Vivian D’Agostino is in the fight for her life, and at just 3-months-old her family is leaning on hope, and the community’s love to get them through the tough road ahead.
Vivian was diagnosed on December 30, 2019 – just days before turning 2-months – with a rare form of retinoblastoma. This aggressive cancer came in the form of a tumor behind Vivian’s tiny left eye and has taken over 50% of her eye.
We spoke with her mother, Brittany about their now fight and how they are standing firm and strong for their “Itty Bitty Vivi”.
“I was rocking Vivian to sleep and the light behind me shined just right on her eyes for me to see a discoloration in her left pupil. We immediately feared the worst after Googling what it could mean. The on-call nurse said not to panic, it’s probably nothing but to get it checked out in the morning by her pediatrician. We went to the pediatrician in the morning for her to tell us she’s a healthy baby and it’s most likely nothing, at WORST a possible cataract, which is corrected with surgery. To be safe, we scheduled an ophthalmologist appointment for 2-weeks later.
On December 27, 2019, our local ophthalmologist, with just a quick glance said the same thing: not to worry because the possibilities of cancer are so rare that he sees maybe one patient a year diagnosed with that. He dilated Vivian’s eyes and quickly changed his observation. He could clearly see the tumor even without using any examination tools. He informed us because this is so rare that the best thing to do is head to Philadelphia where Vivian can be examined and treated by world renowned expert, Dr. Carol Shields, as well as the amazing team at Children’s Hospital of Philadelphia (CHOP) run by Dr. Leahey.
My husband and I packed up what seemed like our entire home the next day and headed to Philly. On December 30th, our worst nightmare – Vivi was seen by Dr. Shields, without even having an appointment, and was officially diagnosed with cancer. A MRI the very next day confirmed the large tumor behind her left eye and no additional tumors in her right or brain – as of now.
Vivi started chemo just days later.
Since her diagnosis, it has been confirmed by genetic testing that this is hereditary and Vivian has a gene mutation. Vivian’s prognosis is an excellent chance at saving her life, a good chance at saving her left eye, and a possible chance at saving sight out of the left eye. Having the gene mutation now increases Vivian’s risks for not only retinoblastoma, but also pinealomas, osteosarcoma, soft tissue sarcoma, and melanoma – all different types of cancers throughout her lifetime. This could impact Vivian’s future children with the risk of passing down the gene being 50/50.
Vivian, myself and my husband, Tom travel to Philly each month for her eye exam and chemo treatments. We are there usually three days if all goes well, leaving our 2 1/2 year old daughter, Stella behind with grandparents. The plan as of right now is just four more chemo treatments and many exams for close monitoring for years.
My Vivian is the happiest infant I have EVER met! She smiles with her entire body, loves attention, giggling, and cuddles. The nurses at CHOP fight over her because she’s just so lovable. To explain our grief is difficult. It is the worst thing in the world watching your child go through all of this, sometimes not being able to console her or even hold her. Our family has been clinging on the support of our parents, family and friends. We honestly couldn’t do this without them.
I’m on a mission to raise awareness about this rare cancer because I believe awareness saved Vivian’s life. The most common early sign is leukocoria AKA a cloudy white pupil. This is detected when light shines into the eye, usually with flash photography, and the pupil will appear white instead of the normal black. A white pupil will not always mean cancer, but it’s not normal and should always be checked by an ophthalmologist.“
To keep up-to-date with Vivian’s fight, click here.