How Full is Your Glass?

Blog #15                                                                                                                 August 24, 2015

How Full is Your Glass?

Enjoying mango daiquiris from a FULL
glass on Arbutus Lake.

     Today marks the 6 month anniversary of Dan's stem cell transplant.  At this time last year, Dan had been spiraling through monthly CIDP relapses.  Having been on monthly treatments of 180 gr., he never quite made it to the next treatment without a crash from which he never fully recovered.  He was hospitalized several times, and infusions became even more frequent and of larger doses.  

     This summer has been a completely different story.  As Dan travels the road toward recovery with a list of goals yet to be realized, I'd still say the positives far outweigh the alternatives.   Let's just say that instead of a glass half empty, I'll describe his glass now as half full.

     A few weeks ago, we traveled to Chicago for the routine blood work and EMG.  Also scheduled were appointments with Dr. Burt and Dr. Allen.  The appointment with Dr. Burt was fairly short and sweet. General questions about his strength and mobility and the typical questionnaires.  The best news was being cleared of some post-transplant medications and released from any of the typical restrictions.  Dr. Allen on the other hand did a much more thorough physical exam including part of the EMG.  All signs showed increasing strength and reducing numbness in limbs.  He even found faint reflexes which haven't been evident for years.  The biggest disappointment to us and Dr. Allen as well is Dan's reliance on weekly IVig infusions.  The initial attempt at a taper had failed so Dr. Allen has recommended that instead of lengthening the interval between infusions, he suggested Dan continue weekly infusion but reduce 5 grams of IVig each month.  We're praying that this slower taper, along with the healing expected over time, will prove to be the key.   

New hair is same color but lots of curls!

     A week after Chicago we met with at Dan's local neurologist who has been supportive of Dan's participation in Dr. Burts study.  His was very pleased with the strength and feeling regained since his appointment three months ago.  He was receptive to Dr. Allen's recommendations for taper.   He acknowledged the same thing spoken by several doctors, that Dan's body responds so well to IVig infusions.   Initially in his CIDP diagnosis there was much relief provided but ultimately became less effective.  It is Dr. Figueroa's opinion that HSCT has once again made his body receptive to the healing effect of IVig.

     Through out this experience, it has become even more apparent that every patient is different in their recovery.  In spite of not realizing all our dreams for the six month point, I'd say Dan has had a great result thus far.  Our glass has been more than half full.  Dan is walking unassisted with minimal balance issues.  His stamina is improved and the feeling in hands and fingers are better with no spasticity.  Yesterday while balancing a stack of dishes and walking to the sink, I reminisced as to how that would have been impossible 3 months ago.  Dan is busy at two part time jobs and can enjoy getting his hands into dirt and plants in the garden.  He's regained all the independence that we so desperately prayed for at the start of the process.  

     There can't be a better example of our joy than the day we attended Germanfest.   We drank beer, cheered the dachshund races, and watched Dan and Megan take a spin on the dance floor.  One can only consider where we'll be at one year.  Our prayers continue for even more healing and dancing!

Roll out the barrel!

The Difference a Month Makes!

The Difference a Month Makes!

3 Months Post HSCT                        May 27, 2015

     Do you know the reluctance one feels to share a wish or a prayer?  Too often there is the fear of disappointment, should it not be realized.  That was the case for me when I last blogged about Dan's progress a month ago.   I had been hopeful that by this writing, around Memorial Day, Dan would be able to walk unassisted and be driving his car.  What a difference a month makes!  He beat that timeline by at least 3 weeks!

     At the start of Dan's third month post transplant, he began to show marked improvement in balance and strength.  One day his physical therapist suggested that he consider relying less on the walker and practice with the cane.   Before you knew it, the walker was relegated to the closet and he walked with a cane or completely unassisted around the house.  This ability alone gave him the independence to get up and out of bed on his own and get to a standing position from just about any chair in the house.   A couple of weeks ago, he got clearance from Kaitlyn to return to his part time job working on the nursery lot at Mileager's.  He was cautioned to take it easy, (and no hands in dirt!) but has done well on his feet for his two days of work each week, using a cane only as necessary.   

Dan is working again a Mileager's on the
nursery lot.  (Thanks for the photo Mike S.!)

     The other huge improvement has been the restored feeling in Dan's hands, particularly his left hand.  Though still not close to normal, the improved sense of touch has made it possible for Dan to handle buttons, zippers, and belts!  Imagine having to plan your day away from home around whether you need to wear clothes with elastic waistbands because you can't feel your hands!  Even managing elastic was no small task.  Needless to say, we've shared a few hilarious moments in men's bathrooms when required to be away from home.  


     The greatest pleasure I have is when I notice even the smallest changes in things that had been impossible for Dan to do in the previous months.   Even lifting a coffee pot full of water to fill the coffee maker in the morning or walk outside to get the mail or newspaper.  He has no problem drinking out of a normal glass and no longer needs lightweight plastic with a large handle filled only half full.  No more need to "leap frog" something he needs from resting place to resting place in order to get it moved.  His arms and hands are much stronger now and he has little trouble managing general household tasks.  This past Sunday was the first time he walked up the steps into church without using the elevator and we went up to communion together instead of having the pastor come to him in the pew.   Amen!

Walking up the steps outside and then several
times more inside at church.

      Dan says he's now feeling similar to when our daughter and son-in-law were married last October.   He had been on massive Ivig doses to give him the ability to walk Megan down the aisle, but then gradually weakened continually from November up to the transplant in February.  So I guess one could say this is a marked improvement but certainly not what we expect will be the end of improvements.  For one, he continues physical and occupational therapy to build strength and to reach the goal of climbing a flight of stairs.  His infusion schedule is still 55 gr. weekly, the same dose that he received prior to HSCT but even that couldn't keep his CIDP even close to remission.   There must be something else at work here as that same dose is simultaneously paired with great improvement in his condition.  Soon to come, he hopes, is lengthening the time between infusions and ultimately weaning him off them completely.     

Yes, that is a good amount of dark hair!  Not
sure how long that's going to last!

      Last summer was full of terrible relapses and impossible predicaments.  Last July, great friends came to stay with us unaware that they would be needed to help me get Dan in and out of the house and car to get to the doctor or infusions while they were here.  The same friends will be returning again for a visit in about 3 weeks, and we're overjoyed that this visit will be so different.   No wheelchair necessary, but our time together will be filled with happy stories about the improvements in Dan's condition since HSCT.  

     So with optimism we look forward to the coming months of summer and continued growth, not limited to the burgeoning head of hair now covering his formerly bald head!  I've got a new set of hopes and prayers for the next three months including greeting Dr. Burt at Dan's six month check up with even more reasons for a well deserved thank you!   

Tulips that Dan planted last fall just for the purpose of brightening
the front of the house in the spring.  

Two Months Post Transplant

 Two months after HSCT                April 24, 2015

Limping To and From the Finish Line

   
       Today marks the two month point since Dan's stem cell transplant.  As I've read the blogs of previous CIDP patients who have gone through this process, I recognize pieces that are similar to Dan's experience, but nothing remotely the same.

     In a nutshell, Dan "limped" to the transplant.  What I mean by that is that he was weakening prior to the transplant, even having weekly IVig doses of 55 gr.    Add that condition to the protocol of chemo and rATG,  and he went into a full CIDP relapse, or as he says "crash."  And when he crashes, it is within 48 hours.  So at day +5 he was reduced to total immobility with zero feeling in both feet and hands.  He received a 5 day full loading dose of IVig while in Prentice and since has required additional treatments since coming home.  Unfortunately, we've been struggling with communication and cooperation between his local neurologist and the team at Northwestern, but our hope now is that Dan is finally receiving an agreed upon treatment plan that we hope leads to reducing the inflammation and then weaning him off of the IVig.  Many prayers of thanks are in order for getting us to this point but we continue to pray that the intended goal will be realized.  We know this is a long recovery, but as expressed by others before us, the waiting and uncertainty requires incredible faith in God and the process.

Luca and Kaiser are the best medicine!  No more bald head if you
catch the right light!

     One thing I know for sure is that Dr. Burt, Kaitlyn, and the transplant team are staying on top of things as we continue therapy and required blood work, and when we pose frequent questions of them.  Dr. Burt even called Dan three times on one occasion to resolve an issue and there is no doubt in our minds that he is "hands on" with his patients.  When he said in the past that no two CIDP patients are quite the same, we can only know that he has seen it all.   Even though Dan's experience isn't quite what we expected, we're holding on to Dr. Burt's optimism for an eventual successful outcome.

      So Dan moves forward with the hard work of recovery.  He still has no feeling in his hands and limited feeling in his feet, though that has been slowly improving.  Strength in his legs is returning but upper body strength is still lagging.  Both physical therapist and occupational therapist note improvements as he attends two to three sessions of each week.  He is now able to enter the house by getting up the two front steps by himself.  When the wind isn't blowing us away, Dan is able to walk up the hill of our subdivision using his walker and back for exercise on the days off of therapy.  He no longer requires help to get up out of a chair and isn't limited to sitting in chairs of certain height with sturdy arms.  He's even tempted fate once to walk unassisted across the kitchen for a cookie just out of the oven.  Now that's motivation!

Dressed and ready for therapy with a shirt
from Siesta Key.  Hoping next year to be there
for the Siesta Fiesta Art show.

     If the transplant was the finish line, then I guess it's safe to say our lives are focused on moving from that finish line and on to the next contest which is recovery.   With modifications to routine, we've been able to go to a movie, enjoy family and friends, and frequently get out to eat a few times a week.  A couple days ago Dan looked in the mirror and noted something fuzzy growing on his scalp.  I even got out a ruler to let him know it was nearing a quarter inch long!  So some things are beginning to bare some resemblance to life pre-transplant, no pun intended!

     

                  


       There's nothing better than watching things sprout and grow in the spring.  Hoping that he would have the transplant over the winter, Dan planted hundreds of bulbs last fall to add spring color to the  landscaping in front of our house.  Now that we're home, we've seen tulips and daffodils poke through the soil and are awaiting their colorful blooms.   Adding other perennials by following Dan's expertise, I've become his hands in planting lilies, dahlias, and hasta.  (No hands in dirt allowed!)  So while our plants are establishing roots and growing stronger, I expect the same will occur with the linings of Dan's nerves.  Can't think of a better way to see evidence of his body responding to HSCT! 

Escaping the Rehabilitation Institute of Chicago

Entry #12  Escaping the RIC                     March 19, 2015

8th Floor Rehabilitation Institute of Chicago

    We've now spent two full weeks at the RIC and even though the team assessment initially recommended that Dan stay here for three weeks, we've opted for two weeks of intensive therapy and then head for home.  In Dan's opinion there are three components to healing:  therapy, rest, and good food.  There is no doubt that this facility has some of the best therapy around, but it sure is lacking in the other two elements.  We are now packing to leave for home where therapy is scheduled to continue on an outpatient basis at Wheaton in Franklin.  It feels too good to be true!

We missed the first visit from Dr. Burt and team when
partying on the town one night in Chicago.

     Over these last two weeks Dan has worked REALLY HARD!  He's been distinguished as the patient on the floor that wants and would benefit from extra physical therapy.  So every time it's been offered, he's accepted.   He pushes himself to make the most of the time and proves it by working up a good sweat.   I can't begin to count the number of times I've given him a cool wet washcloth for him to wipe off!  The physical therapy has moved him from initially being able to briefly stand on cramping legs to walking with assistance around the 8th floor three times without stopping.  He hasn't regained any feeling in his hands and feet as of yet, so walking, even though assisted, takes a lot of concentration.  Looking back to the blogs posted by previous stem cell transplant patients reminds both of us that  many of the same struggles he faces have also been experienced by others.   Dr. Burt also reminds us that each person with CIDP can also be unique in recovery.      

     We're now ready to meet the next challenges head on, taking with us all the new things we've learned in the past two weeks:   1) Holly runs a challenging PT class! 2)  Escaping the RIC every night for supper is a must to get a decent meal and clear the head.  3)  Meal vouchers for the cafeteria may not be used to buy Dove Bars! 4) Dorothy Gale was right, "There's no place like home!"

     They say time flies when you're having fun.  The last month felt like a year.  Here's to experiencing lots of healing in the next months as spring begins and probably flies by once we're back at home.  It's a perfect time to make plans for the perennial gardens, watch the trees bud out, and see the bulbs push through the soil.  Oh, and then there's is the start of Dan's favorite spring sport!  Go Brewers!

Entry #11 Step by Step

Entry # 11  Step by Step                                             March 12, 2015

Looking forward to taking steps on the beach on Siesta Key.

     Dan was transferred to the Rehabilitation Institute of Chicago a week ago.  But even though his white blood cell count indicated his stem cells had started doing their job, it was still obvious that there was a major need for Dan to regain strength and flexibility.  Obviously it was a huge disappointment not to be heading home but knowing therapy was a necessity, and having heard the great reputation of RIC, we secured insurance approval, and Dan was transported via medical transport within a few hours.

Dr. Burt and his fabulous team:  Amy APN, Allison APN, Dr. Burt, Dr. Han, and Kaitlyn PA-C

Packed and ready to go to RIC.

     Getting admitted at RIC was a bit of a shock.  It was Friday evening and Dan said it was like a step back into his college days.  To say that his care at Prentice was incomparable, where the nurses and caregivers spoiled us with their attentiveness, was an understatement.  He would now reside in a double room that was smaller than a postcard stamp.  In his opinion, sharing a room with another patient didn't come close to complying with HIPPA laws, and it became all the more absurd hour by hour.   Lack of privacy and claustrophobia was unbearable in a room where beds, lifts, equipment, and wheelchairs constantly collided.  Nurses and nursing assistants worked in conditions that made it impossible to be efficient.  Thankfully the nurse manager recognized the issues Dan faced and he was moved a couple days later to a room double the size for two patients.

Physical therapy session with Ryan on Tuesday.

Standing and reaching, now Dan will be ready to unload the dishwasher when
we get home!

Holly and the physical therapy staff run tough sessions, but they've gotten Dan to his feet unassisted in
only 5 days.

    But lest you think we only have complaints, there are two highlights of this current residency.  First, the therapy is great.  Dan is making slow but steady progress with physical and occupational therapy for a total of 3 hours each day.  Today alone he far exceeded yesterday's accomplishments on treadmill and "sit to stand" strength.  Therein lies the sole reason he is hanging in there to endure the accommodations.  Step by step, day by day, he's gone from absolute immobility seven days ago to walking all the way around the floor with a physical therapist at his side.  There is a way to go, but he knows his goal is to get to the point where he can safely manage at home and then continue with outpatient therapy in Racine.  The second highlight is getting a daily pass out of this place!  The food is unappetizing so we've made it part of the daily routine to go out for supper after therapy is done.  Using the wheelchair, we "roll" to a restaurant in the vicinity of Northwestern.  We've been to Blaze Pizza, Epic Burger, TGIFridays, M Burger and the Corner Bakery.  It's the one practice that helps with the emotional side of healing by escaping to get fresh air and finding an alternative to the institutional food served to patients.

Construction continues on the new Rehabilitation Institute of Chicago just across the field.
All rooms will be singles with state of the art therapy facilities.  

     I pray the prolonged time away from home is nearly over.  A conversation with an RIC representative yesterday morning indicated we're on target to get home by the end of next week, at the latest.  They are already working on communicating his therapy needs to Wheaton where he'll continue on an outpatient basis.  Then Dan can celebrate his homecoming with a new immune system, a weak brandy old fashioned, and restful sleep in his own bed.    Grandpa, Megan, and Matt will be celebrating too.   

Taking a Detour

   

Looking forward to casual days like these on the lake.

                                                                                                                           March 5, 2015            

Entry 10:  Day +9  and an Unplanned Detour

     My phone rang earlier than usual this morning.  Dan must have had help to call me because his fingers and hands have been rendered useless by a CIDP flare, so I knew something was up.  Sure enough, it was Dan with the good news that this morning's lab work indicated an increase in his white blood cell count.  Praise the Lord!

No matter what situation comes your way, remember that God is 

sovereign. God is in control! God is bigger than any circumstance 

in our life. God can work everything together for our good  And we 

know that all things work together for good for those who love God, 

who are called according to his purpose (Romans 8:28).

     I've not posted a blog for over a week because Dan has been through a terribly difficult week.  He began to feel what limited strength he had begin to deteriorate soon after the transplant, ultimately resulting in being unable to walk, stand, and finally having no feeling in hands and feet.  He couldn't even use the TV remote, computer, or phone.  I guess it's an understatement to say we panicked when Dr. Burt ordered the start of IVIG infusions.  Dan was praying that he would never need them again, but knowing his body, he welcomed the medicine that has kept him mobile over the last three years.

     Initially my concern was why the flare even occurred considering he no longer has a functioning immune system to attack his nerve linings.  But Kaitlyn, Dr. Burt's PA, explained that it's possible for there to be inflammation from the chemo and drugs causing such a relapse and not to worry.  It doesn't mean that the transplant didn't work.    A "crash" such as this has happened before to other CIDP stem cell transplant patients and will just requires a slow weaning from IVIG treatments.  I pray that all the assurances from the transplant team materialize on the road to recovery ahead.

     In the meantime, Dan has had frequent blood draws monitoring his progress.  Every day he receives antibiotics and other meds including anti-fungal, anti-viral, blood pressure, potassium and many more I can't even count.  As needed, he's also received units of blood and/or platelets to keep other levels safe.  Keeping him stable in that regard has been a success, but as far as mobility, he still has not rebounded.   That fact prompted a conversation yesterday regarding Dr. Burt's recommendation that Dan transfer to the Rehabilitation Institute of Chicago (RIC) for a short but intensive therapy stay once he reaches levels in his white blood cell counts indicating he is ready to be discharged.  Within a couple hours of that conversation, there were two doctors from the Institute visiting Dan's room and assessing his condition.   Things sure happen here in a hurry !

Entry to the transplant floor requires a stop for hand washing
between two sets of air locked doors.  (I guess my morning
cup of coffee for Dan made it into the photo!)  

The entry sign reads "Special Patient Care Environment."

     

     So our tentative plan now includes an unexpected detour.  Considering that Dan's white blood cells are beginning to increase, he will be scheduled to have a fifth day of IVIG tomorrow and as long as all other counts remain stable, Dan will be moved to the RIC for acute inpatient therapy.  Anticipating that this will occur on Saturday, Kaitlyn dropped off an envelope this morning detailing discharge instructions.  I'd say we're heading in the right direction.  Praying for no other detours along the way.

My nook in the hotel room for watching TV, typing blogs,
and playing mindless games at night.   

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!