“I always shift back to hope and gratitude,” says Lynne Cao on how she deals with her metastatic breast cancer diagnosis. She isn’t sure why. Maybe it is because she has a good support system, maybe it is for her two young children, or maybe it is the undying optimism of an immigrant.
|Lynne Cao with her family--husband Mike and children Katherine and Carter--on their family’s IoH Legacy Retreat® to Orlando in February 2020|
Whatever it is, Lynne doesn’t question the reason, but instead continues to “focus on the goodness,” and maintains, “I have so much to be grateful for. We have seen the best of humanity, and met wonderful people along the cancer journey who have impacted our lives profoundly. They have motivated us, inspired us, and helped in ways we couldn’t even imagine. These selfless friends quickly became more like family.”
She met many of those friends-turned-family just this past February on the Kendra Scott-sponsored Inheritance of Hope Legacy Retreat for families affected by metastatic breast cancer. Some might call it the kind of magic that only happens in Orlando, but the truth is that relationships were formed as much outside of the theme parks as inside--through conversation, smiles, and understanding. Strangers became the closest of confidants in mere days. That went for the children as well as the parents.
The Cao kids, Carter, age ten, and Katherine, eight, bonded with other children and especially with the family’s volunteers--Madison Fuegen and Isaiah Douglas. Both Madison and Isaiah were served by IoH as teens, which makes a huge difference in a family’s retreat, and also in how the family might choose to frame their future. With a deep gratitude, Lynne chokes up a little as she tries to put it into words, “It’s almost impossible to explain unless you’ve experienced it yourself. I don’t know how all the volunteers do it, but they do, and they give me so much hope for my own children.”
|IoH volunteers made the Cao family’s days in Orlando magical and hope-filled|
During the retreat, both Carter and Katherine looked forward to their time spent in group sessions as much as the afternoons in the parks, referring to their time with IoH as “hope days.”
|Carter and Katherine Cao spell “HOPE” with their family’s volunteers, Isaiah and Madison. Because of these two, Carter plans to volunteer when he is old enough, and Katherine tunes into IoH kids’ Hope@Home groups, claiming, “If Madi’s there, I am too!”|
Lynne was first diagnosed with early stage breast cancer in May 2016, and her treatment consisted of a double mastectomy and radiation book-ended by chemotherapy. A little over a year into her treatment, Lynne noticed trouble with her balance. An MRI revealed brain metastases, resulting in more surgery and radiation. The tumor came back less than 18 months later, which meant another surgery and even harsher radiation. By March 2018, the disease had advanced to the dura, or lining of her brain. Enrolling in a clinical trial seemed promising, yet the drugs proved to be too much for Lynne’s heart function. “I remain in treatment today, and despite the challenges and setbacks, we remain hopeful,” she says.
Throughout each recurrence, telling her children that the cancer was back was hard, but telling her parents was even harder.
At three months old, Lynne immigrated to the United States--by boat--with her mother and older sister. Her dad was held by the Vietnamese government for two more years before he was able to join them. “My parents hoped that was the big hardship we would all have to endure and are so sad for what I’m going through. They think I’ve been dealt an unfair hand.” Lynne is more than just proud of her parents--she sees how they put on a brave face despite pain and helplessness, and she recognizes their influence in her life, “Through my parents, I learned that the depth of love parents have for their children cannot be measured. It is like no other relationship.”
As Lynne notes, “lightning struck twice” in her family. First, when her younger sister was diagnosed with breast cancer at the age of 27, and then a few years later, when Lynne was diagnosed herself. While the cancer originated in the same location for both sisters, the pathology is completely different. Thankfully, Lynne’s sister has continued to be cancer-free since her remission. Trying to explain to her parents that her own cancer was different, and would never be cured, proved to be one of the most difficult conversations Lynne has ever had.
She now takes every opportunity she can to share those hard facts with others and laments the frustration she feels when people misguidedly think metastatic breast cancer is easily treatable. “That has been one of the biggest challenges for me. I have always been quieter but I am trying to find my voice and highlight the difference between metastatic breast cancer and breast cancer.”
Even through treatment, Lynne pursues her career as a system analyst for the University of Massachusetts, and works to make life as normal as possible for Carter and Katherine. Two brain surgeries and multiple rounds of radiation have affected her spatial awareness and left intermittent sensory loss on her left side. Stairs leave her feeling vulnerable, and she hates for her children to see how she struggles. She recognizes their empathy, however, and the scientific ways their young minds have adapted to understand the constant war within Lynne’s body. “Our son writes about red vs white blood cells and they both ask if my cells are better.”
Lynne and her husband Mike advocate for an honest yet age-appropriate approach to managing a cancer diagnosis within their young family, and also recognize the many emotional tolls it takes. According to Lynne, “The kids used to ask, ‘Why don’t we ever meet families like ours?’ But, after the IoH retreat, they don’t ask that question any more.”
On the retreat, their worries “melted away,” and Mike, whom Lynne describes as her “rock,” was able to relax and enjoy some much-needed carefree family time. Lynne best sums it up like this: “I often say, ‘The best days are the days you forget you are sick.’ And that is what the retreat was for us.” At one point, she looked up to see three smiling faces, and thought, “We haven't had that in a long time.”
|When she has her toughest days, Lynne goes back to memories from their family’s retreat--happy memories. Normal family memories that are not darkened by cancer.|
Angie Howell is constantly inspired by the people she meets in the Inheritance of Hope family. Her connection to IoH goes back to Davidson College, where she met Kristen Grady Milligan in the first week of their freshman year. Kristen eventually started Inheritance of Hope with her husband Deric, and Angie heard about their work at a college reunion. In 2010, the two former hallmates got back in touch, and Angie became involved in IoH shortly afterward. She has served as a Legacy Retreat volunteer, Coordinator, and now, as Communications Manager, Angie helps tell the stories of IoH. Read more Inheritance of Hope blogposts >>