flight suit with his own name badge. Sure enough, he literally wore it the rest of the day, on the way home in the car on the long 3 1/2 hour drive, out to a restaurant for dinner and then couldn't understand why everyone was staring at him!! He just needs his own pair of aviators and he's really set! Cue "Danger Zone" music again.
After telling the boys about how much water the BIG fire engine holds, they took them outside and let them climb into the monster. I wish I remembered what it was called, but we thought it was really cool how this thing can shoot water inside the plane in case of a fire. They warned the boys not to be close by when the water shoots out! Each boy was allowed to sit in the driver's seat & push the buttons to spray out the different water shoots depending on the type of fire. It was really neat to see how high the sprayer would go and how loud & strong the water was!
Oh, our final destination. The boys knew it was coming yet no one was prepared for how amazing it was. THE FLIGHT SIMULATOR! We had an instructor who is the most experienced on C-130 training and explained to us how this is how all pilots are now trained. They only fly in an actual plane 1 time before their training is complete. It costs nearly $6MM to train 1 pilot and only 1 hour in the flight simulator costs $20,000! Needless to say, the parents were all thankful for the 1 hour our boys got to spend but I know I felt a little guilty about the cost - WOW! We were surprised to learn we'd be able to go with the boys - 30 min flight, 6 people per trip, so we broke up into 2 groups. Brayden was the youngest boy that day but letting others go first was something his excitement erased that day! He was out the door first already on his way to the simulator with Capt. Jason. This thing was AMAZING! I'm getting dizzy just recalling it. You really felt like you were in a plane. The computer has so many abilities to make it any type of weather environment, any time of day, any location. Brayden got to start out taxiing down the runway of the actual Little Rock Air Force Base! It was SO realistic! He got to take off and I looked at Nini & the other Mom and realized what we were in for! Thankfully the instructor was at the computer to help 'lessen' the impact we might have felt of some of the maneuvers Brayden tried. I kept reminding him to listen to everything Capt. Jason was telling him and was SO thankful he was in the co-pilot seat. Brayden got to fly closer to the simulated downtown Little Rock, circle around, try to land, and then took back off again without stopping!! It wasn't too much longer he was starting to realize he was really in control and took a nosedive! We really felt it and thankfully the instructor helped stop the simulator before we all felt the effect of a crash! Here are some of Brayden's quotes from his 'flight':
- "SWEEEEET!!!"
- "You guys, I'm probably never going to be a co-pilot again!"
- "Hope there's an emergency brake in here!"
- "Mom, are you seeing this?"
- "Should I get the oxygen tank?"
- While taking a dive..."I just did that to get you guys' attention."
- "Yeah, uh, I was crashing from 30,000 feet, but at least I landed on soft grass"
- "Uh, Captain Jason! Help me here!"
- Then, on the way home later while recalling the incredible events - "I really flew that bird"
The next boy got his turn to 'fly' and the instructor worked with him to refuel in air from another tanker! So cool. I sat by the control panel and got to see Brayden's flight path (big circles!) and kept marveling at how amazing this all really is! This is Brayden's picture that the Editor of the Base Newspaper took and displayed on their website for the event. What a day! I've never been so tired on one of our trips to Little Rock. But it was SO worth it. Brayden insisted on keeping his flight suit on and was exhausted & snoozing before we were too far away from the base. We were sad to say goodbye to these real life heroes who went so far out of their way to celebrate these special boys fighting their own battles at too young of an age. This was truly a dream come true for Brayden and he knows he got to do things many people just wish of being able to do! It was an honor to meet each soldier and we owe them a huge debt of gratitude for their service. We feel like thank you is just not big enough but THANK YOU for this incredible honor of being able to spend this incredible day with you! Thank you to ACH and Carrie for nominating Brayden to be able to take part in such a special event. Thank you to everyone at Little Rock Air Force Base for making us feel so welcome and allowing us to see Brayden so full of joy and excitement and getting an escape from his battle. Special thanks to Nini for going with us, helping to capture all these important and once in a lifetime memories, quotes & pictures, as well as helping to keep me awake on the drive home! I hope you all enjoyed sharing in Brayden's amazing day. I didn't think we'd ever be able to sum it all up since we were on overload from all the neat things he was able to experience. PS - we're already thankful the flight suit is machine washable!!!
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