Aug 16, 2020 Latest post:
Oct 21, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As many of you know, Hank was diagnosed with polycythemia vera (PV) about 17 years ago. Polycythemia vera is a type of blood cancer that causes your bone marrow to make too many red blood cells. These excess cells thicken your blood, slowing its flow, which may cause serious problems such as blood clots. There is no cure for PV, however treatments can reduce complications.
Hank would go regularly to the VA in White River Junction, VT (and then the VA in Jamaica Plains) for phlebotomy treatments. This entailed a blood draw to decrease the blood volume and reduce the number of excess blood cells. Additionally he took a medication called hydroxyurea. Thanks to these treatments, Hank lived with and managed this disease for almost 19 years with few side effects. However PV eventually progresses into either myelofibrosis or leukemia and this year Hank was diagnosed with myelofibrosis. Myelofibrosis is an uncommon type of bone marrow cancer that disrupts your body's normal production of blood cells. It causes extensive scarring in your bone marrow, leading to severe anemia that can cause weakness and fatigue. These are the two major symptoms Hank has been dealing with for almost over a year now. It can also cause a low number of blood-clotting cells called platelets, which increases the risk of bleeding. It can and has caused an enlarged spleen and slightly enlarged liver. It has also caused pulmonary hypertension and sporadic, severe itching .
With this new turn of his disease he now has fewer options. 1. Take a drug called Jakafi that will help ease symptoms, but he may not take it if his platelets drop too low. Doctors will be watching those platelets very carefully in order to start him on Jakafi, or stopping Jakafi. 2. If he is unable to take Jakafi due to low platelets, his only other option is chemo in the form of a shot in the belly for 7 days every month for as long as it helps. Unfortunately this doctor has only had one patient (with a medical profile very much like Hank's) whose life was extended for 3 1/2 years.
Mom and Dad (Judi and Hank) are very grateful for all of you, your support and concern. Understandably they have received so many emails and phone calls and it gets overwhelming. I started this site as a way to communicate any updates to all of you. Their biggest need right now? Prayers, prayers, prayers.