Karen’s Story

Site created on September 30, 2019

Karen was diagnosed with acute promyelocytic leukemia on September 18, 2019. This is a rare and aggressive - but highly treatable - form of leukemia. While the doctors believe that they caught it early, and the prognosis is good, the treatment will be grueling. It is an estimated 4-6 weeks of daily, inpatient chemotherapy followed by 8 months of outpatient treatment.

Due to the risk of infection, no flowers or balloons are allowed in Karen's wing of the hospital and visitors are tightly restricted for the time being. Phone calls are difficult given the fluid schedule, but text messages, emails, and notes on this site are welcome. Due to numerous treatments and doctor visits as well as the side effects of treatments, she may not be able to respond on a timely basis, but we know she would appreciate your support.


Thank you all for your thoughts and prayers!


-Gary, Peter, and Matthew

Newest Update

Journal entry by Karen Bohn

It’s been nine months since I’ve posted an update, so this is a bit overdue. In this Covid-filled world, and given the backdrop of leukemia and a compromised immune system, we’ve been extremely cautious about venturing out as I have no desire to risk hospitalization again. I’ve done my time!  And so far, so good. No scares, for which I must thank our family, friends and colleagues. Their courtesy and concern in getting together in the safest possible manner to minimize/eliminate the risk of exposure is greatly appreciated. (I even attended a multi-day board meeting where daily testing, social distancing and masks were required.)

I continue to have blood draws every three months, but not long after one check-up is behind me, I begin to anticipate the next one. I’m thrilled to report, however, that my December blood draw once again showed no signs of leukemia, which was the sixth successive quarter with this welcome news.   In fact, in reviewing my results this time Dr. Eckfeldt said “Your blood looks like you never had leukemia”. That was a real confidence booster!  To top it off, I had a follow-up scan that gave me more good news - all the potential issues they discovered when I was in the hospital or struggling with chemo are stable. 

I’m beginning to believe in my bone marrow again!

I’ve had some lingering issues triggered by either the blood cancer or the treatment — not sure which — including  an autoimmune disease creating a real struggle to get my hair to grow and my skin to calm down. With the help of various biopsies and treatments, and an array of skin friendly lotions and potions from my care team at the University of Minnesota, both are much better. It’s nice to wear a scarf around my neck instead of my head!

Sleep is still a main driver in my day to day life, but the 11-12 hour nights are behind me and I’m down to a reasonable 8-9 hours a night with very few daytime naps. And a big bonus has been that I’m finding myself spending more time thinking about a healthy future, and less time thinking back about those many months of feeling sick 24/7. 

To receive this latest good health news at Christmas time, as the calendar was nearing its turn to a new year, and while passing the winter solstice bringing a few more minutes of daylight to each day, would have been joyous enough, but to add even more hope for the future, I received my latest blood draw results on the same day that our new granddaughter was born.  She is beautiful!  Hallelujah!

We were blessed to be with our family from Christmas Eve until today in Chicago. After spending last Christmas in Covid isolation with family gathering only via Zoom and the previous Christmas just three months into the nine long months of a daily chemo regimen, it was a very happy Christmas indeed. I look forward to a new year filled with all the joy and hope that life can bring.  Who knows — maybe this will be the last time I need to post anything about my life post-APL?

Your always and ever present love and support has helped and sustained all of us in so many ways. I did not walk this journey alone.  Thank you.  I have learned so much.  I am truly blessed. 

Karen

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