May 20, 2022 Update - DAY 16

 Pain, Discomfort and Emotional Rollercoasters

The past week or so has definitely been a challenge for Jackie, which translates directly into a challenge for the rest of us (meaning it is difficult to watch, I am in no way am implying Jackie has been a challenge to deal with.  There is no way I'd say or even imply that.  Never.  Shame on you for even thinking that).  

We were anticipating a difficult week as we knew the peak of the chemo after effects would happen around DAY 14.  I do not recall if I had specifically outlined these effects previously but they include hair loss, abdominal pain, mouth / throat irritation with open sores as well as some nausea, vomiting and other GI disturbances that I won't get into.  You're welcome.   What we were not expecting was the prolonged fever and rash over most of her body.  That irritation, combined with the difficulty swallowing food, meds and even water really takes it's toll.  Having said that, Jackie has been a trooper and managed this process as well as can be expected.  We definitely got to a point this week when we were all just holding on as tight as we could and riding the rough days out.

The ongoing fever and rash have been a bit of a quandary for her care team.  With so many new medications and treatments it can be difficult to pin point a cause.  For those who are not familiar with health care or medicine, it usually isn't as simple as running a singular test and having the computer spit out the problem.  It typically involves ruling out as much as you can and then treating for what possibilities are left one at a time.  How a patient responds to certain treatments will then assist in narrowing down the root cause. 

The doctors have removed a few medications that could be the culprits and changed a few others.  They have run all tests to rule out any kind of viral, bacterial and fungal infections.  Last night they started Jackie on IV steroids which have definitely helped.  Her temperature has come down and her rash and associated itching is also starting to wane.

As I have indicated previously, Jackie's cell counts are doing really good.  Better than the team was expecting.  Which is great news overall, but can also be the cause of what is currently happening.  As her new immune system develops, if it is too good, it can actually attack her body and certain organs.  This could also just be Jackie's body's normal response to the transplant.  The steroid will not only help alleviate the fever and rash, but is also used in treating engraphment syndrome which is what I described above.  As described to us, this is self-limiting and responds well to steroids.  If this is indeed the case, once we get through this part, the chances of Jackie relapsing in the future will be significantly lower as this is a good indicator that her new immune system will be strong and this transplant/treatment could even be curative for her.

Until next time...keep those thumbs up and positive energy coming.

Thanks for reading.

Mike