Brayden's sweet Uncle Danny wrote this for him. The day he sent it to me and Bryan we just lost it. It's so beautiful and was such an amazing way of sharing his special gift with Brayden in such a special way. I asked him if it was okay to post here and he agreed. I just never thought it would take me this long! We're so thankful for amazing friends in our lives who have truly brought so much more love and joy to each of us! We can't imagine this last year without you guys! You dropped everything to be with us in Little Rock when we heard the news. I'll never forget that horrible phone call to you & solid words back to tell Brayden his Uncle Danny was on his way. Oh, my heart broke into a million pieces. You stood strong with us in knowing Brayden would fight and make it through. You've laughed with us, worried with us, and we love you both so much!!
What do you think of in the morning
When the sun starts to rise
Most of us think coffee and work
And never really realize
For what is going on
Cause it’s hidden by their grins
It’s a deadly disease called cancer
Who knows when it started
Or how it might end
The journey is long and weary
And may last for years
Your faith will be tested
And your eyes full of tears
But he wears his grin
Just to show you how to be strong
For he is not afraid of the journey
Cause he knows he’s not alone
For in his eyes you can see
The power he has to win
So believe it in your hearts
As he already does with his grin
The space is now empty
Where once something was
He body is free
Of this deadly cause
It will take time
But the pace can be slow
Take this opportunity
To watch the little man grow
And I have one big wish
I would love to pass along
I wish all the other little grins
Were as strong as
BRAYDEN K. JONES
Jones Family
November 2009
Saturday, February 20, 2010
Where has the time gone?
I'm so sorry to all of our devoted readers for leaving you in a lurch. I did a double-take tonight. It's been one month tomorrow since I did an update here? There's no way! I guess since we're living it day in, day out, I forget to keep everyone in the loop. My mind can't even comprehend it's been one month. I promise to try harder in the coming days and weeks to keep everyone updated. I will tell you your comments are such an encouragement to uplift our family. I think I may have started to doubt if we really still have readers or active followers, so I held back. That, in addition to a crazy several weeks with a flurry of activity have kept me from posting. But, I'm back. Please feel free to send any questions you may have. We love each of you and want to be sure we continue to share in ways that help you to see where Brayden is at in his journey and help you to know how to agree with us in prayer for his protection and healing.
Well, the biggest news is Brayden made it through the 1st month of Maintenance Chemotherapy with flying colors! His counts stayed steady and he did so well. All the crazy snow here at home and then in Little Rock held us back from making the trip. So we continued here at the local Oncology clinic. Since my last update, his bone pain from Radiation finally began to subside after the 5th week. So thankful!! Then...2 weeks ago, his counts didn't quite come up to where they had the time before with the round of steroids. I knew we had been warned this would happen. Sure enough, this last week's Monday chemo showed his counts hovering above the Neutropenic range, but still high enough to proceed with chemo. That's tough because you know it's going to drop his counts again, but we need the chemo to keep working and prevent new Leukemia cells from forming. We know skipping a dose of his weekly chemo was a likelihood and very common in this phase of treatment, but were hoping we could avoid it. I've grown from being terrified of the chemo hitting his body, watching it be pushed into the port just above his heart, to being thankful for it because it's working to save our sweet boy. So now facing a trip to the Oncology clinic on Monday and worrying his counts won't be high enough to receive that dose of chemo has me concerned. We're praying his counts rebound but stay within a good range so that he can continue with his treatment but not be too high. It's a delicate balancing act.
When he started the 2nd month of Maintenance, he kicked it off with the 5 days of steroids again. We were prepared and ready with healthy snacks, knowing he eats more. But this time was far different. At the same time, it was decided his counts were a bit high the month before, so his weekly chemo dosage was increased. He received an increased dose of the Methotrexate, another round of Vincristine, then continues the nightly chemo med at home. We don't know what was different, but it was such a shock to us. After 6 good weeks, we forgot about how bad the nausea can be. His bright eyes were dull again. Suddenly he was sleeping 16 hours a day from bedtime until 1 and 2:00 in the afternoon. It was so incredibly hard to be reminded of all those feelings and worry again. He had just been looking SO good. So the last 2 weeks have been tough. His appetite has made a SIGNIFICANT drop in the past 2 weeks as well. We're working on eating as good as possible and not drinking calories, even from V8 or OJ to try and ensure he doesn't fill up from drinking. It's ben tough to see him so vulnerable again. And even in the toughest days, I don't remember him being so weak, so exhausted, and just dragging so much. What hit my heart the hardest was hearing him say he felt like he was in the hospital again. Those days came back like a flood. I guess I try to stay present and focused on the here and now and to reflect on those days or be thrown back to them in that moment with Brayden just broke my heart.
Thankfully before all this hit, he had a couple GREAT days. We got to see a movie again. He got to eat out at 2 of his favorite restaurants, 1 with our sweet friends. He got to enjoy the Super Bowl at our friends' house and still cheer a little bit (before he crashed) even though his 'Boys weren't playing. He got to go with me to the new Neighborhood Market later one evening. You would have thought it was a toy store! He was so happy just to be out and after not being in a store for so many months, it was a thrill for him to shop a bit for some healthy snacks. He was able to visit his buddies at Mom's old office at Jack Link's and sweet talk them into some jerky and some fun stuff. He was especially thrilled to get to see his friends at school for an hour. He even got to have a sleepover at Nini's and to be able to have a night away from Mom & Dad had him more than excited and asking for another night away! Finally, his cousin celebrated his birthday at Fast Lane, the same place Brayden got to have his party at last year. It was just 3 weeks prior to his diagnosis that he had his party there and it had been at the top of his list to get to go back. We never dreamed it would be this long. So that was a really nice celebration for him. But even in that fun time, he was still a boy who, under the surface, didn't have the stamina or ability to run with the other boys. He took it all in stride and we're planning the next trip back. We've all been so thankful for those opportunities he's had to feel 'normal' again.
We're praying Brayden is able to bounce back soon. With his counts so low, we're back on guard with germs, following all the old precautions we were able to let slide for the past 6 weeks. The reminder of his Oncologist's warning to me that even the slightest cold could give him a huge setback has us praying also for his protection from any germs. He's done so great so far, so we're praying that continues.
A big celebration is quickly approaching. 10 months tomorrow will mark the time that has passed since Brayden's diagnosis. His 10th birthday coming up is followed closely by the 1 year mark. We're working on planning a special "Celebration" for him that we would love to share with you. There have been some special things for us that he's had to miss, like the Spirit Night and the Blood Drive. We're hopeful that this also marks the 12-week end of the first rotation of his Maintenance cycle. Another 12-week cycle will begin, but this will be 90 days beyond when he began Maintenance and when we're hoping he can return to school. So there are so many milestones to celebrate. We'll share more information soon, but for now, if you would like to join us, we're planning on offering the opportunity to bring donations for Arkansas Children's Hospital in lieu of gifts for Brayden. We're working to coordinate another blood drive, so that those who gave in December will be able to give again! If you would like to join us, please email us at jonesfam4877@att.net.
Before I go, I wanted to share another piece of BIG news that happened last week. Brayden's sweet bald head started to show some little black dots! Each day we'd see the changes and his little eyebrows are coming back in too! I'll try to post a new picture soon so everyone can see how his hair is coming back in! His nurses last week were so surprised to see this big change! It's SO soft! I guess if he thought I kissed his head a lot before, I really am now! It's a great sign of life and his recovery and a little peak at normalcy creaping back in for him. We can see so much excitement on the horizon for him and can't wait.
What's next is another weekly Oncology appt Monday then Little Rock the following week. We're praying for his protection. He started to complain of numbness in one of his fingers. My heart stopped. So far the neuropathy caused by the Vincristine was isolated to his legs. He takes a pill 3 times a day to help with this. We knew that if it spread, it can cause permanent damage to him. Many times the Vincristine will be stopped as part of the monthly chemo regimen to prevent that damage. We hope and pray that this doesn't continue because we know this Chemo is key to the success rate or Leukemia Remission. Please pray with us? Love and blesings to all of you!!!
Well, the biggest news is Brayden made it through the 1st month of Maintenance Chemotherapy with flying colors! His counts stayed steady and he did so well. All the crazy snow here at home and then in Little Rock held us back from making the trip. So we continued here at the local Oncology clinic. Since my last update, his bone pain from Radiation finally began to subside after the 5th week. So thankful!! Then...2 weeks ago, his counts didn't quite come up to where they had the time before with the round of steroids. I knew we had been warned this would happen. Sure enough, this last week's Monday chemo showed his counts hovering above the Neutropenic range, but still high enough to proceed with chemo. That's tough because you know it's going to drop his counts again, but we need the chemo to keep working and prevent new Leukemia cells from forming. We know skipping a dose of his weekly chemo was a likelihood and very common in this phase of treatment, but were hoping we could avoid it. I've grown from being terrified of the chemo hitting his body, watching it be pushed into the port just above his heart, to being thankful for it because it's working to save our sweet boy. So now facing a trip to the Oncology clinic on Monday and worrying his counts won't be high enough to receive that dose of chemo has me concerned. We're praying his counts rebound but stay within a good range so that he can continue with his treatment but not be too high. It's a delicate balancing act.
When he started the 2nd month of Maintenance, he kicked it off with the 5 days of steroids again. We were prepared and ready with healthy snacks, knowing he eats more. But this time was far different. At the same time, it was decided his counts were a bit high the month before, so his weekly chemo dosage was increased. He received an increased dose of the Methotrexate, another round of Vincristine, then continues the nightly chemo med at home. We don't know what was different, but it was such a shock to us. After 6 good weeks, we forgot about how bad the nausea can be. His bright eyes were dull again. Suddenly he was sleeping 16 hours a day from bedtime until 1 and 2:00 in the afternoon. It was so incredibly hard to be reminded of all those feelings and worry again. He had just been looking SO good. So the last 2 weeks have been tough. His appetite has made a SIGNIFICANT drop in the past 2 weeks as well. We're working on eating as good as possible and not drinking calories, even from V8 or OJ to try and ensure he doesn't fill up from drinking. It's ben tough to see him so vulnerable again. And even in the toughest days, I don't remember him being so weak, so exhausted, and just dragging so much. What hit my heart the hardest was hearing him say he felt like he was in the hospital again. Those days came back like a flood. I guess I try to stay present and focused on the here and now and to reflect on those days or be thrown back to them in that moment with Brayden just broke my heart.
Thankfully before all this hit, he had a couple GREAT days. We got to see a movie again. He got to eat out at 2 of his favorite restaurants, 1 with our sweet friends. He got to enjoy the Super Bowl at our friends' house and still cheer a little bit (before he crashed) even though his 'Boys weren't playing. He got to go with me to the new Neighborhood Market later one evening. You would have thought it was a toy store! He was so happy just to be out and after not being in a store for so many months, it was a thrill for him to shop a bit for some healthy snacks. He was able to visit his buddies at Mom's old office at Jack Link's and sweet talk them into some jerky and some fun stuff. He was especially thrilled to get to see his friends at school for an hour. He even got to have a sleepover at Nini's and to be able to have a night away from Mom & Dad had him more than excited and asking for another night away! Finally, his cousin celebrated his birthday at Fast Lane, the same place Brayden got to have his party at last year. It was just 3 weeks prior to his diagnosis that he had his party there and it had been at the top of his list to get to go back. We never dreamed it would be this long. So that was a really nice celebration for him. But even in that fun time, he was still a boy who, under the surface, didn't have the stamina or ability to run with the other boys. He took it all in stride and we're planning the next trip back. We've all been so thankful for those opportunities he's had to feel 'normal' again.
We're praying Brayden is able to bounce back soon. With his counts so low, we're back on guard with germs, following all the old precautions we were able to let slide for the past 6 weeks. The reminder of his Oncologist's warning to me that even the slightest cold could give him a huge setback has us praying also for his protection from any germs. He's done so great so far, so we're praying that continues.
A big celebration is quickly approaching. 10 months tomorrow will mark the time that has passed since Brayden's diagnosis. His 10th birthday coming up is followed closely by the 1 year mark. We're working on planning a special "Celebration" for him that we would love to share with you. There have been some special things for us that he's had to miss, like the Spirit Night and the Blood Drive. We're hopeful that this also marks the 12-week end of the first rotation of his Maintenance cycle. Another 12-week cycle will begin, but this will be 90 days beyond when he began Maintenance and when we're hoping he can return to school. So there are so many milestones to celebrate. We'll share more information soon, but for now, if you would like to join us, we're planning on offering the opportunity to bring donations for Arkansas Children's Hospital in lieu of gifts for Brayden. We're working to coordinate another blood drive, so that those who gave in December will be able to give again! If you would like to join us, please email us at jonesfam4877@att.net.
Before I go, I wanted to share another piece of BIG news that happened last week. Brayden's sweet bald head started to show some little black dots! Each day we'd see the changes and his little eyebrows are coming back in too! I'll try to post a new picture soon so everyone can see how his hair is coming back in! His nurses last week were so surprised to see this big change! It's SO soft! I guess if he thought I kissed his head a lot before, I really am now! It's a great sign of life and his recovery and a little peak at normalcy creaping back in for him. We can see so much excitement on the horizon for him and can't wait.
What's next is another weekly Oncology appt Monday then Little Rock the following week. We're praying for his protection. He started to complain of numbness in one of his fingers. My heart stopped. So far the neuropathy caused by the Vincristine was isolated to his legs. He takes a pill 3 times a day to help with this. We knew that if it spread, it can cause permanent damage to him. Many times the Vincristine will be stopped as part of the monthly chemo regimen to prevent that damage. We hope and pray that this doesn't continue because we know this Chemo is key to the success rate or Leukemia Remission. Please pray with us? Love and blesings to all of you!!!
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