In Augusta

Here I sit in Bree's hospital room, our weekly ritual. She has had the bleeding procedure, where they take out a unit of her blood. Because she is barely above 90 pounds, they have to give her IV fluids to make up for this blood loss. She had a PICC line placed last week, to prevent having to stick her over and over for blood work and IV's and such. She has had speech therapy and now is just exhausted. She has had interferon treatments. She receives these 3 times a week, so two of these are done at home, by our own personal nurse and her sister, lil Bee. I guess I'm ready to talk about the very rare blood cancer she has called polycythemia vera. It almost never happens in people her age but it can. Usually the age of diagnosis is between 60-80, but it does happen in kids and young adults. Her chances are good they say but she has high risks - Bleeding, blood clots, etc. There is a risk for it to go on and develop into leukemia which is what they thought she had in the first place, until after the bone marrow biopsy and blood volume and other blood tests came back, back in Late May/early June. So along with her traumatic brain injury and treatments for Epilepsy this is our new normal. She has an enlarged spleen but that is now starting to go down. Hopefully we'll be done with the "blood letting" soon. The interferon, which makes her very sick, is supposed to be over in about 6 to 18 months depending on how she responds, but since the swelling in her spleen is going down, she is responding well.
As far as everything else goes we are doing as well as can be expected. We plan a short vacation for next Friday and Saturday to Tennessee.
We see the new epilepsy specialist in September. Will try to keep more updates.