A Diagnosis ("If Winter Comes" No. 2)

sunset by john nyboer

Probably the most horrible day in my whole life. I left the hospital early morning to go home and get the kids ready for school and come back to the hospital. 

A few minutes after arriving Dr. Sigefoos walks in and says "so we need to discuss what to do next as of your treatment." Adrian tells him that he hasn't told us and Dr. S asks if he wants him to do it. 

He explains that AJ has something called hemophagocytic syndrome. A disease that is eating up blood cells good and bad and basically not recognizing his organs as his own. I found out later that the cure rate for this disease is about 20% (!!!) I think there was a reason for them not to share that with me right away. 

Dr S, was very upfront with us and made himself available to us afterwards. He said that AJ would get a bone marrow transplant. It would be a risk in that but he should be fine since he is young and strong. He also said that he could die from this disease.... my world fell apart....

Later on in the evening when I went back to the hospital, Adrian has spoken to Dr. Beth Helerstedt and she had sent his lab works to Houston - MD Anderson Clinic, they suggested that he didn't have hemophagocytic syndrome (Misdiagnosis #4), he had Anaplastic Large Cell Lymphoma with hystiocytes. That is a much better diagnosis that can be cures with chemo and he just might need a transplant.

So that is the better one of the two bad ones and they will reconfirm tomorrow.

"If Winter Comes," A blog about anaplastic large cell lymphoma"

This blog follows the journey undertaken by my husband, by me, and by our family as my husband battles a disease we never saw coming: He was diagnosed with a rare subtype of T-cell non-Hodgkin's lymphoma known as Anaplastic Large Cell Lymphoma (ALK+) at the age of 32.

Photo by John Nyboer

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