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Jeremiah Jr. (LJ)

Jeremiah Jr. (LJ) was originally diagnosed with pre-B cell acute lymphoblastic leukemia in February of 2011 at the age of 5. He did really well with treatment but began having severe headaches in June of 2013. A spinal tap and bone marrow biopsy revealed his cancer had returned in both his marrow and had progressed to his spinal fluid. He immediately began prepping for a bone marrow transplant. The prep involved high-dose chemotherapy and cranial radiation which aided him in achieving a second remission. Just prior to the actual transplant, he received a very large dose of radiation, this time to his whole body (this is intended to destroy all of his original bone marrow). The day after LJ’s total body irradiation, September 17th, 2013, we experienced the pure love that one brother has for another when our youngest son, Jonah, who was 6-years old at the time, loving and willingly underwent general anesthesia to have his bone marrow harvested to save LJ’s life. Jonah’s procedure took a couple of hours, and during this time the bones in his hips were poked over 200 hundred times in order to retrieve the amount of marrow necessary for transplantation. Jonah was required to stay in the hospital overnight, and although LJ was on strict isolation, Jonah got to watch his brother get his lifesaving transplant from behind an isolation door. This was the most beautiful thing we have ever had the pleasure of viewing, despite the circumstances that brought it on. LJ began the recovery process, and he did exceptionally well. He was discharged just 17 days after the transplant took place. In February he was nearly weaned off of his anti-rejection medications when he started complaining of headaches again. Another spinal tap and bone marrow biopsy were performed, and it was determined that his cancer was back (and quite possibly had never left) in his spinal fluid. This time, his bone marrow was clear and further tests determined that he was considered fully engrafted. At this point, LJ kind of fell off of all protocols. It was explained that relapses after transplant usually occur in the marrow along with or without spinal fluid involvement. It is not common to have an isolated spinal fluid relapse after transplant. The transplant doctors and oncologists discussed his options and decided to treat the leukemia with chemotherapy directly in his spinal fluid and to treat his bone marrow preventatively. The protocol chosen has a high success rate for isolated spinal fluid relapses in children prior to having a transplant. This is the treatment he is currently on, and it is expected to last another 2+ years. He was also referred to Children’s Hospital of Philadelphia for an immunotherapy trial. He was accepted, and we will be traveling there later this year to have his T-cells harvested and genetically engineered to fight his leukemia. The T-cells will be stored and used if the current protocol does not produce the expected outcomes. We also have the option of another bone marrow transplant should it be necessary. It has been a long 3 years, but LJ has more than proven himself strong and resilient, and we are determined to beat cancer once and for all!