Jones Family

Jones Family
November 2009

Saturday, April 25, 2009

What a difference a day makes...

Wow - I feel like it's all I can say. We heard again more amazing news today from his Dr.'s. Three Dr.'s came in that are on this weekend while his main Dr. is off and-they are all 3 cute girls. I've got the pictures with him to prove it. To say he is enjoying the attention is an under-statement. He's heard more times than I can count how beautiful his eyes and eye lashes are. Some more "How you doin'" were exchanged when meeting them and there were laughs all around.

So, for the medical details: Brayden had the last ingredient to his first chemo regimen given today. He did great - 2 shots in the upper leg. I'm thankful they use numbing cream. Through the night, he slept great with NO oxygen! He was so free of cords when we moved out of ICU yesterday to his room! No heart monitors, 1 less IV, the arm brace is off, the nose canula, the blood pressure cuff. WOW. He goes, "Look, mom! I'm free!" He got a good 9 hrs of sleep and the nurses are so quiet and use little pen lights to not wake him up. His blood work came back GREAT! White blood cell count dropped again. His liver and kidneys are still doing great and aren't as swollen/enlarged as before. No fever, no high sugar, no low blood levels that would lead to transfusions yet. We know later he will need bone marrow, blood and plasma. But that's later...Another wow - one of the drugs that helps prevent damage that the busted tumor will do (remember the Death Star) isn't needed. WHAT?!?! This is a drug that helps his vital organs and helps the cells and minimizes other difficulties internally with the tumor bits (my medical terminology) has a lot of side effects with it and after checking his blood, he doesn't need it and there's basically no trace of any problems. Can you say answer to prayer? So again, everything looks good! We found out he lost 6lbs since Monday night. But I can't believe there are talks of MAYBE getting to go home late next week if things keep going well.

Please pray for: Another ecko on Monday to check his heart to re-confirm there is indeed no fluid or damage from the Death Star. Good cells will start kicking in and producing to overtake the bad. There's a big test with his DNA we won't get back for 3 1/2 weeks and we're praying it's good news. We'll still proceed with the plan and hopefully nothing will deter us. The goal is in 1 month, if this phase of chemo is successful, called Induction, then it's the absolute best scenario possible. They would label him in remission and move to the next of the 4 phases of treatment. We found out he's never 'cured' but will always be in remission. The treaments would continue for up to 2 years, then the treatments hopefully end(without any interruption with infections or fevers) and his hair will start to grow back. Continue to pray for Brayden's emotional strength.

The social worker came in yesterday to show him the video and help him understand the diagnosis, where he's at and what happens next. I took it really hard. We found out it might be a year before he can go back to school. We found out his hair will start falling out in the next 7 days or so and won't grow back for 2 years. He found these things out as well and finally heard the word 'cancer' and not just Leukemia. I think it was different when he hadn't heard of Leukemia before and didn't have a pre-set ideea of what it meant. But when she said cancer, he said, "That's what I have?" It just broke my heart for him. But I know he's in the best place. Some people have asked about St. Jude's and I was glad to hear that here or there, it's the same set of treatment and plan based on his diagnosis. I just am thankful for his progress and the support we get here. There are social workers for us and for him. There are so many things we don't even know about yet. We're thankful for the staff and his Dr.'s and thankful to God for the miracles happening so soon.

So, we had a lovely family evening remembering our inside jokes and feeling with the less restrictions of being out of ICU a little closer and more connected. We were thankful to get to all sleep together in the same room and get 6+ hrs of sleep. Great dinner last night, wonderful view of the Capital building that looks amazing at night. We're thankful for a room with a window! Much less an awesome view! My heart almost stopped lastnight when we heard the helicopter sounds of Angel 1. With tears in my eyes, we looked out the window and said, "Brayden! That was where you were just 3 short nights ago!" And we said a prayer for another kiddo coming in and for the family that would be enduring the unthinkable of sick child.

Jesus, thank you for your blessings. Please use this situation for your good. Help us to be vessels to show others of your love. Please hold baby Adam and Brittany in your arms. We pray for their families that we've seen suffering in despair. We thank you for your guidance with the Dr.'s and wisdom showing them the path to take. We praise you for the miracles we've seen and for all the good reports. We pray you would continue to help Brayden to be strong, in body, mind and spirit. Help Bryan, help me, to be the parents we need to be during this journey, in continuing to discipline and set boundaries, while loving and nurturing him. Bless all those around us who give of their time, their love, and their concern for our sweet boy. Thank you forloving us and drawing us closer to your side. Amen.


  1. I am so glad things continue to go well. Thank you for posting all the details we want to hear. I think about you all the time wondering what you are doing as I get ready to go somewhere knowing you are sitting in prayer trying not to worry. I wish you, Bryan and Brayden did not have to go through this but there will be a day when you will look back and say, look at what we have survived, we can do anything!

    Sending lots of hugs and love your way..

  2. Lisa - thanks so much for taking the time to keep us all updated! Such a joy to read about all of the triumphs and steps (or I guess I should say: leaps) towards getting better.

    Make sure you tell Brayden that I'm thinking about him constantly, and that I can't stop chuckling at him saying things like "Death Star" and wanting to ride back home in the helicopter! I can't wait to see him again and give him a hug for being so brave!

    So much love - and I'm sending it all your way!

    Love you,
    ~Adam Goddard

  3. I am sitting sgsin in front of my screen weeping at thisd greta news. I remeber those short nights ago when I sat in the front of Mercy Hospital Helo pad and watched them take Brayden away. I was so scared for him. But with this news, I am so thankful for your progress Brayden. Pappa loves you very much! Thank God that He hears our prayers, and loves us so much that he is there by our side in a very real time of need.

  4. I remember when we had to tell the kids I had cancer, it was bad; but I can't imagine telling a child that they were the one with cancer.