The Beginning of a long journey ("If Winter Comes" No. 1)

sunset by john nyboer

It started with Misdiagnosis #1. His sinuses were hurting him. it was just a sinus problem. A doctor prescribed him antibiotics (Cefnidir).

Then, he had terrible back pain and trouble sitting down. As the weeks passed, he continued to feel worse.

Following a bout with the chills, his fever spiked at 104, so we went to the ER.

  • Chest X-ray—OK White blood cell count—low

Discharged, they tell him to follow up with an infectious disease doctor, Misdiagnosis #2, that doctor thinks it's Viral Meningitis.

The fevers and the pain continue. Then one morning he wakes up with severe chest pains, unable to take a deep breath. Lots more tests, some new drugs including Tylenol and then steroids. Misdiagnosis #3: Lyme disease.

But then one morning, about six weeks after this started, he awoke with pain in the back of his head, its like a lump that feels like the bone and its bigger on the left hand side. Very sore to touch. To the ER and an internist, and then LOTS more tests.

After two days of tests, they did a bone marrow biopsy, and that's where we are right now, awaiting those results …

"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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