Kenan Style

As you are aware by now, we do not update the blog as often as you would like.  Thank you for checking in---and surprise, it has been updated!

Today (10/15/13), Kenan and Billy are in Philadelphia at Thomas Jefferson University Hospital.  They arrived Sunday, the 13th.  Kenan had scans on Sunday, then met with Dr. Sato and his team on Monday, and received her 12th immunoembolization from Dr. Gonsalves today.  She had to lay flat on her back for six hours after the treatment and was finally able to get up around 5 pm.  Dr. Gonsalves hit her pretty hard with a concentration to specific areas in her liver.  Both Dr. Sato and Dr. Gonsalves called her amazing, yet again.  Of course, we all know Kenan is amazing, but there is even more reason as I write this blog entry.  Let’s backtrack a few days. 

Early Sunday morning, October 6^th, Kenan woke up with a terrible pain in her tail bone area.  The pain was so bad that Kenan and Billy went to the MUSC emergency room and spent the day there while a team of doctors tried to figure out the problem and determine a plan of treatment.  It turns out that a fast growing tumor emerged in her sacrum and the tumor began pressing and intertwining with nerves in that area.  The decision was made to check Kenan into the hospital on Sunday and do surgery on Monday to remove the tumor. Dr. Patel, a neurosurgeon at MUSC, did the surgery and Kenan was released to go home on Tuesday. 

Billy was a trooper and went to work the next morning!  I was the nurse for the day.  Kenan improved with each passing day.  I was comforted to see an amazing support system of friends who checked in on Kenan and Billy.  From my generation (Baby Boomers), I am used to seeing friends bring over casseroles and desserts.  I am happy to report that tradition continues with Generation Y.    

It is good to have a child who is a fighter!  As a career educator, a child who fights conjures up some frightful predictions and future outcomes.  However, in this case, I am a proud, proud Mom of a child who is a fighter!  She is fighting a mean, aggressive, enemy.  In true Kenan style, she meets it head on at every turn.  She is killing it with kindness, a gentle spirit, putting others above self, and living each day fully.  She keeps the enemy at bay by top notch medical treatment, faith, prayer, eating healthy, exercising, and hard work.  She circles the enemy with supportive family, friends, co-workers (William Bird is an awesome company), a sense of humor, and most important, a loving, supportive, easy-going, husband Billy.  He’s AMAZING, too!  Hey, we should all fight this way. 

I always try to include a funny story.  This time, let me think…well, there is the story of Kenan recovering in the hospital in Charleston on Monday night.  They came in at 1:00 am and took her down for an MRI.  When she returned to the room, all lights were on and she sat up in bed the rest of the night with her work laptop on her lap.  I was snoozing off and on.  As I peeked over, I thought my little girl worked all night.  Then, I caught on she actually fell asleep with one finger on the keyboard.  If there are any of you that received an email from Kenan Monday night, October 7^th and there was a line of rrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrxxxxxxxxxxxxxxxxxxxxxxxxxttttttttttttttttttttttt’s – it was a good effort after having surgery just a few hours earlier.

Kenan and Billy will return to Charleston on Wednesday afternoon.  I am sure she will be worn out for a few days---but I know she and Billy are most appreciative of your love, prayers, and positive thoughts.

Sue and Kenny

 

HOT LANTA

We hope spring has found you in your part of the country.  As for North and South Carolina, it has been the 2^nd coldest spring on record.  Surely, any day now, the humidity will be here in full force along with 90 degree days and lots of sunshine.  Although the temperatures have been cool, we have a lush green lawn, blooming flowers, and bluebirds nesting in the bluebird house.  What I have learned about myself is that I like living in an area that has a change of seasons whether it be spring, summer, winter or fall.

Kenan has been through some changes herself.  She was released from her clinical trial with Dr. Powderly, here in Huntersville.  After scans in January and February, there was continued growth in her tumors located in her liver.  Dr. Powderly and Dr. Sato (Philadelphia) agreed the Huntersville trial of medications was not working.  Therefore, she was on the hunt again for a new clinical trial.

We were excited to learn that Dr. Sato was beginning a new clinical trial in Philadelphia and he invited Kenan to participate.  As with the clinical trial in Huntersville, the clinical trial would require weekly blood tests, treatments, and scans for the first six weeks.  Kenan and Billy were not looking forward to weekly flights to Philly.  So, our resourceful girl, got online and found the same clinical trial starting at Emory University Hospital in Atlanta, Georgia.  This would be a 5 hour drive from Charleston rather than weekly flights to Philly.  Therefore, Kenan applied and was qualified to participate in the new clinical trial in Atlanta.  Dr. Sato agreed to still monitor and review Kenan’s scans, etc.

Since March, Kenan and Billy have been making the drive to Atlanta once a week.  Last Thursday, May 2^nd Kenan’s scans were read by a nurse at Emory and Kenan and Billy were told there has been a 25 % increase in the targeted tumors.  As a result, Kenan was advised that this trial was not working and will not be returning to Emory University Hospital in Atlanta.  This was bittersweet because you never want to hear that a treatment was not working, but Kenan and Billy were not big fans of Atlanta.  In fact, Billy might have his name and an artist sketch of his face hanging near the nurse’s station as a visitor to “WATCH OUT” if seen!

I hope you don’t mind Billy, but it does make for a good story…  During their last visit, the nurse attending Kenan did not put in her IV comfortably.  She was hurting Kenan.  When Kenan spoke up for herself, circumstances went downhill from that encounter.  At some point around this time, Billy was allowed to go back and be with Kenan.  Kenan disclosed to Billy her treatment.  They both were then on edge, agitated, and stressed beyond the usual stress of the visit.  Kenan left the treatment area and her attending nurse said, “that woman is evil!"  The attending nurse said this in front of Billy!  As you can image, Kenan’s Knight in shining armor (or Clemson Tiger), sprang into action.  He did not let this nurse’s (and I use that title distastefully) actions or comment go unchallenged.  And last time I checked, strong, positive, thoughtful, giving, and caring was not a definition of evil the last time I checked.  However, a patient asking for comfort from a trained nurse and that request being dismissed with disdain and contempt might define EVIL NURSE!

As of the writing of this entry, I do not know what is next for Kenan’s treatment plan.  I assume an upcoming trip to Philadelphia to see Dr. Sato will be forthcoming.  Now that school will soon be out for me (June 12^th), I will try to write blog entries more often.

Kenan is feeling well, going to work every day, and running!  She was in Nashville last weekend helping Anna celebrate her upcoming wedding to Brian. 

Most recently, Kenan and Billy returned from a (it will make you jealous trip) to the Bahamas.  Thank you to the Reilley Family!

Another fabulous recent event was when Kenan got to meet Coach Roy Williams.  In fact, we all met him!  Kenny had Coach Williams speak at his annual Employer’s Association luncheon.  Kenan, Billy, Pete, Kenny, Aunt Karen, and I all attended.  It was a great motivational speech.  We had the opportunity to get a few autographs and participate in a meet and greet with Coach Williams at the end.  Coach Williams was very personable and both Kenan and Pete got quality time with him.  Sadly, Jetty did not attend.  She surely would have been tapped for a Carolina Mascot appearance on the football field next year!

Pete and his girl, Caroline, are heading to San Francisco May 10^th for five days of travel.  They will duplicate the trip Kenan and Billy took last year.  Maybe Kenny and I will do the same soon!

Safe Travel to them all!

Say a prayer for Kenan,

Sue      


Here is a picture of Kenan telling Roy all about her escapades on Franklin Street after UNC won the National Championship in 2005 and 2009!

Happy New Year!

Happy New Year to Everyone!

It has been a while since the last post.  Here is a quick overview since the last post.

Kenan has been continuing to go up to Huntersville, NC for treatment every three weeks.  After several months of regression and stability, Dr. Powderly has seen some progression.  With this news, he suggested combining radiation with the infusions.  Kenan finished her 5th and final round of radiation at MUSC last week.  The goal of this treatment is to weaken the cancer cells, while boosting the immune system at the same time to "train" her immune system to fight the cancer cells.  She will have one more infusion before knowing the results of the new game plan. 

We have a fundraising event coming up on February 10th for those who will be in the Charleston area.  Below is the link to the event.  We would love to see any and all that can make it!!


http://bottlesnbrushes.com/calendar/?month=02&year=2013&calendarID=1


Below are some picture of our trip to San Francisco in August...Enjoy!!