Update: Yes, I know it has been awhile, but sometimes I just have to take a few moments to just be, soak it all in and not share. Brett is still taking the 3 times/week med (Remicade) for his GVHD (Graph vs. Host Disease) and they have added another med (Rituxan), as well to help get that under control once/week. He still continues to be having diarrhea and passing blood and lots of clots in his stool. No real changes there. Things are either staying the same or perhaps getting a little worse, according to his doc. He had two instances where they put a catheter in, under sedation, and put in and held for one hour a med (Cidofovir) into his bladder to try another way to attack the BK virus. It was unsuccessful and actually he ended up bleeding more with bigger clots. He is now back on the IV version of Cidofovir. He has also been getting headaches for over a week, now and the meds dont seem to help it. They come and go on their own. On Tuesday, he had a bone marrow aspiration for his 100 days. He also had a lumbar puncture to check his spinal fluid. They found he had entirely too much protein in his spinal fluid. The average should be around 40 and BD had 404. They performed an MRI on Tuesday, as well. It showed nothing. He will be having another lumbar puncture next Tuesday to compare the protein numbers. Bretts spirits havent been great, at all. He feels as though he will never get out of here. He doesnt want his friends visiting because he is embarrassed by what they might see when they are here. But, this morning, I saw my little boy having fun for the first time in what seems like forever. Zoe stayed with us overnight so she could go to Camp Good Days this morning. BD asked if I could hook up the Skylanders game. He showed pure joy and I saw him being his old self while playing the game with Zoe. His spirit needed that and it warmed my heart more than I can even begin to tell you. Im keeping her here one more night so they can spend a little more time together. I think it will be great for them both. She was great with him. I cant thank you all enough for the Prayers, Thoughts, Cards, Gifts and especially Platelets and Blood. So many keep asking me what Brett might want for gifts or wish they were closer so they may do something to help. You can do something huge to help...not just Brett, but others who are struggling to stay alive, as well. Go to your local Cancer center...I promise you, they need platelets. If you dont have that capability...donate your time to help at the local hospital or nursing home just visiting with people. We have amazing volunteers here who come up and hang out with Brett, just so I can get a shower sometimes. These are things you can do that do not cost a dime, only your time and honestly, that is more precious than anything else we could receive. Saving the best news for last...we have the preliminary results from the bone marrow aspiration...currently, Brett David is free of leukemia. Have a wonderful weekend and Ill post more info after his lumbar puncture on Tuesday. (If you have any questions regarding anything I posted above, please put it in this post, I am receiving a lot of personal questions and Id rather answer all of yall than individually...Im sure some of it sounds confusing and Im more than willing to explain, as best I can.)
Posted on: Fri, 08 Aug 2014 18:39:16 +0000
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