For Joey Cibella
Donation protected
Our story begins August 13, 2002 in Lewiston, New York. Our first child, a son respectfully named Joseph Jr. after his father, was born a beautiful healthy baby. Fast-forward almost six years and my husband and I were driving our son back to the hospital where he was born. While home visiting family on vacation Joey, as family and friends know him, seemed to be having trouble with his eyes. We noticed over the course of an evening his eyes would deviate to the corners. As a mom you instantly know something is wrong but don’t want to think the worst. Instead my husband and I thought maybe he needed glasses unfortunately like both of us. We were hoping it was just weak eye muscles. The uneasiness in my stomach grew that night, as the problem seemed to be gradually getting worse. The next day we dropped off our daughter and Joey’s younger sister Gianna by three years to another family members house and drove our son back to the hospital where he was born.
It seemed at first like we would get brushed off. We kept hearing you might need to follow up with his doctor in Florida where we reside. It seemed to take some persistence but a doctor sent Joey for a CAT scan and the gut instinct that we had been feeling was confirmed. The doctors found a mass in his brain. Because this hospital lacked an MRI department they transported our son by ambulance to Women and Children’s Hospital in Buffalo. He was just shy of his sixth birthday and we did everything we could to protect him. Joey had never been to the doctor for anything other than a check up or a common cold. We explained to him that the doctor was going to take pictures of his head to help make his eyes better. There Joey had an MRI done and doctors came in as family began to gather with us and broke to us the news that he had a brain tumor. A surgery would need to be performed and was scheduled for July 8, 2008. The doctors of course gave us the talk before surgery to explain the risks and as a parent it’s the last thing you want to sit and listen to as your son is about to be taken away for hours and all is out of our hands. Nothing can help prepare you for the wait while your son is undergoing such a surgery. After hours of waiting and an update or two the doctor came out to speak to us. All went as well as expected. He seemed to have all of his function intact. Relief comes in waves. We were blessed and thankful for a successful surgery however, we now had to wait for biopsy results. About a week later the doctor called me to say his tumor was benign but because of the grade he wanted to go back in and remove more of what he felt was left behind. Ten days later Joey had his second surgery. Doctors then felt confident that they were able to remove it all to the best of their knowledge. The healing process began again for Joey and we were able to return to our home in Florida to fully recover and start school on time as a First grader.
Joey was closely monitored every few months with repeat MRI’s. Four years went by and I received a call while at work after one such scan. His new doctors at All Children’s Hospital in St. Petersburg determined his tumor was returning. They said he would need to have another surgery. Crushed, heart broken, and scared cannot begin to describe my feelings. Breaking down at work and having to call my husband and deliver this news was the hardest news I’ve ever had to give. That is until we both had to explain to our son that he would need to undergo a third surgery. This surgery was scheduled in July 2013. Again his doctors were confident everything was removed and no other treatment was necessary. A time of calm eventually returned to our lives but only for 7 months. In February 2014 Joey then a Sixth grader came to my classroom in a panic. He said his hand wasn’t doing what he wanted it to do. When he raised his left hand my concern grew knowing his tumor was always on the right side of his brain. I immediately called his doctors and they wanted us to drive up for another MRI. His doctors and hospital are two hours away from our home in Fort Myers. That ride seemed the longest it had ever been and all the while we tried to reassure Joey. After his scan the doctors wanted to speak to my husband and I. Right away you know the news is not what you want to hear. Joey’s tumor was once again back and they wanted to schedule his surgery in the coming days. They also advised us he would need radiation to follow. Joey had his fourth surgery and began radiation in March after his incision had time to heal. He never missed a beat. Joey returned to school a few weeks later and attended all the while going through 30 radiation treatments. He finished in the beginning of May. We were relieved he handled treatment fairly well. His biggest complaint from them was being very tired. Summer came and went and his scans following this surgery seemed to be showing the radiation was doing the job it was suppose to do, get rid of any remaining tumor. And then this past December, four days before Christmas, Joey woke up with a bad headache and trouble with his left hand. Thinking it was possibly a seizure or swelling from the radiation we took Joey back for a scan to give him peace of mind before the holidays. We were shocked to learn his tumor was back and bigger than it had ever been. Joey underwent his fifth brain surgery December 23rd. The doctors could not remove the entire tumor this time due to its size. Following this surgery he was unable to repeat radiation because of the time needed to recover from the doses he received earlier in the year. He is currently going through chemotherapy as part of a clinical trial at our expense. These treatments are one day a week every two weeks and could possibly last up to two years. We drive four hours to and from our home for him to receive his treatment, which takes almost five hours to administer. As part of his treatment he also takes chemo at home for five days every month. This last surgery did affect function of his left side. He does receive Occupational Therapy to help build strength and improve function. All the while Joey has continued to attend school and maintain a 3.5 and higher GPA in his advanced classes.
The strength and courage our son Joey has shown us all considering everything he has and continues to go through is inspiring to us. We get our strength from him. My husband and I were opposed at first to starting a Go Fund Me campaign when family approached us with the idea. We are too proud to ask for help. However, there comes a time when we need to put our pride aside and financially we realize we cannot pay off this continuous growing debt on our own. We are so thankful for what all the doctors and hospitals have done for our son and family. Words can never express our gratitude for the care, love, and compassion shown to our family. We want to be able to be pay back and maintain all of our financial obligations both past and ongoing for our sons care. Our family is grateful for all the support and well wishes for our son as he continues to receive treatment. It is our hope and prayer every night that our son Joey will one day soon move past all this. We appreciate with all our hearts any donations made to this campaign.
It seemed at first like we would get brushed off. We kept hearing you might need to follow up with his doctor in Florida where we reside. It seemed to take some persistence but a doctor sent Joey for a CAT scan and the gut instinct that we had been feeling was confirmed. The doctors found a mass in his brain. Because this hospital lacked an MRI department they transported our son by ambulance to Women and Children’s Hospital in Buffalo. He was just shy of his sixth birthday and we did everything we could to protect him. Joey had never been to the doctor for anything other than a check up or a common cold. We explained to him that the doctor was going to take pictures of his head to help make his eyes better. There Joey had an MRI done and doctors came in as family began to gather with us and broke to us the news that he had a brain tumor. A surgery would need to be performed and was scheduled for July 8, 2008. The doctors of course gave us the talk before surgery to explain the risks and as a parent it’s the last thing you want to sit and listen to as your son is about to be taken away for hours and all is out of our hands. Nothing can help prepare you for the wait while your son is undergoing such a surgery. After hours of waiting and an update or two the doctor came out to speak to us. All went as well as expected. He seemed to have all of his function intact. Relief comes in waves. We were blessed and thankful for a successful surgery however, we now had to wait for biopsy results. About a week later the doctor called me to say his tumor was benign but because of the grade he wanted to go back in and remove more of what he felt was left behind. Ten days later Joey had his second surgery. Doctors then felt confident that they were able to remove it all to the best of their knowledge. The healing process began again for Joey and we were able to return to our home in Florida to fully recover and start school on time as a First grader.
Joey was closely monitored every few months with repeat MRI’s. Four years went by and I received a call while at work after one such scan. His new doctors at All Children’s Hospital in St. Petersburg determined his tumor was returning. They said he would need to have another surgery. Crushed, heart broken, and scared cannot begin to describe my feelings. Breaking down at work and having to call my husband and deliver this news was the hardest news I’ve ever had to give. That is until we both had to explain to our son that he would need to undergo a third surgery. This surgery was scheduled in July 2013. Again his doctors were confident everything was removed and no other treatment was necessary. A time of calm eventually returned to our lives but only for 7 months. In February 2014 Joey then a Sixth grader came to my classroom in a panic. He said his hand wasn’t doing what he wanted it to do. When he raised his left hand my concern grew knowing his tumor was always on the right side of his brain. I immediately called his doctors and they wanted us to drive up for another MRI. His doctors and hospital are two hours away from our home in Fort Myers. That ride seemed the longest it had ever been and all the while we tried to reassure Joey. After his scan the doctors wanted to speak to my husband and I. Right away you know the news is not what you want to hear. Joey’s tumor was once again back and they wanted to schedule his surgery in the coming days. They also advised us he would need radiation to follow. Joey had his fourth surgery and began radiation in March after his incision had time to heal. He never missed a beat. Joey returned to school a few weeks later and attended all the while going through 30 radiation treatments. He finished in the beginning of May. We were relieved he handled treatment fairly well. His biggest complaint from them was being very tired. Summer came and went and his scans following this surgery seemed to be showing the radiation was doing the job it was suppose to do, get rid of any remaining tumor. And then this past December, four days before Christmas, Joey woke up with a bad headache and trouble with his left hand. Thinking it was possibly a seizure or swelling from the radiation we took Joey back for a scan to give him peace of mind before the holidays. We were shocked to learn his tumor was back and bigger than it had ever been. Joey underwent his fifth brain surgery December 23rd. The doctors could not remove the entire tumor this time due to its size. Following this surgery he was unable to repeat radiation because of the time needed to recover from the doses he received earlier in the year. He is currently going through chemotherapy as part of a clinical trial at our expense. These treatments are one day a week every two weeks and could possibly last up to two years. We drive four hours to and from our home for him to receive his treatment, which takes almost five hours to administer. As part of his treatment he also takes chemo at home for five days every month. This last surgery did affect function of his left side. He does receive Occupational Therapy to help build strength and improve function. All the while Joey has continued to attend school and maintain a 3.5 and higher GPA in his advanced classes.
The strength and courage our son Joey has shown us all considering everything he has and continues to go through is inspiring to us. We get our strength from him. My husband and I were opposed at first to starting a Go Fund Me campaign when family approached us with the idea. We are too proud to ask for help. However, there comes a time when we need to put our pride aside and financially we realize we cannot pay off this continuous growing debt on our own. We are so thankful for what all the doctors and hospitals have done for our son and family. Words can never express our gratitude for the care, love, and compassion shown to our family. We want to be able to be pay back and maintain all of our financial obligations both past and ongoing for our sons care. Our family is grateful for all the support and well wishes for our son as he continues to receive treatment. It is our hope and prayer every night that our son Joey will one day soon move past all this. We appreciate with all our hearts any donations made to this campaign.
Organizer
Stephanie Santangelo Cibella
Organizer
Fort Myers, FL
