Beyond Cancer - Hemophagocytic Lymphohistiocytosis HLH

Me, Demara and Grandpa McCann at Easter, @ 1980.

Cancer is devastating. Once a diagnosis is made, it changes your life forever. I can't imagine the feeling of being diagnosed. I know too many people who live with cancer (including mom) and too many people who have lost their lives to cancer.

So - what could be worse than a cancer diagnosis? Enter into the equation a disease that takes months to diagnose, is rare and can severely debilitate a person in less than 6 months. That has been the story of my cousin Demara. Demara is my mom's sister Ruth's (Sharon to some) daughter who was eventually diagnosed - after many months - with HLH... Hemophagocytic Lymphohistiocytosis... a life threatening immunodeficiency. It started out with fever and fatigue. The symptoms not pinpointed to anything specific until it got way out of hand.  A simple overview here >>

Basically, Demara's body betrayed her and turned into her worst enemy. And even though it is not cancer, she has received rounds of chemotherapy to combat what her body is doing and slow the disease. The only hope Demara has is through a stem-cell transplant. The good news is she has found a match and now has a date to start the treatment - March 5. Demara and her family have moved to Boston for the next several months in order for her to have the transplant.

We take so much for granted - walking, eating, running...going to the bathroom by yourself! I am thankful every day for my healthy body. Demara has been blogging about her experience (as we know blogs are a great way to keep family and friends updated) at Glittered Path. I am amazed at what she has been through - surgery (remove spleen), chemo, infections and sickness, hip surgery (effects of HLH and steroids have eaten away the joint, very painful) and more chemo. Her attitude is amazing.

If you can help Demara, she has a GoFundMe set up to cover expenses while she and her family are in Boston for her stem-cell transplant. In my mind it is simple - give up a few dollars and go without something for a month...not only because Demara needs this, but because you can. I want to go without a new pair of running shoes or whatever-is-on-sale on Amazon.com because I can. Demara can't go without a stem-cell transplant, and Demara's family can't go without her.