I was given some good advice from a dear friend at church on Sunday, and that was to try to post everyday for the next 3-6 months in order to track the differences we are seeing. He told me that you all would be interested, so I am sorry if this is too much for you :-) Please read at your desired pace :-)
Today is 6 days from her treatment. We arrived home two days ago, and Lila has slept a ton since. I think part of her exhaustion came from the trip itself, and part from the procedure. So, after a 4 1/2 hour nap on Saturday, I think we are on the upswing.
Here is the run down of what we are to expect now that the cells are making their way through Lila's body:
Lila received 8.2 million cells, made up of hematopoietic cells (cells mostly found in bone marrow) and stem cells.
Hematologic cells and stem cells have the same CD34 marker on them, so it is hard to determine which cells are actually stem cells. Therefore, all of the cells are injected into the patient, while the 5-7% that are stem cells do their job, all of the rest turn into normal blood cells and function to improve the immune system.
With that 5-7%, we will see behavioral improvements within about 4 weeks, which is very exciting. However, we will see the bulk of the changes within the 3-6 month time frame (physical changes, speech changes, cognitive changes, and the like). Once we pass that period of time, we will continue to see growth and change for the first 12 to 18 months. We can then build on those changes as best we can by doing intensive therapy programs, possible one on one tutoring sessions, and fun stuff like swimming, gymnastics, etc. We actually are thinking of starting Lila with piano this fall, as she has a hard time with hand eye coordination. We hope that this would help her to use her brain in a different way, strengthening the memory and coordination needed to do such an activity.
So this is post number one in my series, hope you all enjoy!