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

Family and friends,

For those of you with keen memories you’ll recall that in November, we celebrated passing the median survival of glioblastoma patients with no evidence of recurrent disease.  Woohoo!!!

 

As we approach Valentine’s Day, we have several more reasons to celebrate:

·      We’ve recently finished our twelfth and final round of chemotherapy (temozolomide)

·      All of the blood counts and altered chemistries have returned to normal

·      Most importantly, January’s surveillance MRI was the first one absent of any changes (very comforting)

·      We continue to focus on each recurrence free day increasing the chance of being able to enjoy friends and family for years to come

 

With all of this news to be thankful for, we’ve been living it up as you can surmise from the pictures below.  In a once-in-a-lifetime opportunity, we enjoyed three performances of the New York Philharmonic Orchestra at the opening of the McKnight Center for the Performing Arts on the campus of Oklahoma State University.  We had the entire family for Christmas in Crested Butte, highlighted by Mackenzie, our 3-year-old granddaughter making her first ski run.  Finally, we brought in the New Year as we’ve done for the last several years at Temple’s perennial favorite; The Last Night youth club benefit.

 

As you might imagine, our intent to keep checking things off of the “bucket-list” continues in full-force.  An important upcoming milestone is the Baylor graduation of Tori, our youngest in May.  Outside of the State, we are planning a trip to the Northeast in June to watch a niece graduate from Dartmouth and a fall visit to Ireland.  We’d enjoy hearing about any “must-see” suggestions you might have for either of these destinations.

 

While life’s “flight-plans” occasionally need to be revised, our altered one has been filled with joy largely because of the continual support from all of you.

 

We’re look forward to providing many more future updates as positive as this one. 

Barbara and Bob

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