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Our Stem Cell Transplant Journey: Things We Learned Along the Way

Jill and Mike Folan

Jill Langendorff Folan is a member of the Lurie Cancer Center’s Patient & Family Advisory Board.  In this blog, she shares the experience of her husband Mike going through a stem cell transplant. Jill and Mike are participating in the Lurie Cancer Center's 20th Annual Cancer Survivors' Celebration & Walk on June 2. 

Our journey began almost a year ago, in June 2012, when my husband’s primary care physician told him he had lymphoma.  The next two weeks were a whirlwind of various oncologists, biopsies and hospital stays and by the end of the month we had a primary oncologist, a treatment plan and one round of chemo under our belts.  From the start, we knew that a stem cell transplant was our BIG GOAL.  Everything we did for the next nine months was in preparation for the transplant.  In October, Mike’s own stem cells were harvested and frozen; they’d be ready when Mike was.  
 
While Mike received treatment in the months leading up to the transplant, I read the information from Northwestern’s stem cell team, our insurance company and everything I could find on the Internet.  I also emailed our oncologist with questions and discussed them with the transplant team.  For the most part, Mike and I felt prepared.  But, there are things we learned (or finally understood) as we lived through it in March 2013.  I’ve shared a few of these here to round out the official information:
 
  • Planning becomes a thing of the past.  Appointments, labs results and the risk of infection dictated our schedule, cutting into both our social and professional lives.  At my core, I’m a planner and dealing with a constantly changing schedule was hard on me.  I’d like to say that this experience taught me to “go with the flow” or to “take it one day at a time” – but it didn’t.  I did learn to really focus on those things I could control and to embrace “spur of the moment” activities.
 
  • The term “transplant” confused us.  It’s really an “infusion” or, more plainly, it’s an IV.  Mike had received chemo, platelets, hydration, etc. through an IV off and on for months. Once we thought of it as just another IV, we felt more comfortable with the process.  
 
  • It seems like a simple process…and yet it’s an incredibly moving experience.   The stem cell technician arrived with something that looked a bit like a keg of beer.  He opened it and cold “smoke” billowed from it (think dry ice) as he carefully lifted out a small bag that was filled with Mike’s frozen stem cells.  He gently slid the bag into a small tub of warm water and softly moved the bag around until the stem cells were defrosted and the right temperature.  The nurse connected them to the IV and they began to drip into Mike. The event lasted just 45 minutes and we’ll remember it forever.
 
  • Friends and family want to help.  Early on, I found it difficult to accept all the support that was offered.  So many requests would have been last minute and, perhaps selfishly, Mike and I wrapped ourselves in a kind of cocoon. Then, one day, a wise man from Northwestern’s Supportive Oncology Team challenged me to accept support once a week.  I did, and I found it made both me and the friend whose support I accepted feel good.  One relatively easy way some of our friends provided support was to register as potential stem cell donors or to give blood or platelets through the American Red Cross.  Some of our friends also sponsored us when we walked in the LLS Light the Night Walk.
 
  • Falling in love with your care team is normal.  (At least I hope it is, now that I’ve said it here.) From our oncologist, to our transplant nurses and transplant pharmacists, to the floor nurses and PCTs, I fell in love with every one of them.  They were saving my husband.  They looked after him with such care and concern (it helps that my husband is totally charming).  They were happy when we were happy and feeling well.  And, they made it better when we were sad and not feeling so hot.  They are smart and talented and compassionate.  What’s not to love?
 
  • It’s a celebration!  I’d heard that the nurses would make a big deal out of the stem cell transplant and I’d seen the signs with all of their signatures posted on other patients’ doors.  So, I decided to join in.  We hung a birthday banner from the window shade, distributed stem cell sugar cookies and started a “pool” for guessing Mike’s hospital discharge date.  It was fun (and distracting).
 
  • The patient and the caregiver might not feel the same about leaving the hospital.  Mike was overjoyed.  To him, it meant that he was well and he was eager to see what had happened outside of Prentice during our three-week stay.  He was tired of the food, the hospital bed and the shower.  While I was delighted that he was coming home, I felt a little sad about leaving the hospital.  Unlike Mike, I wasn’t stuck on the 15th floor and I’d made the hospital my community. The Prentice security guards started writing my name on the visitor badge as I approached the desk.  The grill chef knew that if I ordered burgers, one’s on wheat and one’s on white, no raw veggies.  The Gift Shop clerks, the Walgreen’s pharmacist, well, you get the idea.  On our way to the car, I got a little teary-eyed and croaked out that Northwestern was like my Cheers. (Remember that show? Where everybody knows your name?)  Thankfully, Mike said he understood and gave me a hug.
 
Mike came home two weeks after his transplant and we settled into a new routine.  His PICC line was removed and his hair started growing back.  We had frequent labs and saw his oncologist weekly.  It’s now May, Mike is 74 days post-transplant and we’re headed for another new routine.  We just learned that his bone marrow biopsy and PET scan show no evidence of disease.  We are beyond thrilled! 
 
And, we’re looking forward to celebrating with friends and family at the Lurie Cancer Center’s 20th Annual Cancer Survivors’ Celebration & Walk-and new 5K Run on June 2.  Please join us!
 
NOTE: Be the Match, (formerly the National Marrow Donor Program) will register potential donors on-site in Grant Park, free of charge, at the Cancer Survivors’ Celebration & Walk and 5K Run. Thousands of patients with cancer depend on the Be the Match Registry to find a match.  Patients need donors who are a genetic match, and donors with diverse racial or ethnic backgrounds are especially needed. Registering is easy and painless—and your support could save a life!
 
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Comments

Sherye Shreffler (not verified)
My husband's case is far from your husband's story. He was not able to receive his own stem cells. His younger brother served as his donor and was a 9/10 match. We are currently about 10 days shy of the 6 month post-transplnt mark and he still has evidence of disease. Needless to say, we have had to deal with immuno-suppression for a number of months along with many viral infections and many re-admissions to the hospital and even some radiation. We are sill praying the new immune system will "kick into gear" and my husband will be cured. This has been a wild, wild ride and we know it isn't over yet.
Dan Poynter (not verified)
See http://TransplantHandbook.com Transplant Handbook for Patients: Replacing Stem Cells in Your Bone Marrow.

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