Jones Family

Jones Family
November 2009

Wednesday, October 28, 2009

Another one down

We were glad to say goodbye Monday to another chemo med Brayden won't have to have again. This one's been kind of ugly to him and came with some side effects that he wasn't happy about. Thankfully this Monday in clinic was a lot better than the previous weeks'. We enjoyed playing several games and I remembered the Easy Mac so hopefully him eating helped a bit. Brayden did so great doing schoolwork in the car on the drive down. He did the pre-hydration, then 2 chemo meds, then the 2-hr post-hydration once at ACH. Once he got the second anti-nausea med, he was drowsy. It amazes me how he likes the sedation 'dizzy' medicine but not these that give him that feeling or the Benadryl he took afterward. It actually makes him a little mad because he can't stay awake and it makes him dizzy. I kept thinking how nice a Benadryl sounded after not enough sleep and the long drive and another day of waiting in the Infusion Room for treatment! Thankfully he was able to get some good sleeps on the drive back home. And then woke up and realized he was on steroids and had missed a couple of meals! So he did some making up for that at home before finally giving in to bed.

This morning and all day he's not been himself. He's been so pale the last two days we thought for sure he'd need blood. Thankfully his counts were all okay...they'd definitely dropped, but not to that level of being nervous. His eyes look different today and he's not been as peppy. He's eaten well and gotten lots to drink but he's hurting a lot today. Of course, he refuses to take anything. He's felt nauseated so we've kept the Zofran going all day. Tonight we had to move to Nausea med #2. I tried reassuring him it would help him feel better AND he could get some sleep. It took a while but after some back rubs, he finally settled in. I could tell he was hurting. We've heard that's common with this chemo he's had now 3 weeks in a row. Days like today are tough. It makes you want to hide away from real life (school, work, responsibilities) and just curl up and love on him and do nothing. It's so infuriating because I push through and encourage him too and we both keep going in hopes it keeps some kind of normalcy. Then when things are quiet, I just don't know how we will do it again tomorrow. But we get up and keep going.

We'll have to stay a couple nights in Little Rock coming up. I'm really nervous about these next 2 weeks. I've referred to it before. This is the last round of these 2 chemo meds that have given Brayden the most trouble in previous treatments. Cytoxin and Ara-C are begin Monday and he'll have to be admitted and monitored for kidney function. It's got a positive side, as this plans to be Brayden's last admission to AR Children's Hospital for chemo. Going forward, all chemo for the next 3 years can be administered in Clinic! We'll try to stay focused on that to get us through. We're praying for Brayden's protection and thankfully with being on steroids, he'll be strong going into this tough round. He'll have chemo daily Monday thru Thursday next week and the following week as well. This is the one that can cause him to be Neutropenic and having been in Strict Isolation for nearly 4 weeks, that will be a bummer going into the holidays. More than anything though, we just pray he continues to be protected. We're praying he's protected from the harmful effects of this chemo round and stays strong, that his counts hold up and he's protected spiritually and emotionally as well. Thank you all for your sweet comments and encouragement. It's been a rough few days personally and those have been such a comfort. Here's praying tomorrow is a better, brighter day all the way around.

Thursday, October 22, 2009

Celebrating Brayden...6 months & counting!

Last night we decided to surprise Brayden with a big celebration. It was a little tricky; he's still on strict isolation from his Oncologist's orders. Dad was SO helpful in doing the running for me since I don't get out of the house much anymore while taking care of Brayden. He picked up a surprise cupcake-cake ("Brayden's our MVP", football theme, of course!), some little balloons for us to blow up, and some streamers. Dad hid the loot and after showering and changing clothes from work germs, took Brayden for a fake ride in the truck. Meanwhile, thanks to Nini's help, we QUICKLY decorated and put up the posters everyone made for the Chick-Fil-A night.

I also made another special poster for Brayden...one that I wanted to use as the centerpiece for his celebration. Brayden's 6-Month Journey...Look How Far You've Come!! I went through and recapped for him how much he's gone through in a visual sense. We definitely wanted him to grasp just how much he's accomplished in this Journey to fight Leukemia in this 6-months. We wanted to celebrate him and make sure he knows how proud we are of him!

His reaction was so sweet. He was so excited and so thankful and I loved the hugs he kept giving me. The evening had its tough moments while hearing Brayden recall a lot of the emotional details of those first 24 hours: the ER visit, the fear, the life-flight to Arkansas Children's Hospital, the diagnosis, the days spent in PICU, then the Oncology floor stay and visually realizing how different his life would soon become. He remembers so much more that I wish I could protect him from, but hearing him recall it, he's so positive and I'm so thankful for that. We've always taken our lead from Brayden, yet try to approach everything as optimistically as we can. Everything he endures is in an effort to keep him safe, healthy, and free from relapse.

Seeing the counts of all that he's done was really more than I think any of us realized. He took pride in those stats...well, some of them he'd rather forget! We went through his beads and it was almost too much seeing how many he has. He wore them as a badge of honor and kept reminding us, "this is just the first 6 months! I still have 3 years!"

So here's to Brayden! You are such a strong boy and we are SO proud of you! We love you so much and want you to remember how much you've endured and how hard you've fought. Here's to all you've accomplished in your 6-month Journey:
- 129 Beads of Courage
- 132 doses of Chemotherapy from 8 different drugs
- 68 blood draws
- 1,748 pills taken
- 11 ACH Clinic Visits
- 8 different AR Children's Hospital stays for a total of 31 days
- 4 days in PICU
- 26 Highland's Visits
- 1 Life-flight on Angel-1
- 6 Chest X-rays
- 4 Catscans
- 1 Chest Tube
- 2 Echocardiograms
- 1 EKG
- 13 Spinal LP's w/chemo and sedation (yeah! dizzy meds!)
- 8 Bone Marrow aspirates
- 2 yucky foley catheters
- 1 platelet transfusion
- 2 blood transfusions
- 1 port surgery
- 8 PICC line dressing changes (this # seems like it was WAAAAY higher with the tape nemesis!)
- 224 PICC line lumen flushes with van-hep & saline
- too many alcohol wipes and clorox wipes to count!
- 2 proud parents and many other friends and family who love & support you!!!!!



Tuesday, October 20, 2009

We'll never be the same

I don't know if I've said it here before. I'm so thankful to have Brayden as a son. I'm so proud of his strength, his endurance, his tenacity, his resilience. I'm proud of his sweet spirit, his kind heart, his sense of humor, his love of family and God. I'm proud of how he has gone toe to toe with this battle over Leukemia and hasn't backed down and is ready and willing to face whatever it takes without question. I'm so proud to be his mom! He amazes me and I pray I can say it enough to keep reminding him that he is strong and he is able to fight!

Today is a day that we approach with hesitation, amazement, and thankfulness. 6 months ago we felt as though our world was being ripped apart and in those seconds, we clung to God and held to His promises, we clung to each other as a family, and lived literally second to second in praying God would save our son. I was thankful for growing up in Church in those early hours and wishing I still knew more about how to pray. I've shared before here how none of that matters to God as long as you ask...as long as you cry out to Him. I'm thankful for that foundation in which to lean on and to trust. I remember as a mother having a pain I never dreamed possible in seeing my son in harm, in pain, and being powerless to protect him. In all of that though, we remember a lot of good. We remember love, and emails, cards, phone calls, prayers and prayers upon prayers, family, hugs, support, words, knowing eyes, and little ways of helping that meant so much. A yard mowed, mail picked up, a sweet 4th member of our family (Hershey) being cared for, a bottle of water, a person to drive family to Little Rock, a Pastor to pray with us, staff encouraging us, the RIGHT Oncologist on call at the right time to have the wisdom to take Brayden's care in the direction to help him quickly. And the list goes on.

As I have began this post, my heart takes me back to where we were 6 months ago, hour by hour, and the emotions come in like a flood. I don't have many moments away from Brayden to be still in the moments with where we're at. In the few times I have the quiet, it's still there lurking at me. I don't know if or when it will ever be something we can think about or look back on and not become emotional. It's so much to comprehend and try to rationalize. It's irrational seeing your child battle cancer. Even yesterday in hearing someone say "since her son was diagnosed with Leukemia..." Those words sent a knife through my heart. I hadn't heard someone else say it. It's still unreal and had me jolted back into reality when thinking, "I wonder who they're talking about." I think we protect ourselves and don't say the words. I know I do. It makes it seem less real or impactful or dangerous or realistic. And yet, I am faced with it each day in looking into Brayden's blue eyes. It is real. I can't hide it from him or run from it. This is his and our new reality. Life truly will never be the same.

But we're thankful...we've gone back to this before and it's the things to be thankful for that have kept me moving forward and getting up another day and continue fighting with Brayden. We're thankful our lives have been changed in hopes that we can each be better through it...not because of it. While driving yesterday for a meeting with Brayden's teacher and seeing traffic, people rushing home after work, I found myself gasping at how beautiful the trees are...I've always loved the drive to and from our house. It's like the trees bend over the road and hug you. And with the sun shining so brightly through, it's like a postcard! Did I miss this before or take it for granted? This is our 4th fall here. I've driven this road before. Was it always this jaw dropping? I pray we never take it for granted again. I pray we never take this beautiful life for granted again.

We wanted to share some things with all of you. I know all the names and treatment protocols, and blocks of treatment all run together unless you're living and breathing it every day. I think it's incredible to see how far Brayden has come. We're so thankful for all the people that are working hard to help him...at ACH and Highland's

Fall beauty

What a day Monday...we loved seeing all the beautiful fall foliage on our trek south. The colors were awesome on a bright, cloudless blue sky day. The beauty and serenity was interrupted with a huge thud sound. I guess that bird I saw out of the corner of my eye didn't quite clear the car windshield! Brayden wanted to know if the bird was okay. YIKES! Judging from the feather marks and smudges on our windshield combined with Daddy's speed of 78 mph, we're guessing it didn't make it. I guess you don't need an Engineering degree to figure out that one! We instantly said a prayer after being that shaken up! Thank goodness the windshield was okay. When you're traveling 500 miles per week for the best care for your sweet boy, you come to rely on your mode of transportation in a whole new way.

Daddy had to work this weekend but we were thrilled to get to watch a few minutes of cousin Caleb's football game from the car Saturday. Then we were so happy to get to go to the mini-pumpkin patch at Mrs. Linda's garden! Brayden was so thrilled and kept saying how nice it was of her to share her pumpkins with him. He was loving the cows, the farm, taking it all in. He loved picking his pumpkins out and the drive out there. Thank you so much to Heather too for the offer! What a wonderful gift! Oh, and another event for our weekend? Brayden's 5th haircut! Crazy, I know! He's so proud of that and it's a reminder of another blessing in all that he's had to endure.

We worked a lot on schoolwork this weekend and Monday Brayden bolted out of bed to get ready for the big trip. He was so energetic (after the week of steroids) and did SO AWESOME on school work on the way down. then about 30 minutes before arriving at ACH, he started getting nauseated. We're not sure if it was the anticipation, but we were really worried. Thankfully he got some IV meds going quickly. After a lot of foot rubs, we FINALLY got him to take a nap while in the hospital bed prepping for chemo. I was glad he could sleep and hopefully avoid the nausea. It was bad when he would wake up or turn over. I was so glad Bryan was there too. They pre-hydrated him for an hour AND post-hydrated him for 2 hours. He was pumped up on 2 anti-nausea meds with the hope of not sending him home sick. I was dreading that drive and kicking myself for not packing extra clothes just in case. We gave a Benadryl preventatively and were so glad he slept on the way home.

After last week, I was truly dreading today. Being at home alone today with a sick little boy (and needing to do a presentation via phone) was making me worry. I was so thankful when he woke up and within a few hours, was back to himself! He was a little yucky this morning, but nothing like last week! What a relief! Even though I hated him being sick yesterday from chemo, I was glad that if it had to happen, he was there where he could get other meds that work quicker and get it behind him for the rest of his week.

It was so sweet to hear his classmates cheering for him when he was able to join in on the webcam for this afternoon's session. That opportunity to participate has been SO good for him. We're very thankful for the gift to the school to allow him to stay involved and caught up as well as have a chance to socialize for a bit! We'll still be in isolation for 2-3 more weeks and then it could turn into more from the next chemo med that's coming. We're still doing mouth care to fend off the mouth sores. For now, we're just grateful he had a good day today and tomorrow is behind him. We enjoyed the beautiful sunshine again today and seeing all the leaves starting to fall and appreciating God's beauty and his creation. Oh...and buying more groceries. Did I mention he was back on steroids again?!?!

Thursday, October 15, 2009

Is it Friday yet?

Brayden started feeling better Wednesday, and was closer to himself today. I know he isn't feeling 100% yet because he's more quiet and lethargic. But he's pushed on and did great with school participation via the webcam today. We've noticed his cheeks are really red from the chemo and the steroids. This afternoon was rough. He had to get 2 chemo shots in his legs and an update on his counts via his port. We went to the local clinic. I was so thankful they had a room cleaned and sterilized waiting on him, especially with him being in strict isolation, so we were able to go straight back away from other patients. He was upset about the shots all afternoon. We used the numbing cream on them to try to help. Just before it was time to get them, we said a prayer. He was so brave and the nurses did an awesome job of working together to give them at the same time. I heard and saw it was tough for them to fight back tears seeing him. Just prior to getting the shots he was just wishing he could be anywhere else but there. That is the hardest times. When you wish you could take it for him. Take the pain and the shots and the attack on your body and everything else that comes with it. The shots really burn. They were great to bring some heat packs for them and I did my best to take his mind off it. Thankfully within about 10 minutes, he was feeling some relief in the pain from the shots.

When he asked if he'd have to get them again, my breath caught. I've always promised to be honest with him. Thankfully it looks like he'll only have the shots once more next month. I'm praying there's a way they can give it to him while he's sedated. It's so traumatic and painful. We're back home now and celebrating with a movie dad picked up after work. Brayden's been having fun playing in a tent we made for him in the living room! We're going to try to sneak to a friend's family's garden tomorrow for pumpkins. With masks, of course. So thanks to Heather and Ms. Linda for such a sweet and gracious offer. Dad has to work this weekend, so I've got some tricks up my sleeve for some fun things for him to hopefully pass the time and keep him entertained and happy.

For now, we're praying for no side effects and watching him closely. He had to stay for an hour after the shots and be observed for reactions, so we're thankful the first hour was uneventful. We leave out again Monday morning for more chemo. So definitely we're praying for continued protection for his heart and organs, for protection from infection since his immune system is so suppressed right now. We're worried about him being so sick again the day after like this time. We just want to minimize the burden for him. No mouth sores yet, so that's certainly something to be thankful for again. We hope everyone enjoys this beautiful fall weekend!

Tuesday, October 13, 2009

On Empty

It was a very long day yesterday that was kicked off with only a couple hours of sleep. Poor Dad got to drive in the torrential rains all the way south. Brayden had to not eat or drink and by 12:00 for his sedation, he was getting pretty nauseated. Thankfully his nausea meds kicked in and the sedation went well. Everything stats wise looked good. They checked for all the liver function tests so that was good to hear. We were stunned that Brayden slept 3 hours after coming out of sedation with intrathecal chemo (spinal). That NEVER happens. He was administered 2 chemo meds via his port and had to post-hydrate for an hour. The ride home seemed to never end. After not eating since the night before, he realized he was hungry. We had bathroom stops and pharmacy stops. Multiple times. Long story...

We were all exhausted by the time we got home. This morning came way too soon. Brayden was not feeling well at all. He pushed on, insisted on breakfast but I knew we were in trouble when he couldn't eat it. He wanted to do the webcam for school but within minutes, he was sick. It's been a very hard day. By late morning after the 3rd anti-nausea medicine, he finally started getting some relief. I was thankful he was sleeping but petrified how we were going to get all his meds down to stay. I was so happy when he got some sleep and finally seemed interested in some carnation instant breakfast. I was worried when he said his mouth was burning. We were sad to learn he can develop mouth sores from this round of chemo as well. So more mouth watching and maintenance for him. I was so happy when Nini Annette showed up and came to our rescue. I don't know what either of us would have done without her today while I tried to keep pressing on and getting work done after he started feeling better. We've had some hot green tea, ramen noodles, and later some easy mac. So hopefully tomorrrow will be a better day.

We found out yesterday that Brayden's Oncologist has put him on Strict Isolation for this month. His counts will appear safe, however, this chemo regimen of meds is intented to kill his t-cells to ensure all the Leukemia remains gone. The bad thing is it again kills the good cells, therefore his ability to fight off infection is greatly diminished. The good news is unlike being Neutropenic, he shouldn't develop a fever as a symptom, unless he truly has caught something. So we're praying he remains healthy. Our plans for Halloween have been de-railed. We're not sure now about our annual tradition of the Pumpkin Patch. We're still trying to figure it all out. We're thankful all this means to keep him safe and healthy.

Thursday Brayden will have chemo locally: 2 shots in his legs that we call asparagus. Next Monday we return back to Little Rock for another round of chemo. And the best news of all? We found out he has to start back on steroids. The emotional impact of steroids is the worst thing for me as a mom to see in my sweet boy. It's truly a roller coaster of emotions that we already have seen a glimpse of this evening.

I think we're all truly on empty today. Yesterday was a long trip. We were glad to be back home in our own beds. Today was so hard to see him like this and I can't imagine how hard it was for him. I'm so hoping it's short-term. He has 2 more rounds of this regimen then the ugly round of the med that made him the sickest last time. We can see a glimmer of light and we're trying to stay focused on that for now. Thank you so much for all your prayers...

Sunday, October 11, 2009

Delayed Intensification Begins

We found out late Friday we continue on to the next phase of Chemo. This is the last 2-month block of chemo Brayden will have before moving into the 3-year Maintenance regimen of chemo meds. The good news is his EKG and Echo-cardiogram were 'good' and his counts were high enough to allow us to go to Little Rock bright and early tomorrow morning again for treatment. We're so glad Daddy gets to go with us. It's the first time in 3 months he's been able to go too. We'll do everything in Clinic and should be able to return home later in the afternoon. So tomorrow, Brayden will have another spinal sedation (LP) with chemo for his spinal fluid. Of course, he's excited to again have the 'dizzy medicine.' He'll have several meds he hasn't had since the first couple weeks of treatment. We're praying for protection for his heart and his other major organs during this chemo's vigorous attempt to not allow the Leukemia blasts to return. We're certainly praying for protection for his counts to stay high. We heard we are to all have flu shots tomorrow, so we're praying no adverse effects from that either. We're praying during the spinal fluid draw, the results will be clear of Leukemia.

We had a nice weekend celebrating Daddy's big birthday with family that came in. Our anniversary was this weekend. It's certainly reaffirmed for me how thankful I am for our firm foundation. The last 5 1/2 months haven't been easy at all. We know we have to stick together to get through this long journey and come through the other side as a stronger family.

My heart is heavy tonight. I'm reading about 2 lovely little girls whose lives have been changed by Childhood Cancer. Please continue to pray for Kate. Please also pray for Hannah. She's from our area and also was diagnosed with ALL. She's the little girl we mentioned hearing about the last time we were at ACH. She is going through so much right now and has been transferred to the PICU. I can't imagine the ALL diagnosis ON TOP OF all the other things that have come about for this little girl and her family. Please don't take anything for granted. Love your children and be so thankful for their health...for their ability to smile and eat without a tube. For being able to run and play without interference from iv's and nerve damage from the effects of chemo...for being able to go to Chick-Fil-A and play without worry of germs...for being able to go to a toy store without worry or play with a friend outside or go to school. On the days you are tired and dragging and interrupted with another question or need from those sweet children, stop and think of these other little children who don't have that opportunity to interrupt. Smile and be grateful for the interruption and I pray your heart be filled with love, joy, rejuvenation, and exhilaration at the gratefulness of a healthy child. Realize these are things to treasure and take joy in the interruption. I know many parents dream of those days, long for those days that used to be normal and how quickly we would react differently now that we know how it is to long for the interruption once again.

Wednesday, October 7, 2009

Tests & Thank-You's

A big thank you to everyone who came out to Chick-fil-A tonight. We loved hearing thru texts, calls, how much love was floating around there...and chicken! Thanks for eating chicken for Brayden. Thank you to the most awesome group of friends for all of your work and involvement and time away from your families to be there tonight on behalf of our family. Thank you to my mom for being there to show everyone love from us and for us. Thank you to all the crew from Chick-fil-A for all your work, your kindness, and your hospitality. Thank you to Chick-fil-A for your generosity. I can't wait until we can do a thank-you celebration and have Brayden there to see everyone in person.

Tomorrow is a big day. Brayden will have his EKG and Echo cardiogram tomorrow. We're praying his heart is free from damage or impact as a result of the chemo meds. We also pray that if he's released to continue with the aggressive chemo meds on Monday, that his heart will remain protected from the damage and side effects the drugs warn against.

Here's a few quick pics from Little Rock last week. This is the last bag of this 1 chemo med from the long list of many he's gotten and will continue to have over the next 3 years. But getting to cross this one off the list was particularly exciting. It was this med (High-Dose Methotrexate) that came with a 4-day hospital stay with each dose and definitely caused nausea, loss of appetite, but more than anything, the regular use of a urinal and TOO MUCH WATER! Brayden was giving the thumbs-up celebrating the last bag being finished. Each bag looked so daunting. He would have 2 bags, each one running over 12 hours, and they were HUGE bags of chemo meds. Very daunting to see them first set it up...

There are many more chemo regimens to come but we're thankful to be able to again say good-bye to another 2-month block of treatment and get closer to the Maintenance phase and those chemo meds.

Don't ya just love Chick-fil-A?

Tonight is Spirit Night at Chick-fil-A in Bentonville off Walton. Some wonderful friends have pulled this together and the awesome people at Chick-fil-A will donate a portion of tonight's proceeds to help defray costs with Brayden's diagnosis. All you have to do is go and enjoy some yummy chicken from 4-9, be sure and mention Brayden's name or bring in the attached paper, and they'll sign the receipt and donate to Brayden's fund.

This was a tough decision for us to agree, but after talking it over with family and friends agreed. With weekly trips to Little Rock for the last 5 months, hospital stays, and 3 more years and bi-weekly trips, we have realized quickly how the additional costs can add up. Missed time at work and the future impacts of Brayden's diagnosis still aren't fully known. But we wanted everyone to know we take this very seriously and feel we have to be good stewards of those donations. Our plan is if we don't have to use it, we'll donate it back to the Oncology Dept at ACH after his treatment timeline is complete! We haven't taken any CMN monies or other monies other than personal gifts that our friends, family and colleagues have graciously given, to which we are so thankful for. The couple of gas cards were a big help on the 500 mile trips! We've used the gift cards while staying at ACH and having to eat in the cafeteria. It adds up SO fast! Anyway...thank you for all those that can come. Thank you to each of my friends for helping to pull this together. Thank you to Chick-fil-A for your gracious donation and all your help with making this possible!
Brayden's Spirit Night Form

Monday, October 5, 2009

Childlike Faith

I wrote this while trying to sleep at Arkansas Children's Hospital in Little Rock last week. Brayden had been blessed with an MP3 player with Christian songs and praise hymns from his buddy Chris (along with the coolest drum sticks!) and it's such a comfort for Brayden to listen to. I brought a little speaker for it and hoped it would help Brayden finally drift off to sleep. As I lay there reviewing all the day brought in my mind...the final round of High-Dose Methotrexate, the journey ahead with Radiation and some aggressive chemo meds...I heard this. A beautiful, sweet voice, praising and singing. I had to share it with you. Ignore the quality; I was just happy to capture it in some way to take me back to that night. "The noise of all 3 pumps running on his IV pole were silenced tonight. Silenced by the songs of a sweet boy who loves Jesus and was praising with Chris Tomlin and others on his MP3 player. Oh, to have the faith of a child. Blindly believing with unquestionable faith. Lord, help us all to have that kind of faith. Knowing no matter what he's been through or going through, he still loves You. Thank you, Jesus."
video

Sunday, October 4, 2009

Running for Childhood Cancer

No, close your mouths. It's not me or Bryan! I'm so thankful to work for such a wonderful company with really great people. Several weeks back, we were contacted by someone who worked up in our Minneapolis plant who heard about Brayden and reached out to us. Having experienced childhood cancer too closely within his own family, he understood what we were going through. He decided 3 years ago to begin training and run for a reason. He's the same age as my mom (that's all I'll say!) and I think it's remarkable that he is so strong and so determined. He definitely makes me feel like a slacker!

This morning, right now, he is lining up at the starting line in the Twin Cities Marathon in Minneapolis, MN, running on behalf of Brayden and another little girl, both with forms of Childhood Cancer. Thank you, Tim, for honoring Brayden in this way. We're cheering you on from far away and via the internet! We pray for your strength and endurance to carry you to the finish line, we pray for good weather, we pray for your mind to be strong and God be with you the entire way! We are more than honored to be in your thoughts and prayers this morning as you are running. What an awesome example you are! We are praying that more cures are found and that less and less children and families have to face this awful disease. 1 in every 330 children is too many.

We also have other company friends running - so go TEAM MALT-O-MEAL!! We will be thinking of all of you all day today and checking your progress on line. Run, Tim, Run!
Track Tim's Progress in the Marathon today and click refresh after the link comes up!

Saturday, October 3, 2009

Back to "Behaving in the Cave"

Yes, we were back in the cave rooms this week while at Children's. Sorry I haven't been able to post an update sooner since we didn't have access in the rooms. I rarely leave Brayden, so I decided I'd wait til we were back home. The week went well. I was nervous on Monday when Brayden's 6-hr pre-hydration didn't clear as early as it usually does. They did some additional meds to help ensure he was prepped. Doing so made me pray extra hard for protection for his kidneys for this LAST ROUND of HIGH-DOSE METHOTREXATE - YEAH! I took a picture of the HUGE bag that he gets twice that runs for 24 hours straight. I'll post soon. It's certainly the little victories that we celebrate. Thankfully with the chemo, there wasn't anything different from past rounds that we went through. I was thrilled that daddy suggested we bring Easy Mac with us this time and it worked like a charm. Brayden ate better and still enjoyed his water-flavored green tea mixes. Thankfully we got to go home about the same time as last time on Thursday afternoon. He was sick that morning, but then eager to go. He had been so excited to see that last bag of chemo come down. We have many more chemo regimens (3 years worth) but this was the last time for this one. Bye-bye big, yellow bags!

I have to share a quick story with you. Brayden was unusually rambunctious this week. I remember my mom using that word to describe us girls growing up. Uh - no. I think until you see a 9-year old boy itching to go home and comfortable with the hospital, nurses, workers to CONSTANTLY tease and be sarcastic with them, you haven't seen rambunctious! He was on a roll this week and we were glad he felt good. We even joked needing to get him one of the baby beds with the metal rails because you couldn't keep him down this week. He was particularly silly with his Dr. He kept giving me the eye like, "What have you been feeding this kid? Straight sugar?" I think they know me better than that. But I tried telling him I had no idea what was going on. I know now in reflecting, it was another block of treatment we could cross off our list. Another big long sheet of paper of medicines, dates, side effects, worries, that we could toss aside. Brayden was feeling relief and joy at this being the last of something in this never-ending treatment battle with this disease. So, his Dr. decided to do a little teasing of his own. He decided, no more Zofran (the miracle anti-nausea drug he is on constantly while admitted) and no more Emla cream (that helps numb his port before being accessed). Brayden looked at his eyes...was he serious? Teasing? His Dr.'s face remained steady. Brayden challenged him back, 'Yeah, right!' So, Dr. leaves, we prepare for his port access, blood work, admission process when suddenly his Dr. returns. Uh-oh. He's printed off Brayden's orders for his chemo. At the top is Zofran. He's DC'd it on the paperwork, initialed it, and signed it at the bottom. "See, Brayden? I told you." Brayden mulled over the paperwork and there was a flicker of him thinking, "Uh-oh; I've pushed it too far in my silliness with him." His Dr. broke his straight face and laughed and reassured Brayden what a great kid he is and how much fun he has with him. He ripped up the orders and Brayden got a kick out of the "See, I told you it wasn't real" prods with him! It wasn't until later I really thought about all the trouble he went through to pull up and print off orders, sign them and bring them back all to tease Brayden. We're so thankful for the wonderful staff there. That made a lasting impact on us and we so love his Dr. that we were blessed to be working with through everything.

Brayden spent the week asking a lot of questions, helping the nurses as much as they'd allow. He's getting more and more comfortable with everything. It feels like we have 2 more hurdles to clear before the waters calm a bit: this rough 2-month block of treatment, Radiation, then the 3-year maintenance begins. We found out Brayden needs to have an ECO on his heart next week. This will help ensure his heart is still healthy enough and can endure the next chemo regimen. These medicines are some dangerous ones that he had after first being diagnosed. Once reminded, it took me back to the early days and I realized how catatonic I really was then, just 5 months ago. I had become numb trying to protect myself from all the gruesome details, side effects, risk factors, and just praying Brayden would pull through and trying to be strong and steady for him. He has done and continues to do so wonderfully. Now knowing these drugs are coming back again is unnerving, to say the least. Assuming his counts are high enough to proceed, the results of the ECO are good, we'll return to Little Rock October 12th. He'll have another spinal sedation to treat the brain cells with chemo again. And then the other chemo meds that we'll certainly be praying for protection for his body from their harmful effects.

We learned of a little girl this week who was also diagnosed with ALL just two weeks ago and suffered a stroke as a result. The chemo is to help but once it takes effect, the Leukemia cells can wreak havoc on the body. Please pray for her. I don't want to post her name without the family's permission. They are enduring a lot right now...and the Leukemia diagnosis is enough. I can't imagine enduring the side effects of the stroke as well. Thank you all for your love and prayers. Thank you for continuing to remember Brayden. Thank you for walking this journey with us and agreeing with us in lifting up Brayden in prayer. We are so thankful for that above all. Here's another example. After reading this and hearing from a teacher from Brayden's school, I had goose bumps and couldn't hold back the tears. I was so excited to tell Brayden and he thought it was SO NEAT! Thank you, Lord, for an awesome school!

"...I teach 6th grade at ACA. I took my students and several parents to the Pharoah exhibt at the Arkansas Arts Center in Little Rock, yesterday. On our way out of town, about 2:30, we came to the Arkansas Children's Hospital parking lot. We got out of the cars, formed a large circle, and prayed for Brayden, you and your husband. We just wanted you to know, and know that your are in our prayers daily.

Our love to Brayden..."