The following was written by Deanna & Kevin Rupp, Felicia's parents, as a way to share the experience with everyone.
Felicia was a very brave young lady, battling cancer not once but twice in her short life time.
In April of 1993, when she was just seven years old, she collapsed at school and was subsequently diagnosed with a cancerous brain tumor. After removal of the tumor, she endured a summer of intensive chemotherapy, six weeks of daily radiation and then a year of "maintenance chemotherapy". She was then considered "off treatment" but not "in remission" due to the fact that her cancer was an adult type of cancer (glioblastoma multiforme). That meant that she had to go at least until she was 18 to be considered in remission.
Felicia then struggled and perservered to get back into school and the normal life of a young girl, and she did it with such determination we were blown away! She continued "off treatment" and surpassed her five-year mark of being "off treatment" in April of 1998. We were thrilled but knew that we had to make it to her 18th birthday to feel totally "out of the woods". That day would not come.
On July 25th, 1998, Felicia came down with a stomach bug, which usually ends after 24-48 hours...hers just wouldn't subside. After four days of continuous vomiting and diarrhea, we took her to Hershey Medical Center to be seen by her oncologist. They admitted her routinely to hydrate her and run some blood tests. The results were devastating.
Less than 48 hours later, a bone marrow test, a spinal tap and too many blood tests to count, we had concrete results---Felicia had "secondary leukemia", a second cancer.
As we broke the news to Felicia, her first question regarding her upcoming treatment (chemotherapy) was "Will I lose my hair again?" Our answer was "yes". She had just turned 13 years old, had just celebrated the five year anniversary of the removal of her brain tumor and was looking forward to starting school in another month. Instead, we were telling her she would most likely be spending the next two months in the hospital due to the length of time it would take for her blood counts to recover after the chemotherapy. She took this news relatively well, although a little quiet, with few questions.
The day after we broke this news to her, she began the 10-day cycle of chemotherapy. From this moment on, Kevin (Dad) spent most of his time at the hospital, spending every night there on the "bed" built in for parents (but not made to sleep on too many nights in a row)! His dedication and devotion to Felicia were amazing!
She tolerated the medicine fairly well, with the usual vomiting. She was still fighting the virus that brought her into the hospital in the first place and was in the bathroom more than she wasn't. She was getting weak but still had her sense of humor. She always perked up when she had visitors, especially her five brothers and sisters. She especially loved seeing her newest addition to the family, her baby brother Lawrence, who was now 9 months old.
Somewhere between the first and second week, a small tattoo-looking circle appeared on her upper left arm. Dermatologists were called in to test it and it continued to grow and grow and it was determined that it was most likely a fungal infection, which can occur in patients with low blood counts. Her primary oncologist told us that this could be threatening if her blood counts didn't start to go back up to fight this infection. In the next couple of weeks, the spot on her arm grew larger and more tender until it was giving her a lot of pain. They ran tests over most of her body trying to determine if the fungal infection had spread anywhere. After several xrays and tests, spots were found on her lungs.
Approximately two weeks after finishing her chemotherapy, Felicia's hair started falling off...it was literally everywhere and it was driving her crazy. It was itchy, it was messy and just a pain in the butt, as Felicia put it so bluntly! She decided that she wanted Dad to buzz it so at least her hair would be short strands falling out. Upon buzzing her hair, she wanted to do "something crazy", to use her words, and we decided to get a temporary hair color and dye her hair. She wanted purple but settled for blue because the only purple coloring we could find was permanent! One afternoon, we dyed her hair blue (see above picture), put her in a wheelchair and paraded her down the halls, where many doctors, nurses and passers-by stopped to comment on her blue hair. It brought a smile to her face that we hadn't seen for a while and she loved the attention! The funniest thing is that although this color was "temporary", her scalp stayed blue for weeks after all her hair fell out. It even stumped new doctors and nurses who would try to consider the reasons that her scalp had turned blue! We really had fun with it!!
About this time, approximately four weeks into her hospitalization and three weeks post chemotherapy, Felicia's blood counts were still not coming up and she was getting weaker and weaker. They began transfusing red blood cells, white blood cells and platelets daily, hoping to help her blood counts recover. She was running high fevers and incoherent much of the time that she was awake, which was less and less. On August 29, Felicia was transferred to the Pediatric Intensive Care Unit (PICU). She spent the next nine days in PICU where she had erratic heart rates, low blood pressure, high fevers, and problems urinating (kidney and liver function problems).
They were able to stabilize her, although she was not really awake any more. She was moved back to a room in the oncology wing yet still considered in "Intermediate Care", so she required more care and assistance from her nurses. She was now in diapers and she needed to be changed and repositioned every two hours to avoid her getting bed sores. This was the part of her treatment she hated the worst...and she let whoever was changing her know how she felt! About this time, they confirmed the spots on her lungs as "fungal pneumonia" and also found some spots on her brain stem, although they weren't going to do a lot about them until her blood counts started to show some improvement. She remained in this wing for another week until she was once again transferred to PICU, where she spent another week battling her blood pressure going too high or too low and daily high fevers. She was still receiving the three different blood transfusions daily but there were no signs of her blood counts recovering.
On September 22, Felicia was moved back to the oncology wing to the original room she was first hospitalized in. A few days after being transferred back to this wing, her primary cancer doctor talked with us about the measures we want taken if and most likely when her organs began to fail or she had trouble breathing. This was one of the hardest moments of Felicia's hospitalization. She wasn't really with us any more because she hadn't been awake for so long, yet this was concrete proof that she most likely wouldn't come back to us. We listened to the doctors recommendations and expectations for Felicia and then spent the rest of the afternoon discussing our wants and hopes for her. We were told that the longest anyone has gone until their blood counts had recovered with the type of chemotherapy she had received was five weeks....Felicia was now at eight weeks with no signs of her blood counts recovering. Upon hearing that, we made the final decision to put a "Do Not Resucitate" order in her chart and decided that no matter what, we didn't want her transferred back to intensive care.
This was probably the time we prepared our other children for Felicia's imminent death. Ranging in age from 11 months to 13 years, it was a difficult thing for us to explain and it was a difficult thing for them to hear. Our oldest daughter, Monica, who is just four months older than Felicia, cried at first and then decided she would spend all the time she could with Felicia before it happened. For the last few weeks, our visits with Felicia were usually without the kids because she wasn't awake to know they were there and there wasn't a lot for the kids to do for hours at a time. After telling the kids Felicia's prognosis, they all went to the hospital for another visit to actually talk with Felicia and see her, although she was still not awake and was still hooked up to all the machinery. Our 6-year-old daughter was scared seeing her sister this way and it was hard to see her reaction, but it was quite understandable. Monica spent the next weekend by Felicia's bedside talking with her and fluffing up her pillows and arranging her bedding. It was heart-breaking to watch, a loving sister saying a final goodbye to her best friend.
On Thursday, October 1, 1998, at 9:10pm, Felicia died and went to heaven. Kevin was with her, as he was through her whole hospitalization, and he was there as her breathing became labored and he told her "Felicia, if the angels have come for you, you'd better go!" What a loving father and compassionate man. Kevin called two women from our church who had been close to us throughout Felicia's illness in order for them to come to the house and tell me in person about Felicia, and so I wouldn't be alone when I got the news and woke the kids to give them the news. I appreciated that gesture more than he'll ever know. As I went from bedroom to bedroom, telling the kids and telling them to get dressed, it wasn't very real yet.
We made the final drive to Hershey Medical Center to say goodbye to our daughter, our sister. We got there close to midnight and were greeted in the hallway by Kevin and two of Felicia's favorite nurses, along with some other nurses. As we entered Felicia's room, we found her lying peacefully on her bed with the lights turned down low, no machines connected to her and her favorite CD "Dreams of Angels" playing in the background. She looked so peaceful and at rest that I was glad we had all come to see her.
As we made arrangements for Felicia services, we decided that she would not want everyone sitting solemnly in the church crying. Felicia's life was a story to tell and a life to celebrate and that's exactly what we did. We called it "A Celebration of Life". Complete with purple balloons and MAKE-A-WISH Foundation clowns, the atmosphere was an uplifting one. Felicia's fellow classmates from Ephrata Middle School sang a moving rendition of "Amazing Grace" and four different people spoke about her lasting memory in their life: her elementary principal, Mr. Tom Legath; her sixth-grade homeroom and language arts teacher, Mr. Paul Sellers; her primary care nurse, Ms. Amy Tubbs; and her loving father, Kevin Rupp. Our pastor also said a few words before the entire congregation listened to "ANGELS AMONG US" (by Alabama). It was a very meaningful way to say our final goodbyes, and our final thank yous....for making life so joyous and for helping us realize how precious life really is.