Saturday, June 8, 2013

Initial biopsy results

Friday and Saturday have been a blur! One of the biggest hurdles has been the writing of the medical orders because they switched from inpatient to outpatient to inpatient within 72 hours it has been difficult for everyone to get on the same page and to get them straight. They have been incorrect multiple times per day. The doctors were confused and the nurses were confused. Thank goodness, Aaron wasn't confused! There was a 'near miss' today with the Prednisone. It was recorded incorrectly and was given twice. Thankfully, Aaron caught the problem and did NOT administer a second, 40mg dose of Prednisone today. There is a report that gets written up when a mistake like that happens (another reason why it is so important for every patient to have an advocate, especially a child). Advancing the schedule, Dr. Levine has moved him to a 5 day reduction schedule instead of a 7 day schedule. This means tomorrow he goes down to 30mg per day and Thursday, etc. They want to get him in the 5-10mg range with gvhd under control. With the use of ECP and HBOT to control the lymphocytes, we're really hoping that he can have 5mg or less! We'll just have to wait and see.

In the meantime, his bladder is doing much better, but has an extremely high level of BK Virus. They have administered a drug for this (Sorry, don't have the name at the moment) and we'll see how he responds. They are running IV fluids to keep the bladder from clotting. This is working great so far. His stomach has gotten smaller and his cheeks have reduced in size. He was holding a lot of extra fluids. We'll keep you updated on the virus situation, it is a slow process to wait for the these test results.

In other news, we have the initial results back from the biopsy:

Mildy hypocellular bone marrow with maturing trilineage hematopoiesis. No morphologic evidence of a myeloid neoplasm. Cellularity: 50% (side note, normal at this time is 25-30%). No dysplasia. Myeloid elements adequate for full spectrum of maturation. No Atypia. No circulating blasts.

In other words, that is some nice, healthy marrow folks!

We feel blessed to be on the path.

Peace and Love to all of Xander's followers,


P.S. Roos Roast, thanks for coffee... it keeps us cruising!

1 comment:

  1. Love ya, Xan Man. Keep on improving. We think of you all the time, and I mean ALL the time.

    I spoke with Molly the other day on FaceTime but she got silly (tired) so I spent the rest of the time with Grandma Peggy. It was good to see them.