Jones Family

Jones Family
November 2009

Monday, April 27, 2009

More Good News and Plan for Coming Home

I have over-used the word Wow but until I get my thesaurus, it's all I know to say. Brayden continues to improve and respond well to his treatments. His body is staying strong and is functioning so well and so much better than a week ago. His lungs are healthy. His counts are good. No fever. After his renal ultrasound today, his liver and kidneys still look good with one minor thing, but not a concern at this point. They took one iv off to continue reducing his fluids since my water-drinker is taking in plenty of fluids. What's cool is we all know it's God and the power of prayer and Brayden certainly knows it too. Today we were talking about how miraculous his progress has been and he said, 'Do you know why?' And we said, 'yeah, do you?' And he said, 'Yeah, it's God. It's all those prayers.' I'm so thankful, as my mother-in-law so wisely reminded me today, that God doesn't expect us to be able to handle it all; he WANTS us to look to Him to help shoulder the burden. But that doesn't mean only if we're the perfect Christian; which doesn't exist. It means He'll meet us right where we are. I remember pacing the floor at 4am in the PICU begging God to accept my prayers. He does; I didn't want my failures to prevent our prayers from reaching Heaven. But that's the awesome God we serve. He meets us right where we are if we just ask. And we definitely cried out for Him. What else do you do?

Quote of the Day: Bray has to keep measurements of his 'output.' So with our recent visitors, I love how he came up with a new term for announcing the need to have everyone leave the room. Last Friday, it was, "Hey, guys? Time for a commercial break!" LOVE IT! He's still using it to alert us to it and it still makes me giggle! One of his Dr.'s heard him do it today and thought it was a riot!

Okay, okay. I've put it off long enough. So now with the coming home part. They walked in mid-morning and announced, "So, you're going home Wednesday?" I think my gaping mouth and bug-eyes scared them into silence. This protective cocoon (no matter how uncomfortable for mom and dad) is so keeping my baby safe. And if, Heaven forbid, anything happens, the best Dr.'s and Nurses are right here. But home? That's too far away! And I need to steam clean my carpets and hook a 10-gallon tank of bleach up to the water hose and let loose on the inside of the house, and can we have our dog in the house still and does he need a new mattress and...So I realized the step I've been dreading I needed to face in my OCD way of making lists, which I love to do. Don't get me wrong, him coming home is a miracle exactly 7 days ago from (literally) right now is something I feared we'd never see. It's a wonderful thing! But I want him to be safe and can I do it? I don't want to make him sick! I almost missed him being so sick before. Will I miss it again? After my mommy-panic/freak out (in private, of course) his awesome Dr. totally brought me back down from my germa-phobe ledge. Hershey can stay and I'm so glad. Grieving the loss of her being our pet was something I worried would give Brayden more than he could deal with...So of course I'll be cleaning and obsessed more than ever. I guess I'll need to phone a friend for my Clorox hook-up. I'm set on Germ-X. We're still talking about all the other million things to do, but she reassured me, we all 3 need to be home. My wise little sister reminded me these are the same feelings I had when he was a newborn. But I made it then! I can do it again. So I'm making my lists and making plans to again take my baby home from the hospital and building confidence that he'll do just as awesome as he did exactly 9 years and 3weeks ago!!!

So, here's our plan and what we are praying for: Ecko was pushed to tomorrow due to so many sick kiddos here that needed it more than he did. He will likely receive a blood transfusion tomorrow or Wednesday. He'll get his 2nd round of chemo on Wednesday, then we'll be discharged a few hours later. They're prepping me with lots of charts and instructions. Today we learned how to flush his pic-line. We have to be sanitary with it and do this daily. SCARY! But I know if I trust God and let the fear go, I can do it. We can do it. We'll return again next Wednesday and the following for chemo treatments. The 2nd Wednesday (May 13th) will be another bone marrow aspirate and spinal. This will be when we hear if he is in remission and can move from the Induction phase of treatment to the next.

What a wonderful surprise, right? Brayden's really excited. I'm freaking over food. There are a lot of side effects to all his meds he'll have to take at home. After losing 8 lbs since Monday night, I'm hoping he'll have what he needs to keep his strength up.

Thank you to Jeff & Dee for the DS games! I'm still amazed he hasn't had 1 duplicate! He has quite the library of games now and, of course, is doing a great job of breaking them in!!

Brayden loved getting around again today and taking a trip thru the hall and another round outside in the garden after the rain stopped. He had a fun surprise with getting to paint and draw with an artist today that came to his room. The on-site school teacher came to see him and talk to us about his education plan and Homebound Education. Later, he got to visit the Playroom and play Wii! AND...get to visit Cooper! He is the sweetest Golden Retriever, 120lbs of love and hugs for the kiddos. Then I started looking around. My eyes filled with tears of gratitude. I know this is a huge battle ahead of us and Brayden has been through a lot, but I suddenly realized how blessed we are. This could be so much worse. He could be in a wheel chair and not have use of his limbs. He could have a tube down his throat. He could be in an isolation bed. And, we could have missed the signs and waited 1 day too long and not have caught this in time. Thank you, Jesus, for nudging Bryan and I to take Brayden to the ER when we did. You have blessed us with miracles beyond what we thought was possible a week ago. Our cup runneth over from all that you have done to save our sweet boy. We continue to lean on You and trust You more letting go of what we thought was us being in control for keeping our sweet boy safe. We know he is Your child, and You've entrusted us for a time with him. We pray we can do our best to love and raise him in the knowledge of You. Amen.


  1. Just wanted to pop in and say I strongly recommend the book "Cancer Outside the Box" by Ty Bollinger. I'm not affiliated in any way with the author or publisher ... I'm most of the way through the book and can only say WOW. It is chocked full of alternative remedies that really work against this disease. The best thing is it is written by a Christian who truly speaks as though he loves the Lord and has dedicated his life to fighting cancer. Hugs to you and your little boy. Sharee

  2. Brayden, getting to go home? That is soooo exciting!! I am sure Hershey has been missing you, mom and dad. I admire how you have handled all this at your age and know that your strength is coming from so many avenues, from God and His answering our prayers, your mom and dad, and all of your other family and friends.
    Reading the updates on how Brayen is getting better makes me tear up so easily. I will continue to keep the Jones family in my thoughts and prayers.


  3. I can't beleave that you guys have come sooo far!!! Brayden you are a graced child. Never forget that. You guys will make it threw the hard times. I know you will. You are wonderful people. You just got to stick togeather. Like you always have. I am so happy that he has come to what he has. God is a wonderful Man. Well in case Uncle David didn't tell you guys. When I found out I called our cousin. Tabby Powell. I told her what was going on and to pray. She turned around after getting off the phone with me and called freinds. Who called freinds. Who called freinds. A lot of people who don't even know you was praying. But, that is what people are for. To help others threw there rough roads. Well I gatta go back to bed. We love and miss you guys.
    Your Uncle and Cousin,
    Jerald and Jean

  4. Lisa - I am going to need some a hook up on kleenex after reading today's post. I am so happy for you and your family. Great news. The man upstairs is a powerful spirit. Wow, how prayer is the one stop shop for everything that happens in our lives. We cannot wait to see you guys back home in NWA.
    David L

  5. This is FANTASTIC! I'm so glad to hear Brayden's doing so well. I can understand how going home would be a scary thing. Bless your heart for all your worries! But you're right, with all the prayer coverage you have, I think making the move from hospital to home will be all right. Hugs to all of you!

  6. Lisa, This is such an inspiring journey. Trust in the Lord always! You and Bryan have more strength than anyone I know. The three of you have been through something that as parents we all dread. I'm sooo excited for you guys as a homecoming is such a wonderful sign of things to come. We will keep praying for you guys! Becky, John, Ashley, and Aubrey Schroeder

  7. Lisa,
    Even though I've never met you I want to thank you for sharing your story and reminding us everday how lucky we are. I am keeping Brayden and your family in my prayers.Congratulations on getting the news of going home soon. God is good and will never give us more than we can bear.

  8. Lisa,
    Thank you so much for the wonderful news! We have prayed (and continue to do so)so hard! I ran the Nashville 1/2 marathon on Saturday. It was to benefit Leukemia. That was for Brayden!! He is my hero!!! Faith would like to see him when he gets a little better and can be around other children. I told Faith that it will be a while because there is a lot going on right now. I am trying not to bombared you with emails and such, but know that we care about you guys so much and will continue with our prayers and praises!! Praise the Lord for answered prayers!! He is worthy of ALL our praise!!

    Anyways, thanks for the updates! They have meant so much to us!!

    Darrin, Denise, Shaye and Faith Honn

  9. Reading your journey is truly a blessing though I know it's been very difficult. Your situation reminds me so much of Ephesians 3:20, "Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."

    We miss you at school Brayden, but God has even a bigger plan for you right now! And it sounds like you're already letting your "little light shine!" We love you and are praying 'round the clock for you.

    Jane Caster

  10. Brayden, I am so glad that you are getting to come home soon. Please let us know if you need anything.