May 26, 2022 Update - DAY 22

 Staying the Course

Hello and welcome back.

We experienced some rough waters this past week.  When the seas and weather are difficult to navigate, you need to work a bit harder and dig a bit deeper to stay on course. We are going with the nautical theme as Jackie has been talking like a sailor since she shaved her head.

As indicated previously, Jackie has experienced some emotional and physical highs and lows for a few weeks.  Although things are progressing, there have been a few setbacks along the way.  Her mouth and throat are still very sore.  For almost a week, it was so painful she needed to take pain medication just to swallow liquids.  She then started a new medication that did not cooperate with her and pretty much put her in a 36 hour doze.  She can barely remember anything from those few days and what she can remember is conglomeration of reality, dream, overheard conversations and dialogue from various cooking shows.  But despite these rough waters, Jackie has been very purposeful when she is awake and alert.  Yesterday she could only eat four spoonfuls of her oatmeal, her goal today was five.  Tomorrow will be six.  She has been using this in all aspects of her healing.  Ensuring a slow yet consistent progression.  This is resulting in a increase in fluid and food intake, a decrease in pain medication and and increase in exercise and engagement.

Jackie's care team have confirmed now that her mouth, throat and other issues are due to her developing graft vs host (GVH) disease.  They are treating her with a gambit of medications and some pretty serious steroids which will help alleviate those effects.  It is typical for most people following a BMT to experience some degree of GVH.

Jackie's cell counts are continuing to increase.  Her hemoglobin is now up to 97 and platelets are up to 50.  This really good news as this demonstrates Jackie is heading in the right direction.  Once her mouth and throat are better and she no longer needs pain management, her care team is hopeful she could be discharged in the next week or so.

Our initial expectation was that she would be in the hospital for four to six weeks and we just hit four weeks.  Once she is discharged, we still have to remain within an hour of the foothills hospital for a period of time.  Usually, patients are cleared to go back to their home community around day 100.  For us, that will be mid August.  We are definitely looking forward to having Jackie back at the apartment, but we are also approaching that with cautious optimism as we know it is common for patients to be readmitted to hospital.  Any fever or sign of infection will need to be treated aggressively in hospital until her new immune system is up and running.

So to come full circle, despite the rough waters, Jackie is digging deep to stay the course. One spoon of oatmeal, one sip of water and one step at a time, she is progressing incrementally.  

Thanks for reading.

Mike