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Sep 6, 2018
Welcome to our CaringBridge site. It has been created to keep you, our friends and family, up to date with what's going on with our beloved Lukie.My Story is the introduction to our CaringBridge site.Be sure to read our latest news in the journal, view our photo gallery, and drop us a line in the guestbook. Thanks, Rick and Laura De Filippo
Luke is our "Little Engine That Could." In his short life of eight years, he's faced more challenges than many face in an entire lifetime. It all started when he was about six weeks old ( a few days before Easter , 2002). Laura was feeding him and noticed that he was turning blue. She immediately rushed him to the ER of our local hospital. The doctors realized he needed special attention and had him transferred to Children's Hospital of Phildalephia. What the doctors initially discovered was that he had a severe seizure disorder. Three months later he was also diagnosed with Neurofibromatosis I. It took a year and a half for his doctors to discover the cause of the seizures. A biopsy of his left temporal lobe confirmed the worst news our family ever received- Gliomatosis Cerebri, a rare invasive, non-operable and terminal brain tumor. He was given a few months to 2 years to live. Ironically, we learned all that right before Halloween, 2003. We decided we would not view this diagnosis as a death sentence and would fight it as long as it did not cause Luke further harm. Within a month, Luke started a year of chemotherapy. It was successful in keeping the tumor at bay. That was a long year. No hair loss or vomiting, but several overnight stays at the hospital due to high fevers, RSV, and pneumonia. Nine months after the chemotherapy, the tumor started to grow again. Chemotherapy started again with a different regimen that Laura could administer orally to him at home. This is now a "normal" part of Luke's life- one week on, three weeks off. When he was about six months old, he started early intervention at home to help with his severe developmental and physical disabilities. With the help of caring therapists, he made great strides. Everyone thought that he would never learn to walk because of his sever seizures. But he did. After two or so years or trying various meds, his seizures were finally under control. When he turned 5, he started full days at a special needs school, called St. John of God Community Services. It's amazing how much progress he has made. He will always have sensory issues because of the tumor. But, he is doing things no one ever imagined he'd be able to do. This summer he figured out how to climb stairs on his own. Luke is so vibrant and full of joy! That spirit rubs off on all of us. We have our moments of sadness and grieving. But he inspires us to carry on.
WOW! is it really 2012 already? Luke, and all the rest of us have grown so much since we began this journal... Luke has gone far beyond climbing up the back stairs on his own. He can even be in the back yard without me right on his heals. He has moved from the primary program at his school, to the elementary program. He knows his schedule day to day, and likes routine. He doesn't weigh much more than when we started here, but he's taller. The other boys have grown too. Aaron is just about to begin his fourth semester at college. He is getting mentally prepared for next year. He has to apply for a program at another school. Camden County Community College was a good jumping point, and it was paid for by his good grades. At this point he's talking engineering...he likes computers. I keep praying for him in his growing up. Life is good, but not always easy. Living at home is a challenge for us all. I keep reminding myself, that God has a plan. Caleb is now the tallest one in the house, and quite handsome if I do say so, myself. He's coming into his own. He spends time studying without being watched over, and his grades show it. He still doesn't love school, but I'm thankful to see him taking responsibility. He's mentioned lately, that he thinks he'd like to learn about welding... I can see him taking up a skilled trade. He loves his friends, and Camp Sunshine. Next summer he may apply to be a volunteer. Peter is NOW at the HIGH SCHOOL! And, though he likes it, he is struggling with focus and organization.... He has ADHD, and some anxiety issues. But the ever civic minded child that he is, he joined the community outreach club, and the art club and he goes most of the time when he remembers... Rick and I are growing...growing up, and growing in our relationship. This road is not always easy on a marriage, even the best of them. We have worked hard to make ours work, and to enjoy our life together with all of it's challenges. This year Luke hit some road bumps with his health, but he has come through it, and moves along living life fully, and teaching us all the way. Thank you, everyone for being with us on this journey.