Good morning Lori,
Today is day 42!
It’s been a busy couple of weeks managing symptoms, home health, appointments with other providers, etc.
He is stable, most blood tests are all going in the right direction, and his energy is returning ever so slightly every day.
He is only able to get on half of the protein and calories he aims for each day. I am cooking him high protein soups and stews, and shakes. These are his preferences at the moment.
The nausea meds are taken on a schedule but it only helps to a certain extent. He is also off of dairy unfortunately for the most part because the phlegm it causes in his throat. Swallowing is getting better with the help of swallowing exercises and therapy. Thank goodness for the competent, well trained clinicians like the speech therapist we found! I’m still giving IV Magnesium a couple times a week plus he has started oral magnesium. We can’t wait for him to graduate away from the IV version of magnesium and get the catheter removed.

A rash on his trunk has cleared up (not GVHD!). An eye infection (also not GVHD) has also cleared up!

He also drove with me a couple times this week. He is not yet cleared to drive alone. Maybe soon?

He tested 100% donor cells on two of three numbers of the Chimerism test, and 63% on the third. The doctor said at the last clinic visit that he looks better than he expected!

So all in all, good news to report. I’m still anxious about next steps - bone marrow biopsy next month, decisions about maintenance chemo going forward, and for more improvements in his weight, muscle mass, overall energy, his chemo brain fog to lift. What will be his new normal I often wonder.

Trying to stay in the present, grateful for how far we have come. I’m just starting to process the emotions and all that we have been through these last six months, in the little downtime I have now. I feel my journal calling me to write it down…

Hope you are enjoying the summer! Your presence in “our” world of souls facing this life altering thing is a most precious gift. No one in our life comes close to being able to ask the right questions or truly understand what we are going through.
Thank you!

Mary