Updated: Jun 28, 2022
Their stories are heartbreaking, our ask is simple. Help us support these three families battling pediatric brain cancer this holiday season.
While LBF continues to be focused 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 three patients - Joy, Eli and Aubree - 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, making sure there is food on the table 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 wants to share their stories and donate every single dollar raised today to these three families. We hope you will consider a donation after reading these stories.
Our friends at Cardinal Wealth will be matching all donations up to $2,500 so your donation of $10 becomes $20 and $50 becomes $100. The support we can provide to these families doubles.
Aubree is a 6-year old girl who loves barbies, princesses, unicorns, dancing and doing arts and crafts. She was diagnosed last December with metastatic medulloblastoma after not feeling well for a couple of months. She was transferred to Children's in order
to undergo proton beam radiation and a clinical trial that offered aggressive treatment in hopes of a cure. Aubree received 6 weeks of radiation with daily IV chemotherapy
during that time, followed by 6 cycles of high dose inpatient chemotherapy. She was able to leave the hospital for short periods of time between cycles of chemotherapy, but was not able to go home as the risk of infectious complications and need for readmission to the hospital was too high. Aubree lives with her mother, grandmother, teenage aunt and uncle and 3-year old brother in southwest Virginia, a 5-hour drive from Children's National Hospital.
Before Aubree was diagnosed, both her mother and grandmother worked outside the home. Over the last 10 months, Mom has been staying with Aubree’s little brother and Grandmom has been with Aubree in the hospital so neither has been able to work. During this time, their savings have been depleted and they are struggling to get by month-to-month. Aubree got to go home last week, after staying at the Ronald McDonald House in DC for almost 10 months while undergoing treatment.
Joy turned one year old this week! At two months old she was diagnosed with a highly aggressive brain tumor (ATRT) and has spent all but several weeks of the last 10 months hospitalized at Children's National Hospital. She has received 8 cycles of high-dose chemotherapy and undergone 2 major surgeries. She is set to begin 6 weeks of focal cranial radiation at the end of November. This would be a very difficult situation for any family---but especially hard for Joy's parents, Charlotte and Nestor. Their 2-year old daughter, Patricia, died only 15 months earlier of an infection while battling a rare rhabdoid tumor---also a form of childhood cancer. Mom often shares that it is good to be with nurses and staff that knew and cared for Patricia, but also very hard as each day is a constant reminder of the beloved daughter that they lost. During this time of COVID, Joy's parents have struggled financially as Mom has not been able to work, and their 9-year old son, Adriel has had to do virtual schooling, often home alone, while Dad goes to work so that their monthly bills get paid. Adriel is a remarkable boy, but also worries about losing another sister and the grief it would bring to their family. Mom wants to be sure that he has a good Christmas this year. She has had to tell him "no" about so many things he has asked to do and things he has requested, as they have not had the time or money.
Eli, an incredible seven year old boy was diagnosed with a metastatic ATRT (Atypical Teratoid Rhabdoid Tumor) in September of 2016. He underwent a surgical resection followed by several cycles of inpatient chemotherapy before going to Boston to receive proton beam radiation therapy. It was in Boston that Eli had the chance to go with his parents to a New England Patriots game and Eli has always loved football and since that time, Tom Brady.
After completing radiation, Eli underwent additional inpatient chemotherapy and continued to do remarkably well so the decision was made to continue chemotherapy with low doses that could be given orally at home. This allowed Eli to attend preschool and cheer his grandpa's football team on the sidelines. Unfortunately, due to the toxicity from the chemotherapy, by the summer of 2019, Eli's blood counts showed signs of failing to recover---Myelodysplastic Syndrome-
--requiring weekly transfusions and eventually a bone marrow transplant. He received a transplant with his mother, Jennifer, as a donor later that summer. Eli spent an extended period of time in the hospital and at the Ronald McDonald House. After a long recovery, Eli and his family finally were getting back to some sense of normalcy. Sadly, Eli developed a rare complication, Chronic Graft Versus Host Disease due to his bone marrow transplant. Eli has now been hospitalized and when not in the hospital is being seen in the Clinic three days a week and is on multiple medications including high-dose steroids. He is at high risk for infectious complications and is unable to attend school. He still loves to watch football but has little energy to imitate the plays in his living room with his family as he used to do.
Eli lives with his Mom---Jen---an elementary school teacher who has had to continue to work full time in order to maintain Eli's health insurance, as well as his stepfather and stepsister who are a tremendous support to both Eli and his Mom. They are a wonderful family who have a lot of out of pocket expenses related to Eli's illness and treatment schedule---and rarely, if ever ask for anything.
We hope these stories show you just how difficult a pediatric brain cancer diagnosis is and how much these families go through. Our goal is to make their lives just a tiny bit better by supporting them financially so they can pay their bills, keep food on the table, and so much more that is often overlooked. Will you join us and make a donation today?