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 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: 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, which cost $2500 each. 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. If he is accepted, he will need money to travel to Bethesda, MD for tests and treatment. The current trial 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:
The NIH trial would be free, but we would need funds for travel and living expenses while we're there. Treatment for aplastic anemia at NIH lasts at least 6 months, although we won't have to be there the entire time as our local hematologist can administer some of the treatment. Whatever treatment we go with, we will be in serious medical debt. We do have insurance, but our deductible is very high and we're required to pay 30% of all medicals bills after that.
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 (don't know how we'll handle flying yet). 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.).
Our intention is for Joe to rest, relax, and retreat. Part of his therapy is to avoid toxins, so he would like to spend more time in the mountains, although he can't stay at a very high altitude and he can't be more than 30 minutes from a hospital.
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.
Joe and I are optimistic about a full recovery because Joe is generally very healthy and strong. Lucia needs her awesome fun dad, Alicita needs her witty, creative husband, and the world needs Joe's empathetic, intelligent brand of good guy.
If you can help in any way financially, we would very much appreciate it. If you want to help in another way, here are some other ideas:
*Mountain Rentals*: We really need help finding rentals for Joe to visit/stay at for rest and relaxation. Ideally, this would be for an extended stay. If you know anyone who has a somewhat remote property in the mountains or foothills of Colorado, please let us know. Location can't be higher than 8500 feet and should be within 30 miles of a hospital. It needs to have a decent kitchen due to Joe's strict diet. Ideally, it should be a green building, perhaps straw bale (definitely not new construction that's off-gassing), an "earthship," or a wood cabin with low-VOC stains and paints. Free or cheap would be best, but a rental is also a possibility. Ideas for good locations in Colorado include Evergreen, Steamboat Springs, Glenwood Springs, Basalt/Aspen/Carbondale, Manitou Springs, Salida/Buena Vista. Areas around Taos or Santa Fe might be options as well.
Babysitting: We need people to watch Lucia when we go to doctor appointments and when Alicita goes to work on Tuesday and Thursday afternoons and evenings if Joe doesn't feel well.
Dogsitting: We need someone to dogsit Rex when we travel to see out-of-town doctors.
Dog Walking: We need people to walk Rex when Joe is too tired or when we need to see doctors or go to the hospital for infusions.
Food: We need meals for Alicita and Lucia when Joe's Paleo/Autoimmune diet just doesn't cut it.
Visits: We appreciate happy people paying us, Lucia, or Rex visits. No pity, no drama, no depression please. Just nice intelligent or fun conversation.
Movie/TV Suggestions: We need movie and TV suggestions for funny, witty, optimistic fare. Nothing depressing, no illnesses, no extreme violence. We do still like stuff that's smart and unusual.
- Mari Fernandez
- Renee Lerman
- Aida Diaz
- Griselle & Gary Farbish
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