In early December 2018, we took Kinsley to the doctor because she had redness in her right eye. After a week of being treated for what was believed to be just a typical case of pink eye, the redness didn’t go away.
Kinsley was not complaining of any pain or discomfort and showed no other signs that would cause concern but since the eye was still red, we sought a second opinion from an eye doctor. A family opthamologist determined that she had a detached retina and stated that it could be the result of trauma to the eye or something much worse such as a tumor.
We immediately took Kinsley that evening to be seen by a pediatric opthamologist who did an ultrasound to confirm the detached retina and look for any signs of a tumor. We were relieved when he stated “I’m 99% sure that there is not a tumor and the only reason I say 99% is because I never tell anyone 100%”.
Feeling relieved that a tumor was not found but still hopeful that the retina could be re-attached to restore Kinsley’s vision in her right eye, we drove to Miami, FL the following morning to meet with one of the top pediatric retina specialist in the country to determine if her retina could be fixed.
On December 18, 2018, a second ultrasound was performed and a second doctor stated “I don’t see any signs of a tumor”. As parents, we felt even more relief that now two different imaging tests and two different doctors had confirmed that Kinsley did not have a tumor. However, an evaluation under anesthesia was scheduled with the pediatric retina specialist the following day to determine if Kinsley’s detached retina could be repaired.
On December 19, 2018, the relief that we had just 24 hours prior came crashing down when the pediatric retina specialist found an advanced stage tumor in Kinsley’s right eye. We went from hearing the words “I’m 99% sure that there is no tumor” to our sweet four year old daughter being diagnosed with retinoblastoma - an extremely rare and aggressive eye cancer that could take her life.
"It was every parent’s worst nightmare. To hear your child has cancer is earth shattering, soul wrenching, and a true test of strength” - Kim.
7 am the next morning, we met with one of the top ocular oncologist in the country that treats retinoblastoma and a pediatric oncologist that would be managing Kinsley’s chemotherapy protocol.
In a matter of a few days, Kinsley went from a typical preschooler - enjoying her days of playing with friends and painting pictures to being put under anesthesia for 8 hours of extensive eye exams, laser treatment, MRI and port placement.
Just days before Christmas on December 21, 2018, Kinsley received her first round of systemic chemotherapy at Nicklaus Children’s Hospital in Miami, FL.
Just 2 days after being discharged and returning home to Sarasota, Kinsley developed some serious side effects to the chemotherapy and was admitted to John Hopkins All Children’s Hospital for the next 10 days.
A week later, we returned to Nicklaus Children’s Hospital for her second round of chemotherapy and evaluation to see how the tumor was responding to the first round of chemotherapy and laser treatment.
Kinsley’s ocular oncologist confirmed that the tumor was very advanced and complex. Due this advanced stage presentation, hemorrhaging in her eye and the life threatening risk of the cancer spreading to her optic nerve, orbits and/or brain, the decision was made to have her right eye enucleated (removed).
From January through March, Kinsley underwent 3 more rounds of systemic chemotherapy.
One month after Kinsley’s 5th birthday, she had her right eye enucleated and an orbital implant placed.
On March 1, 2019 we received the best news ever. Pathology results of the globe and optic nerve found that the cancer was completely contained to her right eye that was removed and Kinsley was considered to be cancer free.
Kinsley finished her last two rounds of systemic chemotherapy and rang the bell on April 26, 2019.
In between the last couple rounds of chemotherapy treatments, we met with an ocularist where Kinsley received a temporary prosthetic eye that she wore for 8 weeks before receiving her permanent prosthetic eye that was custom painted to match her other eye in May 2019.
In an attempt to avoid cabin-fever while receiving chemotherapy and being quarantined to our home, Kinsley took up a love of baking. She baked almost every day and her signature cookies were placed in neighbor’s mailboxes, dropped off at her school, and passed out to family and friends. Kinsley absolutely loved the joy that her cookies brought to others. Her cookies became very well-known amongst the community.
One day, she asked her dad if he would build her a cookie cart so she could sell her cookies and give the money to other kids that were fighting cancer like her. You see, Kinsley was in the fight for her life, yet still thinking of how should could help others.
Her dad, Adam, spent countless nights in their garage building her the perfect cookie cart.
“Hearing the words that our sweet girl had cancer was a time that I will never forget but I put my trust in God and the big plans he had for her. Building her cookie cart helped give me strength at a time when our family needed it the most because I knew that it would be a vehicle for her to inspire and impact the lives of so many other little warriors and their families.” - Adam
It was from there, that Kinsley’s Cookie Cart was born.
