One week ago on January 25^th we posted an update on SuperKenny.org that talked about the persistence of Kenny’s cancer and its resistance to treatment, reviewed the symptoms that are negatively impacting his daily living, and mentioned new treatment options that were being considered.  In the days following the Jan 25th post, Kenny’s insomnia, loss of short term memory, confusion and anxiety not only persisted, but seemed to get worse.  With much thought and angst, Kenny and family decided to transition to hospice care.  What this means is that we are shifting our attention away from active cancer killing treatments in favor of treatments and support designed to preserve and enhance the quality of Kenny’s life.  Hospice is not an irreversible decision.  Assuming we can get a handle on current symptoms and identify a treatment that offers potential survival benefits while preserving the quality of Kenny’s life,  there is a possibility active cancer treatment can be resumed.

Health care and quality of life discussions have been complicated by Kenny’s almost complete loss of short term memory.  He continues to make his own decisions with input from providers, family and friends, but he is constantly challenged to remember what decisions have been made and the reasons for those decisions.  In one way it has been a blessing in that Kenny is not constantly pre-occupied with questions of his mortality, and is able to enjoy a reasonable quality of life.  In another way it creates a significant problem for Kenny in directing his own care.  A good example of this is his difficulty in managing insomnia related to fluid intake and urinary frequency.  For reasons yet to be explained (but most likely due to the location of the tumors), Kenny experiences unusual thirst which drives much higher than normal fluid intake leading to urinary frequency.  Attempts at limiting fluid intake in the evening leading up to bedtime and through the night have failed because Kenny does not remember why he needs to limit intake.  If he is reminded of the reason for the fluid restriction at the point of intake he understands and responds appropriately, but 10 minutes later he will be back in the kitchen filling his water glass.  The end result is very little sleep; which could also be one of the causes of his nighttime confusion and disorientation issues.

For those who may be wondering, Kenny reviewed this update prior to posting as he has done for all previous postings.  Kenny continues to direct his care with help from his medical team and family members.  Reviewing these updates reinforces his control over these decisions while serving as an ongoing reminder of critical issues.

As always, we thank you all for your support whether it comes in the form of a visit, an email or text from half way around the world, or a post on face book.  Your good thoughts, well wishes and encouragement are greatly appreciated.