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I have been praying for EmilyRose for a while now but it has reached critical stage and I have been on the internet sending out request for her. I have reached all the way to Australia and now I am reaching out to you. Below is today's update. I am not a member of the family but do know them.
EmilyRose is 17 and had a bone marrow transplant...
We received some extremely discouraging news yesterday. The blood flow to Emily's spleen has reversed, just like the liver did previously. For this to happen at this time (halfway through the defibrotide treatment) indicates that the defibrotide is not defeating the VOD. There do not appear to be any options left after defibrotide, so Emily is fully in God's hands now.
The doctors are upping her feeds, adjusting her dialysis, sedation and pain medicine, and continuing to do all the things they can think of to make her comfortable and give her strength to continue her battle. At this point, in the ICU doc's words, we're buying time in the hope that Emily can beat the odds. And the odds are much steeper now than they were just a few days ago.
When we let the hospital for lunch yesterday, we were still getting good, optimistic reports, but by 5:00 Dr. Hudspeth was telling us about the spleen. It showed up on a "routine" ultrasound. I say routine in that they had no indication that there was any such problem. They were just using the ultrasound to get a more accurate idea of the fluid accumulation in her abdomen. Her liver function tests were steady or improving, and based on that the docs thought that the defibrotide was working. I believe they were as surprised as we were.
In Dr. Hudspeth's words, the next 7 to 10 days are "critical", as in if there is not dramatic improvement during that time, then we will know the fight is over. Dr. Tecklenburg this morning stated it a little differently, saying that they would continue to do all that they could to keep her strong until they had a clear sign one way or the other. He gave no time frame.
Please pray.
EmilyRose is 17 and had a bone marrow transplant...
We received some extremely discouraging news yesterday. The blood flow to Emily's spleen has reversed, just like the liver did previously. For this to happen at this time (halfway through the defibrotide treatment) indicates that the defibrotide is not defeating the VOD. There do not appear to be any options left after defibrotide, so Emily is fully in God's hands now.
The doctors are upping her feeds, adjusting her dialysis, sedation and pain medicine, and continuing to do all the things they can think of to make her comfortable and give her strength to continue her battle. At this point, in the ICU doc's words, we're buying time in the hope that Emily can beat the odds. And the odds are much steeper now than they were just a few days ago.
When we let the hospital for lunch yesterday, we were still getting good, optimistic reports, but by 5:00 Dr. Hudspeth was telling us about the spleen. It showed up on a "routine" ultrasound. I say routine in that they had no indication that there was any such problem. They were just using the ultrasound to get a more accurate idea of the fluid accumulation in her abdomen. Her liver function tests were steady or improving, and based on that the docs thought that the defibrotide was working. I believe they were as surprised as we were.
In Dr. Hudspeth's words, the next 7 to 10 days are "critical", as in if there is not dramatic improvement during that time, then we will know the fight is over. Dr. Tecklenburg this morning stated it a little differently, saying that they would continue to do all that they could to keep her strong until they had a clear sign one way or the other. He gave no time frame.
Please pray.