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6/30/2015 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Nick was officially diagnosed on June 29, 2015 as having Burkitt Lymphoma, but the diagnosis was updated July 7 as "b-cell lymphoma, unclassifiable with features intermediate between diffuse large B cell lymphoma and burkitts" which is referred to as a "double hit" lymphoma. On Aug 8, we were told that the stains had come back from his July 21 bone marrow biopsy and though they had told us it was clear, they have now found traces of a mantle cell lymphoma, making this a "triple hit" lymphoma.
Nick's symptoms began end of May (pain in his side and abdomen, night sweats and weight loss). He was first admitted to the hospital on June 2 when a CT scan revealed what Drs called a "retroperitoneal bleed". After running tests Drs told us the source of bleed is not known, but he is fine and free to go. Nick's pain worsened as days went. Nick went to the Dr several times to get more scans and check blood counts. Specialists continued to tell us this was a spontaneous bleed, it would take time to recover, pain is expected and "it is what it is". On June 12, the day before we were to leave for the beach for a family vacation, our primary care Dr suggested Nick go to the hospital to have more tests. 15 mins later the specialist called and told us there was nothing the hospital could do for him... He had a bleed, he will be in pain, "it is what it is" and he will feel better in 6-8 weeks. Nick continued to get worse, hardly able to get out of bed or eat, the entire time we were at the beach. On June 22, Nick went back to the Dr who told us there was nothing he could do. He suggested Nick go to the ER to treat his pain and from there he would try to admit him again to the hospital. There Nick got another scan and we were finally told that the "bleed" was actually a "mass" and was likely a lymphoma.
The journal entries capture our story since end of June.