Jones Family

Jones Family
November 2009

Thursday, April 30, 2009

Welcome Home!

After not having our beds for 10 days, we were all so happy to finally be back home last night! Wanna hear some more amazing miracles regarding Brayden's diagnosis from yesterday? Are you sitting down? He had another bone marrow aspirate and spinal, which would be infused with another shot of chemo for his brain. When he came back from his procedures, he had done so well again with the anesthesia. Suddenly his Dr. came back because right before Brayden was administered his medicine, he was asking for him. How sweet! He just wanted to share with us the chest x-ray showed the tumor was continuing to shrink. His blood work all looked good. And his kidneys were looking normal again! He responded well to the blood transfusion and all looks good! Bryan and I asked when we'd know the results of the bone marrow and spinal and he said within an hour or so. I asked about remission, because we heard some patients can go into remission by the 8th day. He reminded us this wasn't likely. Brayden had the aggressive "T" form of Leukemia, which has a 'slow' response to chemo. If the blasts show less than 5%, then it's called a "RER - Rapid Early Response" which was not likely. We thanked him for all he's done and he was glad to see Brayden going home. I guess we didn't need to expect to hear from anyone about those results since they're routine and don't usually produce anything worth getting excited about this early. Everyone seemed surprised we asked.

About an hour later, his Dr. came back to see us, which we didn't expect. He said he wanted us to know that Brayden had NO LEUKEMIA CELLS in his sprinal fluid!!!!!! AND - guess what? His blasts in his bone marrow - that rare RER? Brayden had a rapid early response of less than 2% in his mone marrow!!! WHAT!?!?! Can you say God? We were amazed and the Dr. said he literally couldn't possibly be doing any better. This is extremely rare for it to happen with T-cell. YEAH!!!

Going home was so stressful, but Bryan and I made it through. I won't go into all the details, but was thankful Brayden was finally able to drift off. But not before the quote of the day. I've tried to burn it in my memory, but just couldn't. He said a prayer as we were leaving Little Rock and I just burst into tears. It was the most beautiful prayer, just like our daily prayers on the way to school, but it was different. He sounded like Brayden again. Back in the car; back driving together; realizing it was spring. It was green everywhere. When did that happen? He thanked God for his ability to go home. He prayed for the other children who didn't get to go home yet, that he would help heal them. He prayed for the leaders at the Capital Building we were driving by, that God would help them make the right decisions! He prayed for our safe journey home. And I suddenly felt so peaceful again. I called Bryan after he started drifting off. We were talking about all the good-bye's we got on our way out from everyone. It's only for a time; we'll be back next week and for the next 2 yrs, but hopefully not for hospital stays every time.

Turning on our main road brought so many smiles! We just couldn't believe how beautiful everything looked! Even though we talk about it every day, I think our eyes were opened EVEN MORE! When we left, dogwoods were just starting to bloom in our neighborhood and suddenly ALL THE LEAVES were out! Seeing our pretty grass reminded me of how sweet our friend Michael was to take care of that for Bryan and us. And seeing my white Azalea had bloomed out was like a special God-hug to us. Brayden ran in the house and couldn't wait to just play! No cords connected (his picc-line is still in and will be for the duration of chemo). We saw our back windows look so pretty as all of our trees make the view look so amazing. It was spring. Momma went into cleaning mode, but we won't go there. Was it not expected?

Best part of the night, after dinner, after his 10 pills and liquid he has to drink, snuggle time on the couch filled my heart back up. It was like old times. Kisses and just holding my sweet boy and then remembering there is still hurt he has to go through. He wants to see a movie that's coming out and can't. He wants to go bowling. He wants to celebrate and go to a restaurant. He can't. Then he starts talking about his hair. I'm trying to convince him it's the one time he can do ANYTHING to his hair and mom won't care! I think a mohawk would be SO COOL! We saw another boy from a distance that had one and it's still too much for Brayden to take in. He's touching it constantly and it's starting to itch him and the Dr. told him since it was Day 8 (it falls out between day 7-10) it's the hair folicles that are dying. We're hoping he'll go ahead and just have fun with it. But he admitted he's scared people will make fun of him. My heart just breaks for him. So that's our next emotional hurdle for him. Please say a prayer he'll try to find a way to be more accepting of it and it won't be so devastating for him.

Thank you again to all of you for your prayers. We're praying now for no secondary infections now that we're home. We're praying he stays healthy and we don't have to make another ER visit or drive to Little Rock outside of our weekly visits. Driving past the hospital helipad on the way home was so surreal. We're so thankful to be where we're at.

14 comments:

  1. Bryan & Lisa, glad that you guys are all home safely and that Brayden got a good report which is a miracle in itself. Juli loves to follow your blog and read about Brayden. We are all praying for you all as you make this adjustment.

    Jay for The Hill Family of Northwest Arkansas

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  2. Brayden, Lisa and Bryan
    Welcome home. What a powerful post on today's blog. We are thinking about you. Cant wait to see you guys real soon!!!

    David L

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  3. Congrats!!! You guys have been graced by God. Have fun with being home. We love and miss you guys!

    Love,
    Jerald and Jean

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  4. Oh, I'm so glad ya'll got to come home & Brayden is responding well to his meds. CONGRATS!!!
    ~Paula McClane

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  5. Braden & family,

    My name is Debbie and my son was diagnosed with ALL in September of last year, he is much younger than you but we have been through a similiar journey. I saw where your Nana signed in to another site that I follow - Trevor Evans. I felt compelled to sneak a peek at your page.

    First let me tell you that I am so thankful you are doing well. ACH is such a blessing, the staff is awesome. You must have a lot of courage to fight this nasty disease. I keep telling myself that Adam (my son) will never fight a more important battle - after this everything else is easy in comparison!

    Just so you know, I think a bald head is beautiful. Your hair will come back - Adam's is even a different color than before. We love ball caps at my house, and that helps when you get to go out.

    I have a lot of information that I can share with your parents should they want to talk to someone who has been there. Tell them to email me if they ever need anything!

    Take care! You and your family are in our prayers.

    Much Love,
    Debbie Lewis

    www.caringbridge.com/visit/adamlewis
    debbie.lewis@acxiom.com

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  6. Welcome home Brayden, Bryan and Lisa! So glad you all are doing well. Let Brayden know Kyle and Lauren are thinking of him. We will keep you all in our prayers!

    Kyle, Lauren, Susan and Nathan Lembke

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  7. You're finally home!!! So glad to continue to read more and more good news! I want to call, but know you need your space right now. You have a lot to catch up on with being away from home. We are praying for you everyday!!! Your blog and posts are wonderful! Love you guys!!! Amelia, Eric and Andrew

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  8. You're finally home that rocks!

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  9. Yee-Haw! Brayden we are so excited you are back home. It must feel great to be back with your toys, Hershey, and all your normal surroundings. God has certainly blessed you with two great parents and lots of great family and friends who love and care for you lots. He has also given you miracles that you can look back on and see just what an amazing God we serve. I was blessed to hear about your prayer on the way home. It was neat to hear you pray for our government, just like we've done at school.
    And speaking of school, I've got lots of wonderful work coming your way.LOL Mom will make a great teacher.
    Our class never lets a day go by that we don't pray for you and someone doesn't say something about what Brayden would have done if he was here. We can't wait to see how God is going to continue your healing. Stay strong and keep the bright smile we all know and recognize.
    Love and prayers,
    Mrs. McCall

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  10. Brayden,
    We rejoice with you and your parents that you are home!! And, we rejoice over the wonderful reports from your doctor - God is in control and He is answering all of our prayers for you!! Don't worry about your hair loss - "bald is beautiful!" - just look at Mr. Welshenbaugh!! It will grow back, but in the meantime, you will be just as handsome as ever! People will see your gorgeous eyes and bright smile and not even notice your head! This could also be a great time to begin a fun hat collection! We are continuing to pray for you constantly ("Pray without ceasing") and we look forward to reading about more answered prayers!
    We LOVE you!
    Mrs. Welshenbaugh & Family

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  11. Brayden!!
    We are so glad your home! God is so very good! Lauren and I are so happy to hear all your good news! Bryan and Lisa, I am so glad Brayden has you! God so knows how to match kids and parents.
    Love,Mrs. Shell and Lauren

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  12. Brayden - You are truly a Jedi, what a fighter! The force has so been with you. God has blessed you with miracles, and we're so excited for and proud of you!!! Welcome home!
    Love, Trish, Ken, Grace, and Logan

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  13. I'm so happy to hear you are all back home now! Just in time for the flowers and showers. I hope you all settle back in nicely!

    Mandy Hougland

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  14. Lisa, I am so excited to read the awesome news that God has been blessing you with of Brayden's recovery and being able to go back home so soon. Welcome HOME! You have a remarkable son; how sweet of his prayer before his journey back home. I wanted to share this popular poem with you for as I feel Brayden was being carried by God's love. Love, Tiffany

    Footsteps In The Sand


    One night a man had a dream.
    He dreamed he was walking along the beach with the LORD.
    Across the sky flashed scenes from his life.
    For each scene, he noticed two sets of footprints in the sand:
    one belonging to him, and the other to the LORD.



    When the last scene of his life flashed before him
    he looked back, at the footprints in the sand.
    He noticed that many times along the path of his life
    there was only one set of footprints.
    He also noticed that it happened at the very lowest and saddest times of his life.



    This really bothered him and he questioned the LORD about it:
    "LORD, you said that once I decided to follow you,
    you'd walk with me all the way.
    But I have noticed that during the most troublesome times in my life
    there is only one set of footprints.
    I don't understand why when I needed you most you would leave me."



    The LORD replied:
    "My son, My precious child, I love you and I would never leave you,
    During your times of trial and suffering,
    when you see only one set of footprints, it was then that I carried you."



    Author unknown

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