Who We Are
The Rose Lowenstein Foundation for Childhood Cancer Awareness is a Missouri non-profit corporation and has received 501(c)(3) tax-exempt designation from the IRS. The Foundation was incorporated in January 2017 with the mission to raise awareness of childhood cancer and to assist deserving area families affected by childhood cancer in their time of need.
Who is Rose Lowenstein?
Rose was born to Brittany and Billy Lowenstein of Cameron, MO on November 29th, 2015. She has 2 older siblings, Ella (6) and Harrison (4). Rose was diagnosed with neuroblastoma on April 6th, 2016. The main tumor was located on her left adrenal gland, and it had metastasized to her liver and bone marrow. She suffered an ischemic stroke to the left MCA lobe on April 14th due to complications from a central line port. Rose also had 2 PFO’s (holes) of the heart.
Since we needed specialized care in Oncology, Hematology, Neurology and Cardiology, we transferred Rose’s care to Cincinnati Children’s Hospital. Her tumor biopsy showed one unfavorable marker and the doctors told us Rose would likely need chemotherapy. We were certain that Cincinnati would become our home, as the doctors explained that she would need open heart surgery before another access line could be placed, surgery to remove her ovary for fertility purposes, and then there was the chemotherapy itself.
On May 16th, Dr. Brian Weiss ordered one last MRI before a whole course of treatment was set to begin later that week. He and Dr. Agresta met us in the recovery room to tell us that her main tumor had regressed by 10%. They recommended observation and let us go home! We were in shock. We were overjoyed! Spontaneous regression! We were able to see our other children for the first time in weeks. We went back to Cincinnati every four weeks for scans, blood work, therapy, etc throughout the summer and fall. In October of 2016, we were moved to a quarterly schedule for visits as her tumors had shown continuous regression. As of May 4th, 2017 Rose’s tumors were stable, her catacholamine levels (fight or flight hormones, and a potential indicator of cancer activity) were in normal range! As a result, we were given the four most beautiful words: No Evidence of Disease (NED)! Rose was moved to 6 month follow-ups. In November of 2017, we went back to Cincinnati for her first post-treatment scans. She underwent a CT Scan that showed her tumors had regressed further from what they were in May, and her catacholamine levels were still in normal range. Her stroke and rehabilitation specialists were very impressed with how well she has recovered. She continues to show no signs of deficit from the stroke and to date, is still considered No Evidence of Disease (NED)! Her next scans are scheduled for the beginning of May 2018. We will not have to follow up with cardiology until she is four years old. Rose currently receives physical therapy once a week, and speech therapy and developmental therapy once a month until she is three years old, at which point, the doctors will decide her plan of treatment going forward.
Rose’s story has awakened us to the world of childhood cancer. We know the fear families live in every day. We know the pain and suffering the child and their family endures. Siblings are affected. Bank accounts are destroyed. Relationships sometimes broken. Although we have never experienced chemotherapy, we know many families that have, and the side-effects and sufferage that comes as a result of treatment is indescribable.
Through Rose’s story we desire to bring HOPE to those that need it most. We aim to garner compassion from the larger community, not to incite fear, but rather to raise awareness of this monster. Only when awareness is reached, will funding happen: Funding for research. Funding to directly impact families. Funding to hospitals so they may continue their amazing work, etc. Only through funding is there a chance for a CURE. A CURE must be found. 1 in 285 children are diagnosed. Worldwide a child is diagnosed with cancer every 2 minutes, 1 in 5 will not survive. Only 4% of the National Funding goes towards childhood cancer research.
We need you, your compassion, to help us raise awareness. To help us directly impact area families fighting for their child’s life. One person can raise awareness of childhood cancer, but it takes a community to make a difference.