Well Jeremie was discharged from the hospital. Woo Hoo!!! Took stinking forever! Good heavens. Jeremie is doing really well today. It seems the pain is under control. No small feat!
So the results from yesterdays CT scan. Jeremie has tumors on/in the pleural space in his chest. Tumor on his chest wall and a mass on his adrenal gland, and the numerous tumors we see right under his skin. Needless to say the last couple of treatments with the Dacogen haven't been effective. And that the leukemia is progressing despite treatment and the transplant. We had started backing off of the steroid over the last two weeks, and Jeremie started having stomach problems again (graft vs host disease, without a good anti-leukemia effect).
We had a wonderful, real and thoughtful conversation with our oncologist last night. We have decided to go on IHC's hospice services. This will allow better pain control for Jeremie. In some ways it has freed us. It is like we are just entering the next phase of treatment and our life. I personally feel some pressure that has been lifted. We of course asked The All Pertinent Question (I'm sure you are all wondering as well), what is our time-frame? That question is a question we do not have an answer for. We were told that there isn't a crystal ball. We do know Jeremie's disease is progressing, and we have wonderful nurses and an incredible doctor that will make sure Jeremie will live his life as pain free as possible. And I can't ask for anything more.
Officially being moved to hospice doesn't really change anything in our life. Except access to pain medication/pumps/staff etc at all times. And hopefully no more hospital admissions! So that is kind of it in a nutshell.
We plan to go have some more adventures...and will definitely update them here :-)
Love to all...
Cori & Jeremie
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