June 30 - Kenan's Birthday!

This is my therapy...today is Kenan's Birthday!  We miss her so much!  I am sharing a few memories!  Missing both Kenan and Pete today!  Staying strong, but....

May 28

I have debated this day…trying to decide when/if I could update the blog?  I assume many of you have long ago stopped checking.  For some of you, there is Facebook and you KeepupwiththeKolls that way.  However, not everyone is on Facebook, and this post is for you. 

I had a best friend recently tell me she logged onto the blog and reread "Kenan's story."  What a warm compliment.  She made me think-- perhaps I could send an update.  Today seemed appropriate.

Kenan started the blog to keep everyone informed of her next steps as she received medical treatment for Ocular Melanoma.  Today, I have an update on the next steps...

May 28, 2014 was/is the worst day of my life!  Our precious Kenan died one year ago today.  It has taken me 12 months to even say, "our Kenan died" or to even talk about her in the past tense.  To strangers, I still use the present tense.  It is easier.

I had a friend tell me in an email recently that she loved my ability to be a Steel Magnolia when times have been unbearable.  I love that comment and she has no idea that was a favorite movie that Kenan and I watched many, many times together. And I learned today that Kenan watched that movie many, many times with two childhood friends, Katie and Christine.  Katie told me they would watch Steel Magnolias on sleep overs at our house and she remembered baking brownies in the kitchen.  She said Christine got mad when she and Kenan ate the brownie mix before it was baked.   It brought full circle for me Kenan's love for friends, movies, and cooking.

Kenan loved to cook!  One of my most prized possessions is a cookbook she put together for me of family recipes.  Of course, it may be because she got tired of going through my cookbooks, searching for hand-scribbled notes of paper when she needed a recipe.  All Mom's use that same filing system---right?

I asked my three friends who were familiar with Steel Magnolias  if I was Truvy, Clairee, Ousier, or M’Lynn?   Of course, who among us does not have some Ousier traits!  As I was pulling together some quotes from the Steel Magnolias movie to help my friends decide who we were, I found the following quote from M’Lynn…” 

M'Lynn: I'm fine, I'm fine, I'm fine. (how many times I have said that this past year). 

M'Lynn: Oh God! I am so mad I don't know what to do! I wanna know why! I wanna know *why* Shelby's (Kenan’s) life is over!  Oh *God* I wanna know *why*? *Why*? Lord, I wish I could understand!

M'Lynn: No! No! No! It's not supposed to happen this way! I'm supposed to go first. I've always been ready to go first! I-I don't think I can take this!”

M'Lynn:  I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when she drifted out.  

My own quotes:  Take it one day at a time.  Remember to breathe.  What would Kenan want me to do?  Take care of Pete, Billy, Jetty, her Dad and her Granny.  Keep moving!  Live by her example…be a great wife!  Be a great friend!  Travel!  Laugh!  Live simple!  Cook!  Pull for the Heels!   And, hold on to her!!!

So, when/if I should/could update the blog!  I don’t want in anyway to minimize this traumatic event of my life!  And at the same time, I don’t live by regrets.  This post is to honor Kenan.

Kenny and I recently had the opportunity to award two more Kenan Colbert Koll Scholarships.  It was the first time I have spoken about Kenan publicly.  I have participated and presented in many senior award nights.   Usually, I am there as a counselor coordinating the night.  This was the first senior awards night Kenny and I were there as presenters.  We felt a lot of pride to be able to honor and remember our Kenan!

Kenan was such a good student!  It was like yesterday, she sat at the kitchen counter doing first grade homework!  Thank goodness for Ms. McGowan.  I have no doubt she established the tone for Kenan, along with a little help from Kenny and me.  Kenan was so driven to be a good student.  And what a great reward when she was accepted to the University of North Carolina at Chapel Hill!  Her lifelong goal achieved!  

Go Heels!

Today on this day, May 28, 2015---I want you to remember Kenan Colbert Koll!  She was an amazing daughter!  Such an easy child to raise.  She was so strong, brave, and determined as she fought to live!  Of course, it still doesn’t seem real!  We never stopped believing that Kenan would live!  In the Ocular Melanoma world, Kenan is none as an OM Warrior!  And, she was an OM Warrior.  She fought hard, long, and with all her might.  She was amazing and through so many financial contributions in lieu of flower donations, we were able to give four Kenan Colbert Koll Scholarships this year. 

Our first recipient was Rachael Warden, Kenan’s friend and neighbor!  Rachael returned to school this year, The University of North Carolina School of Law!  Go Heels!  Kenan was so happy for Rachael and thrilled that she and Justin were getting married.  Rachael and Justin were married this past weekend.  Billy and Pete were there representing Kenan!

The second recipient was Summer Heath.  Summer is a Hopewell High School graduate, like Kenan.  And, an OM Warrior.   Summer is fighting Ocular Melanoma and we support and pray for Summer every day.  Another amazing strong, brave young woman.  Summer attended and just graduated from the University of North Carolina at Pembroke. 

Our third scholarship recipient is Rachel Cowley.  Rachel will be a 2015 graduate of Hough High School.  Like Kenan, Rachel has a brother going to West Point!   Rachel possesses a lot of Kenan's traits.  She is a gifted writer, independent, a natural organizer, hardworker, and possesses an impeccable work ethic.  You can give Rachel a task and it will get done better than you could do it yourself.

Rachel will be attending Penn State.

Our fourth scholarship recipient is Molly Leiker.  Molly will be a 2015 graduate of Hough High School.  Molly possesses Kenan's traits, as well.  She is a scholar, an athlete, and gives back through community service.  Molly loves to travel and has an adventurous side that allows her to experience new places, try things that are unfamiliar, and adapt easily to new environments. She thrives on competition, whether it is in the classroom or on the athletic field.

Molly will be attending the University of North Carolina at Chapel Hill and will be a Carolina Tarheel!

Thank you to all who have contributed to Kenan’s Scholarship fund.  As you can see, you have helped four amazing young women in Kenan’s honor!  We look forward to another scholarship year, next year.

Thank you all for loving our Kenan!

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!