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!

A Mom's Perspective

Kenan and I are home from our trip to Philadelphia.

The news from Dr. Gonsalves was positive. Dr. Gonsalves did not see any new growth and she gave Kenan another good dose of cancer killing medicine to her liver. Dr. Gonsalves seemed pleased with her work. We did not see Dr. Sato this trip; he was in Japan.

Kenan was a champion. She is an excellent patient! Once we were checked in and she was waiting to be taken back for her procedure, Kenan had numerous nurses, aides, and technicians helping with her prep work. They all greeted her warmly and welcomed her back. Person after person asked where you were Billy. Hopefully, I did a sufficient job substituting this trip. I certainly am no nurse Emily, but I was happy to fill in this trip. My favorite text from Billy this trip was the following: “Thanks for taking my place this trip…I don’t know if it’s easier on this end though”. Ahhh, what a great guy! You did a good job Mom and Dad Koll!

Thanks to all who follow Kenan’s story on her blog. I know I have written it before, but she is a remarkable young woman. I can tell you from first hand experience, I could not be as brave, polite, or kind as Kenan if I were the patient. Her strength, tolerance, and fortitude are incredible.

Kenan and I had some interesting experiences and met a lot of unusual “characters” during our travel trip this time. Kenan’s favorite was “Barbara times 2”. And we got caught up in the flight delays at the Philadelphia Airport on Thursday when the civilian drove his jeep onto the airport runway. We didn’t know the details at the time, but his shenanigans disrupted an airport full of travel plans. These all make for good stories as we now return home. Those of you who know the Colbert family, know that we loooove to tell stories. Kenan and Pete both have helped to create a lot of great subject matter for us through the years. There is nothing better to Kenny, Kenan, Pete, Billy and me then to tell Aunt Karen a good story when her mouth is full! Food goes everywhere, ‘cause she just can’t help but laugh out loud – no matter how lame.

Another highlight for me on the trip was to watch my very organized daughter, plan a dinner long distance. Recently, Kenan and Billy decided to “pay it forward”. There is an organization in Charleston called the Hope Lodge. The Hope Lodge offers cancer patients and their caregivers a free, temporary place to stay when their best hope for effective treatment may be in another city. Not having to worry about where to stay or how to pay for lodging allows guests to focus on getting well. Kenan recently called the Hope Lodge to see how she could help. They told her she could volunteer to serve a meal once a month to guests staying at the Hope Lodge.

Kenan began organizing a team to help provide dinner for the Hope Lodge. She enlisted the help of dear friends, Emily, Liz, Rachel, Jen, Kristy, and Billy. Since Kenan’s days as a middle school Davidson IB student she has possessed a desire to give back to others. Throughout high school, college and now as a young adult, Kenan is still giving back. Well, wouldn’t you know it, but her first dinner at the Hope Lodge was scheduled for Wednesday, February 29th, when Kenan was in Philadelphia getting her own treatment. It was quite the production to observe Kenan directing Billy over the phone on Tuesday night for the final meal preparations. Although Kenan was a little groggy when the results came in from Billy, we understand the meal was a success.

In closing, thank you for taking this walk with us. We appreciate you all for catching up, your continued prayers, phone calls, cards, donations of money, hotel points, airline miles, Jetty sitting, and positive support!

Thank you, Thank you!

Sue (Kenan’s Mom)

Billy, Kristy, Jen, Jaxon, and Rachel at the Hope Lodge