Its like 5am and DUB won't sleep, he's laying beside me doing his crazy fists and obviously feels great. The doctor was just in here because he could here him yelling down the hallway, CARS, ANIMALS, DIS ONE, DAT ONE, SHAPES, BALLOONS. EVERYTHING HE CAN THINK OF SAYING ITS ALL COMMING OUT. The doctors are all floored with the drastic change in him. They have never seen him his normal self.Today I saw a look in Dr.Stienhursts eyes that ive never seen before, I think it was hope. He saw DUB talking and yelling HI DOCTOR and naming all the animals he saw and Dr Stienhurst saw what weve been talking about, finally. This special little fighter that is just not giving up. DUB is very special and everytime he gives me the D word speech and cant look me in the eye I keep saying but you don't know DUB he's different, I know what you see on paper is bad but he's made it through 4 rounds of the most intense chemo in New York virtually unharmed. Going to the ICU saved his life. He was being pumped with 5 liters of exess fluids per day and not peeing it out. The hospital did this to him. Im not to get into the fact that we have so many communication problems with this place to the piont where we have been fighting them for two much saying he's getting to much fluids and finally they alsmost killed him. He came out of the ICU over 1kg lighter, breathing normally and looking and feeling normal with his IV fluids cut down to over half of what they were at when we left here. This is just one of the many beefs we have been having here. But the most important thing is DUB.... We had a team of Dr's with no hope and it took all of this to look at our son and see it. I meet with the rest of our team tommorrow where im gfoing to confront them about this. I need to look them in the eyes and say now do you believe??? If you do lets fix him, if you don't we are taking him somewhere that does. My husband spoke to Boston today and they cant believe how we have been treated not to mention we have people telling us we should go to the news and lawyers wanting to represent us in lawsuits. But in the end Dub is what matters right now and were not going to stir the pot. We need to get him to transplant and get that cord in him. The T-CELLS are harvesting and the miracle cord blood is waiting. NOW WE PRAY HIS COUNTS COME BACK WITH LESS BLASTS...... this is the miracle we need, if the cyclophosphimide/etopiside worked, even a little bit we can repeat it.. There is a good chance it might, it is the very same drug that kept him in remission for a year..... im crossing my fingers, on my knees and asking for everyone to pray....... DUB deserves this transplant lets get him there.. I think the prayers are working, he looks and feels amazing right now which has basiclly baffeled everyone on this unit.. Our baby is a mangler we told them. I have been so scared lately because of them and yelling at my husband because he keeps saying, im not worried, he'll be fine. And I thought he was in denial but he knew it, he feels it and he was right he is more then fine he is a miracle.. We started GCSF (all of the sudden 2 weeks later????) and lets all pray for some good cells...........
COME ON DUBS BONE MARROW YOU CAN DO IT..................... GO DUB GO!
WTF is going on
17 years ago

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