Our Kelley Christine Bula was born on August 14, 1988. She would be 33 now. In January of 1992, when Kelley was 3-1/2 years old, she was diagnosed with a brain tumor – a PNET (primitive ectodermal tumor) in the pineal region of her brain. We went to Georgetown Hospital and were under Dr. Packer and Dr. Reaman’s (Children’s Hospital) protocol. Kelley had surgery within that same month to remove the tumor, then had 3 months of chemo followed by 8 weeks of radiation. Because she was so young, Kelley needed to be still for the radiation treatments, so she was given “sleepy medicine,” as she called it. Although the radiation treatments took only a few minutes, we would have to wait in the recovery room for at least another hour or two for her to wake up and be steady enough to walk. She was in remission for about two years.
In August of 1995, right before her 7th birthday, the cancer was back – small spots all over her brain. Kelley went through more chemo at Georgetown then we were sent to Duke Hospital in Durham, NC. Kelley went through a trial where she had an autologous bone marrow transplant. It was a terrible time for all of us, especially poor Kelley. We also had our son, Brian, who was 6 at the time and a new baby, Mary Kate who was 1 year old at the time. Brian stayed home here in Maryland with Kathleen’s sister and brother-in-law, while Mary Kate was with us with babysitting help from friends in Elon College, NC. We lived at Duke Hospital and the Ronald McDonald House for about 2-1/2 months. It was a very hard time.
The last time the cancer came back (August of 1996), we were back at Duke where they tried intrathecal chemotherapy – which was the worst! Kelley didn’t tolerate that well at all – she ended up with a Bell’s Palsy and she lost most of her hearing. It was then that we were told to go home and spend the rest of her time together. Kelley died on January 18, 1997.
“Till we meet again, sweet angel, Kelley”
Age at Diagnosis:
3 1/2 Years Old
Type of Brain Cancer:
PNET (primitive ectodermal tumor)
Together we can save the lives of kids like Kelley.