Barbara’s Story

Site created on September 20, 2018

I have always considered my self extremely blessed and one of the luckiest people in the world! Bob and I have thoroughly enjoyed a fabulous marriage and careers promoting longevity and restoring function and caring for patients. Unfortunately, on Sunday morning September 9th, this future changed when we became concerned with a speech pattern best described as gibberish.  So much so, that I acquiesced and allowed Bob to take me to the emergency room where 2.9 cm mass was found in the temporal lobe of my brain. Unfortunately, it looks like I had run into the Teddy Kennedy, Johnny Cochran, Beau Biden and John McCain type of luck.

 

Even for those of you who are not medical, you can appreciate that this finding is generally not good.  We spent the next week elbowing our way into the offices of four of the leading neurosurgeons in the State.  From each one of them we were blessed by an incredible giving of their time, knowledge and compassion.  While each provided variations in the details, each unequivocally stated that surgery to remove as much tumor as could safely be accomplished was the first step.  We are scheduled for this procedure at MD Anderson Tuesday 9/25.

 

While everyone is thinking glioblastoma, the precise diagnosis is not certain.  This is good because that tumor is probably the cancer that responds most poorly to conventional treatment.  While the chances are not great, it would be a blessing to find virtually anything else because all show better responses to treatment.  We should know with certainty on the 25th.

 

If the diagnosis of glioblastoma is confirmed, there is some benefit to chemo and radiation therapy, which will begin about three weeks following surgery.  On a positive note, there are literally hundreds of experimental trials on this tumor exploring the potential of gene therapy, immunotherapy and a number of other novel treatments.  We will almost certainly be exploring these options, striving to improve medicine in a different way than we have over our careers.

 

When learning of this news, the universal reaction of family, friends, colleagues and patients has been one of disbelief and sadness.  This is not how we feel.  The outpouring of support from every direction suggests to me that I have touched many lives in a positive way, which brings me great joy.  I would hope that you would join me in facing this news with no tears, no sadness and as Christ taught us to pray, “ thy will be done.”  I am certain that my optimistic perspective is derived from my belief in the in the power of prayer. One of my favorite Bible verses has always been Isaiah 53:4, “ He took our infirmities and bore our diseases.”   In your prayers, please join me in guiding the hands of my surgeon during the tumor resection and for the preservation of my speech, which is at risk.

 

Your expressions of love and support mean more than you will ever know.  My family and I will keep you updated through this site.  Your prayers and positive outlook are greatly appreciated.

 

With love to all of you!

 

Barbara 

Newest Update

Journal entry by Robert Probe

For those of you following along without much of a science background, excuse the first couple of paragraphs but we did pass a notable milestone this month that we wanted to celebrate.  Following the diagnosis of glioblastoma, half of the patients have passed from their disease within fourteen months of diagnosis.  These statistics are portrayed on the attached Kaplan Meier curve.  Thankfully, because of aggressive therapy, help from an austere diet and most importantly, thoughts and prayers from all of you; we sailed by this milestone with strength that is burgeoning rather than withering.  Another subtlety you'll notice on the curve is the flattening tail.  While the odds are not tremendous, if you make it to 36 months, the chances of being around for awhile improve dramatically.  We have every intention of seeing how far and how flat we can make this KM curve go.

The second data set probably has more relevance to us now and answers the questions; given our current 14-month survival, what are the odds of being around for another year and secondly, surviving to four years.  The second chart answers both of these questions and suggests that with each passing day of healthy survival, the chances of a meaningfully extended life improve.

In addition to the support from each of you, we are indebted to the expert care we have received from all of our providers that have helped us get this far.  One of the most deserving recipients of this thanks is Ekokobe Fonkem; our neuro oncologist. Since our presentation to the ER Sunday 9/8/18,  Ekokobe has guided us through surgery, radiation, chemotherapy and clinical protocols.  Through these trials and tribulations we developed a deep trust with Ekokobe and were therefore, saddened when we learned of his upcoming relocation to the Barrow's Neurologic Institute in Phoenix.  While excited for him and the tremendous opportunity we did find ourselves facing the unwanted task of searching for another oncologist.

Given the literal life-and-death implications of this decision, we set some ridiculously high selection criteria; decades of experience, clinical trials expertise, willingness to climb out of the box and into unproven treatment strategies and exceptional communication skills.  Dreading another protracted interviewing process, we became immediately relieved during our first visit with Karen Fink; a Baylor Scott & White neuro-oncologist in Dallas.  She endorsed all of the strategies we had been employing and even made some enhancing tweaks on our first visit.  Once again, we feel comforted by knowing we are on the right treatment track.

Wish us continued luck!
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