About Creed…

Creed was born 11 weeks early weighing only 2lbs. His first address was Northside Hospital 1000 Johnson Ferry Road, Atlanta…NOT 4025 Rockingham Drive Roswell. During his stay he was diagnosed with an adrenal gland problem, with no real idea of what it was. He finally joined us at home after 91 days and stayed home for about 90 days before heading next door to Scottish Rite 1001 Johnson Ferry Road. He was taken there because after weeks of battling feeding issues, mommy was defeated and didn’t know what else to do. We were told then, that he had adnoviral pneumonia. During his stay there, we worked very hard on getting him to eat, but he was one strong willed little boy and refused. We came home with a NG tube (a tube that goes from his nose to his tummy) and that’s how we feed him for the next 4 weeks. (That stay was 21 days) After having to replace the tube several times a day, we asked for a tube to be placed in his tummy instead. Two weeks later, yep, back in the hospital again with salmonella and sepsis. That trip was 6 days. Home for two days, then back again for dehydration, just 2 days in the hospital this time!! Three months after that, Creed was scheduled for surgery, which was the first of three. While being put to sleep we had the tube in his tummy changed to a button…a more long term device used to feed him. A month went by and we found ourselves back in the hospital, this time with respiratory distress. One of the scariest moments we experienced…almost had to be placed back on the vent. Three days this time. 4 months later, we’re back…this time stomach virus/hypoglycemic. 4 day stay…Oddly enough he was scheduled for his 2nd of 3 surgeries the very next day. So we went home, spent the night, and came back the next morning for an overnight stay. We almost made it two months before our next illness, which was Kingella, an infection in his subtalar joint, and anemia. That was a 15 day stay!! 5 weeks later…. back in with Adenitis/Cellulitis in his arm/oral thrush. Just three days this time. So we started on our next healthy stretch and did pretty good for about 3 months. Nothing really big this time, just fever/vomiting… an overnight sleepover. This started another little cluster of visits. He got pneumonia a month later and stayed for 5 days. Home 2 weeks and then back again…with pneumonia, and yep…5 days again. Pneumonia was his illness of choice for awhile, then he changed to kidney infections. After being home for 7 months, Creed went back in for 10 days. E coli/kidney infection/anemia. Home for almost a month then back again with his second kidney infection, 2 day stay. 9 months home…woo hoo!!! While we were having our little hospital break, Creek went to the Marcus Institute everyday for 8 weeks for 8 hours. He went in totally tube fed and after 8 weeks came home eating all by mouth. No more tube!!!! He had a surgery to close the site where the button one and has never looked back. Then grrrrrr…..another kidney infection got ’em. This time for 13 days. A surgery was scheduled then for a procedure called de-flux. This would stop the reflux in his kidney’s causing the infections. All was well after that for 8 months and he got a virus that caused fever/vomiting. Just three days to rebound from that. We all got really excited about this next run of healthiness. He made it 11 months without going to the hospital. We all thought that maybe we were finally finished with all this craziness. Not so much….back to visit, our friend pneumonia/shock/sepsis, 6 days this time. Home for a month and back again, E. coli, hypotention/sepsis/low potassium, 6 days there again. 2 weeks at home and the ol’ fever/vomiting bug returned and kept us there 11 days. This is when one of Creed’s doctors said enough…(please know that during each of these stays test after test were being ran to try and figure out why he continued to get sick) and would not let us go home until we got to the bottom of this. He requested a bone marrow biopsy. After all the blood test ran over the years he felt like whatever was causing this had to be in the bone marrow. So during that 10 day stay, Creed had a bone marrow biopsy and after we came home, we found out he had monosomy7/myelodysplasia. FINALLY!!!! 5 years later we know why all this has happened. We met with the bone marrow transplant team at Egleston and were told that a bone marrow transplant is the only cure for this disease. While in the process of getting all the i’s dotted and t’s crossed, Creed was sick again. Pneumonia again and 2 days later he was home. He spent 2.5 months at home before his most recent visit in May for fever/vomiting. That was just a 3 day stay and the last as of this posting.

Creed’s little life has been a hard one to watch. As we continued to see him go in and out of the hospital and watch his tiny body fight so hard. His spirit and courage is something I could only wish for. He is my hero and I’m glad to be the chosen one he calls mommy.

As we start our next journey, with high hopes for the future, we thank you all for walking beside us and for praying as we go.

Much love,
Jon, Stephanie and Creed


Comments
  1. Team Pritz says:

    Hi Creed!! We think of you often and laugh at all of the funny things that you said! Shyla and Ally think that it was really funny when you put them in jail! Miss Annette is making something special for you. You are such a strong and brave kid! We love you!

    Mr. John, Miss Annette, Shyls Ally and Connor

  2. Rocky Thomas says:

    Hey Creedster,
    Enjoyed hangin’ with you yesterday. Your GiGi (geeg) is awesome and it is obvious that she loves you very much. You did a great job singing the Lighthouse song. Next time we come to visit we can sing the whole song from the beginning. You are doing great!! Remember to keep swishing with your mouthwash, getting rest and saying your prayers. Tell your Mom if you need anything & we will bring it next time we come.
    You Rock!!!!!!!

    We love you,
    Rocky & Terry

  3. Jason Tumlin says:

    Hey Creed!
    Just wanted to let you know we are think about you and praying for you! Can’t wait till you can come up here for another visit to the zoo :<)
    Your buddy in Tennessee,
    Jason (and his Mom)

  4. Peggy says:

    good to see you & how happy you were to see the Krispy Kreme motorcycle “gang”. Praying for you! Love you & so proud of you!

  5. Kellie Starlin says:

    Hey Creed! My name is Kellie, and I know your mom and dad. I have been reading about you and trying to keep up with all that has been going on with you! You are such a trooper! My husband also had a bone marrow transplant like you just had, and he is doing GREAT! I hear you are doing great too! I have a son, who is a little younger than you, and a daughter who is just a little older than you. They both pray for you at night. We watched the video of you singing with Steve Fee, and man…that was awesome! I love that song too! Keep up the good fight! You are one tough kid, and we are all really proud of you!

  6. Creed – your a BLESSING – a reminder to all kinds of people that like to grumble and complain about the small things going wrong in life – I hope you don’t mind but I have added a link to your song video and to your website on my website! You are in MY Heart and my Prayers!

  7. Jennifer Reynolds says:

    Creed,
    I am one of your nurses from your very first home at Northside. Your mommy and I talked a lot when you were getting bigger and stronger there. When I just saw your picture, I was so proud of you. I know that you haven’t had the most fun being in and out of the hospital and I hope that the doctors “fix you” for good this time! I’ll be praying for you and your family so that one day you can become a doctor!!!

  8. Daniel Cline says:

    Creeder,
    We are praying for you big man at school. We also made about 190 cards that will be delivered to you ASAP. Have a peaceful night my friend!
    Because He Lives,
    Daniel Cline
    (Calvin Klein as Steve Fee named me)

  9. Casper says:

    To my best buddy Creed, I miss you so much and am so excited you are back at the Ronald so we can visit this weekend. See you soon buddy. Love, Your Caspie. P.S. My mom and dad love and miss you, too!

  10. taylor says:

    hey creedster ! ,
    i miss you soooooo much ! πŸ™‚ ive been thinking a lot about you lately . you really changed my life , you made me a better person. i now know that smiling helps everything & that beeing a total goof ball realllyyy helps things toooo. πŸ™‚ i reallllyyy love you and miss you veryyyy much .i cant wait too see you over winter break it will be a few weeks after your birthday . :))) im praying for you to get better soon. πŸ™‚
    YOU ROCK !!!!!!!
    lOVE YOU VERRRRRYY MUCH !!!!!!!!!!!!! ❀ πŸ™‚

    • Emma Mae says:

      Taylor , Its Emma , I miss you and Maddy so much! Let Maddy know I am so glad she told me about this amazing little boy ! (:

  11. Dear Creed,
    I think that you are such a strong young man! You are in my thoughts and prayers daily! GOD is on this journey with you and he will help you through it! I pray each and every day for your recovery! You have a world of people that love you and are praying for you constantly! God Bless you and your family! Stay strong and continue to fight this thing! You are going to get well! Believe it and keep the faith! I don’t know you but I see how many people love and care about you so that makes us all family!!! Hang in there buddy! You are great! I read what your mom writes and she is such an inspiring person! Be brave and I hope this note finds you better and stronger!
    Your friend,
    Mrs. Edwards πŸ™‚

  12. Rusty Sears says:

    Hey yall. We sang Glory to God today during worship at Central Baptist in Americus. I went to a lump in my throat and tears on my cheek my heart in prayer and worship. I couldnt help but think of my sweet friend Stephanie and her wonderful lil man. Yall will never know what an awesome testimony you are. God is using you so much in ways you will never imagine.

  13. Karen Stewart says:

    Creed-Alan and I want to come see you soon-so keep getting better.
    we Love you very much.
    Love
    Dr. Karen and your friend Alan

  14. Kevin Clements says:

    Hey Creeder!!!! We Miss you and Mom so Much!!!! I Love that I start my day thinking of you as I pass you and Casper’s picture every morning and every time I use the elevator!!! You are such a special young man and I am proud to be part of your healthcare family, not to mention your primary nurse.. Remember, You are loved, and I expect GREAT things from you!!!! Kiss your sweet mom and GG for me!!!

    Nurse Kevin

  15. […] and her son, Creed, have spent most of
    Creed’s life in the hospital with multiple illnesses. He
    is currently on dialysis and was just taken off the ventilator a
    few […]

  16. Emma Mae says:

    The was so sweet,,,I first heard about you/Creed, by my best friend Madison Klave went on a trip to see you with her family in a light house, and she told me all about you. She said you were a great little kid and you are in my prayers.

  17. Karen says:

    Just watched Creed’s video montage…Glory to God for his sweet life!

  18. Melita McGrath says:

    Hi Creed , Mom and Dad! What an amazing little boy! Watching the video now I can see you growing up strong and be an awesome doctor! God will continue blessing you like he has being doing for the last 6 hard but beautiful years ! I am so proud of you and I know that MomAnd Dad must be so happy to have a great son like you! I am praying so hard for you and know in my heart that God will be with you and your family all the time! In name iof our Jesus Christ! Amen!

  19. Gayle Gaskamp says:

    Praying for this sweet little boy to get better and stay better. You are so strong, stronger than most people. Stay that way and God will do the rest. Love, hugs and more of Gods blessings to you and the family.

  20. Johnsie Brannen says:

    Prayers go out to Creed, Steph and Jon! This is one amazing little boy you have! A friend of mine posted the story and I just got through reading the entire story through many tears. InCREEDible is absolutely right! I pray that Creed will continue to get stronger and better in days to come!

  21. Jean McLendon Harrison says:

    Praying for Creed and his parents and grandparents and greatgrandmother today.

  22. Carol Kennon says:

    I heard the best “Hello” ever on facebook today. Creed you are one “InCreedable” kid! Our constant prayers continue to flow from Sumter County for you and your family. I think that I read that your mom may need a water gun to even things out up there…we will work on that:) Praying for a great day and restful night!

  23. Crystal Hawkins says:

    Steph and Creed,

    I am so glade to hear that Creed is doing better. I can’t wait for him to heal completely so he can come to Casper’s Beach. Portofino will be glade to have him again. He is an amazing kid. Everytime I read Creed’s story with tears running down. I can’t wait to meet him the next time he comes to Casper’s beach. I wish I was there when he arrived to say hi and give him a big hug. I will continue to pray for Creed and the family.

    Your sister in Christ,
    Crystal

  24. kelp says:

    GO CREED!! glad your doing good!!!

  25. Emma Mae says:

    Creed , I would love to meet you ! You have my blessing !

    • Coral Martin says:

      Hi Creed! I am Aidan’s Mommy, from Ms Nicol’s class. I just wanted to tell you that Aidan talks about you all the time. He loves playing with you. We are both glad you are doing better. We are praying for you!

  26. stacy perlman says:

    Hi Creed! We hope you are getting well and will be back at school very soon! We miss you! Love, Ms. Perlman

  27. Hi Creed (007) – It was such a pleasure meeting you today! I can’t wait to hear all about Disney! xoxo Sojourner

  28. Gina Barrett says:

    We Love you Creed. God knows what is was doing when he brought you into this world. You are such a Brave Little Boy. We are proud of you. Steph, we are proud of you to. You have turned out to be a very good Mom and a very patient one too. We Love you Stephanie. We are praying hard for you and Creed.

  29. Hollie Harrell says:

    Stephanie, Dalton got home yesterday and told me about Creed. My heart dropped for you. I know you will miss him, but knowing that he was a Christian and you are as well, you have comfort knowing that he is well, and being taken care of by many. I send you all my love and prayers.

  30. Carmie Leister says:

    Stephanie,
    My heart goes out to you and your family. CJ always spoke so kindly of Creed. We will continue to pray for you during this difficult time.
    Carmie, Chip, CJ (Mrs. Nicol’s class) and Cailey Leister

  31. Kathy McCarty for Kathy Bishop says:

    Creed had such an impact on my life and in the lives of so many others, many he had never even met. He surely had me rethinking the true values of life..
    Many times we tend to get caught up in the, “what about me, why me..or it just isn’t fair!!” attitudes, that we loose focus on why we’re really here.

    God’s plan is for us to touch the lives of others in such a prophetic way, that it causes a stirring in their soul..creating in them a desire to want “that something” they see in us, that’s missing from their lives. What they see in us should be so powerful because it’s Jesus, God, Love, whom are all of one, living in and shining through us..

    Creed was like Jesus, the son of God and son of man. his days on earth seemed far too few, but Creed’s life radiated Love, faith and joy.. the greatest being Love.

    Though just a child, Creed weighed heavy in wisdom..
    I received the news of Creeds passing Sunday morning in our morning worship service, my heart overflowed with sadness, grief and gratitude as well, while recalling Creeds visit to First Baptist. Uncontrollable tears fell, I could only imagine Creed’s Joy, Love and excitement as he stood giving a testimony of testimonies while eagerly returning his pager..

    When I see the recorded steps of Creed, his family and their amazing Love for one another, I give way to a shattered heart in knowing Creed is no longer in their arms, and the anguish of emptiness they hold..
    then truth moves in and I find solace, a peace that passes all human understanding as God reveals to me that Creed isn’t alone and neither is his family..though they may be separated and that’s only temporary, but for a moment..
    it’s in that very tender time of life that He reminds us, they are not alone,
    they are held at the same time, in the arms of our God. our heavenly Father.

    and we sing Glory to God, Glory to God, Glory to God forever..and ever..

    Peace and Light,
    Kathy Bishop

    This was sent to First Baptist Church and re-printed on this site by for Kathy by
    Kathryn D. McCarty.

    • Kat says:

      What a lovely letter that truly embodies what many of us feel this week. Thank you for sharing. I know it will bring Jon and Stephanie such comfort.

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