Billy had to go through yet another MRI this past Monday.
Doctors say his tumor has shown no growth since his last MRI eight weeks ago (it grew from November to January), but that it’s most likely attributed to it being a slow growing tumor. They did not comment on his enhancement, which first showed up in November and got even worse on January’s MRI.
So even though doctors were pointing towards starting chemotherapy based on January’s MRI results, they now want Billy to wait another 8-12 weeks until he has yet ANOTHER MRI scan to see what that reveals. They say this next round of chemo (8 cycles) will be more intense than last time, so they think it will be better for his body to wait as long as possible before starting this. The longer Billy can hold off chemotherapy, the better it will be on Billy’s body. Chemo would possibly start sooner if any change is seen in his behavior or eyesight. He does have an eye appointment in two weeks, followed by a trip to the endocrinologist.
Last month, the Biviano’s saw a nationally recognized pediatric neurosurgeon at NYU. He confirmed that the tumor cannot be fully removed or even biopsied due to it's location. He categorized Billy’s tumor as a Pilomyxoid Astrocytoma – known as a PMA. This type of tumor was only first discovered 15 years ago, at Johns Hopkins Medical Hospital. Per JH definition, it is a slow growing tumor, but is more aggressive than its “PA” (pilocytic) relative. According to JH, PMA is now recognized by the World Health Organization and the number of PMA cases is currently unknown, probably due to how rare it is.
There are still questions left to be answered based on Monday’s MRI results. He still is 12 months behind his twin brother developmentally. Still overweight, his nystagmus has returned, and he still cannot speak two words together at a time. But for now, we will just keep fighting and praying for Billy & his family….we thank you all for doing the same as well.
Earlier this week, the Biviano family received the results from Billy’s latest MRI’s, and sad-to-say, they are not good. His tumor has started to grow since his last MRI. Also, there is more enhancement around the tumor area now than shown on his previous MRI scan. We are all crushed by the news.
His oncologist will meet with RWJ’s tumor board next week to determine what treatment regimen to place him on next. It may be oral chemotherapy. Or, it may be the same two-drug chemotherapy regimen he was on, which would mean having a port surgically placed in his chest again. He has an MRI scheduled in another eight weeks.
His family is saddened and scared by the news, and just plain drained - both mentally and physically; but that will not stop all of us from fighting alongside the Bivianos for our hero Billy. Please continue to keep him in your thoughts and prayers as we move forward through this difficult time….
Billy had an MRI on both his head and spine yesterday. Please pray that the results come back positive for Billy and the Biviano family. As always, thank you for continuing to support Brave Billy....
If you can, please check out Billy's Facebook page "Brave Billy's Journey"....
Hi everyone. Here is an update on Billy.
His eye doctor appointment did not go as well as the family had hoped - the doctor said he is visually impaired. He is farsighted & continues to have the horizontal nystagmus. Some of his optic nerve tissue has been lost due to the tumor. He was fitted for glasses recently and will have to wear them for a few hours a day for the next 6 months.
Later this month he will have his endocrinologist appointment to try & determine what can be done about the lack of height growth & his overweight condition. His next MRI is not until November 3.
He will turn 3 on September 27 along with his twin brother Michael, so his family is looking forward to that.
Please continue to keep Billy & his family in your thoughts and prayers....
Hello everyone. I wanted to update all of you on recent happenings with Billy.
First, Billy had a follow-up appointment recently with his oncologist. They revealed to Billy’s mom that he has not grown in height since April. He has also put on a lot of extra weight. The doctors are becoming a little bit concerned. The tumor may be placing pressure on the area where the pituitary gland is located, which may be causing this problem and can result in growth and developmental problems. His bloodwork came back normal, so Billy will undergo other tests to determine the next course of action.
He is not scheduled to receive another MRI until late October. Until then, there remains no treatment that Billy can receive which will affect the tumor. The tumor remains in a bad spot, so it is still inoperable. We will all continue to hope that it does not grow….
Lastly, I wanted to pass along info about a fundraiser that has been scheduled to help support Billy & his family. A group called Steps Together, a non-profit organization dedicated to helping families like Billy’s, is participating in the Steeplechase Distance Walk & Run event on Sunday, September 28, 2014 in Hillsborough, NJ. Supporters of Billy are organizing a team to participate, “Brave Billy’s Heroes”. There will be runs of 5k & 10k, along with a 2 mile walk and Children’s Sprints. Even if you are not a runner or walker, or will not be around that day, you may still participate virtually. Please consider participating on their behalf – let’s give the Bivianos the support that they need. For more info, please go to www.steps-together.org/reg-intro.
As always, the Biviano family appreciates all of the love, prayers, and support from each and every one of you. Thank you for joining me in support of our little brave hero Billy.
Sorry that it’s been so long in-between updates. Here is what’s going on with Billy…
He finished 8 cycles of chemotherapy, after which they performed his MRI in April. The results showed that the tumor did not shrink during the 3 months in-between MRI’s, even with the chemo. This, combined with the fact that he had reached the maximum allowable number of chemo treatments for a child his age, led the doctors elected not to move forward with any treatments. There were and still are no other treatments available to someone as young as Billy, and the tumor remains inoperable.
Billy went three months without any treatment whatsoever, leading up to his MRI last week. The results showed that the tumor stayed the same – no growing or shrinkage and the tumor remains inoperable. These findings have been bittersweet for the Biviano family, as they are now counting the days until Billy’s next MRI, which will be in October – just days after his 3rd birthday.
Please continue to keep Billy in your thoughts and prayers…..and as always, thank you for your continued support of the Biviano Family.
Billy started his 7th cycle of chemotherapy last week. He will have one more cycle left in his chemo maintenance program, at which point doctors will determine the next course of action. With each passing MRI, the tumor has shrunk a tiny bit, but doctors fear that Billy is almost at the point where chemotherapy will no longer work. As a result, the Bivianos were advised to start seeking second opinions about possible surgery to remove it. However, because of how the tumor is intertwined with normal brain matter, chances are surgery will not be possible. A lot will depend on Billy's next MRI, which will take place in April.
The entire process has been extremely trying on the Biviano family. Please keep Billy and his family in your prayers during this difficult time and as always, Billy's family thanks you for your support and well wishes.
Billy has an MRI scheduled for this Monday. He will begin his 7th cycle of chemo in 2 weeks.
Please continue to keep him in your thoughts and prayers. As always, thanks to all of Billy's followers for your continued support.
Billy just finished his 4th cycle of chemotherapy this past week. He is not scheduled to start the 5th cycle for another 2 weeks. However, no rest for our brave & weary boy - he has to see an eye doctor tomorrow. He may have double vision, most likely related to the tumor.
On a better note, he continues to play and have fun with his brothers & puppy at home. Billy & his twin celebrated their second birthday this past week.
As always, the Biviano family is grateful for all of the prayers and support that so many of you have shown for Billy. Please continue to keep him in your thoughts and prayers....
Just to update everyone on Billy's condition:
He is scheduled to receive his 4th dose of chemo for this particular chemo-cycle. He will then get two weeks off before starting cycle 4. As always, this is all contingent upon his Nutrafil counts being high enough for him to receive the chemo.
Billy has another MRI scheduled for October 21. As always, we will continue to pray for good results.
The Biviano family continues to be extremely grateful and humbled to be surrounded by such caring and loving people; people who have rallied around them and Billy in this time of need. We ask that you continue to pray for our Brave Billy....thank you!
Hello everyone! Just a quick update on Billy...
He recently finished a 5-day stay in the hospital. He was admitted for a fever, and even though it went away the next day, his counts were too low to send him home right away. In fact, they were at an all-time low. Billy also needed a blood transfusion while in the hospital. However, he is back at home now, a little more tired than normal, but still trying to play with his toys, brothers, and new puppy as best he can.
Billy is scheduled to start a new round of chemo during the first week of September, but only if his counts will be high enough. He will go for some follow-up bloodwork later this week to check his counts.
As always, the Biviano family is blessed to have so many of you supporting our brave Billy & praying for him. Please continue to keep him in your thoughts and prayers...
Just wanted go update our Brave Billy supporters and followers. Billy had his MRI and it showed a little improvement, which is awesome news!! He started cycle 3 of his chemotherapy last week. He will go tomorrow, then two more weeks before his next break.
Thank you again to everyone for supporting Billy and his family, and for keeping them in your prayers....
Hello, hope everyone is enjoying the summer.
Just a bit of an update, Billy is off treatment for 2 weeks, which is great news. Billy will go in for his 2nd MRI on Monday, July 8. As always, please keep the Biviano's and their families in your thoughts and prayers.
Just wanted to provide a quick update - I know it's been a while. Right now, Billy is enjoying a much needed & well-deserved break in-between chemotherapy cycles. He doesn't go back for treatment until April 11. On that day, he will start a new 8-cycle program of chemo which will take him through at least March of 2014.
The Biviano family is extremely grateful for & humbled by all of the ongoing support shown towards little Billy. Please continue to keep Billy in your prayers & thoughts as he still has a long journey ahead of him in his battle against the brain tumor. Thank you...
For those that are not aware, Billy has been in the hospital since Monday morning with a fever. The doctors say he has RSV. He spiked yet another temp tonight, which means, he has to stay for at least 24 more hours. He has to remain fever free for 24 hours in order to be released.
Billy's twin brother, Michael, is now sick with a fever and will be going to the doctor.
They can not catch a break. Billy will most likely have to skip chemo tomorrow, I would imagine, if he still has the fever. Extra thoughts tonight for The Biviano's please.
Joey, who is their oldest son at 7, has been taking all of this like a trooper. Not one complaint out of him, please keep him in your thoughts as well.
As you may have heard, the Applesbee's fundraiser on Saturday has been sold out, which is just amazing. Thank you to everyone!!
There is nothing new to report, I just wanted to check in and thank everyone following Billy's Journey. As you may know, Billy has been unable to receive his treatment for the past 2 Thursdays, because his ANC count is too low, which means he is more susceptible to infections. The doctors will test his levels again this Thursday and take it from there.
Please, if you pray, pray that The Biviano's get "good" news this week and Billy can continue on with his chemo.
There is still time to get tickets for The Applebee's Fundraiser on March 9. Please come out, show your support, and enjoy breakfast from 8-10 a.m. at Applebee's in Hillsborough.
If anyone would like more information on how to help, please send me an email at
Meals for the family are always welcome and appreciated. If you are interested in bringing food to the family, please contact me and we can work it all out.
Thank You once again!!!
Billy went in for another chemo treatment today,however, his ANC count was too low for them to administer his treatment.
He will go back next Thursday and hopefully his count will go up enough for another round.
Thank you all so much for your support. The Bivianos are so grateful.
Billy, Kristy and Vinny are finally home! After a 3 night stay at RWJ, they were discharged this afternoon.
It started last week, Sunday, when Joey fell ill. He had a fever, no energy, in bed all day. Around Tuesday, he felt much better. Michael got the fever next, then Kristy and Vinnie. No alarming symptoms, just a bug, however, because of Billy's weakened immune sustem, they had to wear masks and "try" to keep away.
Billy started to get feverish, above the temperature that he should have, and Kristy and Vinny took him to the ER. They admitted him. They tested him for the flu, just to be on the safe safe. To everyones surprise, poor Billy was diagnosed with the flu. The doctors and nurses kept a great eye on him and knew what to do to make him feel better.
After the diagnosis, they rushed and had Michael and Joey tested for the flu. They both tested positive, even though Vinny tested negative that same morning. The doctors started the family on Tamiflu.
Billy's cell count was low, so they kept him another night. They got home tonight.
As always, please keep them all in your thoughts. As always, Billy was a trooper through it all.
A quick thank you for the amount of support the Biviano's are getting. They have dinners taken care of, friends calling to check in, support...
I could go on.
It is not going unnoticed at all.
As of right now, there are quite a few fundraisers planned for Billy. Please join us all for a great cause.
Saturday, March 9, at Applebee's in Hillsborough from 8 a.m. - 10 a.m.
For the month of February, Renaissance Hair Salon in Hillsborough, will be donating 25% of all products and services, when accompanied by the coupon on their website, to Billy Biviano. See their website for more info:
Thank you so much for your support!
Sunday, September 29, The Biviano family will be one of the beneficiaries of a united walking and running team that will participate in the Steeplechase Distance Run (5K, 10K and children sprints) in Hillsborough.
Steps Together was formed by a local husband and wife for no other reason than pay it foward and help support others. Please visit their website and come out to support Brave Billy!
Nothing new to report. Billy goes in tomorrow for his next treatment. Please just keep them in your thoughts. Hopefully they'll be in and out quickly.
I would also just like to say thank you. Thank you for your ongoing prayers, thoughts, and love towards The Biviano's.
I have never before seen a community come together so quickly and so generously as I have seen these past couple if months.
There are numerous fundraising events planned and in the works. I will update here frequently with dates and details.
I know Kristy and Vinny are so overwhelmed by the support they have gotten. There are no words for them to express how grateful they are.
Hope everyone's weekend went well. 3 very sweet friends of The Biviano's are hosting a Breakfast For Billy at Applebee's in Hillsborough on Saturday, March 9, from 8-10 a.m.
There will also be a walk/run fundraiser in September. A husband and wife team started "Steps Together" to benefit others in the area. Please follow the link for more information.
Just a little update. Billy went into the hospital Thursday for chemo. While getting his treatment, he developed a fever. If his fever reaches 100.5, they have to admit him. Poor little man, Kristy and Vinny were there for 2 days. The doctors tested for the flu and tested for any infections, both of which came back negative, thank goodness! Billy has to be fever free for 24 hours in order to be released. They got home yesterday.
I had the pleasure of watching Michael Friday morning. He is such a good little guy.
I also stopped by their house today and got to see Billy!
I would like to thank everyone again for their generous donations to the Biviano's. As we can all imagine, this is the hardest thing to be going through right now and every little bit helps!
If anyone is interested in dropping off meals to the family, please email me - email@example.com, and we can arrange something.
As always, thoughts, love and prayers going out to Kristy, Vinny, Billy, Joey, and Michael! xoxo
Billy is going in for another round of chemo this morning. Please keep the family in your thoughts and prayers.
Quick update- Billy had an MRI and had the port inserted this morning. That little guy then endured 2 rounds of chemo. He slept on mommy during. The good news... Brave Billy reacted well and is already home with Mommy, Daddy, Joey, and Michael.
Hello! I hope everyone enjoyed their holiday. All the best in the new year. I have a little update on Billy.
Tomorrow morning Billy is going in for his first chemo treatment.
Kristy and Vinny took Billy to meet with his medical team today to go over the finer details of his chemo.
The side effects that Billy will have to endure are just heartbreaking. Just over the course of his INITIAL 10 week chemo-therapy treatment, he will need one or two blood transfusions because of drops in his blood cell & platelet counts. That is in addition to the constant threat of fevers & other ailments stemming from his weakened immune system, which could lead to one-or two-day stints in the hospital each time they occur. He could also be subject to "secondary" cancers for the rest of his life.
There is a little bit of good news - he may not need to stay the night in the hospital tomorrow like they originally thought "“ assuming that he is reacting normally as the day progresses. He will have the central line placement and MRI performed in the morning, and by the afternoon he should be receiving his first dose of chemotherapy.
Kristy and Vinny appreciate all of your thoughts and your ongoing support for them and Billy through these trying times, and they ask that you continue to keep him in your prayers and thoughts as he begins to make his way along this painstaking journey. God bless Brave Billy...
Update on Billy - 12/21/12
After speaking with the oncologist yesterday, Kristy and Vinny have decided to move forward with RWJ and the chemo-therapy option. In preparation, Billy has an appt the Thursday after Christmas with a pediatric ophthalmologist to get his baseline vision. Then the following week he will have all at the same time an MRI, port-insertion (for the chemo), and his first chemo-therapy treatment. He will need to be hospitalized at least overnight, but it may be two nights. After 10 weeks of treatments, they will do an MRI to see what affect the chemo is having.
As if things were not bad enough for Billy, they have been giving him intense "Nebulizer" treatments for the wheezing cough he has. Michael has something similar, but no wheezing, thank the Lord.
They are not thrilled that Billy needs to go the chemo-therapy route, but see no choice, as it involves the least amount of risk out of all the options. He will need prayers more than ever, so we all ask that you keep them coming.
I stopped by to visit Kristy, Billy, and Michael today. Those poor little guys are feeling so yucky, but as always, I got some smiles out of them! Let me tell you, that special little guy, Billy, no matter how icky he feels, did not cry once. He was just hangin out, smiling away. I love them so much!
Please, The Bivianos could use all the extra support and good thoughts at this time. Share Billy's Journey with friends. Thank you all!!
Hi Nikki, thank you!! Please share, the more support, the better.
C.H.O.P. (Childrens Hospital of Philadelphia) could got give a second opinion today. They claimed they did not have enough tumor tissue to run a pathology report on, based on what RWJ was able to extract during Billy's needle biopsy. Kristy and Vinny basically wasted their time going there today. They will take this up with RWJ's oncology department tomorrow.
Please, let's get some answers!!!
Thank you so much for your support. An update should be coming soon, as they're still at CHOP.
I would truely like to thank everyone who has visited this page for updates and/or donated.
The amount of love and support is amazing!
We would like to thank everyone for their generous donations. Kristy and Vinnie appreciate it more than you know at this time. It's so nice to see all the love and support that they have.
They have set up a Facebook Page to follow along with also. You can like this page here:
Kristy and Vinnie will be posting over on Facebook and I will post updates here when they are unable.
They will be taking Billy to CHOP on Tuesday to speak with another doctor. Please keep them in your thoughts and prayers.
Even if you are unable to donate, please follow along with us on Billy's Journey. Please share Billy's Page with friends and family. May the Biviano's find comfort in all the support, love, and prayers at this awful time.
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.