The Marathon That Is DIPG
On November 16, 2018, after bringing Vivienne to Greenwich Pediatrics, we found out the worst news possible. She had gone with her dad the week prior to a walk-in clinic, and they had said it was no doubt strep or a cold behind her eye. I remember every day from school her gaze became worse and worse. I asked her repeatedly to look straight ahead, and she kept tilting her head. Her smile started to droop also. I just knew there was something terribly wrong and so brought her to the doctor.
Dr. Alison Cass calmly asked us to go to our local hospital for scans. She had done a neurological test on Viv, and she was wobbly on one side while hopping on her left foot. To further analyze their findings, they sent us via ambulance to Yale New Haven Hospital. The MRI showed a mass in the pons of the brain, and at the hospital it was diagnosed as diffuse intrinsic pontine glioma (DIPG).
Little did we know what we would endure for the next 17 months: MRIs every 6 to 8 weeks and a life of nervous anticipation, endless praying, and begging for good results. DIPG is the worst kind of brain tumor. Dr. Asher Marks’ team kept asking David and I if we understood that the life expectancy was 6 to 9 months. I went numb when told. From there everything went quickly.
Dr. Kristopher Kahle performed the biopsy, and this was instrumental in helping us decide future treatments. We finished 31 rounds of radiation at Yale by mid-January under Dr. Ranjit Bindra and with the help of steroids, which Vivienne endured but hated the fact that she was hungry all the time. The tumor shrunk to allow us access to the immunotherapy trial at Memorial Sloan Kettering (MSK) Cancer Center under Dr. Ira Dunkel. It was a combination of two monoclonal antibodies: nivolumab and ipilimumab.
During this honeymoon period, Vivienne enjoyed the beginnings of fifth grade, middle school and all the trappings of a team sport (soccer) and theatre. We, at this time, went as a family to Florida. Very generous friends afforded us a day at Disney, with a concierge named Charlie giving our family, which included Vivienne’s elder sisters, Gabrielle (18) and Regina (17), and younger brother, Connor (11), the best day of their lives. We scurried around the parks, jumping on rides the whole day to our hearts’ content. At the end of the evening, I went up to Charlie and said what he had done for our family and that Vivienne was sick. He looked at me and said he knew and that he took the job to give our family the best memory, something we will always hold dear in our hearts. To enable all six of us to step away from cancer and have fun and not think of tomorrow was very special. The siblings fight cancer, too, and they deserve to be cared for and spoiled also. Leaving the family alone is never all right.
To watch her, you would think she was perfectly fine. She was spoiled rotten by Dr. Stephen Gilheeney and Dr. Madhavi Lakkaraja at MSK as she did biweekly infusions and even crushed on her cute nurse, Matt. He would joke and be ever so attentive to her. On September 6, 2019, on my husband’s birthday, we got the worst news possible that the tumor was growing again. We exited the trial and petitioned to get what’s called “open arm extended access” of a drug called ONC201 at Yale under Dr. Nicholas Blondin and administered by Dr. Asher Marks and Dr. Vidya Puthenpura. The Musella Foundation for Brain Tumor Research & Information, Inc., was instrumental in assisting us in getting access to this very coveted drug, ONC201. Returning to our old stomping grounds of New Haven was good. Her tumor remained stable, but she was having more and more side effects due to necrosis at the tumor site. She was getting sick more often and feeling less stable on her feet. We added a bevacizumab infusion to her regimen to minimize the inflammation in the brain. We ended school on February 12 and never returned.
Sadly, Vivienne passed away on March 10, 2020, at the age of 11 years old from her tumor herniating into her spine. Nobody prepares you for the finality of death and the grieving lockdown that was to pursue.
Vivienne the Girl
Vivienne was a “lifer” of Sacred Heart of Greenwich, where she received her sacraments of Holy Communion and Confession. She developed into a confident learner and had strength of character to exude kindness and love to all. Her great faith, positivity, and humor served her well. In 2019, she was the recipient of the Philippine Duchesne Award for her generosity of spirit. She was a gifted artist, reader, and writer. She played defense for her soccer team and performed in the school plays Frozen, Wizard of Oz, and Annie. She was often heard rehearsing her songs and lines in the shower. She was a member of a Girl Scout troop in Greenwich and enjoyed camping out, pursuing badges, and spending time with her many friends.
We especially miss her wit and humor. She had a belly laugh and slapped the table for effect. If you asked her to do something she didn’t want to do, she would say, “Let’s put a pin on that.” If you served her a nutritious meal and she wasn’t quite into it, she’d say, “Barf in a hole.” She loved desserts, and we didn’t know a treat she didn’t like. (She would say, “Viv goes cra cra when she has sug sug.”)
I will especially miss the glee and excitement she had when she got a gift for someone and knew it was exactly what they wanted. She was so thoughtful and would rub her hands furiously together to reward herself on a job well done.
A private funeral mass was held at her school, Sacred Heart of Greenwich, on March 16. Due to COVID, only my husband’s family could attend. My parents and family are in Ireland, and I have yet to see them.
Why Team V-Sizzle Became a Family Partner
Vivienne was a thoughtful and caring girl. She was always doing acts of kindness for others. She didn’t sit and wait to be asked. Don’t get me wrong, prayers are lovely, but they should motivate action. You can’t feed the hungry if you don’t gather food. You can’t find a cure if you don’t fund research. ChadTough is doing the research that we believe will bring us to the cure, and the section I personally wish to read in my lifetime is “Living with DIPG.” We are tougher together, and the Finn family wants to honor our daughter Vivienne’s legacy by being in the fight.