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On May 31, 2017, the day of Lucia's preschool graduation, Joe got a phone call from his doctor telling him to go to the ER because a routine blood test indicated severely low platelet levels and very low red and white blood cell counts. We dropped Lucia off with our neighbors Bill and Bob and drove straight to the hospital, where the ER doctors did an excellent job of scaring us by theorizing Joe must have leukemia. They also stressed that Joe's platelets were so low (platelets make your blood clot) that he could have a "bleeding event" at any moment, which is as helpful as road signs that say "Falling Rock."
We spent the night, and the next day Joe had a platelet transfusion before they gave him a bone marrow aspiration and biopsy. Since then, we've been going to the hematolgist/oncologist once a week, who tested for viruses, environmental toxins, and genetic diseases--and found nothing. Eventually we got authorization from our insurance to see a hematologist/oncologist specialist at University of Colorado Hospital, which is a research institution. That doctor ordered more tests for more rare viruses, toxins, and genetic diseases, as well as a bilateral bone marrow aspiration and biopsy.
We finally got a diagnosis of severe aplastic anemia (after seven weeks), which is a very rare disease where the bone marrow stops producing enough blood (platelets, red and white cells). Our regular hematologist had earlier eliminated aplastic anemia based on the first biopsy and the rarity of the disease, saying "there are more doctors studying the disease than there are people who have it." That's actually an exaggeration, as Dr. Neal Young is the go-to guy for treating aplastic anemia. Here is a link to the AA Foundation: http://www.aamds.org/diseases/aplastic-anemia
Only 600-900 people a year in the US are diagnosed with aplastic anemia (it's about 3-4 people per 1 million): http://www.aamds.org/questions/how-many-people-are-diagnosed-aplastic-anemia-each-year
We've been in contact with Dr. Young at the National Institutes of Health (NIH) to see if Joe qualifies for a clinical trial: https://www.nhlbi.nih.gov/health/health-topics/topics/aplastic/trials
In the meantime, we've also visited another doctor in Colorado who does holistic healing. He utilizes targeted supplements and mind-body work in addition to genetic analysis to pinpoint mutations that indicate dysfunctions not detectable via traditional medical investigations. These methods may work on their own or in concert with traditional medical treatments.
Joe is determined to find a path to healing that does not involve dangerous or potentially damaging pharmaceuticals.
In the meantime, he will continue to see the hematologist once a week and may periodically require platelet transfusions. He may also require red blood cell transfusions in the future, which are even more expensive.
If we decide that Joe needs to be treated using the traditional medical regimen, we will apply for an NIH clinical trial. The NIH trial was suspended for unexplained reasons but Joe is undergoing immunosuppressive treatment as per NIH protocol at Colorado Blood Cancer Institute (where he is the first to receive the 3-drug treatment), which involves two immuno-suppressive drugs and a synthetic growth factor, administered intravenously and then orally. Course of treatment is typically 6-12 months. Here is the 2017 medical journal article on the immuno-supressive treatment: (https://funds.gofundme.com/dashboard/joe-aplasticanemiafund/customize/Here%20is%20the%202017%20medical%20journal%20article%20on%20the%20immuno-supressive%20treatment%3A
Joe is currently not working. He looks and feels pretty good for someone with his blood levels, which continually surprises nurses and doctors who come across him during treatment (they look at the numbers and expect to see the living dead). He is tired and needs to rest and sleep much more than usual. He can't go into germ-filled places like schools or gyms. He can't do anything that would lead to accidents or blood loss (no hammers, no power tools, no bicycling, no climbing trees, no skiing, etc.).
Thanks to our families, who have been taking care of Lucia in Denver and in Miami, and to our neighbors, who have watched Lucia, walked and played with Rex, and fed our fish.