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I'm blessed with a beautiful life, wonderful family and friends, and had an exciting career. But, in October 2013, I was suddenly stricken and diagnosed with acute myeloid leukemia (AML) following a two week illness not unlike a flu. My life changed immediately.
I was treated by Kaiser Permanente Hospital in San Rafael, California for months where I received multiple rounds of chemotherapy. This treatment did not knock out my AML and my only hope for a cure was to go to Stanford Hospital for a bone marrow transplant (BMT) in March of 2014.
The BMT was very intense and painful but I made it out of Stanford alive. I was doing great and growing stronger until November of 2014 when my blood counts again dropped. I am now being treated for a rare bone marrow condition called serous atrophy, which keeps stem cells from functioning/multiplying properly in my bone marrow. I lost a significant amount of weight and have intense fatigue, must avoid public places (due to infection risk), and as a result spend much of my time lying in bed.
I deeply want to live but desire to have a quality of life that includes dance, community, working for environmental/social causes, being able to enjoy time in nature and spend quality time with my beloved newlywed husband Andy Peri.
I am surviving on blood transfusions and am in a place of yearning to survive. I am also open to letting go of this life with grace should my options fade away. What carries me more than anything else is the dramatic, soul-enriching love of family and friends and my own love and acceptance of change and all that has come to pass.
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Tag Archives: platelet transfusion
It’s been many weeks since we provided an update on Deb’s health and her battle with acute myeloid leukemia, one of the most challenging and low survival rate cancers. For the past weeks, we have been waiting for results from … Continue reading
As I celebrate Mother’s Day this year, I am grateful to be in CA supporting my amazing daughter Deb in her ongoing battle against leukemia, while I dearly miss my equally amazing daughter Chris and my delightful grandchildren, Carly and … Continue reading
Compared to most of Deb’s hospital stays, this was a short one … but any number of days in the hospital is more than we want. Deb was released on Saturday after her latest chest x-ray came back clear. She … Continue reading
One thing Deb really hoped to avoid was going back into the hospital. For the past 7 weeks at home, Andy and I have done everything we could to keep that from happening. We’ve made sure that Deb receives all … Continue reading
Deb has been out of the hospital for a month now, and I know an update is long overdue. Deb was extremely weak when she came home, and is still struggling to do basic things like walk up stairs alone. … Continue reading
Deb’s chemo treatments were from Jan. 7-11. The side effects set in the second week, and she continues to deal with other challenging issues – breathing difficulties, coughing, fever, and low blood counts with frequent platelet and red cell transfusions. … Continue reading
People have been asking me (Mary Lou) why there haven’t been any recent updates, and the answer is simply that we have been very, very busy. The happy news I have to share is that Deb and her sweetheart Andy … Continue reading
Dear Friends, As you know we’ve been waiting for news on my bone marrow biopsy which was done twice because of inconclusive test results. Unfortunately, on Tuesday the Stanford doctor told me he is 99.5% sure that my condition is … Continue reading
Hi everyone, this is Mary Lou, Deb’s Mom. Deb had been recovering well from her stem cell transplant (March 19), with only minor issues over the past few months. By September she felt like she was getting more energy back. … Continue reading
Good news! The plan is that I’m moving home soon! I left Marin on March 9 to come to Stanford Hospital to have my bone marrow transplant (BMT) and to be cured of AML forever. I was discharged on April … Continue reading
Happy Easter everyone! It’s another lovely sunny day in Stanford. Since we’ve been here, day after day has been beautiful and cloudless, one of the things that people love so much about California … unless, that is, you cannot be … Continue reading
This is Deb’s Mom again, Mary Lou, and I am happy to say that Deb is improving a little every day. It’s truly amazing when I think of Deb’s anonymous donor, a 32 year old man from Europe, whose blood-making … Continue reading
I am happy to say that Deb was discharged from Stanford Hospital late Tuesday afternoon. She was so glad to come to the lovely townhouse we are renting, and not be disturbed with beeps, taking vitals every 4 hours, etc. … Continue reading
It’s hard to believe, but we are actually starting to talk about when Deb will be discharged from the hospital! The doctors had said she would improve quickly when her white blood counts came up, and so it is. However … Continue reading
We were thrilled this evening when Deb’s blood counts came in and we learned that engraftment has started! (Engraftment is when the stem cells she received from her donor start growing and developing, and her bone marrow and immune system … Continue reading
Despite the pain and other side effects that Deb has suffered, the doctors and nurses continue to tell us that she is doing really well. The side effects are to be expected, and mean that the treatments are working as … Continue reading