Laurie’s Story

Site created on May 27, 2018

Most of you will know my story, but I wanted to give the background before explaining what’s going on now.

I was diagnosed in May 2003 with polycythemia rebra vera (PCV), a rare but manageable blood condition. With medication and occasional phlebotomies, I was able to continue working and have a normal life. In January 2010, my spleen was removed (enlarged spleen is a side effect). My platelets went crazy. I was the third case of record to have this happen. Multiple apheresis were necessary to prevent a stroke. It took a year and a half to two years to get the PCV manageable again. (There are only 100,000 people with PCV in the US.) I had been relatively health during that period (oh, except for that brain surgery caused by the car accident in 2016!)

This February, I started feeling really tired. Blood work and a bone marrow biopsy in March showed that in addition to the PVC, my bone marrow has myelofibrosis (scarring). This is somewhat expected, result of PCV. The best course of treatment for the myelofibrosis is a bone marrow transplant.

I have met with members of the Stephenson Bone Marrow Transplant (BMT) Center and will be having a BMT this summer. Fortunately a donor was found very quickly, and the donor matches on 10 of the 10 proteins needed! While the BMT is a long and difficult journey, I am blessed to have the absolute best support from my family and friends. I have been blessed with my doctors and nurses at Norman Regional Cancer and Oncology, they continue to be amazing. I have also been blessed with my office family, they have been so understanding and supportive. I will be retiring the end of June and will miss them terribly.

Fifteen years is a long time to be sick. After the transplant, the PCV will be gone and I will be well. Phew, that chokes me up every time I think about it. I will try to keep this updated. I will be well -Laurie



Laurie's BMT was successful and was 95% engrafted. Unfortunately she did not make it to Day 100. The Epstein Barr virus caused multiple complications. She was hospitalized on Day 56, went into a coma on Day 64 and did not wake up. Laurie passed away on October 10.

Newest Update

Journal entry by Jen Sherwood

It’s been three years since Mom was told she needed a stem cell transplant to survive more than three years. A rare side effect of the polycythemia vera she had been living with for 15 years is myelofibrosis, a condition characterized by the buildup of scar tissue in the bone marrow. Because of the fibrosis, the bone marrow is unable to make enough normal blood cells. Her choice was to have a risky stem cell transplant and the chance of a new life with healthy blood or live with the myelofibrosis with a life expectancy of three years, and those three years were not expected to be a full pleasant three years. Her quality of life would deteriorate as the scar tissue continued to build in her bones. In our conversations about getting the stem cell transplant, she tearfully told me she wanted just the chance at having a normal life, even with the risks involved (that same hope is transcribed in her words on the main page of this site). I told her that I understood but that I reserved to be mad at her if she died from the stem cell transplant…well, we know how that part ended.

Over the last three years, there have been times when I was mad about losing three years’ worth of time for her, though I would try to hold on to the memory of the hope she had that she had made the right decision. Lately I’ve been thinking that we were getting close to that three-year mark where if she had done nothing, she would be gone by now. This week, I finally made total peace with the transplant. It really sank in that if she had not had the transplant, these last months would have been painful. I even looked up what happens to people who live with myelofibrosis, and one doctor’s words keep echoing in my head: “there is a burden of suffering…Patients with myelofibrosis suffer greatly.” In her last months, Mom would have had joint pain, bone pain and other miserable side effects. She also would have been very aware that she was nearing the end of her life.

Instead, Mom's last days were happy. For many people, their last memory with Mom was at her retirement party, and that’s wonderful. She would prefer it that way. In general, her spirits were good toward what we now know was the end, and she wasn’t in pain. Mom had a last visit with her friends from Ponca. Her last weekend at home was spent watching OU football with best friends. Of course we didn’t know these were her last days, but in most ways, it was better that way.

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