Ask anyone who knows (or knew) a child with diffuse intrinsic pontine glioma (DIPG) and you will hear something uniquely special about that child.
Children with DIPG are often described as old souls, wise beyond their years. They deal with pain and discomfort that adults would struggle with, all while comforting the grown-ups in their lives.
Olivia Marks was one of those children. Diagnosed with DIPG on July 1, 2017, she never called herself sick. Olivia endured two brain biopsies, 28 days of radiation in 2017, and another 12 in 2018. She went through countless MRIs, doctor visits, and pokes.
“She made the best of those visits,” said Olivia’s mom Michelle. “Some days she hated being there, but she loved collecting the stickers and telling the nurses how to do their jobs.”
Olivia Cathleen Marks was born on November 8, 2013 to James and Michelle. Little sister, Emily, was born two years later, and the two girls did everything together.
“Olivia was a bundle of joy,” said Michelle. “She loved playing with all of her toys, playing outside and riding her bike. She loved singing her ABCs on video, and going to daycare and being with her friends.”
The Marks family was just like any other family until June 2017 when the left side Olivia’s face began to droop. The local emergency room doctor diagnosed her with Bell’s Palsy and sent them all home.
Two days later, Michelle and James took Olivia to their pediatrician for a follow-up. “She knew something wasn’t right,” said Michelle. “They scheduled an MRI and that is the day we’ll never forget. When they called Olivia’s name in the waiting room, I could hear it in the nurse’s voice.” Michelle and James walked into a room filled with doctors. They were introduced to an oncologist, neurologists, and many others.
“We didn’t even know what kind of doctors these people were,” said Michelle. “They told us she had an inoperable brain tumor called DIPG, and there was nothing they could do for her. At that moment, we were in shock.”
Following the diagnosis, Olivia underwent radiation treatment to shrink the tumor. Radiation is meant to prolong life in the DIPG patient, but isn’t considered a cure.
Radiation treatment isn’t effective in all patients, but it did shrink Olivia’s tumor, allowing the Marks family to celebrate her fourth birthday, take a Make-A-Wish trip to Disney, and celebrate Christmas as a family.
Her symptoms began to return the following February. Olivia underwent radiation again in the summer of 2018, able to enjoy turning five on November 8, 2018.
At that point, however, Olivia had started experiencing headaches. As October turned into November and then early December, the headaches became more intense and more frequent. By mid-December, she was in hospice care. “At this time, we are focusing on keeping her pain free, comfortable and spending as much time as possible with her,” said James.
The Marks family celebrated Emily’s third birthday on December 23, 2018 with Olivia in hospice care. “She went out with us to celebrate and pushed through the day like there was nothing wrong except a headache,” said Michelle. “We celebrated and had a good time.”
The following morning, Christmas Eve, Olivia woke up and told her mom she wasn’t hungry. Having been on steroids, which generate ravenous hunger, this raised a red flag. “I knew there was something terribly wrong,” said Michelle. “That day the whole world changed.
“That was the last day I would hear Olivia say, ‘I love you, Mommy,’ ‘I love you, Emily,’ and ‘I love you Daddy.’ That would be the last day I felt my daughter squeeze my hand, and that would be the last day I saw those big, beautiful blue eyes look at me.”
The following day wasn’t Christmas for the Marks family.
“It was hell,” said Michelle. “A day none of us will forget. It was a day all family came and spent their time with Olivia, knowing any second she would be gone.”
Olivia fought hard through the night. Her family stayed by her side and never let go of her hand. Buttons, her cat, slept beside her. Then, on December 26 at 7:13 a.m., Olivia took her last breath. “She has been HEALED of her pain and set free from this terrible monster called DIPG,” wrote the family. “She fought hard for 18 months, always insisting that she was not sick. Olivia fought harder than I, or any other adult, could have fought. Olivia will forever be our angel in heaven.”
Life Without Olivia
In the wake of losing Olivia, James and Michelle try to spend as much time with Emily as they can. “We go through photo books to relive the memories we had with her,” said Michelle.
There isn’t a guidebook for getting through grief, and Michelle says many of the days are unbearable. They talk about Olivia every single day as a family, reminiscing with one another about the funny things she used to do and say.
All they can do right now is live moment by moment. “We know deep down she is watching over us,” said Michelle, “and guiding us through each day.”