Jones Family

Jones Family
November 2009

Monday, January 11, 2010

Whirlwind Weekend...And a Miracle

Wow...the days have really flown by lately. We had a BIG surprise and got to take Brayden Friday afternoon for the last hour of school to be with his friends. I was cracking up! He all of a sudden couldn't walk or stay quiet! He ran to his classroom and it was precious seeing all of his classmates' faces light up! He knocked and ran in to his class! His teacher had this look and I okayed everyone that he was alright. They took turns and ran up to give him big hugs. His buddy still did their old secret handshake/body bump! Brayden assured me later he did it with his right shoulder away from his port. Did my eyes bulge that much when he did it that he caught that look of concern in my eye? I had to smile that he thought of that and was so proud he was being careful. I felt so bad for his sweet teacher. Brayden literally had no filter and said EVERYTHING he thought! He marched straight to his desk and started unpacking. I guess right before we left when he asked me if he could take the Cowboys backpack he got this summer, he made sure to pack it up! He was settling in. He said several times, "Whew! This is so much better than the webcam!" I kept trying to sshhhh him but it was in vain. He was just overjoyed to be able to be physically with his class again for the first time in 4th grade.

Our timing was good in that he got to present a Book Report he had done for the class with some of the other children. Then they got to go to the corner for one of their curriculum books and popcorn read. As I sat back and took it all in, my heart was full. He was finally able to interact and feel normal for just a bit. I also mourned the loss of the normal days he'd missed. My heart lurched hearing another buddy mention the infrequent haircuts Brayden would be needing! Brayden took it in stride saying he'd be having more haircuts again soon. Hearing him read, seeing the sweet looks from his friends, realizing he was having this special time was so emotional. There are times when it hits me just how much things have changed and seeing him amongst his peers was another time. But hearing his comments and outbursts and seeing his smile put all of that aside. He truly loved that last hour of the day and is counting the days until he can go back full time.

We knew Brayden could go for a quick visit because his counts were so high. He's been on steroids and will begin another chemo tomorrow. So prior to that dose, we knew we had some time for him to enjoy more freedom. We met my sister, her fiancee, and my nephew at Brayden's old favorite restaurant. He soaked it all in and everything tasted so much better after missing the treat for so long and having the company of family with us to smile and laugh. We ran to Barnes & Noble, one of his old favorite places, and checked out some books. He's still very aware of looks and stares but is doing so much better with it. Sometimes he will get upset and a little mad, and other times he realizes it just comes with the territory.

The next day was finally Christmas with Bryan's side of the family. We met them halfway in Oklahoma and it was so good for him to see his sweet cousin that just turned 2. He can't hold back the kisses and hugs with her and she will giggle and laugh at just about anything he does. It was great to see some awesome family friends come out to see him as well. Seeing his Nana, Papa G, and Aunt Kimmie was so special and getting to catch up with them. The few hours we spent together just wasn't long enough. He had some trash talk going on football and I think put everyone's hearts at peace getting to see him so lively and active and incredibly energetic. We kept hearing how good he looks and how tall he's gotten. 5 feet for 9yrs old - just trying to keep up with his Daddy & Papa G!

We decided to surprise his Papaw David at work on our way home and that was SUCH a nice treat. He always will tell Brayden "UNCLEAN! UNCLEAN!" when he tries to come hug him before he's showered after work. So when Brayden ran over he had this look of panic. I reassured him it was okay and it was so sweet to see him take it all in.

We definitely made the rounds this weekend in trying to see our family. We're not sure how his bone marrow will respond. Speaking of...I have some incredible news. We made it to Little Rock and back last Wednesday for Brayden's treatment. We had to get up at 3am, so it was a very long day that took a few more to recover. Then with all our activities this weekend, I haven't stopped to post an update. So, we learned Brayden's end of treatment date will be in August 2012. Wow...that seems so far away. We got more information about what his Maintenance Treament Roadmap will look like. His awesome Oncologist is having 1 chemo med he is to get once a week done via his port. This is WAAAAAY better than the 20+ pills he would have had to take to get it down. His schedule will be:
- Week 1 - Little Rock for Vincristine Chemo via port, check counts, physical, etc. Once every 3 months, he'll also receive a Spinal Sedation (LP) with Intrathecal Chemo (Methotrexate) to treat the Leukemia cells present in his brain. With Week 1, he'll be on 5 days of Steroid dosage
- Weeks 2, 3 & 4 - He can receive Methotrexate chemo via his port locally
- Daily he is on another chemo pill each night before bed with varying doses throughout the week

This treatment plan will repeat in 12-week cycle/intervals for the 2 1/2 yrs. We had many questions about his counts and how everything will shake out. We were warned it can be another roller coaster ride. With the High-Risk aggressive treatment he's been on, his Oncologist reminded us just how much of an impact this has on his body. That along with the Radiation can take a toll. Even a cold can give him a big setback and cause his body to take a lot of time to recover. His counts may take longer to drop going forward, but they will also take longer to recover. They will adjust his chemo dosage based on his counts and how his body responds. He reassured us many times his counts may be too low to receive chemo and that this is completely normal and part of the response of his system to all he's been through. His bone marrow may be so 'burned out' it may take it a while to bounce back and recover. So, we'll have to be cautious and pay attention each week to see how he's doing and then remember to not plan too far ahead.

Are you ready for a Miracle? We certainly didn't see it coming. His Oncologist was so wonderful in coming to see Brayden and check on his progress even though it wasn't his day to be in Clinic. We're so thankful for him and his awesome nurse. Have I said before how he's always so calm? I remember when he was explaining Brayden's diagnosis, all the risk factors, and his voice was so even and calm. After seeing the Hudson special with Captain Sully on the US Airways flight, it's that same calm. "Brace for Impact." It's amazing. That's when you know they have a gift. So, he calmly explains the treatment roadmap, his chemo for the day, and that he'll also be receiving a Bone Marrow biopsy. Yikes! My breath caught. I didn't see this one coming yet. After 8 months of treatment, you hope and pray it's working. You push your faith and cling to it that his body is responding, the Leukemia cells are staying gone and not returning. But with every time Brayden has a new pain or trouble breathing or a headache, you can't push it out of your mind. It's the first thing I think of and I hate it. I long for the day when that isn't my first thought...wondering if the Leukemia is back or if it's really gone. To suddenly have a microscopic report of how he's responding was something I wanted to run from...the fear grips you again and you aren't sure if you want to know. But Dr. S keeps us so normal and even-keeled and reassures this is just part of the process and we'll have results back soon. Those 20 minutes after we kissed Brayden goodbye and his sedation process began, became one of the hardest of the many, many times we've repeated the same process. All the old, familiar feelings came back while we waited. You try to push it aside and cling to faith and it just resonates and taunts you, unrelenting. We went back to be with Brayden as he was coming out of sedation. My eyes caught the vials with his bone marrow on the tray and his nurse take them away, knowing it wouldn't be long and wondering what was in that vial that our eyes couldn't see. We had other fears and concerns sweep in with some unusual pain Brayden's been having. We were so worried he had a fractured hip or pelvis. So we sent out texts for prayers from our family while we waited for an x-ray. All the steroids he's been on make his bones so soft and breaks are so common for oncology kids. Did I forget to mention how he can't stay still when he's with his cousins and thinks he can jump off of stairs and run around? Maybe the x-ray was a welcome distraction from the looming results and we sent up many thanks that he was okay and everything looked good.

And almost as calmly as it was announced that he would have one, his Bone Marrow results were explained to be clear. CLEAR! No Leukemia blasts were found!!!!!!!!!!! IT WAS BRAYDEN'S MIRACLE! No matter how much you hope and pray it's working, the reassurance that all he's had to endure the last 8 months has worked sent such a calm and peace over us! It was truly miraculous to us. It will still be 3 yrs before his Oncologist will say the word "Remission" to us. But this was the answer we had hoped for and had been afraid to ask about. Thank you, Jesus, for your protection! Thank you for the healing! Thank you for the restoration for Brayden!


  1. Will someone please get me some Kleenex.
    One more three letter word: GOD


  2. Wow I knew from you that this from hearing the good news from Ninni. But reading the post here has just amazed me at what Brayden has endured and how incredible the results are. It brought tears of joy to my eyes to read bout this great news. Just as much it it made me weep inside when Brayden was able to hug me at work. It has been along time since I have had that privilege without the precautions.

  3. What awesome news! I am so happy for all of you to enjoy the past week seeing your family and friends and getting out to do some fun things. You all have been so patient, God is amazing!!! We love you guys! Amelia, Eric and Andrew

  4. Brayden we love you...We miss you...See you soon...

    Uncle Jeff, Aunt Melba, Jolissa and Josiah

  5. Hi brayden I play basket ball and on Saturday my couch has to come with no shose. My team's name is Lady Monarchs. To Bayden From Lauren Lembke