July 3, 2014 – March 6, 2020
Diagnosed: February 1, 2018
Written by Vivian Rose’s Mom, Katie Weaver
Why We Fight
On the evening of Monday, January 29, 2018, our three-and-a-half year old daughter Vivian was playing outdoors with her father when she complained of a headache. Recalling that she had complained of a minor headache on several recent occasions, her father, a physician, sat Vivian on the lawn and examined her. She had been diagnosed with strabismus months before, the most common eye deviation problem in children, but when her father noticed a second cranial nerve palsy, he knew immediately a tumor was likely. A brain MRI was performed two days later, confirming our worst fears.
Vivian was diagnosed with a brainstem tumor, and due to the obstructive effects of that tumor, she was immediately transferred to Oregon Health Sciences University and underwent surgery a few hours later. A VP shunt was placed, alleviating that pressure. It was on this day that we learned of DIPG for the first time. We were informed that Vivian’s tumor was manageable, but only for a short period of time, and it was made clear to us that her condition was almost uniformly fatal. There were no curative surgical options. No effective chemotherapy options. Radiation only slowed the tumor temporarily, and the average life expectancy from time of diagnosis was less than one year. Even three years after that day, it’s difficult to describe the enormity of that news as we listened carefully to the physician managing Vivian’s care. We left that meeting with a resolve to fight as hard as we could, to investigate every option, to entertain experimental therapies at the forefront of DIPG research, and most importantly, to love and support Vivian with everything we had.
After extensive conversation with the pediatric neuro-oncologist and pediatric neurosurgeon, we made the decision to biopsy the tumor. Her clinical course was atypical, it was unclear over what timeframe her symptoms had developed, and our hope was that the biopsy would prove this tumor to be something less aggressive. Reaching the brainstem is no easy task, but the skilled physicians at OHSU performed the biopsy without complications. The pathology report, however, confirmed the tumor to be DIPG, diffuse intrinsic pontine glioma. Over the next six weeks spanning February and March of 2018, Vivian bravely completed six weeks of radiation therapy at Oregon Health & Science University. Concurrently, she participated in a trial of a chemotherapy drug, AZD 1775. This was a challenging six weeks for Vivian and our family. We moved into a friend’s condo in Portland, Oregon, and we returned home each weekend. Given Vivian’s three-and-a-half years, and her presumed inability to remain motionless for the duration of each radiation treatment, she was sedated for each treatment. Vivian insisted on walking into the radiation suite each day and climbing onto the radiation table herself. She would hold out her arm so they could access her PICC line, and she would insist on holding something scented near her nose so she wouldn’t taste the medicine as it was infused. She never cried. She never complained or struggled, but she didn’t like it at all. Each day as the medicine was infused we would hold and snuggle Vivian in our arms as she fell asleep. We would lay her limp body onto the table and watch them carefully position her. We would step out of the room and wait for them to call us back. Then we would sit with her as she gradually awoke. This process we repeated every weekday for six weeks.
Vivian couldn’t eat for six hours before the sedation, so each morning she would awake hungry but forego a meal. Immediately after awakening from sedation, she would take her chemo pills, then wait two more hours to eat. She was typically cleared to eat by noon, but her appetite was gone, and she would often fall asleep before eating. She would often go 16 hours at a time without food. She lost 12% of her body weight, blood counts went down, and she received one blood transfusion during the fourth week of treatment. Despite all of this, and the many appointments and long days in the hospital, Vivian rarely complained. She was a model patient, tolerant of the poking and prodding, always following our instructions. That she trusted us so completely remains humbling.
Well before Vivian’s diagnosis, we had scheduled a spring break trip to Hawaii. Vivian didn’t miss a single day of therapy, so we were able to make the trip as scheduled two days after she finished radiation treatments. We were able to spend time together as a family recuperating, resting, sleeping better, and trying to expand Vivian’s diet. Vivian loved to swim, and after having a PICC line for six weeks that prevented normal bathing, she swam like a fish the entire week. She was able to regain some of her spunk, stamina, and energy. She was almost symptom free. We believe we picked up on her symptoms earlier than normal, allowing for an earlier diagnosis and initiation of treatment earlier in the disease process. We were thankful she was doing so well.
At the end of April 2018, we went to Disney World through the Make-a-Wish Foundation. Each time I realized we had a “Wish” kid, it brought tears to my eyes and put a knot in my stomach. Vivian loved the experience and was running, dancing, laughing, and behaving like any normal 3-year-old. As she relished in meeting her favorite princesses, we struggled to rationalize what we observed and what we knew to be lurking inside her.
There were no formal treatment recommendations following radiation. On our own, we poured through information, experimental trials, and we parsed through data attempting to identify anything that might prove helpful. After an exhaustive, six-week application process, Vivian received clearance to trial the Nativis Voyager, and she was the first DIPG patient to use the device which aimed to slow rapid cell division with the emission of low-frequency radio waves. Vivian trialed a well-known chemotherapy agent, but she was constantly nauseated, loss substantial weight, and we ultimately discontinued the drug after her platelet count plummeted and she likely experienced a small stroke.
Both to combat the slow loss of functions associated with DIPG and the deficits resulting from the small stroke, Vivian went through months of occupational therapy. She regained strength and a more normal gait, and she loved the attention she received at therapy, but in January of 2019 an MRI confirmed her tumor was in progression. She completed a second round of radiation, and this slowed the progression of her symptoms and provided us with several months of quality time with Vivian. During this period of stability, and after extensive research and consideration, we traveled to Europe where an oncolytic virus (still at the very forefront of experimental cancer therapy) was infused into the tumor itself. Vivian’s care was excellent, she tolerated this well and without complications, but the response was not as dramatic as we had hoped.
In September of 2019, an MRI revealed progression of the tumor. Given the steady deterioration in Vivian’s condition we were not surprised by this result, and the coming months were both terribly painful and intensely precious as we watched Vivian lose the remainder of her bodily functions. She started the school year using a walker, but within a short period of time she was confined to her wheelchair. Still, she loved attending school and seeing her friends, and we remain deeply grateful that the school, Vivian’s teachers, and classmates accepted her and supported her during this decline.
Vivian slowly lost the use of every muscle in her body. She could not speak or walk for the last four month of her life. She could not sit, hold her head up, or use her hands for the last three months. We were by her side every day loving her, caring for her, reading to her, feeding her one drop at a time, and doing everything we could to make her feel safe and loved and valuable. Vivian’s intelligence, her wit, and sense of humor remained evident even when communications were reduced to the blinking of her eyes.
Our sweet Vivian Rose Weaver went to be with her loving Heavenly Father on March 6, 2020, at our home in Husum, Washington, while snuggled between her Mama and Papa. She is now resting in the arms of her Lord & Savior, Jesus Christ. We are deeply thankful to God for the gift and blessing of Vivian’s life, her love for Jesus, and His presence and faithfulness throughout.
Simon and I are immensely appreciative for the help and care Vivian received from her providers. Her physicians were amazing, and the nurses and supporting staff were all kind and caring. As we’ve investigated this disease, we are increasingly thankful for the many physicians, researchers, and teams working behind the scenes to identify a cure for this terrible disease. We have partnered with this foundation with the goal of contributing in the effort to raise crucial funds that have spurred recent and promising research that is slowly whittling away at DIPG. A cure will come, and private research funding will have, and has already had, a pivotal role in slowly unraveling the complexities of this disease.
More Ways to Give:
Vivian’s amazing Memé, Bea Plath, donates all her paintings, including her costs, to the foundation. Bea is also available to create personalized paintings for you on commission. Visit Bea Plath’s page by clicking HERE!