Jones Family

Jones Family
November 2009

Tuesday, August 31, 2010

Another great week

Brayden's results turned out great again Monday when we went to the local clinic for chemo. 4 weeks to go and his chemo should be increased to keep up with his growth. We keep trying to remember this is a good thing! We're very thankful his counts have remained strong and steady for a while now. He's staying busy in school and has been wearing himself down a bit from all the increased activity with recess, PE, and keeping up with the boys. We know it's a good thing. He's been having more pain in his legs again from the Vincristine chemo drug's effect on his neuropathy. All in all though, he's still doing so well. We're really thankful.

I've got to get some pictures uploaded from his big event Friday. I don't know how I'll be able to keep it brief since there was SO much excitement!! Hopefully I'll be able to post very soon with the details. Stay tuned!

Thursday, August 26, 2010

2 year Countdown

Well, we're 1 week in to 5th grade and things are going great! Brayden has been SO responsible for his work, we've really been proud of him. He's been a little tired at night. The first night he crashed in the floor while watching some football, so you know he had to be tuckered out to miss seeing a pre-season game. We definitely can tell he's been playing his heart out at recess and is so glad to be back with his friends. Each day he wakes up eager to get going and has been reading on his own at night, laying out his clothes - wow. He's really growing up!

Monday's chemo & bloodwork this week at the local clinic yielded amazing results! Brayden's counts were super high for the first time in SOOOO long! We knew they would be after a week of steroids, but we didn't think that high. Let's hope this is an indication his system has rebounded. His sweet nurse in Little Rock at Children's showed me his chart and how he's had a good 5-week trend of counts in the 'safe' zone. But until they come up into a higher zone for 6 straight weeks, we can't increase his chemo. His chemo should have been increased in June, but his system was too low to handle it. Our little man is growing and has grown since the 3 months prior and it causes his chemo dosage to have to be adjusted to compensate for his 1 inch taller and couple of pounds bigger. Did I mention he's wearing size 11 shoes & is 5'1" plus some!?!? So once we see his system becoming stronger, his steroid & weekly antibiotic (to prevent pneumonia) has already been increased and then his nightly chemo, weekly chemo, and monthly chemo dosages will also be increased. We were all concerned however if we had done this sooner, it would have sent his counts bottoming out again and in the Neutropenic range. We didn't want another hospitalization. It's hard to grasp that even though his counts are safe right now, they are still DRASTICALLY lower than the average child. I was reading about more recalls this week. Of course these all say the average person would be fine, but in people with compromised immune systems, it can be lethal. Well, Brayden has been and will continue to live with a compromised immune system for 2 more years. It's a good reminder for us to continue to be vigilant with his health and not let up for a second. I think some people probably tease or think we're crazy. But the fear you feel when his weak immune system is in danger because of a cut or small virus, or flu, it can be so scary that it ignites that protection for him during the times when it appears all is well. Hopefully he'll continue with a good trend the next 5 weeks and we can bump up his chemo. Again, strange to be hoping for a stronger chemo dose, but we want to be sure he's receiving all he can so that it can do the work it needs to in order to ensure the Leukemia NEVER returns again.

This visit to Little Rock was more fun for us. We laughed a lot with his awesome Oncologist and hearing his stories. We FINALLY remembered to ask for a picture with him. We also remembered to take some pictures of him outside of the hospital like he's been asking to for a while. We're always eager to get inside once we arrive at the hospital and then so eager to leave after being there usually 5 hrs that we never remember to stop and take some pics. They turned out so well and I'm so thankful for those memories of Brayden in front of the ACH logo. He truly is resilient with this battle and we're so proud of him.

August 2010 marks a big countdown. Brayden's end of treatment will be in August 2012. He'll be 12 and be about to enter 7th grade. Wow. We did some calculations recently and he's exceeded 5,000 pills taken since his diagnosis. He LOVED hearing that feat! He's such a pro now with his pills! He can down all 3 of his morning pills in one gulp and is pretty proud of his accomplishment! His nightly 5-12 pills (depending on the day of week) take him seconds now. He's come so far since first learning how to swallow pills at all!

We've got a couple of follow-ups coming for him in his treatment that we need your prayers for. He's going to see an Orthopedic Specialist about the ligaments in his foot. He made need a corrective shoe insert to help his walk which the Neuropathy in his legs isn't helping. His leg pain was better in July but the last 2 weeks he's been hurting more again. I bet being more active at school is helping in some ways but bringing more pain too. He wants to keep up with the other kids so badly. He also will be seeing a Urologist for some other things that we were worried about earlier on in his treatment. Secreting so many toxins with all the chemo drugs can really wear down his system. Thankfully his liver enzymes have still been better, but his bladder and other things we want to be sure is doing okay. He's on some preventative daily meds just to be sure it doesn't cause other infections, but his Oncologist wants to be sure he's doing okay internally. I'm so glad Brayden's an awesome water drinker as that has to help somehow.

We've got something BIG coming tomorrow! I can't wait to post & share pictures on an amazing opportunity for Brayden. We've been so excited for this and we're thankful for cooler weather today to hopefully help make an awesome day even better. Thank you all for your love, prayers, & support!!

Thursday, August 19, 2010

Happy 1st Day of 5th Grade!

What an exciting day! We had our doubts a few months back whether or not Brayden would be able to re-join his friends for the first day of school. He's certainly had a rough start to the summer with 2 blood transfusions, neutropenic isolation, a hospitalization, and having to miss chemo for the first time. Thankfully, he's been on a great streak the past 5 weeks with much better results. So after getting to surprise him by sneaking away to WM one evening when we hoped it wasn't crowded, he got to pick out his own school supplies for the first time in 2 years. His diagnosis came one month before 3rd grade was over and was in full force all of 4th grade. It's almost unreal to try and wrap my brain around that. He's endured so much already. The good news was seeing his excitement when we told him what we were up to. He loved getting to pick out his own stuff. Back at home, he packed & re-packed his backpack so many times staging all his new goodies. We were so thankful when his results last week in Little Rock let us know for sure he was starting out the week with better counts and with this being a steroids week, he would for sure get to join his friends for the big 1st day!

We were able to meet his 5th grade teacher the week before school started. Bryan and I have been so excited that he would have a strong male influence this year. We absolutely love his teacher and his ideas, his plan, his strategy. We're thrilled about possibly having to be so involved in his day to day schoolwork like we have been for all of 4th grade. The kids at school certainly have a healthy fear for this teacher, being a Chaplain in the Military. But we're pumped for the structure, discipline, yet fun that comes with it.

Brayden and I planned out while we were in Little Rock his lunches since we have to make his lunch each day for school. We had to go back over the Germ-X plan and reiterate using those Clorox wipes on his table at school before eating lunch. We stressed drinking plenty of water and hoped he wouldn't overdo it. He put in his request for his special 1st day of school breakfast and I was so thrilled to be planning this for him. He was so excited and so looking forward to normalcy again with his class. The night before he confessed he was nervous. I can't imagine what he must be feeling. Everyone has witnessed what he's been through and they know his story. But with that comes amazing support, love and encouragement. We have been so blessed by this school and are thankful for the families within it.

The big first day Brayden beat his alarm clock out of bed. He had layed out his own clothes the night before and beat me into the kitchen to start prepping his lunch. Wow how the first day of school times have changed. My little man is growing up. I relished those special things for the first day and realized he's wanting that responsibility and taking ownership. It's a great thing, but sad for me to see how his needs for his Mom are certainly changing. I was so proud of how prepared and ready he was & of course had to get our traditional pictures. We loved that drive again to school in the beautiful sumemr mornings. Brayden had to stop on the creek and roll down our windows again to listen to the water. Ahhh...traditions and the comfort of normalcy. Except for remembering all his morning meds, it's almost like everything else going on under the surface wasn't there for a minute.

Thankfully, Brayden tried to give me a hard time the night before about me walking in with him. I would have been worried if he didn't. But I think he knew by my look back to him that there was NO way I was giving up the morning picture tradition! He obliged me and I promised to not over-do it. As soon as we were out of the car, he was running into school, he just couldn't get to the door fast enough. He was so excited about this last year of elementary school and the bigger desks, the change in responsibilities. We were happy to see some new faces and another boy! With only the same 3 boys in class, I think they were happy to not only have a male teacher but another boy to get closer to evening out the score with the girls! It was tough to tell him goodbye but I was filled with happiness for him getting to enjoy the normal 10-year-old things of life.

That afternoon, we continued with our tradition since Kindergarten of a cookie from Jimmy John's and debriefing us on the day's activities. His favorite part of the day was recess. He loved getting to play soccer again with his 'boys.' Ahhh...breathing in normalcy.

Sunday, August 15, 2010

Full Circle

What a week! Brayden soared in his blood results. This being the week we thought they would be the lowest, his counts held steady & he was able to continue his chemo regimen without interruption - yeah!! We were astonished and so thankful to see his ANC's holding steady, his hemoglobin still looking good with the 2 previous blood transfusions from just a few weeks prior still echoing in my head. We celebrated the great results with some yummy sushi for dinner. The highlight of the week was meeting his new teacher! Bryan and I had shared a couple of high-5's after hearing some of the plans for the year. We know this is going to be so good for Brayden.

Even with all the heat, Brayden managed to enjoy some fun fishing with Dad, playing outside in the water and laughing our heads off at Hershey on a daily basis. Hershey turned 7 and we celebrated by torturing her with barks & howls and laughing until our stomachs hurt at her cuteness. One night we had a fun time eating at one of our favorite local places and saw a table full of about 25 people. We couldn't help but notice their Arkansas Children's Hospital t-shirts. My wonderful company has been a repeat sponsor of a wonderful charity each year to benefit ACH. Knowing this week was a big week for the charity, I quickly put the pieces together. It was neat hearing their leader encourage the volunteers for all that they would be enduring over the next several days in the grueling heat and reminding them what was most important: the kids. I couldn't help myself. I begged Brayden to let me say something. Finally, as everyone was leaving, I spoke out to the leader thanking her for all they were enduring. I introduced her to Brayden and she introduced herself. Wow...this was the same sweet lady who had called us during the early days when Brayden was in the PICU and offered her help. Both my former company and current company reached out to her & the Foundation and we were so moved at their willingness to help us in any way we needed. At that time, we had no idea what we needed, but it was so reassuring to hear her reach out. Fast forward to now she's here right in front of us and we're finally getting to meet. She was so sweet talking to Brayden about his Dr. and his treatment plan. We thanked them again for all that they're doing.

The next night, we used our tickets each sponsor company receives to attend a beautiful gala. It was truly amazing. So many familiar faces & a few celebrities. All of this to raise money for ACH. I was dreading the dressing up part & social aspect of the night. But what pushed me into going was that it was for such a good cause. Hearing the story of the family that was ACH family of the year was gut-wrenching. It was amazing how quickly it took me back to the early days of so much uncertainty. Hearing the Mom talk about the Angel 1 flight literally brought it all flooding back to me again. My emotions were so overwhelmed with it all and praying one day we'll be celebrating Brayden's full recovery & clean bill of health. Seeing the family in person with their son who had been treated as a preemie at ACH was certainly moving. It was remarkable to see how much money was raised in such a short amount of time. I felt so thankful for each person who gave of their time and money for the event, since we see once a month the fruits of their labor and have felt it first-hand. It truly was a full-circle evening. Hearing of the events in years past and always being reminded of things that we did for the foundation in hopes that it would help others, being thankful ACH was there & praying you never had to be a recipient of its services. And yet we have, and I realize now more than ever how thankful we are to so many contributors. Thank you to each one of you for all that you did to help! It was nice being able to laugh with the girls and seeing so many sweet, friendly faces, and hearing others ask about Brayden's progress. I was thankful we've had a great 4 weeks to report and share. And it makes me yearn even more for the days of normalcy ahead.

Friday, August 6, 2010

Countdown to breaks, school, & flying!

I can't believe another week has flown by! Things outside of home & family have been insane this week: long hours at work, both vehicles being in the shop, and the list goes on. Thankfully, there have been people around reminding me of what's most important: my two sweet boys at home. Brayden had a great Oncology appt Monday. His counts had dipped a bit but he was still in a good range to still get chemo. I'm really curious if he'll hold and make counts Monday. But, one week at a time, right?

So for this week, he's doing great. He can't stop talking about the school countdown. He'll be on steroids the week that school starts, so we're hopeful he'll be able to return back with his friends. He's been packing, un-packing & re-packing his backpack! He's so excited about his teacher and we're excited for a strong, male influence this year who is great at instilling a little bit of healthy fear into the students! Brayden's the perfect age to have this impact so Mom & Dad are very excited about 5th grade!!

We're hopeful for a fun break coming up - more to follow as we count it down. We all need a chance to re-charge our batteries together. This week, Mom enjoyed a birthday. My silly boy has realized I'm not 29 anymore and is having TOO MUCH FUN reminding everyone else, too. Brayden loved getting to visit with his cousins and enjoy their time together. We've gotten to enjoy the Farmer's Market, trip to Lowe's, snow cone treats, FUN, FUN, FUN!! Summer has flown by so quickly with too many weeks in isolation, so hopefully we can make the most of the weeks coming.

Brayden was nominated by his Social Worker at ACH to participate in a VERY EXCITING program! He will be going to Little Rock Air Force Base and be a pilot for a day! He will have a custom-made flight suit, participate in a flight simulation, many other events and finish out the insanely awesome day with graduation. He's SO pumped! We were so grateful and so honored that Brayden was nominated and will be able to have something so exciting to look forward to. What 10-yr-old boy wouldn't want to do this? It couldn't be more perfect!!

We're continuing to hold our breath to see if Brayden's counts hold up for the 6 weeks we're watching. At that point, his chemo dosage will be increased to keep pace with his growth spurt the prior 3 months. Even though we're not looking forward to it, we know that to keep him healthy, safe, and moving forward to full remission, this is what has to happen. We're praying his bone marrow remain strong & producing healthy cells while his liver continues to stay strong in filtering out all the toxicity. And, we'll keep counting down but remembering to enjoy the moments in between and focusing on what's most important!!