Throughout her ordeal, as was Kirsten's way, she also served as a source of inspiration for others dealing with ACC, people whom she met while undergoing treatment or on-line via CaringBridge, a Web site that connects people experiencing similar health challenges.
Having touched the lives of all those she came in contact with —families, caregivers and researchers hoping to learn from her illness— her family saw an opportunity to help others while honoring Kirsten's memory.
Her parents, Gary and Barbara Pasquinelli of Yuma, Arizona, gifted $1.5 million to TGen toward the establishment of Kirsten's Legacy, a program to drive much needed ACC research and clinical care advancements, and move new treatments quickly to the benefit of ACC patients. The Pasquinelli's made their donation as a challenge gift to help encourage others to support ACC research. TGen also established a Kirsten's Legacy website as a central resource for all things ACC related.
"From early childhood, you could tell she was genuinely concerned about others," Gary Pasquinelli said about his daughter, whose ACC diagnosis came in July 2008. "As was typical of her, she didn't question 'Why me?' She didn't despair. She didn't drown in self-pity, and seek consolation from everybody. On the contrary, she consoled us."
Barbara Pasquinelli said that, even though ACC is a rare disease, it is her family's hope that research breakthroughs at TGen will not only benefit ACC patients, but will also have applications for other types of cancer.
Today, Kirsten's Legacy funds the first whole-genome sequencing of ACC patients, a study designed to offer new research insights by identifying the 3 billion chemical DNA bases of ACC tumors. Researchers hope that by comparing the cancer DNA to a patient's normal DNA they'll discover what's different: in short, the changes at the DNA level that might cause the disease, and chemical pathways that will enable improved treatment, perhaps even a cure.
"Our hope is that TGen's efforts surrounding ACC will have utility and benefit on other types of cancer as well," Barbara said.
And she doesn't want ACC patients and their families to struggle in the wake of a loved-one's diagnosis when they seek even basic information about this disease.
Patient and Family Education
"We had such trouble finding information on ACC that we want the Kirsten's Legacy website to be an information center, a place where you can get substantial information about ACC without having to go through what we went through," Barbara said. "We hit roadblock upon roadblock, and every doctor told us something different."
In contrast, Gary said, the TGen staff consistently went the extra step to counsel and assist Kirsten and her family at every turn in her treatment, boosting Kirsten's already indomitable fighting spirit.
"The legacy of that fighting spirit, it lives on genetically in her children and her family. But we want it to live on at TGen, too, through their research, to let others have that hope and that fighting spirit, to have their courage renewed. There are some very brilliant, passionate people working at TGen to end this disease," Gary said.
Kirsten's husband, Ed Sandstrom, also praised the staff of TGen, especially Kirsten's surgical oncologist, Dr. Michael Demeure, Dr. Raoul Tibes and patient care specialist, Joyce Schaffer.
"At TGen, the doctors showed so much care and concern and knowledge about such a rare and unique disease. That gave Kirsten hope, and they gave our family hope," Ed said. "Time and again, they put the well-being of the patient and family above all else. They were authorities on the subject when there was so little information out there."
The difficulty in learning of a cancer diagnosis is described in vivid detail in a school essay by one of Ed and Kirsten's three sons, Bailey: "I asked in a cautious voice, 'What's wrong, Dad?' He told us to sit down with him and said, 'Mom is really sick, and the doctors say she has cancer.' My heart skipped a beat. I was still wondering if he said this right. Could that even be possible? When I looked around the room, everything was fuzzy and I could not see anything. It was then that I heard my innocent little brother, Jake, ask, 'What's cancer?' At that moment, I knew he would feel unimaginable pain far worse than what Holden (Bailey's twin) and I were currently feeling. I knew that we all wanted to hug our Mom and never let go.'
Kirsten's family wants to help ease that pain for others.
"We felt so lost and so unsure of what to do," Ed said. "We want to make sure there is hope. We want to support families working through that initial shock of an ACC diagnosis, to provide a resource that will provide some peace of mind."
Gary's voice trembles when he recalls the courage, faith and fortitude with which Kirsten addressed her illness.
Following a scan that showed a particular drug had failed, Kirsten immediately turned to her husband and said, "Eddie, I'm so sorry this didn't work," Gary recalled. "She wasn't worried about herself as much as how the bad news affected her husband."
When Kirsten visited hospitals for chemotherapy, she went out of her way to bring treats for the nurses, Gary said. "She became the caregiver. Because of her attitude, she brought a lot of cheer and smiles into that unlikely place, the chemo ward, where they were really needed."
In making their gift, Gary and Barbara believe their daughter's legacy of caring lives on at TGen.
"We're impressed," they said, "not only by the scientific expertise, but because the people are so passionate about what they are doing. To us —and to Kirsten— that's an essential quality. Sure they've got the science and the big computers, but what's most impressive is the genuineness and care of all we've met."
The Pasquinelli's recalled how much Kirsten expressed her trust in God. "She said, 'You know Mom and Dad, I'm not afraid to die. I know where I'm going. I know God loves me. I know there's a heaven and I'll go wait for you guys.' "
Gary said he believes that Kirsten's faith and courage are reflected in the work at TGen.
"What we hope to do at TGen through Kirsten's Legacy is this: She doesn't have to be physically alive for her faith and courage to be contagious, to give others hope. By funding this research, her faith and courage live on through the successes I know TGen will achieve. And in turn, those successes will give others with ACC a chance."