While LBF continues to focus on finding a cure for pediatric brain cancer, there are families who have received a diagnosis that need our help NOW. This holiday season, join LBF in raising funds for patients battling brain cancer and their families. Below are stories of three of these children LBF is supporting this holiday season, Bennet, Jennifer, and Elyse, who are actively going through treatment at Children’s National Hospital. These families have kindly shared their stories to raise awareness and give a real-time look into the struggles that come along with a pediatric brain cancer diagnosis. It is not just battling this terrible disease, but it also includes keeping the lights on at home, childcare for other children, trying to balance making ends meet, spending precious moments with your child in the hospital, and so much more. So many seemingly minor things that can become an overwhelming burden for families trying to save the lives of their children going through treatment for brain cancer. Today, on Giving Tuesday, LBF is humbled to share their stories and donate every single dollar raised today to these families, and others who are in need. We hope you will consider a donation after reading these stories.
Meet Bennett, aka Benny—a sweet, smiley four-and-a-half-month-old baby adored by his three older siblings. Benny was born on July 2, in Salisbury, Maryland and all seemed right in the world for the Elmore family with their sweet newborn. Things took a scary turn after only a few months of newborn bliss. In the middle of September, when Benny was just two months old, his parents noticed he was not acting like himself. All of a sudden, he became extremely calm and sleepy, not even crying when he was hungry. His eye also started doing what looked like a twitch, so they made the decision to take him to their local hospital to check on Benny’s symptoms and learned that Benny was experiencing seizures. It was decided that Benny needed to see pediatric oncologists, given the diagnosis of seizures, so he and his parents were transported two and a half hours away to Children's National in DC. After meeting with the oncology team, they discovered that the seizures and Benny’s side effects were due to a brain tumor.
Once the seizures were at bay with the proper dosing of medication, Benny underwent brain surgery on October 5 to biopsy and remove as much of the tumor as possible. Doctors were only able to remove approximately 50% of the tumor, but the troubles didn’t end there. The day after surgery, Benny’s brain ended up hemorrhaging delaying the start of Benny's chemotherapy to combat the remaining tumor. Almost three weeks after his surgery, doctors diagnosed Benny with an Atypical Teratoid Rhabdoid Tumor (AT/RT). Benny is currently going through his second round of chemotherapy. After this next cycle, Benny will have an MRI and hopefully undergo a second brain surgery to remove as much tumor as possible. Because he is so young and they live at such a distance from the hospital, Benny will remain hospitalized through most of his eight months of treatment.
When talking about Benny’s journey, his mom said, “Although it is an easy decision to do everything and anything for Benny's sake, it definitely takes a toll on our family and finances. My husband and I have made it so that I can be with Benny every step while my husband has to stay home to work/take care of the kids, and travel back and forth to the hospital when he can… Benny is a little warrior, but he still has a very long road ahead of him.” The cost of travel to and from the hospital, child care for his siblings, and his mom’s lost income will continue to place a significant financial strain on the Elmore family. This holiday season, we hope you will consider a gift that will go directly to Benny and his family to help support their most basic needs as they navigate treatment.
Jennifer is a sweet, sensitive, and funny 6-year-old little girl who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on May 6, 2023. DIPG is a highly-aggressive and difficult-to-treat diagnosis that occurs in the brainstem and affects many of the body’s most vital functions. Jennifer lives with her parents, a 2-month-old sister, Isabella, as well as her three cousins, ages 9, 10, and 16 years, of whom her parents have taken guardianship. Since Jennifer’s diagnosis in the spring, she has undergone six weeks of daily radiation and is now enrolled in a Phase 1 clinical trial at Children’s National Hospital. Jennifer has had a very challenging time with radiation, experiencing significant side effects like daily nausea and vomiting. On top of the side effects, she has developed a great deal of anxiety about going for treatments each day. One glimmer of hope is that she has been able to return to school---which she loves.
Before Jennifer’s diagnosis, both parents worked full-time outside of the home. Since Jennifer’s diagnosis and the daily radiation, her mom made the difficult decision to leave work to care for Jennifer through radiation and treatment and has not been able to return to work. Jennifer’s Dad works for the Engineering Department for Montgomery County public schools, where he only gets two weeks off per year. Once that time is used, he does not get paid for days he takes off, making it nearly impossible to help with Jennifer’s treatment, childcare for the other children, or just spend time together… a heart wrenching situation for any parent.
Recently, Jennifer’s mom continued to worry that she was going to have to send her niece and nephews back to Honduras, as she did not know how they were going to be able to afford to care for them after Jennifer’s diagnosis. Jennifer has grown very close with her 9-year-old cousin, who has been a light in this dark time. It would be heartbreaking for Jennifer to lose her cousin at this time, so her dad has taken on a second part-time job to help cover their monthly bills and pay for necessities for the family. They have a strong religious faith and are hopeful that Jennifer will continue to do well but recognize that this tumor is very difficult to cure. As Jennifer continues with the Clinical Trial at Children’s Hospital, the road ahead is uncertain for her and her family. Her father continues to do everything he can to provide for the family, while Jennifer’s mom cares for her and her family. This holiday season, we can lift this family and help them with the most basic needs, such as childcare, groceries, and the ability to continue supporting Jennifer’s three cousins so they can remain close to Jennifer and well cared for. We hope you will consider a gift directly to Jennifer and her family this holiday season to help support their most basic needs as they navigate treatment.
Elyse is a caring, sensitive, and strong 9-year-old girl who was diagnosed with a low-grade glioma at the age of 4. Elyse loves animals, going swimming, and especially attending Horizon Day Camp. Since being diagnosed with a low-grade glioma five years ago, Elyse has had four brain surgeries, has been on five different treatment regimens, and has received six weeks of proton beam radiation. She continues to be strong and brave through all of these treatments.
Unfortunately, at Elyse’s last surgical resection, the pathology came back as something different than her initial diagnosis. This time, doctors told Elyse and her family that it was a glioblastoma, an aggressive high-grade glioma with grim outcomes. While this is heartbreaking news, Elyse and her family continue to fight this terrible disease. Elyse is currently receiving a combination of IV therapy drugs every two weeks in the outpatient clinic at Children’s National Hospital.
Elyse lives with her father and paternal grandmother in central Virginia, about an hour and a half drive from Children's. Both her father and grandmother work outside the home, but her grandmom usually brings Elyse to her various appointments, of which there are a lot. She misses a lot of work and often works on the weekends to make up the time. They are a family who never ask for anything and are so grateful for the little things they have received along Elyse's journey. Join us this holiday season as we raise funds to help.