A Patient Story: Labor of Love

I have been living with an MPN for thirty-four years and sometimes that’s hard to believe!

When I was a young thirty years old, I was diagnosed with Essential Thrombocythemia.  After several years of adjusting to that diagnosis, my life became very routine.  I was working part-time as a teacher, raising two kids, and my husband and I were foster parents.  And six years after my diagnosis we adopted our third child.

Time moved along and in 2016 I was diagnosed with Myelofibrosis. Although I always knew that myelofibrosis was a possibility, I must admit the diagnosis shocked me.  Treatment started and we met with a transplant doctor to search for a donor. Much to our surprise we discovered that I had no donors in the registry.  I was also told that I would have less than a 1% chance of finding a matched donor due to having not one, but two rare HLA markers.

That disappointment was the motivation I needed to start helping myself and others.  My community helped me host donor drives and raise money for BeTheMatch.  We added over one thousand donors to the registry in three donor drives! I joined Facebook groups specifically for myelofibrosis and from these groups, I learned that patients consider the date they receive their new stem cells as their new birthday.

Even though a transplant was not going to be in my near future, I wanted to spread joy to those having a stem cell transplant.  I started making personalized “Happy Birthday” pillowcases and looked for patients in the Facebook groups posting about their upcoming transplants. The pillowcases are made from fabric printed with Happy Birthday, and I add a colorful border that has their name embroidered on it. Before I ship the pillowcases, I take a picture and post it to the Facebook page which allows me to get the word out that I gift pillowcases and for other group members to post well wishes. Now about 40% of the pillowcases I ship are based on requests and that makes me very happy!

Since I started making the pillowcases in the Fall of 2016, I have shipped two hundred ninety-two pillowcases to forty-one states and to seven countries!

I have found different kinds of happy birthday fabric so the patient never knows what design they will receive.  My pillowcases are made with prayers for the patient’s peace, patience, and perseverance as they recover.

I’ve come to realize that my diagnosis with not one, but two MPNs has become a real blessing to me.  We would not have adopted our youngest child without this diagnosis, I would not have had so many friends and family tell me how much I mean to them without this diagnosis, and I would not have been able to spread so much joy through the gift of the pillowcases without this diagnosis.

I feel that my life is like a book. It is up to me to decide how I am going to fill those pages. I have been blessed by a God who loves me fiercely and has given me an attitude of gratitude. So, I will fill those pages with goodness and work on blessing others.