Thank you so much for visiting this caring bridge website. We thought we would set up this website to help communicate with family and friends about John's condition and progress. We, as a family, feel so incredibly supported with love and kindness and genuine concern and goodwill. We are so fortunate to be surrounded by an amazing community and for that we are truly thankful.
So I guess I will start from the beginning. John was diagnosed with Polycythemia Vera in the spring of 2006. Polycythemia Vera is a rare blood disease in which the bone marrow produces too many red blood cells and other blood components. This results in a thickening of the blood which can lead to blood clots, stroke and heart attacks. It is essentially a slow growing blood cancer, which eventually will progress to a myeloproliferative neoplastic phase and eventually leukemia. John did not let Polythycemia interfere with anything. As you know, he is a very healthy person (multiple marathons and triathlons) and has always led a very active life style including teaching, coaching, volunteering. It was managed with a series of medications (including Hydroxyurea, a myelosuppresive drug and aspirin). Additionally, he would be phlebbed on a regular basis (blood draining procedure in order to diminish the blood cells in his body). This worked for a very long time.
Over the past couple of years, John was having more difficulties and soon it became apparent that the disease was progressing. The bone marrow biopsies that had been stable in the past were worsening and his spleen was enlarging. It became apparent that it was time to consider bone marrow transplantation- a cure. At the end of the school year (and an incredible trip to France), John's treatment changed to a new kind of intravenous chemotherapy in order to improve his bone marrow and get him ready for the transplant. He was able to receive it on an out-patient basis which was wonderful. Unfortunately, the disease once again progressed on the treatment. John was diagnosed with acute myeloid leukemia (AML) on August 6.
So here we are now, Day 13 in room 11-222 in Smilow at Yale New Haven Hospital. John is amazing. He is so positive. If you ask him any time, day or night how he is feeling, his answer is ALWAYS --- 'Strong and Healthy'. Within an hour of his admission to Smilow, John had chemo running continuously by IV for a full 7 days. The chemo's job is to get kill off the cancer cells in the bone marrow. The chemo was tough on John but he got through it without any issues.
Now we are in the waiting game. The effects of the chemo continue even when the infusion stops. He is monitored very closely for complications and side effects of the chemo. He is transfusion dependent currently. Basically, they check his blood every day at 5am and check the levels of the hemoglobin, white blood cells and platelets. If they are too low, he gets a transfusion of the cells. It makes him feel so much better and gives him energy. He is also monitored very closely for infection as he has essentially no white blood cells to fight off infection.
But, on the bright side (there is always a bright side)..... we have an amazing team of health care providers around the clock making sure that he is getting every thing he needs to fight his disease and be cured. He is comfortable in the hospital and loves the steady flow of visitors, calls and texts. We have had amazing meals provided to help with the burden of shopping and cooking and preparing-- we cannot thank you enough. He are all eating so well and we so appreciate every meal. We feel the love and support of our family, friends and community. We are being taken care of in every way imaginable. And, I have an extremely easy commute to work (elevator down 9 flights to pediatrics).
John is doing great. I will post some pictures and keep you posted. We have a long road ahead, but we are ready for the journey. It is just another Marathon.