Supporters Like You

Kathy had lymphoma, and Tyler had leukemia. Both had successful outcomes because of new cancer treatments discovered through LLS’s wonderful research funding.

We have been so very honored to support LLS for the last few years. Every person we have met in LLS is such a devoted servant to the cause of finding cures for all blood cancers. We have been impressed with their selfless desire to help others.

We have been able to attend Light the Night the last two years, and have had such a special time. We leave so inspired and grateful for this event and for the support raised for cancer research.

That’s why we made a lasting gift to LLS by including it in our estate plans.

Thank you, LLS, for the positive change you have made in our world.

She took a three-year hiatus to work in the finance department of one of Omaha’s largest employers, where on an elevator she met the man who, after a fairytale beach wedding, would be her husband for the next fifteen years.  Early in their marriage he was diagnosed with Chronic Lymphocytic Leukemia, and Sandy went to every doctor appointment with him while married and for many years after.  His illness led to her decision to donate her entire estate to the Leukemia and Lymphoma Society.

Sandy then returned to the law firm for several more years, where she became their self-taught paralegal.

From the law firm, Sandy went to work as the paralegal for a local niche specialty insurance company.  When that firm was bought by the world’s leading global insurer, she quickly became the go-to research expert for the new owner’s legal offices around the country.  She retired from there after more than twenty years of service.

Sandy loved her country, its flag and the military who protect it, Nebraska “Husker” football, music and, most especially, animals.  The loves of her later life were her rescue cats, Millie and Maxine, who were born wild in a woodpile at a local tourist-favorite farm.  They survived her, and are being well taken care of by a loved one and living a good life at almost eighteen years old.

Ken remembers helping his mother and giving her blood platelets on a regular schedule but in 1985 treatments for Leukemia were not as advanced and she lost her battle with the disease. As his mother’s life ended his wife’s battle continued and she started her treatments for non-Hodgkin’s Lymphoma. Valerie ultimately lost her life in 1989 leaving behind their beloved son David, just 2 weeks short of his seventh birthday.

Recently Ken took some time to think about how he could help LLS and made some plans for a future gift. While it was difficult to relive the journey he had with his mother and wife he noted, “We are in a war and a war we must win. It is my hope that the money I leave will be used for research in the best possible way to eradicate these terrible diseases.”

When asked about what he might say to other people considering making a gift he said, “Please give to LLS – I saw firsthand how these diseases brought so much pain to my family.” Ken also noted that he decided to utilize his Donor Advised Fund as the vehicle for the gift and said, “This was a really easy way to include charities that are important to me and beside being simple it does not involve a lot of expense to set it up.” Ken is also thinking of other ways he can share the message of leaving a future gift to LLS.

LLS is the place to be.

There are so many good things happening. A great deal of progress has been made, but for some types of blood cancer, there is much work still to be done.

For example, we weren’t aware of the extent to which children are affected by leukemia and lymphoma, and we are pleased to support the LLS Children’s Initiative to advance pediatric research.

Last year, we were honored that the LLS Illinois Chapter chose to create and present us with the Paul & Joan Rubschlager Philanthropist of the Year Award. They now plan to award it annually.

We are both lucky cancer survivors. That couldn’t have happened if someone hadn’t funded research long before we did. We don’t know who they were, but we say, “Thank you very much.” We want to pass that on.

Hopefully, lives in the future will be saved by something that we’ve done.

After losing their son, Michael, to the intense long-term side effects of his leukemia treatment, Bernard Garil a longtime LLS Board of Directors member and his wife, Ethel, were determined to close a major gap in care and research: There were no integrated systems to track outcomes and the health of patients and survivors. They turned to LLS to help build that valuable resource.

It was their vision and generosity that led to the first stage of this endeavor—the LLS Community— gathering vital information from a large pool of people affected by blood cancers. Collecting the shared and unique experiences of patients will help researchers understand the true impact of treatment over time, enabling them to identify unanticipated concerns or effects and develop improved therapies and interventions.

The next phase will be a registry, to be launched in June 2018, to which electronic health records from the institutions involved in a member’s care can be uploaded, creating a data set of health records that can be studied for patterns and outcome implications. The initial studies will be related to real world care and outcomes regarding Chronic Lymphocytic Leukemia and Waldenstrom’s Macroglobulinemia.

That was the start of a series of tests, scans, and surgeries that Matt went through as doctors searched for an exact diagnosis. Matt meticulously documented every single one of his dozens of visits to Stanford during that summer. The cancer was so aggressive that multiple biopsy samples failed; the cells were necrotic and could not be properly tested. Finally, just days after his 28th birthday in August 2016, Matt received a diagnosis: non-Hodgkin lymphoma. Fortunately, the cancer was treatable, but he needed to start chemotherapy immediately.

One week later, Matt traveled back to Stanford for his first treatment. After that, he returned every 21 days, waking up at 6am, driving 90 minutes to Stanford, and getting home around 8pm after a long day of chemotherapy, blood work, and scans. Four months later, Matt finished chemotherapy and moved on to three weeks of daily radiation. Because his bones were weakened by the treatment, Matt had to use crutches all the time. Nevertheless, he was determined to keep his life as normal as possible. He worked the entire time, taking radiation appointments over his lunch breaks. Finally, in December 2016, Matt successfully completed his last radiation appointment. Today, he is in remission and returns to the hospital every three months for a checkup.

Matt is quick to say that his friends and family were critical to his successful recovery. Yet, his community was doing more than providing emotional support. A good friend set up a GoFundMe page for the couple to help them with their medical expenses. Matt and Emily were touched by their friends’ generosity, but after talking it over, they decided that others needed this money more than them. That’s when Emily first got in touch with Jen Shah, LLS’s Patient Access Manager.

Emily said, “I met with Jen, and she was really responsive and gave me a ton of resources about ways we could donate that are more locally focused. She really listened to what we wanted. After hearing about a couple different things, I felt a direct connection to the North Bay Travel Assistance program.”

The couple agreed that travel was a huge challenge during treatment. “I always say that I was fortunate in an unfortunate situation,” Matt said. “I work for a great company and have great insurance. But it’s still a pain to drive to Stanford, even just from San Francisco. I can imagine if you’re coming from further that [the costs of] gas, bridge tolls — it adds up.”

“It makes you think about people who don’t have enough,” Emily added. “Blood cancers affect everyone, and I can see how travel could be a deterrent to being treated at a best in class hospital like Stanford.”

That’s why Matt and Emily made the incredible decision to donate over $28,000 from their GoFundMe page and other donations received to the North Bay Travel Assistance program. The money will be directly used to provide $500 grants to patients in North Bay counties who need help paying for the costs of gas, tolls, lodging, and parking while traveling for blood cancer treatment.

“Finances are a huge stress for anyone, much less for those in cancer treatment,” Emily said. “If we can help, big or small, we want to. Taking that burden off others is the least we can do, because we had so much help and support.”

Today, Emily and Matt have no regrets about their donation to LLS, and friends and family have been enthusiastic about their generous choice. Emily added, “The resources that Jen gave us made it easy to share what we were doing with the money and why it was important. LLS was so easy to work with and gave us a way to impact those who need it most.”

Thank you, Matt and Emily, for making a difference in the lives of local families!