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!!

SUMMER

Summer, the favorite word for someone who works in education.  The Koll`s and The Colbert`s are definitely summer people.  The favorite part of my summer has been the opportunity for me to accompany Kenan to her doctor appointments.  We know, we know, it has been far too long since the blog was updated…

So here goes, since the early June posting Kenan had her scans to determine if the clinical trial in Philadelphia with Dr. Sato was working.  I understand from Billy and Kenan there was a long process while the doctors read the scans and discussed Kenan’s results.  After a long deliberation, Dr. Sato decided the Philadelphia clinical trial was not successful for Kenan.  He advised Kenan and Billy to find a new clinical trial.  Off to the internet they went and began some research.  They took their findings back to Dr. Sato for some input and Kenan and Billy did find a new clinical trial.  Locations of the new clinical trial were at Yale University, the city of New York, and Huntersville, NC.  I know, Huntersville, NC.  Kenan had actually looked at this clinical trial in Huntersville last March before Dr. Sato had offered her a spot in his clinical trial.  She went with Dr. Sato first, but now has returned to the Huntersville trial.  From Philadelphia Kenan contacted Dr. Powderly in Huntersville and discovered he was just beginning a new clinical trial (similar to the March trial).  An appointment for a screening was made with Dr. Powderly. 

Before Kenan left Philadelphia, Dr. Sato encouraged Kenan to have an immuno-embolism treatment to her liver before she left.  Dr. Gonsalves was very excited to see Kenan and Billy again.  She decided since Kenan had tolerated the previous treatments so well and it may be sometime before Kenan would be back, she would treat the entire liver in one setting.  Previously, Dr. Gonsalves alternated one side and then the other.  Needless to say, the full treatment was a rough experience.  Our brave girl made it through with the help of Billy to lean on and help her.

Kenan has since meet with Dr. Powderly and was accepted as the second patient in the Huntersville clinical trial.  Amazingly, Dr. Powderly’s location is a five minute drive from our house!  Yes, a 5 minute drive.  Another good sign is that a fellow UNC pharmacy classmate of Kenan’s Uncle Randy, operates a Compound Pharmacy right beside Dr. Powderly’s office.  What are the odds, good we know!!  

Kenan is now 22 days into the new clinical trial.  She just went today for a follow up visit with Dr. Powderly.  She has experienced some flu like symptoms with the new treatments and this has been concerning to us all.  Dr. Powderly was very attentive today and gave us some good advice regarding how to keep her comfortable.  Kenan travels to Huntersville every week for the first six weeks of the trial and then will return every twenty-one days after the first six weeks.  Kenny and I are enjoying seeing our Kenan once a week.  It is so nice to have your kids come home again!  

The Colbert’s and The Kolls’s are off to Aunt Karen’s for a weekend at Myrtle Beach (Cherry Grove).  Kenny and I are looking forward to being with family.  Sadly, Jetty will not be able to attend.  It has been a few years since we have all been together at the beach.  We are looking forward to the dinner at Calabash, a visit to Hamburger Joe’s, long walks on the beach, some additional family pictures, fishing for the men, maybe working a jigsaw puzzle, telling old family stories, and the crash of waves as we read in the sun and sand.    

As always, thanks for checking in on us.  We appreciate the continued support and prayers.  Keep 'em coming!    

Sue            

              

Infusion #4

Hello!

I am in Philly today for my 4th round of chemo. This is the final infusion before I get scanned and the doctors decide if I continue with this trial. All of my treatments have gone very smoothly so far! I have been very lucky because I have not really had any side effects from this drug. I feel like I should have the side effects all of us typically associate with chemo but my doctor keeps telling me, "you don't have to get sick to get better."

Dad came with me for my first treatment, my friend Jackie joined me for number two, Billy came with me for number 3, and I am flying solo for number 4. I flew up this morning and I go home tonight. My trips up here are very quick. I get off the plane in Philly, hop on the train to center city, walk two blocks to the hospital, get my infusion and head back to the airport.

They just took my weight and ordered the drug. I am waiting for a chair to open up now. I hope that I get placed next to my favorite patient...an older gentleman who brings a bucket of KFC with him to his infusion!

A new treatment

Hello Everybody!  Time has flown by and lots has happened in the past few weeks.  I recently got a call from my team in Philly and they told me they wanted to change my treatment.  They wanted me to start a clinical trial which treats the entire body instead of just the liver.  As of my last set of scans my liver was stable (yay!) so they felt it was important to start tackling the other tumors in my body.  The clinical trial they suggested is in Philadelphia at the same hospital I have been going to.  This was a big decision to make and we did lots of research on this trial and the other options out there.  After getting a second opinion and grilling Dr. Sato with a million questions, we decided that the trial in Philadelphia was the right path to take.

This trial requires me to go to Philadelphia once every two weeks for an infusion.  I had my first infusion on May 1st and my following ones will be May 15, May 29, and June 12.  I will get scanned on June 25th (the week of my birthday) to see if it is working.  I pray that birthday #27 is the best yet and I can celebrate that this drug is working!

Dad went up to Philly with me for my first infusion and, other than spending so much time in the hospital, we had a great time!  Dad is a foodie like me and we got to try some amazing restaurants around town.  It has been over a week since my first infusion and I feel great.  I have not had any side effects and just a mark on my arm to remind me that it happened.  My biggest complaint is that I missed the first kickball game of the season!

Here is a picture of Dad and me in the infusion room!

The Liver is Stable!

Tomorrow will mark a year since Kenan had half of her liver removed.  At that time we thought it would be a one and done procedure and we would never have to hear the dreaded words ocular melanoma again.  Here we are a year later and still fighting, but stronger than ever.  We are more knowledgeable about this cancer, we have the right doctors behind us, and we have the faith we need to beat this thing.

We met with Dr. Sato and the Team on March 26th to go over the scans. 

Good news first, Kenan's liver has been STABILIZED!!  That is the goal of the Immuno-embolism treatment.  One of the spots cannot be seen on the scans anymore and the others are shrinking!!  We are very happy with this news.  They want to do 2 more rounds of immuno just to make sure everything stays stable so we had one round done on March 27th and we will have the next on April 30th.

The not so good news is that they found a new spot just below her sternum which we can feel below the skin and one on her lung.  They are not worried much with the spots outside of her liver, which helps us have a peace of mind. 

The team is debating a couple different options for the next round of treatment.  They mentioned a procedure called cryo-ablation which will freeze the spot and kill it at the same time.  Another treatment option is directed radition treatment to zap it.  Right now they are holding off on treating anything other than the liver.  We are waiting for the final call from Dr. Sato before getting tickets up to Philly to see how long she will have to stay up there.

We are heading to Banner Elk for the Easter Weekend for a vacation that isn't to Philly.  We are looking forward to a nice break.  HAPPY EASTER!