It was the summer of 1997 and Christy was looking forward to starting first grade in a new school. A fun loving little girl, she was full of laughter and loved dressing up and having her hair fixed in all the latest fashions. Then a series of seemingly unrelated minor illnesses led us to her pediatrician, and within days, a diagnosis of a malignant brain tumor.
The treatment prescribed was surgery, 6 weeks of radiation, then 48 weeks of chemotherapy. The surgery was considered a ‘success’ as the neurosurgeon was able to remove 100% of the tumor, although it left Christy partially paralyzed on her right side. So in addition to the radiation and chemotherapy, Christy now faced years of physical and occupational therapy.
Christy was undaunted. She wanted to go to school and be treated like all the other kids. Realizing that she needed to be able to print all of her letters to start first grade, she taught herself to write with her left hand. In physical therapy she practiced walking up and down steps, carrying a tray, and getting up and down off of the floor. She started first grade with her class on August 25th, just one month after having surgery. Her body was swollen from the steroids and she had no hair, but she went to school every day with a smile on her face. Radiation appointments were scheduled after school and many afternoons were spent at the clinic receiving chemo, physical and occupational therapy, or blood and platelet transfusions.
In October of 1998 Christy completed her treatment protocol. MRI’s were required every three months, then every six months, then yearly. Christy continued to persevere. She overcame most of her physical deficits, but continued to write with her left hand. Balance related activities like riding a bike and skating were a challenge. Working harder than most (radiation to the brain causes a loss of IQ points), she consistently made the honor roll.
In May of 2003, Christy graduated from 6th grade. We were almost five years off treatment and for the first time in years began to relax. There was only one more scheduled MRI for October.
In August, our worst fears became reality as the tumor returned. This time it was in the brain stem which did not leave many viable treatment options. Doctors across the country were all in agreement that surgery or additional radiation to the brain stem was much too risky. Our only option was chemotherapy and it was doubtful that the chemo alone would be enough to eradicate the tumor.
For a second time, Christy had to deal with a brain tumor while getting ready to start a new school. The deficits, resulting from the biopsy that confirmed the recurrence of medulloblastoma, were to the left side. Realizing the amount of school that would be missed for chemotherapy, physical and occupational therapy, we decided to home school Christy for 7th grade. It was very important to her that she be able to rejoin her class in 8th grade.
The first two chemotherapy regimes did not work and the tumor continued to grow at alarming rates. We were advised that unless we found a drug to stop the growth, Christy would not live until Christmas 2003. Each time we had to tell her that the chemotherapy had not worked, her response was “Don’t worry mommy and daddy, it is what it is.”
We were quickly running out of options. Finally, a combination of the last drug available and an alternative treatment stopped the tumor’s growth and then began to shrink it. After several cycles of this combination, in May of 2004, it was time for the final assault, a stem cell transplant. It was hoped that the high doses of chemotherapy given as part of this process would be enough to finally rid Christy of the remaining tumor.
A stem cell transplant is a tremendously grueling, painful process. But as she had so many times in the past, Christy accepted the challenge and was ready to do whatever it took. While in the isolated unit, she painted a sign that became her mantra. “Can she do it? Yes she can!”
The post stem cell MRI held good news; the tumor was almost gone. Our oncologist told us it was time to celebrate. We started making plans for Christy to rejoin her class in 8th grade.
We knew that 8th grade would be a challenge for Christy. Once again bald, using a walker to navigate between classes, Christy rejoined her class on August 21, 2004. She still faced several physical challenges. The damage caused by the tumor pressing on her brain stem for so long was not reversible. Even with the walker, she fell a number of times. Her writing was laborious as a result of the side effects that now affected the dexterity of both hands. Yet, to Christy, she was back on the road to becoming a normal thirteen year old.
September 15, 2004, our world changed again as we received the results of Christy’s latest MRI. Instead of continuing to shrink, the tumor had started growing. We were out of options. Experimental drugs available outside of Jacksonville would prolong her life by a matter of months. There was no hope for a cure. Without any treatment, Christy had 2 months to live. With Christy’s input, we made the decision not to pursue additional treatment. The most difficult thing we have ever had to do as parents was to tell Christy that the cancer had returned and that she was going to die.
After her initial shock, Christy accepted God’s plan for her. We made a list of the people she wanted to see and the things she wanted to do before she died. We made the most of the two months we were given. Friends and relatives came to visit and say their goodbyes, and we went on a cruise. Christy swam with the dolphins, scuba-dived, and spent time at Universal Studios.
But God had other plans for Christy. Her life continued well past the two months she was given. We believe that she still had more to teach and more lives to touch. This additional time was by far the most difficult challenge that Christy had to face. The unknown of when and how death would occur caused tremendous anxiety. She rarely slept through the night and there were many games played at 3 a.m. to provide distraction for her troubled mind.
On May 15, 2005, eighteen days after her 14th birthday, Christy entered eternal life. She lived six months longer than originally expected.
Throughout her life, Christy was known for her enduring smile in the face of adversity, her love of laughter, games, and art and crafts. As a tribute to her, we established the Christy Fund to help other children facing a childhood cancer diagnosis. The goal of the Christy Fund is to ensure that funding will always be available for the Child Life Specialist position at Nemours Children’s Specialty Care. The Child Life Specialist brings smiles to children battling cancer by providing activities for kids enduring hours of clinic treatment, by visiting schools to help cancer kids re-assimilate, and by visiting terminal kids at home. She eases the ordeal for kids battling cancer.
The Child Life Specialist is the flagship program of the Child Cancer Fund and was the genesis for the formation of the fund in 1994. Up until now it has been funded annually through contributions and fundraising events. The goal of the Christy Fund is to build enough assets in a restricted account to be able to fund the position through investment earnings alone.