Hey everyone... just a short message to say I am fighting hard. Things are going better at Moffitt and I am focusing on just getting better and eating, getting fluids balanced and getting healthier. Thanks for everyone's love and support. Everything you are doing to help us is overwhelming and I can't tell you how much we appreciate the prayers, thoughts, and energy. I miss seeing everyone, it's lonely in here sometimes, and the best thing to do is just stay positive and that's what I'm trying to do. Brook is always here to help and my three little babies are always a heavy motivation. I can't tell you what it's like to miss your kids so much, but I know once this transplant, and all related viruses are resolved, I will be able to see them and play with them like a healthy dad should. 

I just want to say how much we really still need to the support of all our friends, family, and those in our circle of love, the geeks and the planners and designers and all of us guys and gals who love the tech! Thank you so much for anything and everything you are, and have been doing to help us. It's really rough sometimes, and thanks for letting us know we have your love and support. I hope to see all you guys and gals someday soon. Another Harry Brelsford bash in the future I'm sure! I love all you guys and gals. I'm keeping the fight on. Thanks for everything and for the great minds I have had the pleasure to meet and hope to meet someday soon. 

Here's the medical scoop:

Transplant is now fully engrafted.
Fighting off Virus HPPV6 and BK. Dr's are giving me the strongest antibiotics on the planet I'm sure, but these viruses are rough to fight. It's a daily struggle, but it's going to be worth it someday.I just know it. 

Thank you to my bone marrow donor, wherever you are. Thank you to my friends, and to everyone who is , and or will, help us, and I hope everyone has a great week.
 
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Brook and Jeremiah waiting to see Dr. Lockhart at the Moffitt Genitourinary Oncology Clinic
::UPDATE::

Right now we are waiting to see the doctor about a possible kidney infection that could cause a delay in my transplant.

Post Visit: I have been scheduled to have a procedure done the week of the 21'st to have my kidneys and bladder scoped. That sounds about as fun as letting someone poor honey over me and releasing killer bees nearby.

I suppose it's just another bridge I have to cross to get to the ultimate goal of transplant. Besides, a kidney infection would kill me after my chemo and radiation. Let's not take any chances with that shall we?
 
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Three-dimensional molecular structure of a telomere (G-quadruplex).
Today Dr. Tomlin confirmed the suspicions of the staff at The National Institute of Health (NIH) in Bethesda, MD, that I have a very rare underlying genetic abnormality called TELOMERE DISEASE. This strange and highly rare disease duplicates your Telomere's at a rate of 2x-?x, which determine how fast you age by duplicating down to Zero, which is when you die. This disease is also known to cause Aplastic Anemia, Pulmonary Fibrosis, and brain damage. The NIH has recently started a study on those who have Telomere Disease, and I will most likely be participating as long as another complication doesn't stop me from doing so.

Dr. Tomlin informed me that compared to a normal 30 year old man, which I am 30, but not normal :-), my Telomere Length Was Substantially lower. That means that my Telomere's are duplicating much faster than they should. Depending on how quickly they are loosing genetics and getting closer to the end of their 0 day. Soon, as my Telomere's are counted correctly, I will know the approximate date of my death, Day 0.

Here's a better way to phrase it from Wikipedia  "DNA sequences are lost every time a cell/DNA replicates until the loss reaches a critical level, at which point cell division ends." CODE: When cell division ends, anyone with the disease just ceases to live. Just like that... the clock runs out. It makes you want to switch to a whole foods and healthier diet, doesn't it?


So now we just have to wait and see what affect this is going to have on how my doctor's at Moffitt continue with my transplant. I'm assuming my Head of Transplant Team, Dr. Perez, can find a solution, or figure out what complications could be caused and work around them. Only time will tell. My next appointment with her at Moffitt is October 25,2012.


Unless something happens in the mean time... I'll write more then...


Sometimes there just seems like no end to the suffering some of us have to bear. But I would rather bear it myself, than a child, or a pregnant mother, or someone who it might just be too overwhelming for them to handle. I know I can handle it, no matter the end. I've been through all this before. I'll keep fighting until my last Telomere burns off in a single flick of God's mighty finger, and I'll be released from this human body to wander the galaxy as something other than human, but a spirit indeed.
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Human chromosomes (grey) capped by telomeres (white)
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Telomere