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Graft Versus Host Disease and Blood Cancer Awareness Month

September is Blood Cancer Awareness Month—so says the Leukemia and Lymphoma Society. I’m going to do my part to make it so. In lieu of fasting or dumping ice water on my head, I will instead be returning to writing at Hoechemo. It’s been a fun summer, but I miss it here. I’ve learned through this blog that I’m healthier when I’m writing. I’ve gotten away from sharing/explaining the day-to-day physical and emotional challenges I face as I struggle to return to normal life. In turn—amongst friends and family—the understanding of what I’m going through has waned with my writing.

This month, I hope to use this blog to shine a spotlight on Graft Versus Host Disease (GVHD)—mine and others. It’s been weighing on my mind and taking it’s toll on my body. I don’t understand it, but I want others to understand it. I want doctors to understand it. I want insurance companies to understand it. I want allogeneic transplant patients to understand it.

We’ve got a long way to go.

I just returned from the National Institutes of Health in Bethesda, Maryland; where I volunteered for a natural history study of Graft Versus Host Disease (GVHD). Besides all the needles and biopsies, it was a great experience. No big answers, but lots of little answers. I am encouraged to amp up my understanding of the disease.

So let’s grow together. My life—and so many others—depends on it. 

I’d like to begin by posting my schedule at the NIH. I will be receiving the results of the testing this week. I hope to go through the week in detail with you, once I receive my final report.

If you or anyone you know has received an allogeneic stem cell transplant, feel free to pass on my blog. I’d love for them to join the conversation.

Always choose a clinical trial where good people in your family live. We had the pleasure of staying in D.C. with my sister-in-law, Austyn. She spent the week putting the final touches on a public Montessori charter school she confounded that will be opening this week called Lee Montessori. Proud of her and her coworkers. Wishing them the best on their first year. #TrialsOver #SchoolsJustBeginning

Always choose a clinical trial where good people in your family live. We had the pleasure of staying in D.C. with my sister-in-law, Austyn. She spent the week putting the final touches on a public Montessori charter school she confounded that will be opening this week called Lee Montessori. Proud of her and her coworkers. Wishing them the best on their first year. #TrialsOver #SchoolsJustBeginning

Leukapheresis is a procedure that spins my blood in this apheresis machine to separate white blood cells—specifically lymphocytes in my case—from red blood cells and plasma, for research. It’s like a high tech salad spinner of blood. Pretty awesome. #NIH #GVHD # Leukapheresis #Apheresis

Leukapheresis is a procedure that spins my blood in this apheresis machine to separate white blood cells—specifically lymphocytes in my case—from red blood cells and plasma, for research. It’s like a high tech salad spinner of blood. Pretty awesome. #NIH #GVHD # Leukapheresis #Apheresis

Development office round table: “let’s do something with a cat in it. No…let’s do something with a cat and an American flag. Wait…no! Let’s do something with a cat in an American flag hammock. Yeah…let’s do that.” #donateblood #nih #cats #america

Development office round table: “let’s do something with a cat in it. No…let’s do something with a cat and an American flag. Wait…no! Let’s do something with a cat in an American flag hammock. Yeah…let’s do that.” #donateblood #nih #cats #america

On the road to volunteer for a week long non-treatment natural history study of Graft vs Host Disease at the National Institute of Health. Excited to learn more about this phenomenon for my own health, also honored to have the opportunity to contribute to the knowledge base for others in the same position. #GVHDuDontKnowMe

On the road to volunteer for a week long non-treatment natural history study of Graft vs Host Disease at the National Institute of Health. Excited to learn more about this phenomenon for my own health, also honored to have the opportunity to contribute to the knowledge base for others in the same position. #GVHDuDontKnowMe