Friday, April 1st – Meeting with the Hematologist confirmed the internet diagnosis of Myelofibrosis; more specifically Post ET Myelofibrosis. A rare bone marrow cancer. Post ET meaning it develops after a period of Essential Thrombocythemia. For those that are the type that like to research like me, a good place to start is: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057.
Doctors indicated that the median life expectancy for someone with this stage of the disease is approximately 36 months. Meaning that half the people live less than 36 months and half will live more than 36 months. This can be improved if he proves to be a candidate for a stem cell transplant down the road a couple years. Our first priority will be getting him on Jakafi; currently the only approved medication known to be effective for Myelofibrosis.
At this point, they believe that the lesions that were showing up in the scans are from the MF and not metastatic bone cancer so that is a blessing. Based on how he has been feeling and how fast the cancer has progressed, we are relieved to hear at 36 months is a possibility. Realistically none of us are promised tomorrow, so we will go forward grateful for every day.
We are thankful for so many people and things. Gifts of food, traveling money, calls, texts and cards have all been much appreciated. Equally important are some things that have happened that have little or no explanation. I want to share what I believe your prayers have done for us.
First, our thanks to a special friend for offering his words of experience at Mayo Clinic that opened Scott’s mind to the need go for help outside of Kalamazoo. Your words made all the difference.
The ability to find the awesome little VRBO house that made having Tal go with us very affordable and comfortable. His willingness and ability to take a week and stay with us was incredible and we will be forever grateful for his (and Cindy’s) support. Spending a week alone while Scott slept most of the time would have been very depressing. Instead, we both put on about 10 pounds – “getting our eat on” – quote from a movie we watched – aka stress eating together. 😊
After learning of Scott’s enlarged spleen, I had returned to my internet searching. What I found that night was information I hadn’t found before and it was clear that Scott had a textbook case of Myelofibrosis. I told Scott what I had found and tried to pull it up again and that same exact information was nowhere to be found. Similar sights had good information but nothing as clear and obvious as what I had viewed the night before. Having this “vision” before meeting with the hematologists made the doctors news much easier to hear. It made it confirmation rather than shock and fear.
Before we left for Mayo, I had learned from a customer that he had a condition in the same family as Essential Thrombosis and was having great success with Jakafi. Knowing that he has lived long past his initial diagnosis and is able to lead a normal life with this medication is VERY encouraging.
We made it home in great time despite the snow and rain, so prayers for safe travel were granted as well. While this road isn’t the path we had planned, the people that have been placed in our path have been purposeful. The doctors and staff at Mayo Clinic were amazing and we would highly recommend going there. We trust that we will continue to be blessed with miracles in this difficult journey.