This foundation was founded in honor of our son Nathan who passed away on May 17th 2016. He suffered terribly over the course of 2 years. Nathan was diagnosed at 9 years old with Juvenile Pilocytic Astrocytoma, which is benign brain tumor with very good prognosis. Because, the tumor was located on the brain stem and could not be removed he was treated with low grade chemotherapy to keep the tumor from growing. It is important to note, these types of tumors always burn themselves out around the age of 20 years old.
Sadly, one of the chemotherapy treatments caused his genome to be altered resulting in secondary leukemia with 3% survival without a stem cell transplant. The treatment for leukemia is very aggressive and a horrible experience. Nathan was able to get into remission after 2 rounds of treatment and received a bone marrow transplant two months later. The process was worse than the leukemia treatment (I will get into the details in another post) but after 1 month Nathan was able to leave the hospital and go home. A few weeks after being home he started having trouble breathing. The doctors hoped this would resolve but unfortunately it did not.
On Christmas Eve he was diagnosed with Bronchiolitis Obliterans. Neither my husband or I ever heard of this but soon found out this was due to Graft vs. Host of the lungs. Over the course of 15 months Nathans breathing ability decreased day by day to the point where he could not breath without the assistance of the Bipap machine, high levels of oxygen and morphine (used to reduce the feeling of suffocation). Slowly, he suffocated to death. You cannot imagine how horrific this was.
My husband I and I were very proactive in Nathan's care, researching treatments and looking for ways to save Nathan's life. When he was diagnosed with the Leukemia, we were no stranger to the medical process as caregivers (due to the brain tumor). However, we felt we were uninformed and misinformed at times. This foundation's goal is to help those who need information quickly and help with navigating through an acute illness. Please visit our website https://www.nathanleaffoundation.org/ for resource. We are continuing to build our repository of information so please visit often. If you or a loved one need assistance, please go to the "Contact Us" page and send us a note.