Cooper's Story

I wanted to share with each of you what we have been going through with our little man Cooper since last October. In sharing this we also received some answers from our visit to Vanderbilt Children’s Hospital yesterday. As you all know Cooper is our 4th child and with that being said I am not as paranoid with him as I was with my first Jackson so it took some time to diagnosis. In October 2008 I picked him up from daycare and he felt warm but no big deal because I had to get to Jackson’s middle school football game, not to mention he was fine, no running nose or cough. When we got home his temperature was 104, still nothing a little Motrin could not fix. Well after a couple of days of a high temp (still with no other symptoms) I called his doctors office and they informed me there was a virus going around that was just a high fever so keep giving him Motrin and Tylenol every 3 hours, and after 4-5 days he was fever free.

Exactly three weeks later November 4 we got other call from daycare that he had a fever of 104 and Brad took him into the doctor. After examining him and doing chest x-rays they could not find anything wrong so they decided to do blood work. His blood work game back fine except his white blood count was just a little low which the doctor said was probably a virus. A few days later after he was not any better and still had high fever with no symptoms we took him back to the doctor where they did MORE blood work. This time the blood work basically showed his crazy results, his neutrophils and lymphocytes as well as his white blood cell count were way out of whack. As the doctor described to me for whatever reason he had very little immunity so they put him on an antibiotic and had me keep him home from daycare for a week. We rechecked his blood work a week later and everything was on the rise, so once again we thought this was just a virus.

Well since this occurrence Cooper has ran a high fever of 103 or 104 every month, some months he would get cold sores around his month but still I did not think much about it but by the grace of God I would take him to have his blood drawn trying to catch some type of trend. A couple of weeks ago he got fever AGAIN; back to the doctor we went for more blood work. A few days later he got a yucky nose and a deep cough so they put him on an antibiotic. At this point we decided to go see a Hematologist at Vanderbilt’s Children’s Hospital just for the what “Ifs” Well because of all the Blood Work that I insisted that they do and from the extensive Blood Work that they did yesterday they are more than 90% sure that Cooper has a Blood Disorder called Cyclic Neutropenia. After much research this disease is listed as a “rare disease” by the Office of Rare Diseases of the National Institute of Health. Cyclic Neutropenia is a rare blood disorder characterized by recurrent periods of extremely high fever and low blood levels of neutrophils which are in the bone marrow and can result in frequent infections. The low levels usually occur for 3-7 days every 21 days but can cycle every 14-36 days. With all of this being said whenever Cooper shows signs of fever or mouth blisters he is not to be around anyone because of his chance of catching an infection that his little body will have difficulty fighting. We were also informed that because of this disorder he will mostly like be put into Vanderbilt Children’s Hospital anytime he gets sick because he will need his antibiotics via IV as well as the only therapy drug for this disorder called GCSF. There is so much to say about Cyclic Neutropenia and still so much for us to learn, I encourage you to go out to the wonderful worldwide web and research. I will post more as I learn more. Vanderbilt’s Family Life Center is mailing us some information on this Disease.

Our plan of action for the next four weeks is Cooper is going to go to his regular Pediatrician every Monday and Thursday for blood work to continue and get a trend. We will go back to the Hemotolagist at Vanderbilt on June 11 where they will do more extensive blood work and look for a mutation gene from there they will decide if they want to pull any bone marrow which would take place on June 15th.

I would like to say thank you to each of you for keeping us in your thoughts and prayers during this life changing time of our lives. I would also like to ask for each of you to ask God each day to place a healing hand on all the sick children in this world. Each of us get so busy with our day to day lives and don’t sit back and think about what other families are going through because “ours” are so perfect, I got a huge eye opening experience yesterday walking into Vanderbilt Children’s Hospital and seeing SO many sick children and just had to stop and say THANK YOU GOD! Cooper is sick and will be sick for the rest of his life unfortunately but this new found illness will not cause him to suffer like other children that are fighting for there lives right now! God Bless each and everyone of you and I am very thankful that you all are in my life!