Jones Family

Jones Family
November 2009

Monday, July 26, 2010

15 Months & Counting...

Once Brayden reached the Maintenance Phase of chemo, we heard the date "August 2012" as end of treatment. So knowing August is on the horizon helps to see we're getting closer to the finish line. 15 months last week since diagnosis...2 years to go. Brayden asked me questions again today about what happens after treatment. I've heard from other moms, you hold your breath and pray. I suppose that will continue for a while after treatment. For today, we had a good day. We were welcomed by the awesome nurses at the local Oncology clinic. Brayden had gone through his game bag filled with things given to him by sweet friends during his early days. We were excited to play a new game we both forgot about today during clinic. We had SO much fun while I secretly wondered what his blood results would bring. After a week of steroids last week, I had hoped they'd be high enough to sustain him for the weeks of treatment to come. They weren't as high as last week, but still in a safer zone. He was able to get chemo, which they've increased by 1mg with his recent growth spurts. Have I updated here that I have a 10-yr-old who is 5'1"?

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

Sighs of Relief & Answers to Prayer

Wow - Monday started off again SO early, as the Little Rock days always do. We were thankful to have safe travels & a Daddy to drive so Momma could get some winks of sleep & a stubborn boy who did NOT go back to sleep! We got to ACH 30 min before our appt time - and sat for EVER. It's sobering how busy they seem to get each time we're there as we hear about new diagnosis cases & how many MORE children they continue to see day after day. The statistics about childhood cancer, while much better than years prior, are still so scary to hear. It's hard for me to be so brutally honest sometimes. I try to cushion it on here or stay away from it altogther. But the numbers are something I couldn't shake this time: 1 in 5 will not make it. So this time, while looking around the room at so many other children fighting, it was almost more than I could take. We've continued to see the same children in our 15 months since diagnosis, as of today. This time we saw one get to cross their fingers and hope this is their last chemo treatment. We met an adorable 4-yr old little boy who decided to be best buds with Brayden. He came trotting over (after saying, "I love you, Mother.") to check out Brayden's DS. Brayden was so unselfish in handing it over and helping him along. It was SO precious!! I talked with his mom who is expecting another one and couldn't imagine how she was juggling it all. Her son's diagnosis was ALL - but the lesser aggressive form. Thankfully he didn't have to endure Radiation or the aggressive chemo drugs or the longer treatment plan. I think it was neat for Brayden to hear they shared a similar Leukemia diagnosis, yet confusing to hear of his path being a little different. More realizations...Bryan said later it just broke his heart to see that little boy knowing he was about to receive the Asparaginase shots in his legs like Brayden had. Those feel like acid burning from how we've heard it described and knowing what he was about to go through after seeing Brayden endure that multiple times first-hand was heart-wrenching.

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" 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

Return to Chemo

Yesterday's trip to the local Oncology clinic was an adventure, as always. We love the sweet smiles we're greeted with upon walking in. Sshhh...don't tell, but they never make us sign in! My favorite sweet receptionist (who is a joy to call each month & schedule Brayden's weekly appts) must have been tired of seeing me wrangle the bags and medicine with the pen to sign in only to dump Germ-X on my hand afterwards to be sure I wasn't passing any yuckies on to Brayden. They're wonderful there. Brayden always struts in, chest puffed out, because he LOVES the attention the sweet nurses give him. There are always teasing moments & inside jokes with them. Even though he had to walk in wearing his mask, you could see his big smile in his eyes that was lurking behind that mask. Our AWESOME nurse that takes care of Brayden 99% of the time has his room always ready. I LOVE the relaxed feeling I get knowing she cares about him and is SO cautious to be sure everything is sterile and she does it all by the book! She's so on to Brayden's routine, yet she calls him on his stuff! He loves to tease her and we both are so thankful for her and the care she gives to him each week - always having a smile. She knows when I get that 'look' upon seeing his results. After his blood transfusion this last week, her text message to check on Brayden was so sweet and encouraging. Our last ER visit our other favorite nurse called the ER to talk to us to be sure he was okay. THEY ARE WONDERFUL!! Just in case I've neglected to appreciate them here, I hope I never take for granted the love and care they give my sweet boy!

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

Mom, Do you have any chores I can do?

I guess you can say things are improved! Suddenly Friday evening our little man was folding towels and running laps around the kitchen & living room. Huh?!?! Bryan and I just looked at each other in disbelief! This is a stark contrast to the days prior when he was weak, feeling sick, and just laying around after returning from the blood transfusion. When he asked this question, Bryan and I could barely contain our shock and then laughter. We wish we had a way to know if his counts were higher today, so we could get him out. It's been nice seeing his rosy cheeks return from being so pale and his pink lips so gray.

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

Thank you for your prayers...

Thank you to my sweet friend, Linda, for your help in posting an update for everyone. I ran in here while Brayden's food is cooking and wanted to post a quick update. Brayden did well through the night with the 2 units of blood that were transfused. We had SUCH great nursing staff while there. They hooked Brayden up with a DVD player and once the pre-meds were administered, he was knocked out quickly. They were so careful and so precautious watching his vitals in person for the first 15 minutes after each unit was given. There wasn't much rest for Mom, as the transfusion began shortly after 11:00. Many vital checks, blood pressure, pulse-ox, temperature and respiratory rates had to be done frequently to ensure his body wasn't having a reaction to the blood. We finally got to come home yesterday morning to a long day. Brayden was exhausted after only having about 6 hours of sleep. He was curled up on the couch so exhausted and sore. His body was pretty weak with also the Neutropenia, I'm sure. I was so hoping he'd have a quick nap...but he didn't. I was finding myself holding my breath while watching the clock during the hours of when the last time he had a reaction occurred. Thankfully, Brayden made it the day without any reaction like last time! Whatever the reason it occurred last time, we're hoping the additional pre-medication that was given this time hopefully helped.

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

Requesting prayers...

Hi everyone this is Linda, Lisa's friend, filling in for tonight. Brayden was admitted into the hospital for a blood transfusion today and as you know from the last one, everyone is a bit nervous. We all are praying for Brayden's health tonight and praying for Lisa and Bryan for strength and endurance through this difficult time.

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.

Thank you all for being loyal prayer warriors for Lisa, Bryan and Brayden. Their ability to walk this journey with courage, strength and a grateful heart has touched me. On behalf of the Jones family, thank you for your continued prayers.