Brave Billy's Journey of Hope
This story is about a special 14-month old little boy named Billy Biviano. I am very good friends with Billy's parents, Kristy & Vinny Biviano. Billy has two siblings: a twin brother Michael (who's also my godson), and a 7-year old brother named Joey.
Kristy and I met 3 years ago when my son was in Joey's Pre School Class. Even though I didn't know her that well, she always had a smile on. We finally met up for a play date and the rest is history. Kristy is like the sister I never had. I was there throughout her pregnancy with Billy and Michael. When Kristy & Vinny asked me to be Michael's Godmother, I was honored.
When Billy was 9 months old, his parents noticed something was wrong with his eye movements. They saw an ophthalmologist who said he had "horizontal nystagmus". He prescribed glasses for Billy in hopes it would correct the problem. Not long afterwards, his mom noticed some odd behavior from Billy. He babbled "mama" and "dada" for only a day or two before stopping and he was not acknowledging his name. Also, his overall lack of development was easy to notice when compared to that of his twin Michael. Growing increasingly concerned, his parents spoke to their pediatrician in early October, who got them an appointment with a pediatric neurologist the next day. Blood work, an EEG, and an MRI were all ordered. The EEG and blood work came out normal.
The MRI was performed on Nov. 13th.. On Nov 14th, the neurologist called Billy's parents into her office to deliver the unfortunate news. Billy was diagnosed with a brain tumor behind his optic nerve. It is called a low grade, Glio Neuronal tumor.
The tumor is inoperable and cannot be removed, both because of its bad location within his head and because the tumor is intertwined with normal brain matter. The doctors say his tumor is rare, and since they do not have any real case studies to compare it against, they are not even sure if chemo therapy will stop it from growing or what the long term affects of this tumor are for Billy. Doctors are hoping that chemo therapy will halt the tumor's growth until Billy gets older and can then maybe undergo a more aggressive form of treatment. Again, that's not guaranteed.
In a matter of 1 month, their lives have been turned upside down. This sweet little boy and his family have a very long road ahead of them. Your prayers and donations are greatly appreciated. Thank you for your kindness and generosity.
Billy's Journey will be updated frequently by either myself or Billy's family.
Posted by Carolyn Tighe
I just heard about a great fundraiser that's coming up in May for Brave Billy! The Manville-Hillsborough Elks has chosen Billy to be the sole beneficiary of their annual "Pig Roast for Alex". It is sure to be a fun day, and all proceeds go to Billy! Please come on down and meet our little hero, and have some great BBQ food at the same time! Please share with your friends and repost on social media. On behalf of the Biviano, thank you so very much for your continued support!
Posted by Carolyn Tighe
Just a quick update on our brave hero....
Billy's most recent MRI showed that even with the presence of chemo, the tumor did not change in size.
The overall feeling for is bittersweet as his situation has not changed since late December. The tumor is obviously putting up a fight against the chemo. His recent coordination issues with his walking seems to illustrate this.
A few days later, he received his 4 day stint of chemotherapy. He will receive it again in late April.
We pray that one day there will be a cure to wipe this tumor out. Until then we will continue to fight and never give up. Billy certainly won't have an easy life but with his good spirits, bravery and us supporting him, he will make it a bit easier.
We are thankful and grateful for everyone's support and well wishes for Billy. We ask that you please continue to keep the prayers coming as, unfortunately, our brave hero's battle against this tumor is far from over. But he is a fighter and will continue fighting for as long as it takes!
Thank you all again,
Posted by Carolyn Tighe
His MRI in July showed growth, and since it is still inoperable and Billy is still too young for radiation, the family moved forward with chemotherapy.
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 the parents 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.
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 this brave boy. He fights a battle with more courage and bravery than anyone we know.
Billy's mom still cannot work so she can stay home and care for Billy. They try their best to get by on just the dad's income, but that became even harder recently when their insurance premiums doubled in cost.
Please keep the Bivianos in your thoughts and prayers. Thank you for your support of Brave Billy and his family.
Posted by Carolyn Tighe
Billy had his appointment at the Rutgers Cancer Institute on Monday. The visit did not go as well as the family had hoped.
First, they have been noticing that his right eye looks "weak". His oncologist noticed this as well, and said it can be weak nerves and/or something caused by his tumor. It’s known that his eyesight is poor because of the tumor to begin with, but this is something new that's popped up recently.
Billy’s next potential chemo regimen was discussed, regardless of what his next MRI shows. Doctors said that he may be able to try something less intense than the plan outlined by doctors a few months back. His next MRI is Monday, July 6.
The last topic discussed was both hard to hear but also something the family had been suspecting since before his brain tumor was discovered. Before Billy was diagnosed with a tumor, the family had thought at first that he was autistic. Even throughout his treatment, he continued to show the signs of autism, but both his doctors and family thought that maybe his behavior was due to both having a tumor as well as the side effects of chemotherapy. However on Monday, the doctor said his development and behavior appear to be effected by something else besides his tumor (not chemo because he hasn’t had any in over a year). So they have now said Billy has autism. The family is saddened by this news and is having a hard time accepting the diagnosis, but they also trust what the doctor is saying & agree with it. Battling alongside Billy against his tumor continues to be hard enough, but now they are forced to deal with this other serious condition. Understanding that autism encompasses a wide spectrum & different levels of severity, he will be seeing a specialist later this month to see where on this spectrum he lands exactly.
As always, thank you for continuing to support our Brave Billy. Please continue to pray for our brave hero…
Thoughts and prayers for Billy and his family. God bless.
Keeping Billy and your whole family in our thoughts and prayers.
Dear Billy, your great great Uncle Harold passed away yesterday. I 'd like to think of now up there with God putting in a good word for you and sending blessings from above. Yesterday you and I had so much fun laughing, cuddling, clapping hands and playing tickle fingers. My heart hurts just thinking about your first day of chemo tomorrow. Someday when you can read you will see how many people were rooting for you and love you. I love you so much my happy little grandson. I wish I could take that thing out of your head and put it into mine instead.
Carolyn...what a great friend you are for doing this! would you like me to share this on my page for more prayers and support? billy has been in our prayers!
You visit CHOP tomorrow for your second opinion. Praying for better news regarding your treatment from them dear Billy. Love Grandma
Thank you Carolyn for doing this. You are such a good friend. We are all devestated by this. He is such a sweet boy and has a smile for everyone he sees. He has such an easygoing temperment. I cannot stand the thought of what he is in for. It breaks my heart that this is happening to my dear little grandson and my daughter and her family. Kristy and Vin are such good parents. I do not understand why this is happening. I pray for strength for all of us and a miracle for our dear Billy boy.