Saturday, December 18, 2010
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
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
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!
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 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."
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
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
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.
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!
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':
- "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"
Tuesday, August 31, 2010
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
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
Sunday, August 15, 2010
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
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!!
Monday, July 26, 2010
We decided to take a quick run by Hobby Lobby today just to look at the models and hang out. It was a nice treat for him with slightly good counts. He had SUCH a big weekend!!! He was able to hit the park & fish with Dad, see a movie with his cousins & aunt & uncle, spend the night with Nini & Papaw, & swim outside with a good friend! We loved getting to be outside and soak up some sun. Bring on the spf 100 & Dad had to pick him up early but he still loved being outside in the pool and loved every minute of it! We were SO happy for a fun, activity-filled weekend. Last week with higher counts he enjoyed a special treat each day, whether it was HH finally (Sonic Happy Hour) or a slushie, or getting to sneak away late after dinner one night to WM to shop for school supplies as a last-minute surprise!! We've loved the freedom and fresh air this week has brought. It's been a welcome relief for all of us, but especially for Brayden. He's spent each night prepping his backpack for school and CAN'T stop talking about 5th grade! He is SO excited. I'm so thankful he'll have some normalcy return again. Even though the school pace is a bit more hectic for all of us working hard on schoolwork, it's going to be a welcome relief.
Brayden's been having more leg & body pain. He's scaring me yesterday & today with more exhaustion and headaches. I'm hoping it was just a busy week and all the activities catching up with him. There are always fears looming behind when he has pain or side effects. There is so much the chemo can cause and I hate to see him have to deal with those effects. We're praying for Brayden's stamina to increase, his liver to remain strong & continue to flush out the toxicity of the chemo, his counts to remain stable and his bone marrow to be strong without leukemia blasts. We pray his spinal fluid remain clear and his headaches to subside. We're waiting to hear back about the tendons in his feet and hoping that something can be done to help and the neuropathy not to worsen. Here's to another great week!!
Wednesday, July 21, 2010
We tend to keep to ourselves. Sometimes it's scary to become attached to other families as you see them struggle. Plus I know sometimes you don't want to talk & share and know how long it took me to finally start looking around the waiting room at the many faces. Even after being there for 5 hours, we are so thankful for the ability to have ACH. It's easy to get bogged down with the 500-mile drive and the wait and the frustrations...but I can't imagine doing this without their expertise, encouragement, and overall support. The staff is truly amazing.
After Brayden's port access & blood draws, the waiting game was excruciating. He's 5'1" now...at 10 years old. There's no doubting he's a Jones man. It's been a really unsettling 8-10 weeks. The last 2 months of results in Little Rock and Brayden's system responses in the weeks that have followed have really thrown us for a loop. I don't know that I effectively articulated on here how deeply this had effected us. Suddenly having 2 blood transfusions only to see his red cells continue to decline afterward was so alarming. We had been on worry-alert with his liver enzymes being so high and not seeing them decline much worrying that the chemo toxicity was really doing irreversible damage which would have his chemo reduced. Then that leads to worry about the chance for relapse knowing he has to have this FULL protocol with all chemo drugs to help limit the chances of that. Being Neutropenic lately and having to skip weeks of chemo had us so scared. Thankfully he hasn't developed a fever as a result. But we kept wondering when his bone marrow was going to kick back in. THANKFULLY - after waiting and waiting we finally received the best blood work results in months! Brayden had good results across the board! His liver enzymes were down to 1/3 of what they had been - no longer in the danger zone! His bone marrow woke back up and has been producing little baby red cells! For the first time in months, his body did it on his own in increasing his hemoglobin WITHOUT the blood transfusion to do it for him!! AND - after a week of being back on chemo, his ANC showed that his counts were high enough to continue chemo & he wasn't Neutropenic!!! We were ecstatic! This was SUCH good news after a very difficult couple of months. Brayden was cheering knowing this meant getting to golf, getting to swim in the indoor pool, seeing a movie and just getting to be a kid for a bit! Less worry for Mom & Dad too is always a good thing!!
The only point of worry is some problems with the tendons in Brayden's right foot. He's struggled with the Neuropathy in his legs since starting one of the chemo drugs, Vincristine, that he receives monthly. He's been having more and more trouble with that right foot & ankle, so we're hoping there is another solution to help & it isn't related to the neuropathy worsening & needing to increase the dosage of that medicine that helps him. We just had to increase it a couple of months ago, so we're praying for relief for him. Since Monday, he's been more sore but we know he's been running hard! He didn't sleep on the way back from Little Rock either and has been so exhuberant about the awesome results.
As usual when we get a rare opportunity with good blood work, we're going to try to make the most of it. We're hoping to see some family this weekend and he's been begging to go school supply shopping. Remember last year even though he had to be at home, we let him pick out what he wanted over the internet. We're thinking if his counts are high with his steroids this week, maybe we can go later one night when there is less traffic in the stores?
We're so thankful for all of the prayers that continue for Brayden. His journey still has a long way to go. Next month will mark 2 more years for chemo - end date goal of August 2012. It still daunting to try to wrap our minds around that. Many times for us and for him it's literally week to week without really knowing what's going on under the surface. For the liver function it's month to month. You can get certainly obsessive over the numbers and relying on them. I guess again I'm reminded of trusting Him to hold Brayden and know that God has Brayden in His hands. Thank you all for walking this journey with us in your encouragement & prayers!
Tuesday, July 13, 2010
So on to the results - his counts were back up - but again, after a week of no chemo, I was hoping for more. Frankly, just to have them high enough to not be Neutropenic and re-start chemo was reason to celebrate. His red cells were still not as high as previous normal for Brayden after a transfusion so that's been nagging at me. His platelet count had bounced back nicely. All in all, we're glad he's able to resume chemo and his preventative antibiotic for this week. I'm really curious how he'll be by Friday, so we'll assume they will drop again. His pattern lately has been 1 week on, 1 week off. After a week of chemo his system bottoms out and needs a week in between to recover. Now that it's happened twice, it makes me curious if it will repeat Monday. Until then, he's trudging along! We're going to try and sneak out and catch a movie. Have I explained before how we prep movie-going during low counts? SUCH AN ADVENTURE!!! The moral of the story is you never know what another family is going through so if you see them acting a bit nutty, there might be a good reason for it.
Thank you for all of the prayers that continue for Brayden. There is a lot to be thankful for right now, and yet reminders of the battle Brayden faces daily. He's had more pain in his legs and arms. We're praying that doesn't effect his hands at all as a result of the chemo. We continue to pray for his liver function to remain strong to filter the harmful effects of the chemo and his enzyme levels to decrease. He'll have more tests on that Monday and we don't want that to prevent his chemo regimen from being altered. We pray his bone marrow strengthens and his counts remain good - but not TOO high! We're so thankful he made it past this Neutropenic week without any secondary fevers or infection. We pray that continues!!
Sunday, July 11, 2010
Once we had a break in the rain Thursday and saw the sun, we ran outside to soak in some Vitamin D. (He didn't argue with me this time about whether it was Vitamin D or not!) We literally were marching in circles in the driveway with Hershey trailing behind. Brayden couldn't stop laughing! We must have really put on a show for the neighbors.
We're again so thankful for all your prayers. I received an encouraging email too from his Oncology nurse at ACH. We had been so upset about the recent blood results the last 5 weeks and need for 2 transfusions going into his seventh month of the Maintenance Phase of Treatment. She was reading back over his blood results and realized this was really the first section of time he's dropped counts. This was supposed to happen 6 months ago! I guess the fact that it didn't we thought we were out of the woods. But it appears it's just now catching up with him. During the blood transfusion night at the hospital, I was re-reading back over his medical journal/calendar I keep and re-read notes when he first started this phase of treatment in January. His Oncologist had cautioned once his counts dropped, it would take them 'a while' to recover. All of that combined the last couple of days has us feeling a little less unsteady than we were prior. I guess even though it's not what we expected, it was a reminder that it will happen as part of treatment. Brayden hasn't done anything the 'typical' way during his treatment. So for now we'll try and let our worry subside just a little bit.
We return to clinic tomorrow to get an update on his counts. If high enough, he'll re-start his weekly and nightly chemo. Again, crazy to think that after a week of being off chemo, I'm hoping he can get back on. Chemo has become such a reassurance for us. It makes me curious what his counts will look like again the week after...but one day at a time, right? For now, back to Monopoly marathons and movie night in the floor and video games. I'm thankful he hasn't spiked a fever this week with being Neutropenic with no immune system in the danger zone. Thanks to my sweet hubby for all the help around the house in keeping Bray as protected as possible from germs.
Thursday, July 8, 2010
After a full night of rest for both of us, it seems to have caught up with me more today. I'm working from home and it's been a very busy couple of days. This morning he woke up with a terrible headache. I'm still holding my breath and wondering what's happening under the surface in his little body. We're having to hold all chemo this week AND his protective antibiotic that he's on every week that prevents pneumonia. It also lowers his counts and with his ANC practically non-existent this week, everything but his standard meds are on hold. He's loving not having to take the extra 6 pills a day this week. It's more worry for us without it though.
Thank you for joining us in those specific prayers for Brayden that continue. He won't have more blood work done until next Monday. Until then, he'll remain in strict isolation and we'll remain hoping & praying this blood is helping his system rebound. We're hoping & praying the no chemo allows his bone marrow to kick in some new, healthy cells. Dad has been awesome helping me prep home while we were away at the hospital. It's back to all the precautions we were so used to 6 months ago. The extra regimen is keeping me busy and Brayden isn't liking remembering how protective Mom is when he's Neutropenic. My hands are raw again from the alcohol spray that's back on the counter. But it's all worth it to keep his fragile system protected until it bounces back from this and resumes his regimen and aggressive fight against the Leukemia from returning.
I better run & wash up again for his lunch prep. Thank you again to all of you. Knowing so many are lifting up our sweet boy in prayer is such a comfort.
Tuesday, July 6, 2010
Lisa sent me this email to share with you...
I had hoped to tell everyone last week how we were disappointed in Brayden's counts after his local Onoclogy clinic visit. The week went by so fast. After a week of no chemo & steroids, a recent blood transfusion, his blood results hit me like a kick in the stomach. Thankfully, at least they were high enough to go back on chemo. We seized the opportunity & went straight to the movies to see Toy Story 3. He'd been wanting to go but hadn't been able due to his counts. It was such a welcome distraction & fun time for him. He loved getting to go. The rest of the week I tried to be relaxed but was worried about what a week WITH chemo starting with lower counts would do.
I was all set to write about how the 4th of July is Hershey's least-favorite holiday. She was so scared all weekend with all the loud popping going on. With fireworks last week & weekend going until nearly midnight, I had a brilliant idea. I would plan with the older neighbors to start lighting black cats at 7am to wake up the younger ones who were up late! Suddenly I realized I'm getting older, huh?
Even though we were secretly so nervous about his counts, we went ahead with our family visit on Sunday afternoon. We loved that Brayden got to light some fireworks and enjoy them. The night before we loved parking at the top of the hill & smelling the night breeze & watching all the beautiful fireworks. Oh if only those moments weren't so fleeting.
Monday was such a nice, lazy day. I've been keeping things wiped down again & back to Isolation cleaning without him hopefully noticing. We got to visit with our sweet friends for a bit and it was so nice.
Today has been another jolt. The Oncology clinic weekly visit today brought more disappointing results. I haven't seen all zeroes on Brayden's bloodwork in over 6 months. He's severely Neutropenic today, which means strict isolation. This means no chemo today or nightly chemo. Not what we wanted to hear. The other bad news was his hemoglobin blood levels were critically low. His platelets were in half since last week. So we waited at clinic for orders to be written, ran home to grab a bag & some dinner for us, then on to the hospital. We prayed on the way and after me praying for all the things for Brayden, he stopped my heart by praying for all the babies at the hospital to be healthy & get to go home. He's so unselfish & it makes me so proud of him. We were singing along to Michael W. Smith's "I Will be Here for You" and trying to ignore how neither of us wanted to go. After taking the exit for the hospital, Brayden burst out, "A RAINBOW!". It was so beautiful and touched both of us in such a special way.
Getting admitted was tricky with a Neutropenic child. There's no worst place than the ER. Everyone here was great. Brayden's so happy to have a guy for a nurse who hooked him up with a DVD player. He's settled in (after I re-cleaned the room) watching Little House on the Prairie and playing cards. We're waiting on the blood to get here & making the most of our time.
I ask again for your prayers for Brayden during this uncertain time. Thank you for loving him with us and partnering with us in prayer for him. It's so hard not to be scared. We're praying for his body's protection while his counts are lower...that he won't develop any secondary infections that can come even from his own skin. We're praying for good blood that will help his body continue fighting...that the transfusion will go smoothly without any effect to his heart or organs. That his body will accept it and not develop transfusion reaction. We're praying that the additional medications he will have this time will prevent any fevers from developing like last time. We're praying that his liver be strong & the enzyme levels to decrease...that it would be able to continue filtering out the chemo & not be damaged. We pray his Neuropathy doesn't worsen, as he's had increased pain lately. We're praying that the leukemia cells would NOT return after another week without chemo. We pray his bone marrow strengthen to again create new healthy cells in the coming days and weeks so he can continue his 2-years of treatment left without Neutropenia. We thank Him for Brayden's healing. We pray this blood would help strengthen Brayden's system to continue fighting. We pray for his spirit to be encouraged and we pray he continue to remain emotionally strong.
We'll be in strict isolation again for a week. We're hoping and praying next Monday brings wonderful results for him. We'll try to post an update tomorrow after he gets home tomorrow without incident from the blood transfusion.
Monday, June 21, 2010
We're all a little battered and beaten after a VERY busy weekend. My sweet sister had her wedding reception and there was a flurry of activity since Friday night. Brayden said it was 'official' now that he has a new Uncle! Yesterday was a lovely Father's Day brunch with new family that was truly wonderful. After not much sleep all weekend - and still catching up from the hospital stay - we were up at 4 to leave out for Little Rock today. It marks the start of Brayden's 3rd round of 12-week Maintenance chemo cycle. He has 9 more remaining before official 'end of treatment.' Today was a big question mark in our minds with all the craziness of Brayden's counts in the last month, the blood transfusion, the ER trip & hospital admission and lower counts. It is rarer to have to have a blood transfusion during maintenance and we were reassured by this by our awesome Oncologist, but then questioned about it by a nurse. So we tried to disguise our concern...I'm getting ahead of myself. I'm just full with questions and remarks and comments and reassurances yet more questions and concerns. Back to the trip...thankfully, it went smoothly. The start of a cycle of treatment (1 every 12 weeks) is tough because it kicks off with an LP or lumbar puncture with intrathecal chemo (Methotrexate). This is to check for Leukemia cells to remain clear of his spinal fluid to treat the Level 2 presence of cells at the time of diagnosis. This spinal chemo has been on-going as well as Radiation to combat and treat the Leukemia presence in his brain. In enduring this treatment, it begins with a sedation which means no food or drink after midnight. It's never an easy trip for Brayden, but luckily he slept this morning and it wasn't so bad. His sedation began shortly after 11 and he did well. Prior to his sedation, Brayden had his port accessed and blood drawn to do lab work. This was the first time Brayden didn't make counts in order to have chemo. He needed to have ANC's above 750 (500 is Neutropenic). Today he was 660. I've said it before and I'll say it again - his Dr. can tell us the building is on fire and not incite panic in us. He's truly amazing. He was reminding us how typical this is for treatment and how Brayden is the only kiddo on this treatment protocol that's made it this far without being interrupted with lower counts. What this means is he didn't receive his iv Methotrexate and only received his other iv chemo, Vincristine. This one doesn't affect his counts. His nightly chemo, 6MP, will also be skipped this week. This will allow his bone marrow a chance to recover. He started steroids tonight so that will really give him a boost. He told us next Monday when he receives labs and chemo locally will really be telling that week and the one after on how Brayden is doing. He's thinking Brayden is still fighting off a bug of some sort. The lower counts, the ER visit and hospital admission, his elevated liver enzymes, the need for a blood transfusion. Hopefully the steroids will help kick that too. His Dr. was concerned if we didn't hold chemo, it would further diminish his system and result in another possible hospital stay from neutropenic-induced fever. So we know this is a common occurrence and were warned about it. I guess like the fever, this is another first in his treatment and is catching us off-guard. It's scary to be afraid of the poison in your child at first and then you come to realize it's what will save your child's life. You come to rely on it and it's scary when it isn't able to be given. Your fears creep in of what-if with the Leukemia not being battled for a week with aggressive chemo. He reassured us of another child on the same protocol as Brayden who hasn't been able to have chemo for 6 months. I looked at Bryan later and realized again how well Brayden has done and endured this treatment. We have to look to the experts and trust them and put our faith in the One that holds Brayden. Again - trust. Sound familiar? His liver enzymes continue to be elevated. If that continues, his chemo will have to be adjusted down. Not something we want to happen...his hemoglobin, even after the transfusion, was a few points lower than what we expected. We're certainly praying his system bounces back, he strengthens this week without the chemo, and he's able to kick whatever his system may be fighting. We're praying his liver strengthens and all the trauma the Methotrexate and 6MP chemo is putting through him to kick the Leukemia doesn't weaken his liver to that degree.
We've had an awful night with the Pharmacy. I'm thinking after 14 months now, wouldn't they be expecting the same monthly prescriptions? I've learned in the last few weeks I have to stay informed and be Brayden's advocate. The wrong dosage and directions were given on a prescription and another was incorrect. Scary. 6 phone calls finally got the prescription even filled. All the while, we were rushing to get his meds done in time for him to have them with dinner. My days of working at a Pharmacy doesn't lend me to be lenient at all. I guess I've been there, done that, so what's the big deal? I know mistakes can happen. It just reaffirmed we can't let our guard down when working to be a parent and protecting our sweet boy.
Thankfully Brayden didn't 'emesis' today, as he put it. He enjoyed sharing with all the nurses how he got his first haircut last week since all his hair grew back in. We had to cut off all his cute curls and his chemo highlights, as his Dr. told us. He was adorable but getting SO shaggy so we made the appt before the big wedding reception and pictures. It certainly makes him look much older! We found out today Brayden has grown more since his last visit. He's pumped to not have to take his nightly chemo med for a week. The little things, right? He enjoyed catching up with some of his favorite nurses on how he's been doing since returning to school and now being out for the summer. He had a good day.
Brayden says to tell everyone he says hi. We enjoyed a nice walk on this 1st day of summer with Hershey after the sun had gone down just enough to bring some heat relief. He's a bit sore from the procedure today but the walk was good. I know we'll all sleep well tonight. Thank you all again for your love, prayers, and support!
Wednesday, June 16, 2010
Brayden has had a tumultuous few weeks. He's had some things that caused me to take pause on his blood work results. Week before last I had to travel for work and was petrified for Bryan to take him to get chemo locally without me. My reassurance was our awesome nurse was there to hold down the fort for mom since I couldn't be there. I smiled from ear to ear when Bryan took a pic with his phone and texted me the results. I guess it was the next-best thing to being there? The boys did an awesome job and I was at ease knowing his awesome nurse was at the helm. I did however begin to worry a bit more. The next day Brayden had a nose bleed and wasn't eating. He just hadn't been himself. I was thrilled to finally get home...only to be sidelined with a fever. I was furious at myself. No matter how much Germ-X and precautions I'd used, I guess being at the Mall of America, one of the busiest airports, downtown in a huge office building and hotels, I still caught a bug. I was hoping I was finally on the mend after 3 days of on and off fever and feeling horrible. We went to get chemo for Brayden last Monday locally and his blood counts had dropped again. His red cells. As I looked back over the previous weeks in the journal I've kept for him, I saw the pattern. I was panic-stricken. All the awful worries and fears creep back in. I remembered asking his Oncologist once Brayden hit this Maintenance phase of treatment about blood transfusions and him saying they rarely occur. Why was it looking like Brayden would need one? In those moments, it seems nothing matters but Brayden. Life seems to stop around us and I soak him up. I was a wreck. We decided with his nurse to come back in 2 days and check his levels again. The concern was if we waited until this week's chemo, his levels could drop too low. Brayden had just that morning complained of dizziness again and again and had been sleeping more than normal. He was already exhibiting signs of low red cells. We returned 2 days later and again his levels had dropped. It looked like the blood transfusion was imminent. That morning he'd again complained of dizziness, had slept more than normal, and said he could feel his heartbeat in his head. 3 hours later, we were heading to the hospital in Fayetteville where he'd had his last blood transfusion in December. Thankfully his port was accessed at the local clinic and we were hoping things would move fast. They didn't. It took 7 hours before the first unit was ready to administer. Neither of us slept much that night. His vitals have to be monitored so closely during a blood transfusion with all the risks of reaction that can occur. Thankfully, he seemed to do well. We were headed home the next morning, exhausted and hoping him being juiced up would help kick start him back to normal. We talked a lot about the Blood Drive that night and how we had heard at the clinic earlier that the hospital wasn't sure if they'd have enough blood for him to have the transfusion. Hearing that again is so scary! That's why we've had the two previous blood drives in order to prevent that from occurring. It's very startling to hear that and not know where you might have to go or how far you might have to drive so that blood is available to help these Pediatric Oncology kids keep fighting.
We had been home not more than a few hours when Brayden was in pain. I knew all the warning signs to look for and these didn't appear to be it. I had been checking for fever every few minutes after we came home, as that's usually the most common reaction after the transfusion occurs. Suddenly, Brayden was in tears in the fetal position in his bed. His back was killing him and then he went into tremors. More than shakes or shivers. It was awful. It took me a few minutes to grab my Leukemia book and look for this reaction - nothing. I called his nurse at ACH and left her a message. We didn't know if it was serious. Were we over-reacting? Then it got worse. He was crying out in pain in his back and then his legs. I threw on a change of clothes after giving Bryan the look. He hadn't seen that look since last year when we took him to the ER. Everything seemed to be in slow-motion. It seemed once I knew we needed to go, we couldn't get there fast enough. I rode in the backseat with Brayden, who was upset we were having to go back to the hospital. I called the local clinic and we started out heading there. It wasn't too long in our drive when I called back and we changed plans. We were heading to the ER. I did my best to keep Brayden calm. Suddenly, he knew he was going to be sick. Thankfully we were prepared and the poor baby threw up everything. I knew it was worse than I thought. Within minutes, I felt his head getting hot. It happened SO FAST. This was the first time I'd felt his head get hot. It's the scariest thing because we'd been warned and taught what to watch for and told how dangerous it is when patients spike a temp. We've been so blessed that this hasn't happened to Brayden.
We burst through the ER doors and I was trying to stay calm to communicate our fears. On top of the low red blood cell counts, Brayden was Neutropenic. Being in the ER was the absolute worst place to be with the placing crawling with germs. Thankfully they rushed us back to a room that had just been cleaned an was away from most of the activity. The Dr. seemed so non-chalant and I was so frustrated I wanted to scream. Within 30 minutes his fever had gone from 99 to 102.3. He didn't want me to move away from him and I could feel him burning up. I could make this ordeal pages long with all the nightmares we endured. He was on the verge of passing out while he went through chest x-rays and it hit me on our way there and back - I hadn't been here since that awful night last year. This was the same steps we walked that night when we received the awful diagnosis. Being back was more overwhelming than ever. After more tests, I was begging someone to start antibiotics. We had been taught if you don't start antibiotics within an hour, they can go septic. Finally, I was able to breathe knowing his chest x-ray was clear and they began antibiotics while waiting for the blood work to come back and many other tests. I won't go into the nightmare of accessing his port in the ER. I was so touched when one of his nurses from the local clinic called the ER to check on him. Brayden was finally resting curled against me and I started to relax a little knowing he had medicine working and he was peaceful while we tried to figure everything out.
9 hours later, Brayden was finally moved to the floor. We were told they were scrambling and moving things around to 'find a place' for him. We were told a few times over the next several days there aren't many nurses or Pediatricians that are used to treating Pediatric Oncology patients. All this time, this year and a half of so many weekly appts and blood draws, port access, medicine, tests, and we were lulled into this false sense of seeing so many around us going through the same steps and realizing we weren't alone. This past week we've never felt more alone. We realized just how rare Brayden's condition is once again and how far away Children's really is...3 1/2 hrs is way too far when he wasn't stable and we were rushing to understand the fever and the 160 pulse rate. I was petrified and kept asking Bryan if we did the right thing. At one point, we considered leaving the ER and driving to Little Rock. But I know how long that drive really is and I couldn't imagine what in the world we would do if Brayden went through another episode like that. So we stayed in hopes he would get the care he needed. It wasn't until we got up to the floor I began to breathe. God had put a WONDERFUL charge nurse in our path. She was WONDERFUL and spent the next 3 hours with us. (If you're keeping track, that puts us at 2am). She cleaned up Brayden's port access that was a nightmare in the ER. She instantly was under Neutropenic precautions with gown, mask, gloves, and had the other nurses doing the same. I went to work cleaning the room with alcohol wipes while more blood was drawn. Brayden was a wreck. He had been through so much trauma. I've not seen him like that before. Even with all he endured during diagnosis, nothing like this. It was the first time I saw him exhausted and not a lot of fight in his eyes. He was really feeling and expressing how defeated he was. This awesome nurse was such a beacon to us during those horrific hours. She comforted both of us knowing she knew how to care for my sweet boy.
We again didn't rest more than 3-4 hrs. We saw a couple of different Dr.'s and knew the drill. Blood draws were done peripherally and through his port. They would be monitored for 72 hours for any kind of culture to grow. In the interim, Brayden's fever was starting back and he immediately began an on-going aggressive round of iv antibiotics that continued for the next 4 days.
The next day brought some friendly faces that lit up Brayden. Our sweet friends from my circle came to visit and lit us both up. One of them brought their son back up later that night to enjoy some fun DS time. The boys have hung out before and always have a great time playing together. His counts had shot up overnight and we took advantage of the brief window to visit with others. I was and am so thankful for each of you. My sister was there early that morning (after back to back hospital nights in 2 different places) with some sweet nectar again from Starbucks to keep me going through the long day. She was there in the ER and did an awesome job of distracting both me and Brayden. Thank you to my sweet friends for the ways you touched us and encouraged us either through smiles or gifts and things to help ease our unexpected hospital stay.
We learned quickly Brayden's liver enzymes were very elevated. Each day we learned of an update on his blood cultures that thankfully weren't growing anything. His fever hadn't returned through the night and the antibiotics continued. There were other worries & concerns but we were getting through it. Each Dr. we saw had a different idea for Brayden's reaction. Neutropenic-induced fever, infection, but it was our sweet nurse from Children's whose call really calmed me down. She was just sure it was a reaction from the Blood Transfusion. It was peculiar it didn't happen sooner, but even though he hadn't had it before, now we knew what to do for next time to prevent it again. We found out his liver enzymes have been elevated over the last several months. It's expected in his situation and Children's didn't alert us - it's just another thing that comes with the territory of the aggressive chemo. And when you're fighting for a cure, you keep going knowing 2 of the 3 chemo drugs he's on causes the liver enzymes to elevate. They were scary for a Pediatrician to see but reassuring this is what Children's is used to seeing and they weren't within the range to where they would have to stop chemo.
The next day Brayden's counts had plummeted again. He was VERY neutropenic. It was sad not to have any visitors, but we made the most of it. One of my sweet friends had brought him a new Lego set and we had a blast playing with it all that day. We watched movies and I loved getting to snuggle with him in his bed. Dad came when he could in between work and we missed Hershey like crazy. We played games and stared out the big window at the sunshine. Thankfully, we got good news. Brayden had been fever-free long enough to go home, his counts had rebounded a bit to be above the Neutropenic line just enough, and his blood cultures still hadn't grown anything. YEAH! We were thrilled to be going home. There were still some scary moments again with his care, but he was a trooper and we made it. I realized I had to stay on my guard the entire time and be his advocate. I'm so glad I was able to be that for him.
Coming home was wonderful. It was the first time either of us had slept in our own beds in 5 days. Hershey was precious getting to see us and knowing something had been up. It was right back to the grind the next day with Brayden returning to clinic. We were shocked his counts had come up again just enough to have chemo. We are so thankful in this year and a half Brayden hasn't had to skip chemo and his counts have stayed where they need them to. We're still worried, but that seems to be part of the process. The nurses at the local clinic were so precious to him and had worried with all that he'd endured the past week. 2 hospitals, a blood transfusion, an ER visit, fever, and a hospital admission. There were still some concerns, but all in all, he did okay. We have another visit to Children's coming and I think we'll all breathe a little easier. His nurse commented he just didn't look like Brayden. I've seen that too. He's been sleeping 14 hours a night. Today was the first time in days I saw glimpses of him back. I just hope and pray everything inside of his little body keeps fighting and holding on as the chemo works to keep the Leukemia at bay and destroy all memory of it.
Please join us in praying for Brayden. Now we're also worried about the liver function, so we're praying for protection for his liver as it works to filter out all the chemo that's being pushed through him. We pray his counts stay within the safe range - not too high where chemo dosage has to be increased, but not back into Neutropenic range. We pray also for his spirit to be encouraged. He's endured quite a lot over the last week and we pray his spirit to be guarded and his heart to be renewed. We pray also that whatever was causing these test results to be so crazy over the past few weeks that it is gone. We pray they settle back into a normal range and that the chemo continues working. We pray for Brayden's continued healing and stand on the promise that he's already been healed.
Hopefully we'll have some quieter days ahead. I have many pictures to post. We're hoping for a haircut in the next few days. It's been very tough to do. This will be the first haircut for Brayden since his hair grew back. It's so adorable and curly! The nurses loved complimenting him on it and he pretends to be annoyed! Hopefully we'll have some summer fun to focus on and be able to share with you. Thank you all for continuing to follow us on this journey. Thank you for your encouragement for me to keep writing and keep sharing with each you here. Thank you for your comments as that helps us to remember we're really not alone in this at all.