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Jan 11, 2017 Latest post:
Jun 14, 2019
Welcome to Justin's journey to fight Histiocytic Sarcoma.
Justin was diagnosed with a rare blood cancer called Histiocytic Sarcoma right before Christmas. To give you some background, this all began in early December when Justin began having some abdominal cramping. We thought it was the stomach bug or something he ate but it worsened and he ended up checking in to the hospital. They found some abnormally enlarged lymph nodes that caused concern. Given his history of Leukemia they admitted him for a few days and performed a biopsy. We had a long waiting period where the doctors at Beth Israel were trying to pin point exactly what was going on with his body. They were able to rule out Leukemia and Lymphoma but they knew he had too many histiocytes (white blood cells). The overgrowth of these histiocytes were causing the enlarged lymph nodes (which we now know are tumors in his abdomen). The tumors were/are pressing up against his intestines and stomach which is causing the abdominal cramping.
Finally, the doctors were able to determine he had a rare Histiocytic Disease but just didn't know which one. Luckily, the doctors sent his biospy results to Dana Farber Cancer Institute for testing and a doctor there was able to confirm the specific disease was Histiocytic Sarcoma. We now know this is a very rare blood cancer. The doctors know this is somehow linked to his Leukemia but they aren't exactly sure how as there aren't enough people and data to make that exact connection yet. There have been approximately 500 documented cases of this cancer so we are in uncharted waters with regards to treatment. Even more, the doctors have never seen Histiocytic Sarcoma occur 20 yrs+ after someone has been in remission from Leukemia so Justin's case is even more rare.
The good news is that "The Specialist" for this specific cancer is right here in Boston at Dana Farber Cancer Institute so we don't have to go anywhere for treatment. The goal is to get this cancer in remission and reduce the size of the tumors and then move forward with a Stem Cell transplant. Given Justin's history of already having cancer and the knowledge that Histiocytic Sarcoma has a tendency to come back after remission the Doctor thinks it is best that he has a Stem Cell transplant. The Stem Cell transplant will basically replace his current Immune System that is not working properly. The transplant will also help get rid of whatever "wonky" DNA cell that is producing cells that are mutating.
We have a road map and a clear path. With God's hand we hope that it is a short and smooth ride. However, we trust that he will be with us every step of the way.