June 2014

Dear Friends & Family,

Recker Family July 2013

I wanted to follow up the last blog post with some answers, as I mentioned that there was an MRI and additional treatments that would be coming up in the weeks following.  The results of Mark's most recent MRI showed the tumor had not grown and in fact the area of concern had been reduced significantly.  This was perplexing because Mark's symptoms were not consistent with those results and his condition was worsening.  As I've mentioned before, we have tried not to live and die by MRI reports; what really matters is how Mark is doing, how he's feeling and how he's managing his symptoms.  After several calls to the oncologist, and describing how Mark was doing, it was clear to the Dr. that further treatment (ie infusions) would have to be on hold for now.  He needed to be stronger to tolerate the side effects.  Over the past week, his condition has showed steady decline.  We made the decision to put Mark on hospice care this week.  He will get personalized treatment of his symptoms (we are hoping for better pain control) and we will have access to a nurse 24/7 as well as a social worker (she's a counselor we've been working with for the past year so she already knows our family) and a chaplain.  We've had visits with each of them this week.  We feel very supported and cared for by the hospice team.

This is certainly not the blog update that I ever wanted to write.  All along we've been hoping for a miracle and Mark has had periods of feeling good enough to get out for a walk or a ride on his recumbent bike.  Recently, I looked into some clinical trials that showed some promise for treatment of brain cancer like Mark's.  I spoke several times with a Dr from Duke University who is using the polio virus for treatment of brain cancer; unfortunately Mark did not qualify because (ironically), his last MRI scan did not show tumor growth.  There is another study at the Mayo Clinic that is using the measles virus for treatment; I spoke to them this week also.  Mark would potentially be eligible for that study, but not until the first part of August.

Everyone wants to know "how long"?  We don't know, of course, but we do know that he is fading.  I have been hoping that we would be able to celebrate our "first" anniversary in July.  I am still hoping for that.  Please pray for comfort for Mark.  He can be restless at times and when he is feeling nausea, headache and fatigue all at the same time, he gets overwhelmed.  We want to keep him comfortable and decrease the amount of episodes where he is feeling those overwhelming waves of symptoms.  We are working closely with our hospice nurse to address those issues.

We have felt love and support from family and friends like never before in this past year.  Please continue to keep us in your prayers.

Sincerely,
The Recker Family