I am going to start off with saying, darrien is 10 years old and special needs. Me being his mama I will fight for him every day, I will be his voice until the day I can't be his voice anymore and if it ever came down to giving my life so my son could continue on with his I would. I don't come on here to take advantage of anyone I come on here to make a way when it's hard for me to see a way to be able to get my son the help he needs and deserves. Hey everyone it's us again.....everyone knows our story and the battle we have been fighting for well over a year and a half now with Darriens kidneys and the BK virus. Well we went to his infusion yesterday Friday 6/30/23 thinking this was the last one because we finished out the treatment plan set by infectious disease (keep in mind the cidofovir medication did what it has been doing, virus plateaus and doesn't go away or go higher just stays) ....welp WRONG. In meeting with his ❤️ transplant team they did not like the idea of the medicine not working that we jump to removing both kidneys and just basically wait on a list for what i was told could be years for kidneys. So our plan now is 30 days, a month of an experimental drug treatment that the infectious disease doctor has been holding off on as his last resort. Well we are at the last resort now. I know GOD works in his own way and that was proven this week. On Wednesday 6/28 I was laid off from work. The bright side of it was I can now be with Darrien through this new endeavor to try and get rid of this virus. He definitely is feeling the effects with not being able to keep anything down, tired all the time and just not himself. The experimental drug is going to call for a lot of travel. We are in Bryan which is 3 hours from Dallas, 2 hours from Austin and 1 1/2 hours from Houston. I will have to travel to Dallas on some days and then Houston for others, attend medical conferences with some of the doctors with darrien to discuss him as well. For some reason this virus doesn't want to leave his kidneys and we have no idea why. Once we can rid the virus we can see if his end stage kidney disease was caused by the virus and or was it because of long term use of his immunosuppressant (prograf). I know a lot of you have helped before and trust me from the bottom of my heart it was all greatly appreciated. The prayers and the shares getting our story out there and the amount of support y'all showed us has been amazing and definitely a GOD sent. Thank you
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