The Road to "Mobilization"

On the Move                                                                                          January 27, 2015

Looking east to Lake Michigan out the window
of the fifteenth floor. 

      All the preliminary appointments and tests are completed, and Dan is at the official start of his stem cell transplant.  I think he's been waiting for this day since we were informed that there even was such a procedure in clinical trials for CIDP.  That news was immediately followed by the possibility of him being a potential candidate.  In his own words, it was the "hand of God" that brought him to this point through a series of unforeseen events.

       Mobilization is the 10 day process of moving the stem cells from the bone marrow and into the blood stream.   In order to get this started, Dan was admitted to the 15th floor at Northwestern (Prentice) Hospital.  He was given chemotherapy and loads of IV fluids to remain hydrated and ultimately flush the chemo out of his body over 24 hours.  

     With all the medications given to him in advance of the chemo to ward off nausea and other side effects, he managed to endure the treatment with only a headache. Thankfully, additional pain meds helped overcome that as well.  The bigger issue of his stay was dealing with lack of a good night's sleep resulting from IV eclusion in the line.  Every 15 minutes or so, the infusion pump kept beeping.  No surprise that he planned to take an afternoon nap after being discharged.

Entry to the hospital floor requires going through a double barrier of doors.
Extra precautions are taken to prevent infections where many
patients are immune compromised..  Nurses constantly put on new
gowns upon entering the room and everyone must disinfect
hands upon entering and exiting every room.  

      So the next days will hopefully be uneventful as he recovers from this first step.  To continue through the process, he will receive self-administered injections as well as a variety of medications, scheduled lab draws, and precautions to keep him comfortable and healthy.   

Gail, Dan's nurse, getting ready to remove the IV before
being discharged.

     At the end of the 10 days, his body will have been prepared to undergo the harvest of stem cells from his bloodstream.  I wonder how many this process will produce.  Two million are necessary but the more they harvest, the more he'll get back.  They will be the genesis of his new and healthy immune system.

The Waiting Game

Dan was introduced to the room and machine that would be used
to harvest his stem cells.

     We were supposed to be home a day ago, but things never work out exactly as planned.

      Dan went through a second round of tests in preparation for the transplant.  These included more lab tests,  CT scans, EKG, echocardiogram, chest X-ray, vein check, etc.  You get the idea. . . no problems until the echo.  Some parts of his heart weren't visible, so contrast was added through an IV that took over 30 minutes to insert.  While in the waiting area, I wondered if he'd ever get done.




   Dan's final appt. was supposed to be Wed.
at 1:00 with Dr. Burt.  But upon entering his

Count 'em, 19!

office, his nurse told us we wouldn't be going home.  Two issues would require more tests and an appointment with Dr. Freed, a cardiologist before Dan would be cleared to undergo the transplant.  Upon hearing this news Dan's head rolled back against the wall in a look of frustration I hadn't seen since 2011in the office of a clueless neurologist.  Paula reassured us that circumstances such as these are not unusual and not to stress out about the delay.


     So we trudged back to the hotel with our suitcases after Dan had undergone two additional CT scans scheduled for late in the afternoon.  We'd have to wait until the morning to find out when we would meet with the cardiologist.  Not a fun night and an incredibly slow morning.  Dan's phone finally rang at 10:30 and were told that we would need to be back at Northwestern for a 1:00 appointment.

     After spending 45 minutes with the doctor, he gave us an optimistic but conditional assessment.  We left the 19th floor and headed to the parking ramp to head home.  Within an hour the waiting was over as we finally got the news we were waiting to hear in three separate phone calls:  the CT scans were normal, Dr. Burt gave his approval to proceed, and Dr. Freed's consultation resulted in clearing Dan for the stem cell transplant.

View from the 13th floor

     I'll attribute the timely resolution to the incredible thoroughness of the staff at Northwestern and their ability to resolve issues when a wrench is thrown in the path.  I'll also say the pecan, cherry, and chocolate kringles we brought to Dr. Burt, Paula, and his staff didn't hurt!







   

January 12, 2015

Big as the Sky - Millions of Cells  

And we begin . .

     When Megan and Matt were little, we always ended our evening prayers with the line, “I love you as big as the sky,” creating the analogy to the immenseness of the sky. Likewise there is no limit to the love and blessings we have received from above, as well as those we find in each other through our faith. So as we begin this journey to Northwestern Memorial Hospital in Chicago, I feel like the sky has been opened to reveal an incredible opportunity.

     Three years ago Dan was diagnosed with CIDP, and initially his wonderful doctor kept him ahead of the damage the disease was doing to his nerve linings. But after 2 years, the disease began winning and his treatments were increased from monthly to weekly IVIG infusions.  He endured a roller coaster of increasing and decreasing mobility, from walking easily to times to that of complete paralysis. Little did we know that our distress in learning that his Froedtert doctor was leaving the Midwest would result in steering us toward Northwestern and the possibility of applying to become a participant in a promising clinical trial.

     Our prayers have been answered as Dan has been included in Hematopoietic Stem Cell Transplant study.  Thankfully our insurance has given approval and Dan schedule is finalized for the next two months.  The goal is to “reset” his immune system so it no longer attacks his tissue and allows his nerves to heal without requiring massive doses of IVIG infusions.