GREAT NEWS, WAITING FOR NEWS,THE PATH AHEAD AND SOME REQUESTS

 

First the great news.  Kristina had a lumbar puncture on Wednesday, results are back and no blast cells in the spinal cord.  Really great news. 

The no news is from the BMA test on Tuesday the 13^th.  According to the RN, the Pathologists had not yet ‘resulted it yet’.  So, chalk it up to supply chain issues, but still it’d be nice to know.  Preliminary results from the first BMA test were back the following day.  

Now for the hiccups.  During her first of what turned out to be four appointments for the transplant protocols all was going well until Kristina asked about her life time max for one of the medications in the G-CLAM treatment.  This appeared to catch her doctor by surprise.  Along the lines of ‘oh, yeah, we hadn’t thought about that’.  The rest of the meeting was moot and ended a bit awkwardly.  

A revised protocol was offered during the second meeting.  A new clinical trial was being offered and after listening, Kristina asked, “So just how new is this?”.  They’d check and get back with her.  After she had left and driving away, they called.  It was brand spanking new as in never used before.   Too new for Kristina’s taste. 

On the third visit, they offered two protocols, both involving FLU/MEL (if you want to read more about FLU/MEL, you can google it, but I promise your eyes will glaze over).  One of these was in clinical trial and while it had been in use for a bit, the post-transplant treatment was randomized.  Meaning they effectively flip a coin on which treatment you’ll receive so they can later measure which one worked out better.  After listening to Kristina describe her decision-making process, I have a new found empathy for guinea pigs.  She ended up selecting the more tried and true treatment. 

There wasn’t supposed to be a fourth meeting, but a routine appointment turned into one and her care team challenged her post-transplant coverage plan.  The scope of people, lack of nighttime professional coverage and the lack of a training procedure likely conspired to her medical team’s concern.  Kristina now needs to prove the plan is viable and it’ll work.  

Then the push back on the care giving schedule.  And the uncertainty on the 2^nd BMA test. 

Despite all this, the schedule is proceeding.  Admission to the hospital on July 6^th and transplant on the 11^th. 

There are some pressing issues.  Kristina needs to prove she has a workable, viable, post transplant coverage plan.  Jerda is helping streamline the plan (some of the objections may have been simply visual) but there are some specific asks: 

1. Using the Calendar sign up for  backup slots.  It’ll help make the calendar look more robust. 
2. If you do sign up, you’ll be asked to watch a training video.  Nothing extreme, but there are ‘rules’ on what she should eat, how things can be cooked, and when to call Fred Hutch if certain symptoms appear.  It may seem like a lot of information, but it’s along the lines of a ‘pregnancy diet’ and for the immunosuppressed it becomes sort of a common sense approach to eating.  The care givers will be sent a link and we’ve added a section to the right and a video link for handy reference.
3. The medical care team is pushing Kristina to hire more professional help (what are we, her friends, chopped liver?).  What that boils down to is that subject of which we do not speak.  Funds.  If you are able, please go to the Go Fund Me page on the main blog page.  Contributions are sincerely appreciated.   

In the meantime, diagnostic tests have begun to ensure every organ / body part is ready for what is coming. 

Editors note:  We'll likely be blogging more frequently as the transplant approaches.