Hi all.  Brenda has asked me to blog for her this evening, not because she's too ill to write, rather because she's too numb to process/recall much of today's events.  Needless to say, today was one of the busiest, most serious days yet in Brenda's recovery.

In addition to lots of meetings with doctors, nurses, chaplain, and social worker, Brenda had an important family meeting.  In attendance were Dr. Hege, Lisa (nurse practioner), Jim, Jim's brother (Tom), and myself.  Brenda's mom listened in from Chicago via speaker phone.

While we didn't get many answers about the exact nature of Brenda's illness  (which we were prepared for), we did get much needed clarity for the options that Brenda and Jim may face, and a "plan of attack" for Brenda's recovery. 

I'm going to keep this blog factual and to the point.  No emotions at this time -- we're all too numb to feel anything right now.

Brenda's official diagnois, as you know, is chronic graft vs host disease of her lungs.  This is an extremely serious condition and only affects less than 5%  of transplant recipients.  This disease came on suddenly and has been extremely aggressive in its pursuit.  Brenda's lung capacity dimished from 80% to 20% in less than 4 weeks time. 

Upon being admitted to the hospital Brenda's treatment team immediately began an intense series of treatments to hold off any more deterioriation.  The list of meds and procedures is too lengthy to mention.  The most significant, and hopeful, of these treatments was a steroid blast of 1000 mg per day for 3 days, followed by steroid maintenance of 50 mg per day indefinitely. 

This treatment has not worked to "cure" Brenda, but may have contributed to her current condition of being "serious/critical, but stable."  It has also contributed to a slew of nasty side effects which include muscle loss (Brenda now weighs 108 lbs), a bloated stomach, bruising, a "moon face," emotional issues, swollen feet, high blood sugar, and a feeling of "being wired."

Another significant factor in the stabilization of Brenda includes consistent injections of morphine.  She currently takes 6 mg of morphine every hour.  This helps her relax, but more importantly lessens the strain on her chest so she can breathe easier.  When she doesn't take the morphine, she experiences labored breathing and finds herself gasping for air.

Be assured that doctors from across the country are aware of Brenda's case and have phoned in their expertise.  The doctors have thrown everything but the kitchen sink at Brenda in the hopes that SOMETHING will work.  They still have two more "tricks up their sleeve" that they are considering.  Both of these treatment options are experimental.

The doctors say that it is possible Brenda's condition will decline.  It's also possible she may gain a little strength.  It's also possible she may remain "stable."  The reason for the unknown is because this disease is so rare -- there is limited data to back up any success rates, etc. 

Most probable for now includes the first two options mentioned above.  For now we have to move forward with her current condition, which is "stable."  When I say stable I mean that Brenda is alive, coherent, and as fiesty as ever.  She is healthy in every way, except for her lungs.  A very possible future for Brenda includes being on oxygen for the rest of her life, and being restricted to a wheelchair and limited activity. 

Brenda and Jim are truly okay with this.  There is much life to be lived in this scenario and Brenda is "up to the challenge" of a new lifestyle, one that includes living downstairs (no climbing of stairs), being assisted by a daily caregiver, visits by an RN 1-2 xper week, photopheris treatments every other week, and limited (yet quality filled) exposure/interaction with the children.  Other considerations are having Brenda meet consistently with a "spiritual advisor," and assistance for the children as they learn to cope with their "new mommy."

Another scenario is one that we don't want to talk about, but have to.  What if Brenda's condition worsens?  Our biggest fear is that there is little leeway for another setback with her lungs.  80% capacity isn't great, but there's wiggle room.  20% capacity?  Not much to play with...  And here's where the meeting got very serious.  Yes, there was a discussion about end of life. 

PLEASE KNOW that is not to say that Brenda is at that point right now, but is a scenario that does have to be looked at, and prepared for, regardless of the timing.  Could she digress in a month?  A year?  10 years?  It truly is a waiting game and it scares the hell out of all of us.  It also leaves us frustrated and anxious, yet we refuse to let that distract us from the task at hand, which is keeping Brenda stable and living a life that's filled with quality and happiness.

Brenda has been amazing through this whole process.  She is accepting her condition.  She's being proactive stating her needs very clearly, and being honest about her limitations.  She fully realizes what she's up against and is taking this day by day.  She has accepted that her role as a parent and wife has changed significantly.  She is HONESTLY okay with this. 

Jim and Brenda's relationship has become stronger than ever and they are approaching this new set of challenges as a true team.  The hospital is offering unwavering support and resources.  The nurses and doctors couldn't be better.

So.... in closure.... while this may be difficult blog to read, we have to face the facts.  Brenda  maintains her sense of humor and will to survive.  She's willing to play the "waiting game" and do everything it takes to get through this.  Unfortunately, this means no more tri-athalons -- unless someone wants to race against her in a fancy motorized scooter?  It's only fitting to end with humor.  Brenda says so!  Please follow Brenda's lead in this.  She needs us and thrives on our support, understanding, and connection.

And now, a quick word from "Bloaty, Bruised, Beautiful Brenda: 

"You can't catch me.  I'm the gingerbread man."  

(yes, she is on morphine but I actually think she knows what she's saying right now...)