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In February 2011, I was diagnosed with an aggressive form of acute myeloid leukemia. After two rounds of chemo and a bone marrow transplant in June 2011, I was in remission for 12 months until experiencing a serious relapse in June 2012. Rachel passed away peacefully surrounded by her family on October 13, 2012. If you want to help, you can give blood and get registered as a bone marrow donor on www.marrow.org. The survival rate that she always chose to believe in was 100%. She will always be 100%.
How it started... In February, I was feeling very fatigued and had a constant fever. I thought I might be anemic because I had been slightly anemic when I tried to donate blood a few months before. So I called the doctor and requested a blood test. In the middle of the night the doctor called and said I was so anemic I could have a stroke or heart attack at any time and sent me straight to the emergency room for an emergency blood transfusion. They didn't know what was wrong and the next day I had a bone marrow biopsy. A few days after they confirmed the worst: acute myeloid leukemia. The sub-type is called a 5Q deletion, which is a chromsomal abnormality that makes the prognosis "unfavorable." My only chance is a bone marrow transplant.
In February, March and April I did two rounds of in-patient chemo at Kaiser that had various complications but I made it into remission. My brother was not a bone marrow match, but the doctors have since found three perfect matches for me. One of these people is going to save my life. In mid-June I will be begin full body radiation treatment at Stanford followed by ablative chemotherapy to wipe out my faulty bone marrow, which will be replaced by the immature stem cells taken from my angel donor. Hopefully, they will graft to my body and I will survive the complications of engraftment. I will stay at the hospital another few weeks until it's safe enough to be released. For the next 100 days I will need a full time caregiver and lots of rest, blood transfusions, and doctor visits.
The process is tenuous and scary but I plan on making it through it. It helps that am in remission going into transplant. The next year will be hard. If I relapse the cancer will be terminal, but if I go one year without recurrance the chances are very good that I'll be OK. At two years post-transplant they consider it practically cured. It's going to be a long road and there will be a lot of potholes. I will get through it with the support and prayers of my family and friends.
Everyone wants to help, and there is lots you can do. You can donate blood, and if you can't, ask someone you love to donate for you. Or ask everyone you know. You cannot direct your blood to go to me, but you can save someone else's life with every pint you give and there is so much need. You can also ask your blood bank to test you to give platelets. I have developed antibodies to platelets and they have to be specially matched to my DNA, so sometimes there aren't any platelets and I have to get by on prayer until the blood bank secures some. In general, there is a huge shortage of blood products, so anything you give will save a life. While many of you are not able to donate blood, you know someone who can, so please spread the word.
Somewhere out there three people (eventually match number increased to 10) have taken the time and steps to get on the bone marrow registry. One of these matches will go through the process of donating stem cells to me, a perfect stranger, to save my life. This selfless act starts by going to www.marrow.org and ordering a free testing kit, which contains swabs and directions how to painlessly add your DNA to the bone marrow registry. Even with 16 million people worldwide on the list, more than one person a day dies because they don't have a match. Leukemia is the number one disease killer of children under the age of 11. Most people don't realize that getting tested is painless and donating is an outpatient procedure with few side effects and more discomfort than pain. Unlike organ donation, it isn't invasive or surgical, and your body will reproduce the stem cells donated in a matter of weeks. Being a match means having very similar DNA to the patient, even a full sibling only has a 25% chance of matching. I was on the registry for over ten years and I never got called to give this gift.
While you can't do much to help me other than support my family with prayers, food, and goodwill, you can donate blood and get on the registry to save lives. I am keeping track of all the blood donated and the number of people who register, and each addition gives me strength to continue supporting this cause during a long life. This journey is long and arduous but I can do it. I am much younger and much stronger than this disease's usual demographic, so those nasty statistics don't apply to me. The only number that applies to me is 100%, the survival rate I am choosing to believe.
Until cure I am blessed just to be.