Steve’s Story

Site created on September 28, 2018

Steve is checked into his new temporary home at Froedtert Hospital in Milwaukee.
The goal is to achieve remission (shrink MDS cells from 16% to 5% or lower by the end of his induction chemo, which has lasted 7 days 24/7.  He needs to be here because of wiping out the immune system.  The biggest risk is infection, so best to be here at Froedtert.  85% of people do get an infection, fever.
Plan:
Induction chemo has been completed and he will stay at Froedtert another 2-3 weeks.    He will have another bone marrow biopsy,  Monday October 1. That will tell us how the induction chemo affected the MDS cells.


In the near future he will have a bone marrow transplant.  His brother Kevin, or sister Susan may become donors.

Newest Update

Journal entry by Teresa Esser

Steve's PFT, pulmonary function test the beginning of April showed function at 63%. Another PFT done on April 26th shows improvement of lung function to 74%. Great news.
 
Steve is struggling with a side effect from the bone marrow transplant, called Gvhd, graft vs. host disease. He has excessive dry mouth which greatly inhibits his eating and swallowing of food. His has an appetite but dry foods cause problems. His weight is still down quite a bit with all the treatment he has been through. He wants to eat more but it is a challenge. He has lost 4 lbs in 2 weeks. Thankfully he is having no problems with swallowing the many pills he needs to take.
 
Behind the scenes, his Froedert team has been working for a few weeks to get insurance to approve a medicine he needs. Success, we are getting the medicine at no cost. The medicine is to help with dry mouth and lung issues. It is called Jakafi, it is a chemo pill for targeted therapy says the oncologist.
 
His labs are looking great.
 
He is happy to be out of the house and at work part-time. He returned on April 1.
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