Kortney had an unparalleled zest for life. She loved playing with friends and animals (stuffed or real) and enjoyed school at Wolf Hill Elementary in Oceanport, NJ where she was in third grade. Kortney loved basketball and played soccer, but her biggest thrills were at amusement parks and water slides. She was a daredevil with little fear and a spitfire who knew how to get her way. Her smile and laugh would brighten any room she entered or place she visited. She loved to play on her swing set and was always on the move to her next play date.
Kortney was the picture of health at her ninth birthday party on November 27, 2005 at Funtime America. In the second week of December she had a couple times where she came in from playing and laid on the couch saying her head hurt. They seemed to go away in about 10 minutes and she’d go back and play like nothing was ever wrong. This happened two or three times. A couple of days later she was outside playing in the snow and she looked up at me and I noticed that her left eye was crossed, turned inward. That day we had an appointment with an optometrist who said that sometimes the “sixth nerve palsy” can be caused by a virus and the eye may go back on it’s own, but just to be sure she ordered an MRI.
Monday, December 12, 2005 was the MRI. After waiting for 2 hours in a room full of only adults getting IVs (which was so frightening for her) the MRI technician came and asked Kortney, “You’re going to hold still for me right?” The doctor forgot to order sedation. We left there exasperated! The next day, December 13, 2005, we tried again at another hospital. Only they didn’t just sedate her they put her completely under with general anesthesia. (I’ve since learned that was totally unnecessary.) I was called to the receptionist’s desk in the middle of the waiting room and told over the phone by the doctor my worst possible nightmare!!!! Kortney had a very serious brain tumor in the brainstem AND they couldn’t operate AND she’d have to go for chemotherapy and radiation AND blah, blah, blah, blah….. I shut down, sobbed and hyperventilated in front of the full waiting room. That doctor should NEVER have told me over the phone!!!
We were referred to one of the top pediatric neuro-oncologists in the country in New York City, Dr. Jeffrey Allen. He gently told us the reality that basically there is nothing they can do for these tumors because they are inoperable. Radiation can buy her some time. He gave us two years for her to live with a less than 5% survival rate. Dr. Allen tried to explain what Kortney’s treatment would be like referring to radiation as “bright lights that don’t hurt.” Kortney did her usual, “Pfff I’m not afraid of bright lights.” Her biggest issue was that the kids at school would treat her like the “kid from the accident” again. Unbelievably Kortney was also in a life-threatening car accident in July 2002. She had a skull fracture and traumatic brain injury and we almost lost her then. She was unconscious for several days and in ICU for 8 days. For many months she received speech, physical therapy and occupational therapy. She did all of this while attending full day kindergarten. The girl was absolutely amazing!!!! The doctors say that the brain tumor had nothing to do with the accident and said, “Kortney was just struck by lighting twice!” We knew if anyone could fight the battle needed against a brain tumor that Kortney had proven from the accident that she was “one tough cookie.” Someone told Kortney she was “a tough cookie” and when things got challenging during treatment she would say “I’m a tough cookie!”
Luckily Dr. Allen referred us to one of the most caring and best doctors in the world, Dr. Jean Belasco at the Children’s Hospital of Philadelphia (CHOP). Kortney qualified for a trial which used a trial drug named Iressa in conjunction with radiation therapy. The benefit of using Iressa was the good quality of life it provided. Since no drugs work on a brain stem glioma we chose a drug that would give her the best quality of life possible. On January 5, 2006 Kortney started radiation therapy and Iressa. Aside from occasional nausea and a rash caused by the Iressa, she didn’t have many other side effects from the therapy. The first two weeks we stayed at the Ronald McDonald House in Philadelphia. Kortney had no one to play with during the day there. We went to the Philadelphia Zoo and the Franklin Institute, but it was overall pretty boring for a constant player like Kortney. We began driving back and forth daily for treatment. We got up at 5:00 AM for a 7:00 AM treatment. If they were on time for us, radiation only took 20 minutes and then it was in the car, Kortney napped and she arrived at school by 11:30 AM in time for lunch and recess. She was amazing!!!! Kids are so resilient! The second week of February she finished radiation and kept taking Iressa. The weekend after she finished therapy we went to the Great Wolf Lodge in the Poconos with some friends. I never wanted to go home and return to reality. Seeing Kortney so happy on those water slides was all I wanted forever! In mid March we went back to CHOP for a follow up MRI. Great news the tumor had shrunk all signs were positive. We knew the tumor would regrow unless there was a miracle. Regrowth usually occurs within 6-9 months so I felt like I had to do everything with Kortney within 6 months. We had a trip planned to The Atlantis in the Bahamas on April 8, a Disney Cruise planned for May through Make a Wish Foundation, and we joined a beach club for the summer where her best friend went. I lived every day just waiting for the “bomb” in Kortney’s head to go off. We were utterly shocked at how fast it did.
Kortney was the only one all packed for our Atlantis trip when in the evening of April 5 Kortney was complaining about a bad headache. She had been complaining for days about bad pains in her shins and arms. The next morning (April 6) at 6:30 AM she got up and began screamed in agony that her head hurt so bad. She couldn’t walk without my help and then became unresponsive. An ambulance took her to Monmouth Medical. I knew I had to get her stabilized so she could make the trip to CHOP ASAP. She was taken by helicopter to CHOP. They did all kinds of tests because were having trouble figuring out what was going on since her MRI from two weeks prior was good. Numerous tests were done to eliminate different scenarios. After four days she was stable enough for a MRI which confirmed everyone’s worst fears. The tumor had spread!
Not only did Kortney had one of the rarest types of brain tumors it also behaved in one of the rarest ways. It basically blew up everywhere in her brain and down her spinal column. She was in a lot of pain and having seizures so we made the choice to medicate her to make her more comfortable. Rich slept on the floor in a sleeping bag on a one inch matt and I was on a couch in the room at Kortney’s bedside for 21 days until she stretched her angel wings and flew away at 9:10 PM on April 27, 2006!
A Letter From a Teacher
On Tuesday December 4, 2007, I shared with my fifth-grade students your email about raising $75,000.00 for the Kortney Rose Foundation in 2007. I asked Kortney’s classmates to share about what she was like, as I really didn’t know her. Over four periods of classes and lots of smiles, these are many of the typical remarks made about Kortney:
- loved animals
- loved “Hello Kitty”
- always happy
- very spunky
- very fun to be around
- always wore pink and purple
- loved dogs
- loved Bratz dolls
- if someone was hurt, she would help them
- she held her pencil funny (lots of discussion about that)
- on the hyper side
- she shared
- she consoled someone who was upset
- loved recess
- liked math
- loved the word “ew”
- if there was someone new, she would reach out to them
What a legacy Kortney has left in her nine years. It was heartwarming to listen to her peers describe her.
Best to you all,