If at First You Don't Succeed . . .

If at First You Don't Succeed . . . .

Blog # 17:  Second HSCT Birthday - February 24, 2017

Happy Birthday Danny!  Two years of success following
your stem cell transplant!

    Never doubt the fact that HSCT often requires two full years of recovery!   

     The last entry to this blog was in February of 2016 and it marked the one year anniversary of my husband Dan's stem cell transplant at Chicago Northwestern with Dr. Richard Burt.  In brief, his recovery at the one year mark showed much greater mobility and a steady but slow improvement in strength.  But there persisted two major disappointment at that time.  One was not having been able to completely get off of IVig infusions.  And because of that fact, Dr. Allen speculated that the transplant was not successful for Dan's CIDP.

Nothing like a couple hours of using the rototiller to
demonstrate recovered strength. 

     When Dan left Prentice in March of 2015, he was in a full CIDP flare, requiring a loading dose of IVig, and several more to follow in the next few months.  The dreaded reality of an unsuccessful outcome was front and center.  In spite of the need for a transfer to the Rehab Institute of Chicago and the need to regain strength and relearn how to walk, Dr. Burt kept reassuring us that it didn't mean the transplant was a failure.  Some patients just couldn't "stop cold turkey," he reminded us.  So Dan's next year included not one, but two failed attempts to wean off of the drugs.  Even so, at the one year mark, Dr. Allen recommended that he attempt to taper at an even slower rate.  His words weren't particularly optimistic.  But for the next 9 months we followed his advice and Dan's infusions dropped 5 grams every 8 weeks, going from 30 weekly to 5 weekly by November.  

    

Sporting a favorite t-shirt and a
full head of hair a year and a half
post transplant.

      Can you imagine how we walked on eggshells wondering what would happen when that final week of 5 grams was complete?  Would he really be able to remain off of IVig?  Even his local neurologist was cautious, but confident, characterizing the taper as "slowly walking to the door and turning the doorknob without waking up the immune system."

    By Thanksgiving Day, Dan had been off of IVig for 10 days and like all the months of tapering, he showed no signs of weakness, in fact his strength in legs and arms had improved.  As the days and months passed, his condition remained stable and we began to look forward to his 2 year check up in Chicago.  Well, at least I did.  

     Once in Chicago in early February, on the morning of the scheduled EMG and both appointments with the doctors, Dan was still fearful of unfavorable results from his blood work and neurological testing.  I tried to be reassuring before leaving the hotel room, but I'm not sure he was buying it.  Two years is a long time to wait for success and in spite of Dan's positive outlook and faith, there still remained that fear that comes with having an unpredictable disease. 

Pilot to CoPilot!
Flying above the Alaskan Range on a trip
to Denali last summer and a landing on a glacier!

     By the end of that day, our experience confirmed once again the power of prayer.  The appointments went well, the tests supported improvement and our conversation with Dr. Allen this time included the words, "You are in medication free remission!"  Needless to say, our prayers continue daily to be lifted up with thanks to a loving God.  Life is now much more flexible as Dan is no longer tied to a weekly schedule of infusions with the visiting nurse.  We've been able to enjoy travel, hobbies, and friends with much less uncertainty. And though Dan still deals with a tremor and nerve pain or discomfort, (which he describes as"buzzing") he remains physically strong, mobile and is able to work part time seasonally. 

      Dr. Burt was right all along.  No matter how severe the CIDP flare following the transplant, it doesn't mean it's the end of the road to recovery.  Dan now holds a notable record among patients in Dr. Burt's clinical trial.  He is the CIDP patient taking the longest, a full 21 months, to be finally free of all medications. So if at first you don't succeed . . . . 

One Year- A Mixed Bag

 One Year Post Transplant - A Mixed Bag

      Blog #16  -  February 24, 2016

      Today is a memorable day,  February 24, the one year anniversary of Dan's stem cell birthday!   As expected, it's been a year of roller coaster recovery and improvement, but notable for its significant difference from his condition last year.

     It was a great relief to celebrate the beginning of 2016.  This past year has been a challenge, both medically and emotionally.  After successful recovery from Dan's HSCT, he and I enjoyed a great summer and early fall with trips to Mt. Rushmore and New England.   But as soon as we returned home, our quiet summer was sadly turned upside down with the passing of two family members.  The remainder of the year was an endless stream of tasks revolving around estates and loss.  Is it any wonder we looked forward to the start of a new year?  
      As has been the case with several CIDP patients, Dan was one of those that still required infusions after leaving Northwestern.  That was a huge disappointment for Dan.  But following his six month appointment with Dr. Burt and Dr. Allen, he continued to taper his weekly Ivig infusions with success.  Having been on a weekly dose of 55 gr. last May, he now receives weekly infusions of 25 grams.  All other immune suppressant prescriptions have been discontinued and he is only taking 5mg of prednisone, compared to 60 mg. prior to the transplant.  Over the summer and fall he enjoyed working at two part time jobs, had few limitations in mobility, but day to day seemed to have returned to life as usual.  That's the good news.  But then came the point where the story takes a not so positive turn.  

This is the goofiest "granddog" and bud!  Not sure who is
benefitting more from the connection between the two.

     We recently returned from Chicago where Dan completed the one year tests and doctors appointments.  Like every other visit, there was the excitement and anxiety in being a part of a study.  This time Dr. Burt's tests and reports were fine, suggesting that Dan may yet be able to taper off of Ivig in the months ahead.  After the next day's testing, Dr. Allen's impressions were quite different.  First of all, the EMG showed little if any improvement, suggesting that there had been no remyelinating of Dan's nerves.   When Dan reported that his fingers had become more numb since early December, Dr. Allen suspected that this was a sign of the presence of active disease and that the transplant had not been successful for Dan.  In spite of the improvements in his condition and reduction of medications over the last year, the future is still filled with questions and uncertainty.  But then, I guess, when isn't it?
     So it is with some amount of hesitation that I pressed ahead to write this one year blog.   It's never easy when some amount of hope has been squashed, but then I chide myself when I suppose maybe Dr. Allen doesn't know what he's talking about!  The brilliant hipster doctor, as we refer to him, may have gotten this one wrong! I laugh to think about our question directed to him about why the transplant might not have worked, and Dr. Allen's smiled along with his answer, "That's what we're trying to figure out!" I sure have to respect his "tell it like it is" style.  So I guess Dan's path in the study still plays a significant role in the search for answers in the battle against autoimmune diseases.

Enjoying a Sunday morning Bloody Mary.

     In spite of the not so optimistic news, Dan and I left Chicago wondering how things had changed.  We still acknowledge the blessings of our Lord, the improved condition of his health this past year, and a desire to focus on the joys in our life.   I guess there is always that gnawing uncertainty for all patients as to the success of HSCT.  Absolute success?  Failed attempt? or somewhere in-between?   We may not have gotten that home run, but what I can say is that we have had a year of improvements and Dan says he will easily tradeoff the numbness and weakness in his hands for declining infusions.   Who knows where this study will take him, but I know if there are answers for continued treatment, it will be found with this fantastic team of doctors assembled by Dr. Burt.  
     Dan has indulged my plan to drive to Florida for an extended vacation.  This has never been possible before because of the need for weekly infusions, but with the help of his neurologist, Dan gave me the go ahead to research and secure approval for infusions in Florida.  Unbelievably, phone calls led to a connection with an incredibly caring nurse named Stacey, who worked tirelessly to help me get this arranged.  Just this morning we got word that everything is a go!  It's my goal not to let this disease determine things that can't be done, but do all that is possible. 

Filling up the backyard box with corn for
the neighborhoods four legged residents.

So we wait for spring, feed the deer from the woods behind the house, and plan for a busy spring and summer of blooming plants and tending to Grandpa's garden.  At the same time, we will follow Dr. Allen recommendations to slowly taper the infusions until which time Dan notices his condition won't allow going further.  Should the amount be reduced enough, it's possible that the method of Ig could be delivered through subcutaneous injections.  

This time they showed up to nibble on corn before dusk.

We always said that it was the hand of God that led us to Dr. Burt and this study, so I guess we'll trust that the path ahead will continue to be led by His plan.    There's no doubt we'll be down in Chicago next winter for the annual round of tests and assessments.  Dan may just turn out to provide the hipster doc with a key to a "somewhere in-between" result to HSCT.   

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.