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.
 
Hello everyone!

My apologies for not posting anything for such an extended period, but I was a bit pre-occupied in the hospital.

So here's a re-cap:

After going through Chemo and full body Radiation, the donor was able to give his bone marrow, and it arrived successfully at Moffitt Comprehensive Cancer Center on Nov 10'th at 3:30am. The process lasted approx. 3 hours.

I received the transplant - So far everything is going well. My counts are slowly coming up and everything looks like it's heading in the right direction.

Right now I am on a 100 Day hiatus that I must e very careful and mostly stay inside away from people. My white blood counts have not risen enough yet for me to be around the public without wearing a mask, and honestly, to me, it's not worth getting sick by going out. So I am spending a lot of time with Brook trying to rebuild my muscle tone and get my lung capacity back to normal. Nothing like being in the hospital to steal your body from you. I've lost about 35 lbs and look like an alien, but it will start rebuilding as my appetite and activity level rises. Lord know's Brook is cooking enough food for me :-).

I'm going to make a video to post sometime tomorrow and I'l post it up. I'll have Brook join me so she can fill in anything I can't recall right now. Med Head is the worst!

Until then, thanks to everyone for their love and support. Our batlte is not over, so your continued support is invaluable. Good night my friends!

~ JEREMIAH
 
Total Body Radiation was an interesting experience. The machine was massive but because the Radiologist Team needed full body treatment Jeremiah was placed roughly three yards away. He went through twenty minutes on each side excluding his head and legs. The mucositus has already started to bother him so hopefully that is a good sign that the radiation did it's job. Transplant in T-minus six hours. More to come! Please keep your thoughts and prayers with him through the night.
 
Today is the last day for Chemotherapy and Jeremiah's TBI(total body radiation) session. So far he has been doing really well. It is difficult to get any sleep in a hospital but even with that working against him he is a trooper. He is still eating which is a wonderful thing while going through this process. Jeremiah is such an inspiration and constant source of perspective.

Friday is day 0 and transplant day. That's when all the fun will begin.
 
 
Today I get my Hickman Triple Lumen central line placed because I start Chemo this Sunday Nov 4, 2012. Wish me luck!
 
Come out today for the Second Annual Kiting Tampa Bay kite festival on Treasure Island, Fl

For more information visit WWW.KITINGTAMPABAY.COM
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Feeling better after getting my morning dose of packed red blood cells!
 
It's about 12:30 am. I'm bleeding heavily and have to rush to the Direct Referral Center (DRC) at Moffitt Cancer Center. I'm panicked, there's a lot of blood. My platelets are low, and I could be bleeding internally faster than I'm bleeding externally. More updates Later.

Update: 

My platelet's fell far. Bleeding hasn't stopped. I'm lucky that the staff in the DRC were on the ball. They gave me a total of 16 unit's of platelet's and two unit's of Packed Red Cells to help replenish the blood that's been lost. It's going to be a waiting game now to see what happens, but it's 4am now and I'm exhausted and must sleep. Goodnight my friends, I hope to speak to you again soon.
 
Today was a very important visit with the head of my transplant team, Dr. Perez. We are going to go over the findings from my visit to the National Institute of Health (NIH) and talk about the schedule for my transplant in the next two weeks. We will also be getting news back about my visit to the Thorasic Oncologist, Dr. Kaszuba, and his findings concerning the state of my lungs. There is some concern because my Oxygen Transport level was much lower than expected. This means that for every breath I take, I'm only getting about 1/3 of the oxygen transferring into my blood vs. a healthy individual. I will edit this post after the visit.

POST VISIT:
Well, we got some more bad news today, which puts us on a losing streak for this week. Dr. Kaszuba confirmed that my lungs are not functional as normal because over the last few years I have developed Chronic Pulmonary Fibrosis. This would normally have put me off the BMT transplant list, but because I don't have any other treatment options, I agreed to go forward with significant risks. The chance that I will develop Graft-Versus-Host Disease in my lungs is now much higher than before. This is a deadly complication that can present itself within a few day, weeks, or even years, but you won't know until it's too late.Not the best news, but we're moving forward anyway.

The second bit of bad news was actually confirmed a few days before this visit, but we were waiting to find out more about the treatment options available. I have a very rare case of having a modified form of DNA called Telomere Disease. We now know that this underlying disease was most likely passed down from my biological father, who died at an early age of Pulmonary Fibrosis. Telomere disease was also a contributing factor in my eye's hemorrhaging and my liver developing cryogenic cirrhosis back in 2005. There is current only one treatment for Telomere Disease, and that involves the injection of a synthesized hormone called Telomerase. Telomerase helps actually repair Telomere's, and can also excite the DNA into growing NEW Telomeres. 

Ok, thanks for the science lesson right? Moving on....

Dr. Perez also informed us that there is a bit of a hold up getting in touch with my donor... this could be a SERIOUS issue if the donor backs out at the last second. Please don't sign up to be a donor just for your brother or nephew or whoever. Sign up to give bone marrow to anyone who needs it. At this point in my treatment, I either DO (get the transplant), or I DIE (which is not an option).
So if you have signed up to be a donor in the past, don't back out if someone needs you. You will literally save another life from having it's flame extinguished. Consider this: There's a gun cocked and loaded to the patients's head, and saying NO releases the trigger. Don't kill bone marrow patients by saying NO! Now I've said my peace on that. I'll keep everyone updated on this status for sure.

Now onto the next week:

We will be waiting to find out if the donor can be contacted and convinced to do the transplant. We have a whole week full of diagnostics and procedures to go through.

-Scope of Kidneys
-Endoscopy of stomach
-Colonoscopy
-Blood Transfusions
-Dr. Visit's
-Lab visit's to check blood counts
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X-Ray of a lungs with Pulmonary Fibrosis
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Example of using Telomerase to Extend Telomere length
Start this clip at 14:32 to skip her boring story about a bike trip she took. This is a very descriptive presentation on Telomere's and aging, as well as the negative effects of loosing Telomerase. This is a long video, sorry.
 
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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?