Wednesday, January 20, 2016

Days +104/+106

Day +104
As usual, the plans changed again today. Raul did not begin the Etoposide (chemo), as they decided he is now healthy enough to get a bone marrow biopsy and spinal tap now that his BP and fevers are better. He will get these on Wednesday, along with the skin biopsies we delayed last week. They are not questioning the diagnosis, as he already meets enough of the criteria without those tests, but they do not want to give chemo before the tests as it could affect the results. Raul is getting the steroids once a day, and has not had a fever since they started! Because of scheduling, we are going to be starting dialysis around 7 tonight, which is much later than usual! Raul will not be happy to be woken up to get weighed at the end!

Day +106
Today Raul had his blister test, skin biopsies, bone marrow biopsy, and lumbar puncture. The preliminary testing from the lumbar puncture is normal (as we expected), but there are some tests that will take longer to come back. We should have the first set of preliminary tests from the bone marrow biopsy tomorrow, but more will take longer, including the engraftment information.
This time Raul's blister test took approximately 40 seconds. This surprised me as his thighs have what I consider to be "good" skin. I do not have the exact times from his two other blister tests, but the one in September they said was almost immediate as well. Usually with RDEB it takes several minutes, but the test results do seem to vary a lot, even within the same patient. Tonight Raul is having dialysis, so it has been a busy day!

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