Jones Family

Jones Family
November 2009

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!!!

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 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!!!!