The Empty Gas Tank: Days +1 to +3

                 

Entry #9                                                       February 27, 2015

Beautiful view out of the family room on the 16th floor of Prentice.
The setting sun casts sky scraper shadows on the ice on Lake Michigan.  

     The last few days since the transplant are living up to their reputation as being the hardest of them all.  At this point, the full effects of the chemo and rATG are shutting down the "memory" of the old immune system by destroying Dan's white blood cells.   But that's not all, his red blood cells and platelet counts are dropping which have required IV platelets but no transfusions to this point.   As of yesterday, Dan was officially neutropenic, or without a working immune system.  Time to be especially cautious about exposure to anything.  

Absolute Neutrophils is TLTC or too low to count.  Platelets have dropped from
227 million to 16 million in 8 days.  Today's count dipped to 12 by afternoon.

Platelets given at 5:00 this afternoon.

     I can't begin to imagine how Dan feels with all the "gas out of his tank" but he is hanging in there.   He has very little appetite, except for small meals or an occasional smoothie.  His back is causing him pain, probably from the deluxe hospital mattress, and his strength and endurance is at a low point.  All this combined with an inability to sleep much the last couple of nights (preferring not to take the nightmare-producing sleep medication) means he's pretty wiped out.  

     But attitude is everything, and Dan has never been one to let things keep him down. He keeps saying, "I want to get well,"  so he continues to work with the physical therapist to keep his body moving.  The heat packs from the nurses and heating pad I bought at Walgreens have eased the pain in his back, and we've gotten him malts and shakes from Pot Belly's, Ghiradelli's and McDonalds to satisfy the little bit of hunger that he has.  Walking everyday is encouraged but walks require covering up with a blue gown and gloves that act like a sauna.   Dan also has to take extra precautions against falling as internal bleeding is a greater risk at this point.  But in spite of the walker and garb, Dan was told by a nurse today while walking that he was voted "best dressed on the floor" in his flashy pajamas!  Word travels fast on this little floor.  His own nurse came to his room a short time later to tell him the same thing!  

Using all the required garb and equipment
to safely walk the halls.  Voted best dressed on the floor!

     The best news of the past few days has been that he is progressing exactly as expected.   After this morning's visit with the transplant team and the usual questions and answer session, Dr. Burt acknowledged all of Dan's concerns and smiled before he left saying, "Medically speaking, you're doing good.  You'll be getting out of here soon." 

The proverbial daily visitor pass.

View looking north out Dan's window nearing sunset,
just as I was getting ready to walk back to the hotel.

Stem Cell Birthday

Stem Cell Birthday                               Feb. 24, 2015

Entry #8  Kicking CIDP to the Curb

Genesis 1:11English Standard Version 11 And God said, “Let the earth sprout vegetation, plants[a] yielding seed, and fruit trees bearing fruit in which is their seed, each according to its kind, on the earth.” And it was so.

The remaining portion of 9.3 million stem cells near the end of the transplant.

   When I called Dan from the hotel at 6:30 a.m. he was already showered, dressed, and ready for the day.  And why wouldn't he be?  His stem cells which had been harvested almost three weeks ago would be returned to him through an IV at 11:00. 
     Megan, Matt and I got breakfast and then walked the three blocks from the hotel to the hospital.  After going through what had become routine hand washing and sanitizing upon entering the 16th floor, we saw the transplant team moving from room to room.  Entering Dan's room, his attending nurse explained all the premeds that would be given half an hour before the scheduled transplant in preparation for the arrival of his stem cells from the lab.

Kelsey connecting the stem cells to infusion pump.

      In spite of the joy we all felt, there was also a sense of fearful anticipation that accompanies the moment when the longing for a wish to come true meets with reality.  Would the process be successful?  How long would it take to recover from hitting rock bottom of his white blood cell count?  Would there be any reactions to the infusion requiring some intervention?  Every question that was asked out loud was calmly answered by his nurse with assurance that everything would be fine.  

Here they come!  The lab delivers the cells to Room 1671.

    The minutes began to steamroll as the liquid nitrogen container at -192 degrees Celsius was wheeled into the room with their precious cargo.  We had requested a hospital chaplain to join us in prayerful celebration of Dan's stem cell birthday.  A gift bag was also brought to the room filled with all the traditional birthday party goodies from the nurses on the floor.  

    With everything in place, at exactly 11:00, the lab tech took the cells out of the liquid nitrogen using heavy gloves, and put them in a water bath to warm them up.  Eventually they were hung on the IV pole and attached to the infusion pump.  The chaplain gave a blessing for Mr. "Pansky" which added just the right amount of levity to keep the moment light and filled with joyful gratitude for the event  about to take place.  In that moment I think we all had a picture in our minds of our particular memory of the difficulties of the last three years.  Couple that with the relief we all prayed would be afforded Dan and you can imagine the emotional release of the next 20 minutes. 

Blessing the stem cells.

     The cells were run through an mix of IV fluids and at exactly 11:10 we watched the cells (which were surprisingly visible through the line) make their way into the port in Dan's arm.  Oddly enough he didn't want to look at them at all while we all ogled over the wonder of the science involved.  By 11:23 the entire bag of cells was completely empty.  That was it, sweet and simple. The cells were on their way through his blood and eventually finding a new home in his bone marrow.  

Changing color of IV shows the pinkish tint where stem cells
are moving through the line.

     The rest of the day required frequent checks on Dan's vitals with increasing time intervals.  Eventually Dan told the three of us to go have pizza and give him a chance to rest.  I also expect he may have needed some time to be alone.  

Jeremiah 33:6English Standard Version 

6 Behold, I will bring to it health and healing, and I will heal them and reveal to them abundance of prosperity and security.

     

Day -3

Day - 3  

Only one more day of chemo . . .

Dan is toting the pole with all his morning
premeds before the chemo begins.

     As I arrived this morning at the hospital, I had to snap a picture of my flashy husband in his "Lake of the Torches Casino" pjs.  He's become a novelty on the floor for the several pair of silky jammies that he wears.  But before you take a leap and think he's completely crazy, the pajamas have a very functional use.  During his worst days, when Dan had the least mobility, he realized that the silkiness made it easier for him to move.  Rolling over in bed was even a challenge, but wearing these made a difference.

     My routine has been taking the shuttle from the Residence Inn around 8:30 or 9:00 each morning and getting to the hospital in time to see the doctors when they make their daily stop.  They have to check Dan's EKG, review his blood panel results, and sign off on the day's chemo routine.  Once approved, the premeds are given followed by two hours of chemo, and then a slow drip of rATG over the next 10 hours.  So far Dan has toughed out the last several days experiencing increasing fatigue and loss of appetite, both the norm for his regimen.    
  
     On the positive side, Dan has noticed a slight improvement in his hands and face.  The numbness on the left side of his face is reduced and even though his hands are still numb, he feels more flexibility than he's felt in a while.   The docs say some patients notice slight changes early due to the chemo.    

     Once he gets through the day, there will only one more day of chemo and two days of rATG.  Then we will be at Day 0.  The transplant should occur at about 10:00 AM.  Megan and Matt will both be here for what we hope to be the event that changes the course of this disease.  Amen to that!

Here it comes, with a smile from Emily.

Cheri spent hours coming up with this
novel gift.  Can you guess what it represents?

Counting Down

Counting Down  

Entry #6                                                   February 19, 2015

A series of greeting cards labeled for
each day of hospitalization.

     When Dan was diagnosed with CIDP in 2011,  Megan started the tradition of writing a letter to her Dad each time he had to go for an IVIG infusion.  Back then, it meant one letter per month.  We took turns writing letters filled with encouragement, humor, memories, or any topic that was on our mind.  We'd quietly slip the letter into the blue bag he took to the Cancer Center for his 8 hour infusion.  Sadly we weren't able to keep pace when the frequency of treatments increased to weekly or multiple times per week.  During this hospital stay, I've taken from that idea and made a series of 18 cards into which I put greetings and well wishes from family and friends.  

Couldn't possibly leave home without the
pictures of grand dogs, Kaiser and Luca.

      The days of the process are numbered -6, -5, -4, -3, -2, -1, for the days leading up to the stem cell transplant.  The 0 day is the transplant day itself.  The days following the day Dan gets his stem cells back are labeled  +1, +2, +3 and so on.  Today is the second day, or Day -5, in Dan's hospitalization.  He has had two days of chemo, and today an immune suppressant drug named rATG was added.  So far he's tolerated everything fine, with no side effects.  We know everyone reacts differently, but the protocol that includes plenty of meds to precede the chemo has worked to keep him comfortable.  We are aware that the greatest side effects are likely to come right around transplant day when his white blood cell count is pretty much nil.
     Dr. Burt and his team have been on the floor each morning to monitor the process for each of the current transplant patients.  Some are on the up swing of their transplant whereas Dan and a few new patients admitted today are just getting underway.  The best part is the spirit on

Sitting in the Hugh Heffner PJ's while
the IV drips.

the floor where patients and families all know the prayers invested in having a successful outcome.  We are all well aware of the toll that each autoimmune disease has taken on them, bringing all to this point in their battle.           
     It is abundantly clear that if all goes according to plan, their lives will be incredibly changed for the better.  And to that point, Dan will never need another letter written to accompany him to an infusion.    

     

Taking a walk around the floor for exercise with
Joe, another of Dr. Burt's patients.  Seventeen laps
equals one mile!

Stem Cell Harvest - Entry #5

Stem Cell Harvest                        Feb. 5, 2015

Entry 5

     Last year at Dan's dad's request, we planted and harvested scads of tomatoes from Grandpa's 328 plants.  At times I felt there were "millions" of them, so many we couldn't (and didn't) pick them all.  Fast forward to today, and Dan has participated a miraculous harvest of his own.

     Today was the culmination of 10 days of the mobilization of his stem cells.  After morning blood work, and a 40 minute procedure in the interventional radiology department to insert a catheter into his jugular vein, we were off to return to the Northwestern Blood Center.   We weren't alone in this endeavor as there were 3 other of Dr. Burt's transplant patients on the same timeline as Dan.  It's uncanny the kinship that is felt when hearing the story of each of them and the course that brought them to participate in the stem cell harvest and transplant trial.



Hoping this 26 sec. video gives a hint of the
sights and sounds of the incredible machine.


    Dan was hooked up to an amazing machine that took a cup of blood from his vein and ran it through a centrifuge that separated plasma and stem cells from the blood.  Once processed, each was pumped into their respective collection bags and then the blood was rewarmed and returned back to the vein.  This was repeated many times over the course of the next 4 hours until 15 liters of blood had been processed.  In the end,  the bag of stem cells and plasma was picked up by the lab and taken for an official count.

Collection bags of plasma (left) and stem
cells (right).

     During the process Dan was lucky to have arranged for a visit with another CIDP patient who was in Chicago for her 6 month post transplant appointment.  Talking with Kasia was comforting as she related her transplant story.   She answered many of our questions and addressed concerns but mostly provided us with many words of encouragement and reassurance.    God has blessed her with a positive outcome as she has not needed any IVIG treatments since her transplant.

    Based on the morning blood count, Dan's nurse said it was estimated that he would have 12 million cells, far above the required 2 million to proceed with the stem cell transplant.  If there were fewer than 2 million, Dan would have to return the next day to undergo the process again.  The official count after collection would take two hours so we would need to wait for those numbers as well as his remaining platelet count.   Not until both were affirmed would the catheter be taken out.

Dan's blood center nurse, Buk was actually a
former coworker of my nephew Eric at the Dundee
Blood Center.  What a small world!

    The end result was a happy one, reaching 9.3 million cells harvested and sending us on our way after the stitches and catheter were removed and new dressing put over the incision.  We're going home!

Thanks for taking this photo, Tim!  It's been
a day of incredible blessings!

Two Shots a Day

Two Shots a Day   Entry#4                                  February 3, 2015

Syringes from the hospital pharmacy to
be injected on the 6 days prior to the stem
cell harvest.

     Dan has entered the Neupogen routine of his mobilization process.   Not to be confused with the shots one would enjoy while partying at Matt and Amanda's sports bar, these shots are given at 7:00 a.m. for each of 6 days.  The purpose is to stimulate his stem cells to grow and find their way from the bone marrow to his peripheral blood.  The end result will hopefully be the harvest of millions of cells on Thursday.

      Because the syringes have to be refrigerated, Dan removes them an hour early to let the chill wear off.  After I've gotten coffee for both of us from the lobby, we wait until 7 when it's time for me to inject them into Dan's stomach.  I'll admit the first day I was a bit nervous and tentative, but the needles are so fine that Dan hasn't felt much discomfort from them at all.  Even Matt had the honor of giving the injections one day.

     While waiting for the harvest day we've been occupying ourselves with daily walks, lunches out, and wonderful visits and calls from friends and family.  Bunny, Cheri, Tim, Kris and Matt have all been here to visit. Megan, Joe, and the Klepels have been solid supports at home.  Joe even "weathered" the Sunday blizzard to pick me up from the train station and get me home for Grandpa's 98th birthday.  

     

We made it to Chili's for lunch dodging the falling
ice from the buildings.  Cherry Fanta is Dan's beverage
of choice.

     Dan has finished the fourth day of shots and according to Dr. Burt's nurse, the side effects of bone pain and nausea could potentially appear today.  I'm happy to say that up to this point, so far so good.  Lab work shows his blood count is right where they want it to be, and there are only two more days until the harvest. The one issue Dan has dealt with so far has been fatigue, which is totally normal.  He has prescriptions on hand in the event the other side effects materialize, but hopefully not.  
     Dan reminds me that there are only 38 more hours until harvest time begins!  Go Stemmies!