Hello all. I am prouder than ever to “show my stripes” this year in honor of Rare Disease Day, February 28, 2021. This year marks the second anniversary of the launch of MPN Peoria. Rare Disease Day brings awareness to rare diseases with the ultimate goal being to improve access to treatment and medical advocacy not only for those individuals living with a rare disease but also for their families and caregivers. Upon launching MPN Peoria on February 28, 2019, I shared my story about my own rare disease called MPN or myeloproliferative neoplasm, a rare form of blood cancer.
As many of you may have already known, my disease progressed in 2020, and in order to have a chance at survival, I needed to undergo a stem cell (bone marrow) transplant. There were no “perfect” matches for me in the Bone Marrow Registry so the decision was then made by my transplant physician to use our daughter Mia as my haploid (half-matched) donor. And Mia, with the biggest heart and most beautiful smile, willfully took on this challenge without hesitation or trepidation. With paralyzing fear dampened only by my unwavering faith, in late October, I left my home, my family and friends, my practice, my patients and my church family to undergo the stem cell transplant at the Mayo Clinic in Jacksonville, Florida.
The stem cell transplant was performed in November 2020 and after spending four very difficult weeks in the hospital, I was allowed to return to our rental apartment. The next three months in Jacksonville were filled with frequent doctor visits, laboratory tests, bone marrow biopsies and endless IV infusions. At the same time, I was allowed to regain my strength, adapt to post-chemotherapy side effects and changes in my body, and reflect on how the most physically exhausting, mentally challenging, and emotionally overwhelming experience of my life has also been one of my greatest blessings.
It is during times like this, when facing one’s own mortality and not only being physically distanced by the hundreds of miles separating one from home but also socially distanced by a pandemic, that the human connection is more important than ever. That human connection came for me in the form of cards, letters, texts, prayers, inspirational gifts, meals or rides for our kids, and Facebook messages from patients, friends, family and co-workers. For everyone that reached out to me directly or asked my family and/or office staff to relay a message to me, I cannot adequately thank you or tell you how much of an impact your heartfelt gesture had on my recovery. By lifting my spirits, you provided the strength and inspiration I needed to face another day. Also, thank you to the hundreds of people who selflessly enrolled on my behalf in the Be the Match Registry. Not a day will go by without me remembering your kindness.
With the happiest and most grateful of hearts, I am pleased to say that my stem cell transplant was a success. I still have a long road ahead of me, but I am becoming better at the art of just taking one day at a time. I no longer live with a rare disease, but I will never stop fighting for those that do. Our mission is that MPN Peoria continues to financially contribute to research for these rare blood cancers. Your donations get us one step closer to new treatments and cures as stem cell transplants are not a viable option for all MPN patients because of unacceptably high rates of complications and mortality. To all of our past and future donors who are helping us achieve our mission, thank you for “showing your stripes”. You are all beautiful.