Sandy has come home to spend her remaining days with her husband, family and friends. After exhausting all good medical options for treatment, she will be receiving in-home hospice care to ensure that she is comfortable during this time. Sandy is in good spirits.

She has expressed that she sees the hand of God at work in her circumstances and she takes comfort in His presence. She has referenced Psalm 77 as an expression of this peace.

Our family asks those who wish to visit to please call first to ensure that she is able to handle the visit. We appreciate your prayers and support of our family during this time.

If you would like to read the long version of this message, you are invited to continue reading.  You may also leave a message for Sandy at her guestbook.

As many of you know, Sandy has been fighting Myelofibrosis, over the past 5 years.  She was first diagnosed  with this cancer of the bone marrow that disrupts the body’s normal production of blood cells, way back in 2006 and was told that she most likely had 2-5 years.  She sought the leading experts on the disease which brought her to the Mayo Clinic.  Having access to the latest research and treatments gave hope of a extended timeframe. ( I don’t think there was ever hope of beating the myelo as its not curable but the intent was to manage it as long as possible.)  Way back then, that seemed like a hope.

This October her general physician noted that Sandy’s shortness of breath may have been related to a heart valve peculiarity that she was born with, and suggested she have this checked.  Since the Myelofibrosis posed a significant surgical danger via irregular blood letting/clotting, she hadn’t anticipated ever having another surgery again, thus checking any heart valve issue seemed a moot point.  But her general physician pressed her, and she acquiesced.  The evaluation revealed an urgent need for a heart valve replacement, and so despite the difficulties and risks, she had this surgery Nov 8th 2010.

Sandy seemed to start to recover from the surgery early on, but then recovery started coming more slowly, and seemed stuck in low gear.  It was quickly decided that physical therapy was beside the point, and that was discontinued.  Post-surgery, Sandy’s self-assessment of her health was that she had “no quality of life”.  She was not able to do anything besides sleep in her bed or lay back in a chair, and could eat very little.  There seemed to be a negative feedback loop here, and only some medical reasons (an enlarged spleen pressing on her stomach) were available to support our understanding.  The doctors could only be suprised by this, and suggest they didn’t realize Sandy’s reserves were so low. and suggest that possible Sandy had lower reserves due to the Myelofibrosis.  Sandy seemed to innately understand this going in.

Then in January of 2011 came the hope of a new / still experimental but fairly well established Myelofibrosis treatment at Mayo in Rochester MN.  She was admitted to the program and went up for her first treatment on Jan 24th, 2011.  That was to take a day or two.  But while there, her very alert doctor noticed a slight temperature and ordered her heart valve checked for infection.  A few days later we learned her heart valve was infected along with a spot on her aorta.  Left untreated, the infection would spread and the heart valve would work its way off.  The initial course of action was 6 weeks of a carefully tailored antibiotic cocktail, followed by a repeat of the heart valve surgery.  Sandy’s initial reaction to this was that the last thing she wanted to do was to repeat that surgery, noting it was the most difficult thing she had ever been through.  Still, we had time to evaluate and there was a small chance antibiotics alone could heal the infection.  So we would pray.  Over the next few days she received another heart valve evaluation and this time the doctors were very shocked at how fast the infection had spread.  Then on Tue Feb 1st, it was suggested that the heart valve surgery be moved up to Thu Feb 3rd.

The next 48 hours were a flurry of questions, evaluations, conference calls, and soul searching.  Without treatment she would have days to weeks.  With treatment, the doctors could give no assurances that this heart valve surgery would go better than the first.  In fact, due to her degraded health in comparison with the first surgery, there was a (possibly conservative) 20% chance estimate that she wouldn’t make it off the operating table.  Then it would take weeks before she was back up to the point she is now.  Her life expectancy was suggested to be weeks to months, and it was very likely she would never leave the hospital.  Additionally, since she would be on antibiotics the rest of her life, she would likely never be admitted into the experimental cancer treatment program.  

Once this became clear, Sandy and Gleb, supported by their entire family, were able to make the decision to discontinue treatment and switch to comfort care and return home.  It is clear Sandy is at peace with this, and now, supported by her family, in good spirits.  On Saturday February 5th, this was initiated, and Sandy has checked out of Mayo to return to her home.  Her family will be by her side throughout this time.