AJ's Journey

Anthony James Haynes Born 10-22-2000 Passed On 10-5-2005

Welcome to AJ's story. At age 3 months AJ was diagnosed with Kostmann's Syndrome. This is a condition where AJ's bone marrow does not let his neutrophils (infection fighters) mature and enter into his white blood count. Therefore he has always had a ANC count of "0". Most of the DR's we have talked to say with the GCSF injection children with this condition live happy long lives. AJ is in percentage of people that don't respond to this shot. Therefore the DR's said he might not make it past 3 years old. Well with lots of antibotics and seldom taking him out in public we have made it to 4 1/2 years. We are here at DUKE to have a cord blood stem cell transplant. This is his only cure and with out it he will not be able to survive even with keeping him as a "bubble boy". We are greatfull for this chance and we know AJ is strong and can show how he can overcome anything he is faced with. We will be home before you know it.


Update: Sept 29 AJ was admitted to the PICU for lungs. He was put on the Oscillator at 4:00am and is now improved enough to be on the ventilltor. The Doctors told us at first that AJ would not make it off the machine. They are lowering his setting a little everyday. Please keep praying for AJ to return to 5200 soon. Update: AJ earned his angel wings on October 5 2005.

David and I want to Thank everyone for the support and love of family and friends and people we have never met before. We have felt so alone all these years now we feel like we are apart of a very large family!

Journal

Tuesday, December 23, 2008 2:34 PM EST

Two days before Christmas and I just got done shopping for Robert today LOL.

Well things are getting a little better everyday. I am still adjusting to the single life and not having to rush to pick up the kids, go home, cook dinner, help Robert with homework check all AJ's meds and get the kids to bed on time after their baths. That sounds like alot but you have no idea how much I miss all that. I would do it all over again. But all in all my new life is getting better. I have met some great people along the way. Enjoy spending time with my two girlfriends and Robert when ever I get the chance. I am picking up Robert tonight and he is spending the night and we are going to eat Mexican. I will take him to mom's Christmas Eve and drop him off then get him again on Christmas afternoon. I have to do something for next year to get that Christmas joy back in my life. I am however very Thankful I have my wonderful family. I still have Mom in my life and continue to love her with all my heart. She has taught me so much about life and how to grow into a women. Thank you mom for all you have done and brought into my life.

To all who have shared in our lives and continue to do so from a far Merry Christmas and Happy Holidays to all.

PS. Santa all I want for Christmas is a rice, sweet, loving man that is not a LOSER under my tree. LOL.

Read Journal History

Hospital Information:

Heaven

Links:

E-mail Author: Ahaynes199@aol.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 57988 times.

Site Sponsored by:


Duke Pediatric Bone Marrow and Stem Cell Transplant Program

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.