Jones Family

Jones Family
November 2009

Friday, April 30, 2010

The Dash

The last 11 days have been so emotional for me and Bryan. Last week, I'm not sure if my post fully reflected the fear that was gripping me. Brayden's out of the normal blood count results really shook me to the core. The nurse tried to reassure me, but I didn't understand why things were suddenly different. Your mind takes you places your heart can't handle. I prayed and tried to stay focused on the present and not allow myself to think beyond the moment. It was just too much. Things got a bit better with the fear still looming in the back of my mind. I was so thankful to get away and get some scrapbooking time with some sweet friends at my Mom's scrapbook getaway weekend at her house. It was wonderfully relaxing and a great way to, if not re-charge, then at least un-plug for a bit. Sunday hit me hard. Suddenly Brayden was lethargic, in pain, and didn't want to eat dinner. My eyes hopefully told Bryan everything I couldn't say as we gathered around him and prayed together...our little tiny family. I kept hearing in my heart that verse ..."where two or three are gathered in my name, there I will be also." I prayed God was with us in that difficult moment of uncertainty and panic of wondering the worst. I couldn't say it out loud. This is the first time I've admitted the core of my fear. Was the Leukemia back?

Brayden finally was able to rest while Bryan and I sat shell-shocked. There was comfort in knowing we were returning to Children's the next morning early. But with that comfort of knowing he's taken care of by the best, did we want to know the results we would see? Sleep was the last thing on our minds as I started to wonder if I needed to pack a bag, get the house ready. Would we return home the next day? Should I take some of Brayden's favorite things with me? It all took me back to one year ago and walking into our house 10 days later than how we'd left it that night after dinner for the ER trip when we learned of Brayden's diagnosis. I was so angry for allowing my thoughts to go there. I was not going to prepare for the worst. Why was my mind racing? I was letting fear take over! Yet, you know and hear statistics and see it all around you. We had a week of that blood work looming overhead and now his physical reactions Sunday sent me into a tailspin.

Bryan and I finally realized we'd have to try to sleep. Around midnight my quiet tears finally allowed to flow without Brayden seeing, I confided in Bryan something I've never said out loud. Isn't it strange how we can have these fears in our hearts but if we don't say them out loud, it won't bring truth to them or the weight of them won't seem impossible to bear? I confided in him that I wondered if we would always worry? Would we always be holding our breath? Would we always wonder at every bruise that comes up in the future? He did his best to comfort and console as we both felt the weight of that answer. Yes. I miss the old days. I miss the worrying about little things that don't even matter now. It seems so far away that we would worry about other things that had nothing to do with sickness or blood work or chemo or hospital stays or horrible things like relapse.

3am shook me out of what little sleep we had found. I got up wondering what to do. Pray. I prayed over Brayden again. My sweet mother-in-law knew some of the fear we were facing and encouraged me to say "I trust you, Lord." That's hard. We want to trust. But do we fully? I was reminded of our Branson weekend celebration a couple weeks ago when Brayden and I were walking around before the show started. There were Bible story pictures on the wall. One was of Abraham and Isaac, with Isaac on the altar. I've thought of this story many times in the early days of diagnosis. Do we really trust God enough to let go of our precious child and give him to Him? Brayden asked about it and the air was gone out of me. I couldn't formulate the words knowing that tears were right on the edge. I told him we'd talk about it some day after only being able to say that God wanted to see if Abraham trusted Him, even with his own son. I trust you, Lord. I can't even type it without getting emotional and feeling the weight of that. I trust you, Lord. Do we really? To the core? Can we let go? I'm still learning and not there even now. I was thankful for that time in the middle of the night while working to relinquish the control I try to maintain on things that aren't mine to control. Brayden is ours but only for a time. I have to remember to keep him in God's hands.

The early morning trip to Little Rock was uneventful. Bryan and I were quiet with my thoughts still spinning out of control. I trust you, Lord. Brayden was much better, still a little nauseated, but certainly in better spirits. We learned he had grown another inch! He's getting so tall. Did we tell you about his spikes? His hair was finally long enough to start gelling again and his spikes are so adorable! Everyone couldn't believe how much hair he's had grow back and how it's starting to curl a bit! His Oncologist looked him over and remarked again how incredible Brayden looks. Other than the pollen suffering that everyone is feeling this year, he looked 'great.' We asked some gentle questions, trying not to worry Brayden. What to look for, should we be worried, how would they know if there was a 'blast' that showed up. The Leukemia starts as a blast and then quickly multiplies. So now we knew a little bit more, but I'm not sure that it helped. I trust you, Lord. It was another 2+ hours before we had the lab results. In that time, another sweet Mom who had reached out to me in the early days was there with her son. His diagnosis came at 3 and then he relapsed. Hearing her story sent that paralyzing fear through me again. I felt myself breaking apart. Bryan decided to take Brayden to walk around. I had been breathing prayers during our waiting time. Finally I stopped. I looked around and started to really see the others in the waiting room. You can tell sometimes at what stage in treatment some of the other Oncology children are in, just by their hair or the looks on the faces of the parents. But it was the other mothers that really got me. Had I missed this all along? Probably so wound up in our situation and my focus on Brayden hadn't allowed me the chance to stop and really see the others around us facing similar battles and fear. My eyes stopped on another mother whose eyes broke my heart. I felt where she was at and remembered it all too well for the first time in a while. She was holding her son with blankets and his mask on. We would have never known it was a little boy who was probably 5 or 6 who was so small and fragile. He had been crying in pain and she was consoling him. You could see she hadn't had much sleep or rest and there was that desperation there that I've felt too. I wanted to do something to help. I realized again the best thing I could do is pray. I felt so selfish for the prayers of mine that day without concern for others around me. I prayed for God to give her that much-needed reprieve and to guard her heart and to provide her a renewed spirit to continue. I pray she felt that in those moments and hours that followed.

Once the boys came back, Brayden's chemo was started and Bryan and I just looked at each other. I finally asked the nurse what I wasn't sure I wanted to know. "So I guess his blood work looked okay to get chemo?" She got another nurse to bring us the copy of the results. Everything was clear. It was such a relief. I'm mad that I allowed doubt to still creep in, but Lord, I trust You. We felt so renewed ourselves with the good news. I love that for now, Brayden was oblivious to our relief. It was another Monday of getting chemo for him. We decided to celebrate and have a rare treat and eat out...actually inside a restaurant at a table! Brayden was jumping up and down at this opportunity he knows doesn't come along often. He did SO great and was careful not to scare me too much and remembering to Germ-X AFTER touching the menu. That evening felt like a new day, like a gift. I was so thankful for that moment of relief and pray that time span until the next worry or fear that creeps up is much longer away. In the meantime, I'm remembering to work to trust Him more.

This week has been a week of loss and grief. Another sweet boy we met via Caring Bridge lost his battle with cancer. He was 8. Please say a prayer for his family during this unimaginable time of loss. He was able to be at home with them after months of chemo his cancer stopped responding and took over his little body. Then Tuesday night we were rocked to the core when we received an email. A little girl from Brayden's school had passed away. I struggled with how to tell Brayden. He's faced loss before and the comfort has been in Heaven and knowing they're in a better place. We sat Brayden down and he talked about how he knew her brother. We gently explained what had happened and we started to pray together as a family for the comfort of this family facing such incredible loss. Suddenly Brayden's grief for this other sweet boy losing his sister was just more than he could bear. It was such a tough couple of hours in comforting him. I was so worried about having the right words to say. I found myself having conversations with him about loss I had hoped to never have. I remembered the fear last year of wondering if I'd have to have those conversations with him at that time. It was hard saying the words out loud. But it was a good reminder for all of us. We're only here on this earth a short time. Please be in prayer for this grieving family as well. The next morning our thoughts were with them as we prepared for school and I dropped Brayden off. It was the last thing I wanted to do. I wanted to keep him with me all day in our little home cocoon. The faces of other parents in the parking lot said it all. I breathed prayers again as we could only imagine what this sweet Mom was feeling today.

Please remember to not take any time with our sweet children for granted. Revel in the mediocre. I love mediocre & boring! I miss those boring days with no reminders of pills or schedules or appts or checking ports or sneaking a check for fever when he's not realizing what I'm doing. Our time is so short. Which brings me to the "Dash" from the title of the post. The other sweet boy that lost his battle on Monday had his funeral this week. An amazing thing was shared at his graveside service that they shared with others on their Caring Bridge site that I wanted to share here. The premise is that on our tombstone we will all have a birth and death date, but it is the dash in between that really matters the most. The people whose lives you have touched will know what the dash really means. It doesn't matter the dates on the other sides of the dash. No matter how short, as we've felt personally in our own lives with other losses, so many have been touched. I pray today that your life has been touched in a special way through Brayden's Journey. How are we spending our dash? Please click hear to read "The Dash Poem". And I promise to work harder to trust Him if you will too?

Wednesday, April 21, 2010

1 year ago...Thankful

This day is a bit harder than I thought it would be. So much of it mirrored this same day last year. Getting up and ready for school and work. Breakfast with my sweet boy. Fixing lunch for the day. Dad already at work. Dropping him off at school. Walking in with him. Then walking out after hugging/saying goodbyes. Visiting with another Mom about the hectic pace of life. And just a few short hours later...the ER. The "C" word. Tears, losing breath, wondering how I can stand, not able to hold a pencil or face the blue eyes of my sweet boy. How do I tell him? Then the life flight. Then Arkansas Children's Hospital. ICU. Diagnosis. Fear.

Words fail me today. I'm grieving and didn't see it coming. Holding on to the thankfulness and gratefulness and appreciation of another day, another year is getting me by. I'm overwhelmed with sadness. Had I been avoiding this all along? Brayden knows what today is. We talked about it a lot this weekend in our getaway to Branson to celebrate this journey and his amazing strength, tenacity and resilience. He asked me last night, "Mom, so tomorrow. That's the day last year when I was hitting golf balls with Dad at the driving range, right?" Yep. Everything seemed so normal and right and within hours your world collapses all around you. Words you never thought you'd say like survival, success rate, side effects, risks, chest tube, mass, chemo, Leukemia become a part of your vocabulary in a way you scream and wish they never were. Having to face Brayden through this has been the toughest part. I've tried to protect him from it. I can't. So we walk together, hand in hand. The hugs and pats, and leans and kisses the last few days from Brayden have been so special. I don't want to take them for granted. I love when he unexpectedly rubs my back or gives me a hug without me asking for one or smothering him with one! I'm so thankful for those moments. It's impossible to fathom how after this year we could ever take even one of those for granted.

I'm not sure how the rest of the hours of today will unfold. We want to honor Brayden's courageous fight and celebrate all that he has endured while knowing so many risks and what-if's that loom overhead. I want to share more with each of you and pray I have the strength to do so. I'm working to not be fearful this week. Brayden's blood results on Monday knocked the breath out of me. After a double-check they were confirmed. His counts aren't too low...they're worrying me they are too high. I'm working to not be alarmed until we return to ACH on Monday. It concerns me that the pattern they've had for 4 months next week has never shown this. Before I ask a million more questions and let fear grip me into paralysis, I'm trying to breath and not read too much into the results. For now, we're thankful he was able to receive chemo. He's so happy to be at school this week. For that, I am thankful.

I spent some time this past weekend reading old emails. I've kept them all. Every note and email and card. So much of what each of you and many others said carried us through. It was unnerving to read my words from those first hours and days and be sent into a tailspin of emotion and feel, smell, hear all that happened one year ago today. Realization has dawned that we have yet to truly heal from it all. It feels like we're just now able to start to look at the fresh wound we've tried to avoid. Have we gone through the motions? Does shock really last this long? It scares me to wonder if Brayden is where we are. I pray his sweet spirit, his precious heart full of faith and without the knowledge of what unbelief even looks like has helped him to move forward further than where we are. I pray we aren't holding him back from his emotional healing from the scars from the last year. I feel more ill-equipped than ever to ensure I am providing what he needs. So I hold fast to the faith that I am not his Provider and I can never give Brayden ALL he needs. So we pray and I hear Brayden's thankful words to our Father for his healing and helping him to get through this past year and I cry tears of thankfulness for a child whose generations of faith throughout our families have prepared him for such a time as this. Psalm 5:11

I read this today and it met me right where I am from a daily email called (In)Courage written by Robin.
- we are not raising our children for ourselves but for someone else; whether that's relative to their future mates or solely for service to the King;
- that regardless of circumstantial or perceived danger, their is no safer place than in the center of God's will;
- there is no greater joy than to know our children are walking in truth

Here are my good intentions finally coming to fruition with some pictures to share and see the thankfulness of normalcy at play for Brayden.

December 2009 - Mom's favorite shirt

January 2010

February 2010 - silly Brayden with sprouts of new baby hair starting to peak through

March 2010 - Return of Spring and a chance to play outside

10th Birthday

Finally able to see the AR State Capital in person

March 29th, 2010 - 1st Day Back to school. So happy to finally use his new backpack

Birthday Celebration finally with family

April 2010 - Time with family, Great-Grandparents indeed!!

Easter - Time with family

1-year Celebration weekend in Branson - Noah the Musical

Looking up and seeing this melted my heart...Daddy's Footsteps

4/19 - Impromtu Field trip - while getting Chemo on Monday at the local Oncology clinic, they took Brayden back and let him look at his own blood under the microscope! Check out those curls coming in!

4/20 - Back to good times - soaking up the spring sun & loving outside with Hershey

Tuesday, April 20, 2010

Celebration Blood Drive

It's hard to imagine it's been 1 year tomorrow....1 year since our lives were forever changed. Although hardly a day goes by when we're not gripped by fear of the what-if's, we're so thankful for this gift of new life and 1 year we have been given with our sweet Brayden. A lot has changed since last year's ER visit, life flight to Arkansas Children's Hospital, ICU and the horrible diagnosis of a rare form of Leukemia, T-Cell ALL. Countless rounds of aggressive, high-risk Chemotherapy, Radiation, blood transfusions, and a year of missed school and times with friends tested our hearts and we've leaned on our love for one another and our faith to get us through. We're so thankful for all the prayers sent up on Brayden's behalf. We're thankful for little things today like another birthday, new baby hair growing back and his bald head becoming more of a memory, returning to school and friends and recess, a chance to go out to eat or see a movie or just play outside after so many days in strict isolation while his system was too weak to fight off even his own germs.

Brayden has been truly resilient and yet we have another 2 1/2 years to go with weekly chemo and monthly trips to Arkansas Children's Hospital while we long for the day we hear REMISSION. We want to celebrate Brayden's journey this past year since his diagnosis and all that he's endured by having another Blood Drive to give back. We have been personally touched by other donors and taking a few minutes to give blood and give back is such a priceless gift. Please help us honor Brayden's fight and sign up today to give blood! We want to help get enough donors in to reach our goal and are so thankful to all those who gave last time to help us surpass our goal! If you donated last time, you can give again!! Please join us on this special day of celebration Wednesday, May 12th, 9-3 at the Bentonville Plaza. You can drop in to donate or use the details below to secure your appointment time. Thank you in advance for your time & giving the gift of life!!

Tuesday, April 6, 2010

1st Day of School, Easter, and Time

What a week! Such a whirlwind and I can’t believe another week has passed. Brayden’s had a great week. After his Oncologist increased the dosage on his medicine that helps with the Neuropathy in his legs, we saw an amazing difference. He’s not complained nearly as much about the leg pain and we were so relieved to see him able to get around a bit easier before his big return to school. That first morning back was a flurry of activity. A truly special moment was our little drive to school, windows down, breathing in the spring air, listening to the creek as we passed by, having our morning prayer. He said, “Just like the old times, huh, Mom?” Yep – and I wouldn’t want it any other way. What a blessing, what a miracle. As I was treasuring the quiet moments, we pulled into the school parking lot and I reach for my camera and realize…Brayden is GONE! He tore off through the parking lot as I yelled after him. I guess the anticipation was just too much. I trailed behind him hearing all the kiddos in the hallway telling each other, “Brayden’s back!” It was so special! His teacher from last year gave me a hug and was grinning from ear to ear. I was glad she was able to fill me in on what I missed. Brayden had burst through his classroom door announcing, “I’m BAAAACK!” Too funny. So there aren’t many pictures for me to share, but I’ll share what I can!

The two half-days back were so full of activity and excitement. The kids were so supportive and so excited to have him back. We played a little trick on him while the kids sang Happy Birthday to him at lunch, even though he wasn’t staying. There were so many wonderful moments. He was drinking it all in and seeing him beaming was doing my heart good and I could tell from him the enjoyment of being back at his school with all his friends, his classmates, his teacher, was also doing his heart good. The long Easter weekend was a good break to see how his stamina would hold out. We were able to have a celebration dinner with our family for his birthday. Due to his counts, we had to put any get-togethers on hold from before. We had a fun dinner at World Garden and Aunt Stephanie had some yummy birthday cupcakes waiting for us at her house. He was so cute seeing him love on his cousins he hadn’t been able to see in a while.

Friday we headed out for my Grandparents’ in Oklahoma. It’s so peaceful there. Just seeing the beautiful land, hearing the birds, smelling the fresh air rejuvenated both me and Brayden. He’s decided he wants to move there and of course, Grandma would LOVE to have us closer! I was so glad she was able to see him so healthy. She hadn’t seen him through the hair loss, Radiation effects, and the last 4 months when it had been so tough to see him and there was no denying the impact his treatment protocol was having on him. Even though it had been a while, I know the wait was a good thing and it was good for her to see him with lots of hair and looking so much healthier than before. Brayden loved getting to be in a hotel – just me and him – that night. Dad had to work, so we were on our own. The next morning, we headed over to Bryan’s family’s house to hang out, dye Easter eggs, have a big hunt at the park and play. We realized it had been over a year since we’d been to their house. Wow…it was so good to see everyone again. Brayden’s other cousin turned 2 a few months back and it was precious to see them so happy to see one another. It was a gorgeous day and we loved having time to visit and enjoy the Easter festivities with family. Sunday marked Brayden’s first time to be back at Church in over a year. He loved getting to see all the familiar faces. Our hearts were warmed by all the encouraging smiles and hugs and reminders of prayer sent up on Brayden’s behalf over the past 11 months. We were sad to have to head home, but we knew Monday was another big day!

Today marked Brayden’s first FULL day back at school. He was so anxious last night planning his lunch to pack for the next day. Just getting to stay a whole day and getting to eat lunch with his friends was reason to celebrate. I’m still a bundle of nerves. We prepped with plans to make sure he’s cautious and using Clorox wipes, Germ-X, and washing his hands correctly throughout the day. I know the risks with having him in school yet we know the benefits for him being there are so substantial. He’s no longer in his little bubble with me each day. I’m praying he has endurance to make it through a long day. I pray his stamina holds out without him having to over-do it to keep up with his friends at recess. Then after the school day, we’ll go directly to the local clinic to check his blood counts and have his monthly chemo cycle administered. The new normal for all of us…sitting at work wondering if he’s okay and how he’s doing and what he’s thinking still knowing the chemo continues and the battle rages on against his body. I hope the worry subsides as we settle in more to our new normal.

It’s been an incredible week. I was reading another Mom’s words as they fight with their daughter and identified so intimately with her words resonating about time. Cancer steals time and you wake up and think it should be the start of the school year…it’s the end. I’m glad he’s going back but did we really lose a year? Are there really only 7 weeks left? I’m trying to frame it in my head that we gained a year in a very special way vs. wrapping my brain around the time that has passed. The time aspect has been hitting me especially hard in such an emotional way lately. I guess it’s the realization how quickly he’s growing up. Spring is here again and it feels like time stood still in some ways for us since last Spring’s changes. We felt like we missed summer and it’s crazy to think it’s circling back again. I was fortunate to give blood at another ACH family’s drive last week. It was wonderful to see the tremendous response they were able to receive. I had been unable to give at Brayden’s Blood Drive in December because of him having to be in un-planned Isolation. It was so fulfilling to be able to give back in such a personal way and realize how much this means to our family and others. Brayden was so protective when I got back home and checking out my wound! It’s nothing compared to what he has to endure yet seeing him so protective of what little I endured caused me to wonder when he will truly grasp the gravity of all he has been through. We try to protect him from so much as well as those of you who follow his journey here. There are still so many moments we hold our breath and pray for the miracle to continue – that Brayden’s response to treatment will continue to remain positive and that his protection from all that he’s endured will remain. I try to push all the fear aside and continue to live each day. Even while some things seem so tedious like taxes, work, bills and school – I try to focus on the little moments in life and not take any of those for granted.