Funding lifting spirits
By Rachel Kelly
“You know what really struck me?” says Mary Henley, the mother of the late Rachel Lynn Henley, “was how many people have told me that Rachel encouraged them to try something new. She helped others choose paths that they might have otherwise missed if it weren’t for her.”
Rachel Lynn Henley was fierce. But she was also sweet. True to most teenagers, she could have an attitude. She loved deeply. She played soccer but also enjoyed cheerleading. Overall, she was just a normal girl who was faced with something that she shouldn’t have had to face. At just 14, Rachel was diagnosed with a rare soft tissue cancer called synovial sarcoma. Five years later, the cancer would spread from her shoulder to her lung and later to an area by her liver. For seven-and-a-half years she gracefully signed off on treatment plans, lost her hair, endured surgeries, and persevered through chemotherapy and radiation.
During that time, she also invested in those whom she loved. Because of the love and support that surrounded her, she also did a lot of things that teenagers do—except with additional challenges. “I think it gave her a different perspective, what she was going through,” says Mary. “She used that perspective to encourage people to live life with those that they loved.” Which is exactly what Rachel did.
In June of 2015, Rachel’s battle ended peacefully. Her legacy endures through the lives of those that she loved and loved her, and also through the regular impact of the Rachel Lynn Henley Foundation.
The Rachel Lynn Henley Foundation was not only inspired by its namesake but came as a direct result of Rachel’s living wishes. Team Henley had raised $80,000 toward cancer research throughout Rachel’s treatment in various fundraisers and cancer walks. However, Rachel wondered at a way that those funds might be used more directly toward programs and research areas that she felt lacked in support. She wanted to fund research and programs that directly impact pediatric and young adult care, channeling resources to help others in a way that her experiences inspired her. Rachel knew that she was supported and wanted to provide a means for others to experience that same support. Now after her death, Rachel’s family and friends volunteer to fulfill her wishes.
The funds raised through the Rachel Lynn Henley Foundation are primarily focused on building joy, bringing rest, providing for practical needs and creating a sense of normalcy. The foundation puts smiles on individuals experiencing pediatric care for cancer and provides resources that insurance does not cover. Lastly, the foundation funds very specific and intentional pediatric research. Through the Rachel’s Hugs Program, approximately $1,000 (or more) is allocated toward providing something that lifts the spirits of kids and youth experiencing cancer. Sometimes these gifts are for things that are out of budget because of the expense of care, but not always. The true intent is just to provide something that will bring joy. Many times the money is used for something practical, like a computer, but just as often is used for whatever brings a smile. Many times the caregivers and hospital staff are included in the gift giving, and it is often one of the few times where they are really able to see their patients smile.
Another way in which the Rachel Lynn Henley Foundation funds smiles is to partner with Mary Bridge to provide an annual Christmas Party. Santa Claus and all his favorite people attend with gifts, snacks and crafts. In the summer the foundation again partners with Mary Bridge to hold its Summer Water Blaster Party. The foundation provides all the fun stuff that a kid might need to soak their doctor, caregivers and staff in an epic water battle, and the fun takes care of itself from there! This not only brings some positive experiences between doctor and patient, but it’s just pure joy! Smiles are not only brought by these events but by the funds allocated to needs of the hospital that aren’t funded through insurance. The local hospital simply has to call, and the foundation will do its best to provide for the need. Things like additional refrigerators for patient foods, Xboxes to curb boredom, books, band-aids, thermometers, and playpens for babies. Things that not everyone might think of but needed nonetheless.
Aside from the fun and the smiles, a contribution not to be underestimated, the Rachel Lynn Henley Foundation also funds research. Monies are entirely focused on pediatric cancer research, for issues specifically impacting kids, teens and young adults. One such area is that of fertility. Pediatric patients experiencing chemo often lose their ability to reproduce should they choose to do so in their future. A doctor at Seattle Children's works to cryo-preserve ovary tissue, which can be re-transplanted once the cancer is in remission to preserve fertility. Funds also go to researching the specific cancer that Rachel experienced: synovial sarcoma, as well as other cutting edge research related to pediatric cancers. Any treatments that might aid in the recovery and cure of pediatric cancers are carefully reviewed before they are funded by the Rachel Lynn Henley Foundation in accordance with Rachel’s desires.
What’s more, all of this, everything from the Rachel’s Hugs Program to the allocation of funds toward pediatric cancer research, the Summer Water Blaster Party to the books, Xboxes and refrigerators gifted to Mary Bridge, are done as a result of devoted volunteers—often volunteers who knew and loved Rachel. This means that virtually all funds donated go directly to bringing kids smiles and pediatric research. The service that the foundation provides for the community is an act of love. First from Rachel, and then from those who loved her. Every time a child smiles as a result of the Just Hugs program, every time a doctor is soaked during their Summer Water Blaster Party, and every new discovery as a result of research funding comes from the place of support. A place of family.
For more information on how you can volunteer or donate, please visit online at RachelLynnHenleyFoundation.org.