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

Treatment #6 tomorrow

I am back in Philadelphia getting ready for my 6th round of immuno in the morning. My Mom came with me this time and I am very happy she is here. Billy wants to be here so badly but I asked him to take a break this month. I really believe it is harder on him than it is on me when we come up here so I wanted him to have a little "time off." My Mom jumped at the opportunity to come with me and it will be good for Billy to save up some vacation time...and somebody has to be home to lead the kickball and dodgeball teams to victory! Tomorrow is Leap Day and my friend Rachael told me that she thinks everything that happens tomorrow is magnified by four. I think this is the case for those cancer killing drugs they are going to give me tomorrow!

Team Kenan Benefit was a HUGE success!

Thank you, thank you, thank you to everybody who came out an supported us at the Roost last Monday night!!!  It was an incredible success and I have no idea how it was put together in such a short amount of time.   It is clear that a lot of hard work and effort was put into this event.  The Roost was packed from 6-9 and our friends and family worked SO hard waiting tables, running food, bussing tables, etc!  Everytime I looked around the room I just couldn't believe so many people came out to support ME.  It was a very exciting and humbling experience.  My fight with ocular melanoma has made me realize what generous, selfless, and down right amazing people I have in my life.  They are teaching me to be a better person and I pray that one day I can pay it foward to someone else.

We raised over $7,000 at The Roost alone through tips, raffles and a silient auction.   Many folks who were unable to attend have mailed donations to the Kenan Koll Cancer Fund.  Thank you.  This money will be such a huge help to me as I continue to travel to Philadelphia for treatment and medical care.  At one point Dr. Sato mentioned a clinical trial which would require me to go to Philadelphia once every two weeks.  After he said this we were not quite sure how we would make it work.  Thanks to your contributions clinical trials like this are now a very feasible option!!  Of course, we hope that next time we will get the news that the tumors are no longer visable and I will not have to go down the route of a clinical trial.  At the same time it is very comforting to know that I am able to take that step if necessary!

Here are a few pictures from the Team Kenan benefit!!

 Our great friends/family/volunteers

 "Team Kenan" Shirts

My best friends from 7th grade, Christine & Katie, drove all the way to Charleston for the benefit!

TEAM KENAN BENEFIT...MONDAY FEB. 20!!!

Below is the "Team Kenan Benefit" flyer that Jen sent out on Facebook.  We are trying to spread the word as much as possible to see a great turn out.  Knowing that not everyone is on Facebook (thanks Sue), here is the information and flyer.  Feel free to pass this along to anyone.  We hope to see you at the Roost between 6 and 9 on Monday night! Thanks!

If you have any questions call Jen @ 843-864-6715


The Koll's address is:
1390 White Dr.
Charleston, SC  29407

it is good to be home!

We are back home in Charleston!

Yesterday, Dr. Gonsalves performed my 5th round of immunoembolization and she attacked the tumor on the upper left side of my liver hard.  She believes she was able to cut off the blood supply to this lesion and she said it was "glowing," which means the medicine attached to the tumor.  Once I was off of my 6 hours of bed rest they sent me in for a CT scan to make sure that they were able to hit the tumor.  After reading the results they believe they were successful!

I am suffering from some heartburn and fatigue but those symptoms should pass within the next day or two.  I just keep reminding myself how much worse the side effects could be!

I go back up to Philadelphia on February 29th for round #6.  That means I have 4 weeks off to live life as normal!  We are looking forward to all of the fun in store! 

Here is a pic of us in front of the famous Philadelphia LOVE sign:

A Message from Jetty!

Hi All,

Billy does such a great job of keeping an anxious family in the know while our Kenan is undergoing treatments. Thank you Billy!

Thank goodness for text messages! Billy sent me the sweetest picture text today and I wanted to share with everyone.


Thank you for all the prayers. Keep them coming, they are working!


Sue

The note says, "Good Luck today MOM. Love You"

PS. Don't worry, I'm behaving!

Treatment #5 in the morning

First, we want to thank everybody who has donated money, hotel points and airline miles to help us with our travel costs. It has been SO nice to come up here every month and not worry about the expenses. Also, thank you to everybody who has taken us to the airport and watched our dog, Jetty! You are helping me get the best treatment possible!! Thank you, thank you, thank you!

We met with Dr. Sato today and he gave us the scan results. The subcutaneous spot on my chest has grown slightly but you still cannot feel it through the skin. I have a new subcutaneous lesion on my bellybutton that is also very small, and he does not believe he can feel that one either. The subcutaneous lesions are not ideal but I am thankful they are located below the skin and not on a vital organ! One of the lesions on my liver has grown about 1cm and that is what we want to attack at full force. I will have my 5th round of immunoembolization tomorrow. Dr. Gonsalves (my interventional radiologist) will go after this spot in particular and try to cut off any blood supply to this lesion. The good news is that all of the other spots on my liver have shrunk or remain stable!

Dr. Sato is also prescribing me an anti seizure medication that has been shown to slow or halt the progression of ocular melanoma and, needless to say, I am very excited to try it! I will have another round of immuno next month to treat the other "half" of my liver. (My liver anatomy is a little different than most since I had a resection). After that I will wait a month, get scanned again, and come back up here to figure out the next step.

We will check into the hospital around 6 am tomorrow morning! Night night!

Black Out Night

On Saturday Billy and I drove to Aiken, SC to finally meet Meredith!  I have told many of  you about Meredith over the past few months and it was awesome to finally meet her in person!  Meredith is 24 years old and also battling metastatic ocular melanoma.  We both go to Philadelphia to see Dr. Sato and Dr. Gonsalves for treatment.

We have A LOT in common.  They say about 6 in 1 million people are diagnosed with ocular melanoma.  About 3 of those 6 people will have melanoma spread to another part of their body.  Unfortunately, we fall into that very small population. 

Get ready for the weird part...
We are among the youngest people to get diagnosed with this cancer. 
We were both originally diagnosed in 2009, within 2 months of each other. 
We both went to Hopewell High School. 
Our Dad's were fraternity brothers at UNC at the same time (Go Heels!)

The coincidences really make you wonder and our doctors are still shocked by all of the similarities!  I absolutely hate that the two of us are battling this terrible cancer but I am thankful that we have each other.  Meredith is the only person in the world who can understand what goes through my mind on a daily basis and she is a great support system! 


Meredith played basketball at USC-Aiken and every year they host a "Black Out Night" to honor her and to raise money and awareness for ocular melanoma.  I also got to meet another OM patient, Brian, who gets treated by my same doctor at Dook.  Brian was diagnosed in 2007 and thank the Lord he is cancer free to this day!  We are all left eye OM patients and it was cool to share stories and experiences with them.  

My next appointment with Dr. Sato and the team is scheduled for 1:30 pm on Monday.  I got my MRI and CT scans done in Charleston this past Monday and I sent them up to Dr. Sato to review.  These appointments are challenging because we don't know what to expect.  Billy and I try not to dwell on things and we live life as if everything is totally normal when we are at home...and we have a lot of FUN doing it! I continue to feel amazing and certainly nothing like a cancer patient.  I am confident that the news this time around will be just as good as it was last time.  I look forward to having a celebratory dinner with Billy on Monday night! 

Round Four is Done

She is done with round four and looks like sleeping beauty. She should be off of bed rest by 4:30 pm.

Dr. Gonsalves reported good news that she couldnt see anything new. Unfortunately she can't tell from the procedure if anything has shrunk more. She is optimistic as we are for more good news with the next round of scans.

We will get to see Dr. Sato later today to talk about future plans.

Thank you to everyone sending thoughts and prayers...it means the world!

Early Morning Run

We ran to the hospital this morning. Woke up to 15 degree weather with single digit windchill...oh the memories of waiting at the bus stop in Chicago. Hope this is the last time to be up here for a while.

We're here checked in at the hospital waiting to go back. I'll let you know when she is out. We can't wait to cheer on the Tigers to victory (wish we were in Miami).