Below is the story of Billy that was told by his brother, Joey about how Billy’s diagnosis impacts his life.
November 2012-Billy was diagnosed with an inoperable brain tumor at the age of 14 months.
My name is Joey and I am 7 years old. I live in Hillsborough (Millstone) with my mom and dad, along with my twin brothers Michael and Billy who are 15 months old. My parents waited a long time to give me a brother or sister, but instead of just one, I got two! They are growing so fast and are getting into everything. I just cannot wait until we can all go outside and play ball together.
Michael is climbing, walking, and even saying words now. He reaches up for his cup, plays in his Jump-A-Roo, and even tries to steal my toys! When I tell him “No”, he gets really mad and starts to cry. But Billy is different. He used to like to sit up and try to say words and then one day, he just stopped. My parents took him to the eye doctor who gave him glasses, but that didn’t work. When Michael was walking at their first birthday, Billy just sat there smiling, not saying a word. I would call him by name and he would not turn around, while Michael would turn around right away. We know he can hear because when he was sleeping, he would hear the floor creak when I would walk by and he would wake up. My mom and dad took him back to the doctor. This time he had to go see a specialist called a Neurologist. This doctor did special tests on Billy’s brain.
Then one day a couple of weeks before Thanksgiving, Billy had to go to Morristown Memorial for a really big test called an MRI. My mom and dad were worried because he had to be put to sleep. But the worst came when a whole bunch of doctors came in to the waiting room to tell my mom and dad they found something called a tumor.
Billy’s tumor is not the like normal ones. His is pretty big and the doctors say they cannot take it out. It’s like a spider’s web, wrapped around all the important parts of the brain. The doctors did this test called a “Needle biopsy”, to find out exactly what kind of tumor it was, but even after that they still couldn’t tell what it was. My parents took Billy to all sorts of different doctors, and everyone said the same thing. “We don’t know, we have never seen anything like this,” or, “He needs more testing”. Ugh!
Right after Christmas, Billy and my parents met with another kind of doctor called an, “Oncologist”. He treats people who have tumors and cancers with special medicine. It’s supposed to make the tumor get smaller, but it can also make you really sick. Just last week Billy had to get a blood transfusion, then a few days later he got a fever and had to spend two days in the hospital. He even takes special medicine so he doesn’t throw up. Michael and I are sad and pretty scared. We hate seeing our brother so sick all the time. Sometimes we hear our mom and dad crying…..the whole thing makes us so mad and sad, that we cry too because there is nothing we can do.
So that is why I am writing you this letter with the help of one of my friends. I want you know how much we love Billy and would do anything to help him and my parents. Please join me in surrounding my family in love and saying a few extra prayers for my little brother.
– Joey Biviano
January 2015
After his diagnosis, Billy underwent 15 months of chemotherapy (40 treatments) at the Cancer Institute of New Jersey. 40 treatments was the allowable amount for someone his age at that time. MRIs indicated the tumor was no longer growing but that it was also no longer responding to the treatment or shrinking. Due to the secondary risks and treatment restrictions due to Billy’s young age, chemotherapy was stopped and his port was removed. Billy’s family took him to Memorial Sloan Kettering where a pediatric oncologist agreed with the treatment plans. The Biviano family began to live their life in 3 month segments, MRI to MRI, and on absolute prayer.
An MRI in November of 2014 showed the tumor was enhanced. An MRI in January of 2015, showed more enhancement but also growth. The Biviano family is now at a crossroads with Billy’s condition. Billy’s tumor cannot be biopsied due to the location which makes knowing the best way to treat it difficult. In February, doctors diagnosed the tumor with 95% certainty as a PMA (pilomyxoid astrocytoma), a type of brain tumor only first discovered 16 years ago. The number of cases where children have PMA are currently unknown.
His last MRI in March showed no growth, which doctors explained that because the type of tumor is slow-growing, it could show up as no growth in an 8-week time frame. His parents have many decisions to make and there is pressure to make the right decision. Billy’s parents are scared, anxious and frustrated. They are praying that God can help point them in the right direction, one that will help Billy more than hurt him.
March 2016
Doctors at NYU labeled Billy’s tumor as a Pilomyxoid Astrocytoma tumor, or PMA for short. Based on this designation, NYU and CINJ jointly came up with a chemo regimen that we were hesitant to start him on. Further, his MRI from July showed that the tumor increased in size yet again, making chemo almost inevitable. Yet, we pressed on to explore other safer options.
We visited over the summer with a radiation oncologist, but it became apparent that Billy was too young for radiation. We visited the National Institute of Health where we met with Billy’s original oncologist. Billy doesn’t qualify for any trials at this time. He did say that the newly developed chemo regimen sounded reasonable.
We then visited with experts at John Hopkins University, where the PMA designation was founded. They agreed that, with it being inoperable and radiation not a solution, the chemo regimen was the way to go.
So in early October, Billy began a 48-week regimen of chemotherapy from home. 3 different drugs, given to him around the clock for a four day period, every 6 weeks. His December MRI showed that the tumor did not change from July’s results.
Billy remains about 18 months behind developmentally because of the tumor/chemotherapy. He receives special preschool disabled learning classes, where he undergoes physical, speech, and occupational therapy. In April, he will begin Autism evaluation to see where he falls on the Autism spectrum. In February, his PT teacher at school began noticing a “slappy” walk with his left leg, confirming what we had seen as well. This is most likely a side effect from one of the three chemotherapy medicines he takes; something that only happens in 10% of patients who take this drug. It may or may not go away on its own, but it could get worse. He will now be taking on medical therapy, independent of everything he goes through at school. He has also been losing weight because of the Chemotherapy he’s on.
We try our best to get by on one income, which became more difficult when our insurance premium costs doubled this past October.
Yet through everything that Billy has gone through the past 3+ years, he continues to be this happy & affectionate boy who’s always dancing and smiling. To just look at him, you would never know that there is so much going wrong on the inside of our brave boy. He fights a battle with more courage and bravery than anyone we know. We are so thankful for everyone’s continued prayers and support of our Brave Billy.
July 2017
Billy completed a 48-week regimen of chemotherapy in the summer of 2016. However, several MRI’s since that time indicated tumor growth, particularly as it relates to his vision. An eye exam revealed 20/400 eyesight in his right eye. He also began to complain about headaches and his stability came into question. As a result, doctors and the family decided to proceed with a new regimen of chemotherapy. This particular chemo requires port access, so Billy has his port re-inserted in June 2017 and has begun a year-long regimen of chemotherapy.
Having a port means that any low grade fever (100.5 degrees), at which point Billy needs to be taken to the emergency room and get admitted to the hospital. This is done to make sure the port is not infected. This happened to him 8 times in 2013, and each time his stay was anywhere from 4-5 days. This also happened less than two weeks after his port was re-inserted, in early July.
This chemo regimen has been particularly hard on Billy. Loss of appetite, sharp pain in his legs (“peripheral neuropathy”), and fatigue have all plagued him. Yet, Billy takes it all in stride and with constant smiles.
He enjoys wearing his princess dresses, dancing to music, and watching kiddie videos on the computer. He is an absolute joy to be around and can light up a room with his smile & his laugh.
