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My Story

Hi, my name is Jeremy McIlwain, I live in Semmes, AL. I am originally from Silas, AL. I work for McIlwain Construction, a small family Heavy Construction Business. I am married to the best woman in the world, Cynthia. I am currently undergoing EPOCH-R chemo treatment in Bethesda MD at NIH. I started treatment on 11/7/09. I am still unsure how many treatments they are going to give me, but I will take them every 3 weeks. I will keep you updated as I go along in my journal. Be sure to read it. You are welcome to sign my guestbook. I will try to respond back to you. I only have 1 thing to ask of you, PRAY. That is what keeps me going, the knowledge that everyone is praying for me, I can feel them. Thank you for all your support.  



Ok, so now that you have read what I am going through now, I will fill you in on where all this started. When I was 7 years old, my dad found a knot on my left rib cage, when biopsied, it was diagnosed as Ewings Sarcoma. A very rare form of cancer because it is a long bone cancer, and I had it in my ribs. So through several attempts to begin treatment and have radiation done in Mobile, I was referred to NIH by my radiologist. The prognosis was not good at the time, I was told that I had a 20/40 percent chance of living. I underwent several surgeries, and extensive chemo and radiation. The treatment was so intense that the Dr.'s said that if the cancer didn't kill him the chemo would. I dealt with this for a year or two, and it went a way for a while, I relapsed several times through the years, and had several surgeries to remove the cancer. I had 4 1/2 ribs removed, parts of my lungs removed, several ports put in and removed, several lmph nodes removed. I have been in remission from Ewings Sarcoma since 1998. 
In 2003, I started losing my energy, and losing weight very rapidly. I was getting sick very easliy, so we made it back to MD. I was diagnosed with something called Heavy Chains Disease. I was treated with a new type of chemo that made me feel better than I had ever felt. When I asked the Dr.'s if I could get some information about it, they told me that they didn't have any information on it, I was writng the book on it. Boy didn't that make me feel good.  So I got better. Thank you Lord. They told me that Heavy Chains could do 1 of 3 things. Get treated and never come back, get treated and it come and go, or never go away. In 04 I started dating my wife. We got married in 05. In 2006 I started getting sick agian. It started out with what we thougt was a cold. I ran fever for 8 solid weeks. After several rounds of antibiotics and 2 hospital stays, Dr.s coudn't make up there mind about what was wrong with me, I knew, they wouldn't listen to me. So me and Cynthia went back to MD.  This was a hard time for me, my lungs were full of fluid, and no one could figure out why. As it turns out my lymph nodes were swollen around my trachea and not letting me breath right and fluid was building up. I was literally drowning. I would stay awake at night afraid to go to sleep because I thought I would drown.  I got started on the same treatment that I had in 03 and within 2 days I went from being on 6 liters of oxygen and a 90% o2 sat. to no oxygen and 100% o2.  I had 2 rounds of 4 treatments each. In november of 06 I began having terrible shoulder pain. It wouldn't get better, no matter what I did. No amound of medicine or chiropractor's would ease the pain. In one of my x-rays that was acidentatly positioned to high showed something eating away at my shoulder blade. By this time I was so weak that I couldn't fuction on my own. I couldn't even get out of bed without help. I could barely walk from the bed to the couch. If I went anywhere I had to have someone push me in a wheelchair. So Momma went with me to MD, and found out I had Epstein Barr Virus. So the only thing we could do was start a heavy chemo regimin. The chemo that I had was EPOCH-R. It was a very intensive treatment. I lost my hair, had loss of feeling in my hands, had some loss of feeling in my feet. Just a really tough time. I had 6 rounds of this treatment. Started the first week in Jan. and finished in May. I took this treatment every 3 weeks. We were living with momma in silas during all of this. After i was through with chemo, we moved to Mobile. After moving to Mobile, we became members of Theodore Church of God. We are both Sunday School teachers. We have had a pretty busy but uneventful couple of years. I started getting real tired and staying tired in may of 09. I got pneumonia in aug of 09 that lasted for a good month. And it went down hill from there. My heavy chains disease is back, and have started getting treatment agian. but i filled you in on that in my brief story. If anyone has any questions just email me or message me and I will try to answer. I know that this sounds like my life has been absolutely terrible, and I am not going to say that it has not been hard, but I need and want you to realize that it could have been alot worse.  For starters, I could not be here today, but I want to tell you that there is only 1 reason I am still here, it is not what the DR's have done, it is ONLY by the GRACE of GOD, that I am here, i am here for HIS GLORY, to do HIS will, to spread HIS word, to HIS people. The Drs and everything they do are made possible by GOD. I give GOD all the Glory for my life.   

Journal

Notifications

Feb 6, 2010 9:02am

I did not go to church Sunday morning.  I know that I should have went.  I stayed home and visited with Mama, Grandmama, and Aunt Tese.
We had a good day Sunday.  It was enjoyable and relaxing. 
I have been so tired of being in the house all the time.  But now I am feeling much better.
I worked in the office Monday thru Friday.  I did not over do it, I just took it easy.  Me and Daddy went to Pensacola, FL Thursday to look at a job, and Hammond, LA Friday.  It was nice to get out for awhile. 
It is good to be getting back to a somewhat normal routine.  It will still take some time.
Thank You for all the prayers.

jeremy...


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jdmcilwain@msn.com

Healthcare Facility

National Institutes of Health Clinical Center
9000 Rockville Pike
Bethesda, MD 20892-1504
United States