My Daughter’s Legacy

Nicki’s life began on October 3, 1985 …

My precious newborn baby girl, Nicolette Beverly Leach, was perfect! I thanked God that she and her older brother Jesse, born two years earlier on November 15, 1983, were such beautiful, healthy children. A boy and a girl! Our little family of four was blessed beyond measure. I thanked God every day for my family and for my role as wife and mother. Nicki was a joy!

Her little body was so full of energy. She was quick to learn, eager and excited about life. Her bubbling, carefree laughter filled our hearts. She began preschool when she was three years old and was soon involved in gymnastics and dancing. Her daddy, Mike, taught her to play tennis when she was only 6 years old, but Nicki’s first love was the theater. As a toddler, Nicki would sit and watch movies for hours and then act out various parts – singing, dancing and performing to the delight and amazement of family and friends. At ten, she began auditioning for community theaters, and soon, she was performing regularly in roles such as Molly in Annie Warbucks , Lisel in The Sound of Music , and Amy in Little Women.

On and off-stage, Nicki’s personality sparkled. When a reporter from the local paper ask her what her future plans were, she replied she wanted to be in a movie or on Broadway “as soon as possible”. At 15, Nicki made a decision to attend a performing arts high school several miles away from our home In Ponte Vedra Beach. She chose the study of acting even though it would separate her from her many neighborhood elementary and middle school friends. As it turned out, she was destined not only to stay very close to her hometown friends, but to make great new friends at Douglas Anderson School of the Arts as she pursued her lifelong dream to perform.

A Shattered Dream … 

Douglas Anderson School of the Arts is a demanding high school where students must keep their grades up in order to have the opportunity to perform in any production. Nicki worked very hard to get the grades and land a part in any show that the school was doing. She also had a job at Publix grocery store after school so her days were very long.

In addition to school and work Nicki attended a weekly bible study at her church and sang with the worship choir and the high school youth band. When she started to show signs of fatigue we thought it was associated with her very busy schedule, but it wasn’t. She began to experience blurry vision and headaches. She became confused and her grades began to drop. Suddenly she couldn’t remember things. She told us she knew something was wrong, but she didn’t know what it was. She was scared, and so were we.

Nicki was vomiting and experiencing headaches when we took her to the doctor. We were told she had a virus and it needed to run its course, and we were sent home. She continued to get sicker and in the emergency room, Nicki was put on I.V. fluids for dehydration and given anti-nausea medicine due to continued heavy vomiting, but again she was told the virus just had to run its course. Her headaches worsened and she continued vomiting. At the office of our primary doctor, Nicki was so weak that she fainted and fell on the floor while waiting to be seen by the doctor.

Her head was still bleeding thirty minutes later when the doctor saw her, prescribed pain pills for migraine headaches and once again sent her home. Time and again, doctor after doctor sent her home. Nicki was so sick and weak when we finally drove her downtown to Wolfson Children’s Hospital in Jacksonville that we were afraid she was dying. It was there that a CAT-Scan of her head revealed a Stage Four Glioblastoma Multiform Brain Tumor.

Only Three Years to Live 

This is where it is so hard for me to write because our lives changed forever. Nicki had just turned seventeen. Now, she was informed that she had one to three years to live. Her doctor said that the tumor was too advanced to remove and a permanent shunt would need to be placed in her brain, extending to her stomach and draining her brain fluid. So began the reality of living with a malignant brain tumor.

During that first year, Nicki underwent a very dangerous brain surgery, six weeks of radiation, large doses of steroids, seizure medication, and respiratory breathing treatments, chemotherapy, various pain medications, stomach medication and anti nausea pills. The radiation caused hair loss. The steroids caused weight gain. The anti-seizure medication sent her into the emergency room several times. Then the tumor began to grow and she required another brain surgery – this time to remove some of the tumor.

The surgery was successful in that some of the tumor was removed, but two weeks later, Nicki’s brain started to swell and she was rushed once again to the hospital and put into intensive care. Our family was sent into a room in the hospital to talk with hospice, along with her doctors. We were told to say goodbye to Nicki because she would not make it out of the hospital alive this time.

Mike, Jesse and I slept in her hospital room for ten days waiting for her to die because that is what we were told was happening. On the tenth day, the doctors took her off of life support, telling us we had maybe an hour to say our final goodbyes. Instead, when the breathing tubes came out, Nicki woke up, sat up, and asked what was going on! She came home to us the next day and lived almost two more years.

And when I say she lived for two more years, that’s just what she did. To our amazement and everlasting joy, Nicki was able to go back to school for her senior year and graduate with her class. She even performed in one of the schools musical productions, and went to the senior prom!

Dr. Lee Beger, the chair of Douglas Anderson School of the Arts Theatre Department, said that Nicki “truly sparkled on stage” and had amazing abilities as a singer, dancer and actress, but what touched me the most was when Dr. Beger said Nicki’s classmates loved her and looked to her for guidance. “After Nicki became ill, one after another of her friends came to me, asking how they could help her because she had given so much to them,” Dr. Beger wrote. “We lost a star not only on stage, but more importantly a star that through her generosity of spirit guided us all.”

My beautiful Nicki certainly guided me through those hard years, always staying steadfast in her belief in God and the goodness of life, no matter how drastically things changed for her and for our family. Regardless of her challenges, Nicki was determined to live her life to the fullest. Her smile continued to sparkle and she never lost her sense of fun. She and her friends shared many happy times together, laughing and joking and making many good memories that summer after graduation. Then it was time for everyone to go off to college. Nicki had always planned to go off to college, but decided to enroll closer to home due to her continued cancer treatments. She became a student in the fall of 2004 at the University of North Florida. She informed no one at UNF about her illness because, she said, she wanted to “blend in.”

February 2005 

I continued to praise Nicki for being so strong and urged her to keep fighting. I could see that she was very tired, but I just didn’t want to let her go. As Nicki’s mom, I was certain that she was going to beat her cancer. I knew God would perform a miracle on my daughter and heal her. Nicki had been fighting for almost three years and had made it through some risky situations, but now the cancer was beginning to beat her and I just couldn’t accept that. I know now that when she looked at me and said, “Mommy, it’s hard,” she was telling me that the miracle might not happen and that I must prepare myself to face losing her, but I couldn’t (wouldn’t) see it then.

It was about this time that Nicki started having shaking spells and lost her ability to read. She began dropping things out of her hands and having trouble eating. Her body was unsteady and she was blind in one eye. When she tried to talk, the words she wanted to say were not the words that came out of her mouth. Another MRI revealed that the tumor was bleeding and growing. She had the most wonderful doctor at Nemours Children’s Cancer Clinic and he was always there to listen to what Nicki wanted. Now, she told him that she was prepared to go home to Jesus. We were all terrified, but Nicki was calm. She knew Jesus was waiting for her. 

Earlier, Nicki had been offered a wish from the Dreams Come True Foundation. She turned it down. She asked that it be given to another child at the clinic who was “really sick.” It touched her heart to see so many other children so sick with cancer. Even though her doctor said she was the sickest child he’d treated in his thirty years of pediatric oncology, Nicki’s thoughts were for the other children, not herself. She always downplayed her illness.

Nicki’s Final Days 

Photography was something that fascinated Nicki and she asked for a camera that last Christmas. She took it with her everywhere. When attendance at college became difficult due to short-term memory loss and weakness, she found great comfort in her camera. She took many beautiful photos of the beach, trees, insects, roads, paths, and sunsets – anything in the great outdoors. The images she took with her camera reflected the beauty she saw in every day of life.

As I noted before, Nicki didn’t tell her UNF professors or any of her fellow college students about her illness because she wanted to “blend in.” But Nicki was too special to ever just blend in. During her two short semesters at UNF, she made a lasting impression on her professors. Professor Joe Flowers called her “by far the best and brightest student in my class,” and, upon learning that she had died, said he was utterly heartbroken at the loss of someone “so young and beautiful and courageous and intelligent.” Nicki was, indeed, courageous.

She knew she was dying, but she never – not for one moment – stopped living. Although doctors had told her that her time was very short, and she could no longer read, talk or even walk without assistance, Nicki was determined to finish out her second semester at UNF by taking her final exams. Three years earlier, her brother Jesse had left his scholarship at the University of Miami to come home and be with Nicki while she battled cancer. Now, Jesse accompanied his sister to her college for the last time and walked arm in arm with her across campus to take her final exams. As she leaned her unsteady body on her brother’s strong arm, Nicki spoke haltingly, thanking Jesse for nineteen years of love and saying her own special goodbye to him. Two days later, Nicki went into a coma.

I can still feel her soft frail hand reaching out to mine and squeezing it so hard. I said, “It’s over Nicki”. Then she squeezed my hand again and I said to her,” Go into the arms of Jesus now”. One more time she reached out to me, our hands embraced, I whispered, “Mommy will be alright.” She dropped my hand. She was unresponsive. I felt relief. For the first time in three years I knew she would be alright. She looked peaceful and at rest. How could I feel relief? My daughter was gone! But I had told her I would be alright. She was waiting to hear those words from me and I will always keep my final words to my daughter, no matter what life brings to me.

During the three days she lay in a coma, many friends came to say goodbye but Mike, Jesse and I were the only ones with Nicki the night she took her last breath at Wolfson Children’s Hospital where she had spent so much of her time the past three years of her life.

My face was resting next to hers as she took her last breath. Jesse lovingly placed his hand over his little sisters heart, while the rapid beating became shallow, and suddenly stopped.

I gave my daughter a bath, as she lay lifeless. I dressed her in clean pajamas. We embraced and kissed our Nicki goodbye. The men who came to take her away arrived, and I ask them to be gentle with her, she was my baby. Mike, Jesse and I looked on as she was wheeled from the room, knowing that the next time we saw our Nicki, she would be in a coffin.

Don’t frown because it’s over … Smile because it happened.” 

When Nicki knew her dying time was near, she asked to see many of her special friends, but her time ran out before many of them could get home. One of her best friends, Ryan Glennan, was attending UCLA when Nicki died and even though he made many trips home to see her during her illness and took her to her senior prom, he was not there during her final days. At her funeral, Ryan gave an unforgettable eulogy for his “Nick, Nick,” calling her a gifted performer and talking about her quiet beauty and elegance.

He talked of how hard it was being so far from her while she was ill and of their many two hours phone calls, saying “Nicki’s long distance laughter could melt my heart.” Ryan talked about Nicki’s “silly side” when she and friends would have contests to see who could stuff the most grapes in their mouths or make the biggest splash in the pool. He talked of having a screaming contest with Nicki on a roller coaster in Orlando that “she won by a long shot.”

Finally, Ryan read Nicki’s words from a letter she wrote to him when he moved to California. She wrote, “Don’t frown because it’s over … Smile because it happened.” I know she was smiling from heaven as she heard Ryan repeat those words. In fact, I believe that Nicki knew her life would be short. When she was told that she had a stage four malignant brain tumor, she said to me, “I always wondered what my thing would be.” Could she have known about the legacy she would leave to others who are suffering from cancer?

Nicki’s Final Request 

One day during her last months on this earth, Nicki was sitting on the couch and happened to glance over and see me throw a “Race for the Cure” flyer into the trash. “Why’d you throw that away?” she asked me. When I answered, “I don’t run,” she just looked at me. “You could walk it,” she said. In the two years since she died, I’ve run every charity race for cancer that came along.

During one of our conversation together before Nicki lost the ability to talk, she thank me for helping her and said that I could help others who suffer from cancer. She reminded me that my dad died of colon cancer when he was only forty-eight and, as a result, she never knew her grandpa. Now, she said, she too was dying young. It was her wish – actually her assignment to me – that I do my part to help others who have cancer.

My daughter knew that I would keep my promise to her and be alright after she was gone … she knew one of the things that would make me alright and keep me busy would be the performance of a job assignment on her behalf. That job is to contribute anyway I can to help eradicate this terrible disease and to help teens and young adults who are living with this cancer. So many loving friends made Nicki smile. Now, the legacy of her beautiful sparkling smile lives on through the Nicki Leach Foundation and the good works we do in her memory.

October 3, 1985 – April 29, 2005 

Nicki is at peace and in heaven now. She is just around the corner from our earthly realm – and yet so near that I can still feel the warmth of her smile in my heart every day. As I promised her, I am alright. I never imagined I’d be devoting my life to this cause, but when I think of Nicki’s bravery and optimism as she battled her terrible illness and I remember how photography enabled her to see the beauty of the world.

I have come to believe that our loved ones leave messages to us before they pass on and that the dying help us to live on with purpose and honor. The Nicki Leach Foundation is dedicated to someday helping to eradicate cancer from the face of the earth and to bringing smiles to the faces of teens and young adults like Nicki who are battling the illness today.

We can all “Smile because it happened” if we make it happen. Nicki has never stopped smiling.

Bunny Leach