Against AuPairCare's Decision in the Edna Valenzuela Case
On May 13, 2016 my son’s caregiver and my dear friend Edna Valenzuela was in the midst of her first chemotherapy treatment, fighting an aggressive form of lymphoma that spurred the growth of a tumor that nearly blocked off her trachea two weeks before. An email arrived to her iphone, a final decision terminating her because of her cancer diagnosis. This was only the latest cruelty we’d experienced in the last week at the hands of an au pair agency, ironically called AuPairCare Live-in Childcare. Despite our outreach and an NIH doctor’s note explaining Edna was fit to continue in the au pair program, AuPairCare is yanking Edna’s legal status in the US, leaving us scrambling with only 4 business days to prevent her from being forced back to Colombia, far away from her only treatment option.
In June last year when we interviewed her via skype, we felt an immediate connection to Edna Valenzuela, a 26-year-old Colombian who was at the time doing legal work at the Colombian Institute for the Blind. Her warmth and good humor, and her sharp mind were evident even during that 30 minute conversation. She liked kids and had lived with both of her nephews (the children of her two older brothers) when they were babies. She was older than most au pairs (who range in age between 18 and 27) and wanted to have the experience if getting to know the world beyond Colombia. Given her interest in public contracts law, the au pair program offered under the J-1 visa as an education and exchange program at the US Department of State, seemed the perfect way to get to know American culture, develop stronger language skills, and get to know an American family.
Edna arrived in the US and after a brief orientation provided by AupairCare, one of 13 agencies which hold a license with the State Department to facilitate J-1 au pair visas, we picked her up in New Jersey and drove her down to DC. Our son Jasper was barely six months old, an easy, smiley baby who immediately took a liking to Edna. It wasn’t hard to leave him with her four days later when we went to work. AuPairCare had also provided us with an orientation in which they emphasized we were to treat Edna like part of our family. While offering room and board and paying her a weekly stipend for caring for Jasper, and also paying for her required 6 education credits a year, we were to welcome her into family activities, encourage her to participate as much as she wished in our day-to-day lives.
It wasn't hard with Edna, she traveled with us to my aunt's house in the Hudson River Valley in New York, taught Jasper to dance and sing, adjusted to our mostly vegetarian diets, dining with us almost every week night. When visiting our extended families, Edna shared her favorite Colombian traditional foods like arepas and ajiaco, adjusting the recipes so that both meat-eaters and vegetarians in the family could enjoy them. We invited her to come to California for the holidays, and helped her practice English while we enjoyed hearing our son begin to say words in Spanish. Six months in, we were excited enough about the experience that all three of us decided we wanted Edna to extend her stay with us for one year (an opportunity au pair's are offered if the family is interested). AuPairCare encouraged the extension, and when we logged into to our account, a message would appear urging us to "extend with Edna now!" We checked with our local director for AuPairCare and were told that the deadline for extension was May 13, 2016. Edna needed to show she’d completed her education credits and then we could apply.
This spring was just as positive an experience as the summer and fall, although Edna developed a nagging cough that wouldn't go away. After several weeks of trying my lemon and honey remedies, taking it easy on the weekends and going to bed earlier than usual, we encouraged Edna to make an appointment with the an urgent care doctor. The doctor gave her an antibiotic but said she had a suspicion it was just allergies. Her cough sounded dry, rather than wet like a bronchial infection. Two weeks later Edna was back at the urgent care, the cough continued and now her glands in her throat seemed swollen. Edna got winded chasing Jasper around and going up and down stairs. She was prescribed allergy medication and an inhaler, all of which she had to pay out of pocket on her limited stipend (less than $200 a week plus room and board and money for transportation to class), submitting the receipts for reimbursement from her health insurance. Over the next month she went back to the urgent care twice, each time she was given more allergy medication and told she had a severe pollen allergy. It was the worst pollen year on record in DC, and somehow we bought the doctors' diagnosis, even as we watched in some consternation as her face and throat became more and more swollen and burst blood vessels appeared on her chest.
Finally on April 24th, as Edna had spent the entire weekend indoors aside from a stint in a bus to her language classes when she exited the house wearing a mask I'd bought her at CVS to keep out the pollen, we came to the conclusion that the allergy simply couldn't be to pollen. We began to suspect that one of the medications had caused this severe reaction and encouraged her to call the doctor with her symptoms again on Monday morning. On Monday, Edna called the urgent care, reporting that she couldn't breath and was told to go to the ER. She arranged for a trusted neighbor to watch our son and went down to Howard University Hospital, only a few blocks from our house. The ER doctors immediately came to the conclusion that Edna's symptoms were evidence of pulmonary congestion. When they did a CT scan they found a large mass putting pressure on her heart and lungs, barely leaving a narrow opening in her trachea through which oxygen could pass. The cough, the burst blood vessels, her fatigue and swelling were a result of this tumor. Edna was visited by several surgery teams. She was given steroids and began to have an easier time breathing and doctors later put her under for a needle biopsy of the mass. About 24 hours later, after a 48 hour stint on a respirator and a feeding tube, Edna was diagnosed with primary mediastinal large b-cell lymphoma.
The doctors at Howard shared that they were actually somewhat encouraged by the diagnosis, as this type of lymphoma is very responsive to chemotherapy. The problem we faced then was that the health insurance provided through AupairCare would require Edna to shell out thousands of dollars for chemo, since patients don't pay the negotiated rate for prescription drugs, and then submit receipts to the insurance provider for reimbursement. In fact all of the medication that was prescribed by the urgent care doctors for "allergies" has yet to be reimbursed despite Edna having submitted receipts in March and April. Just as we started to panic, thinking we'd have to come up with some kind fundraising campaign to afford the prescription costs to save Edna’s life, the Howard doctors conveyed some good news: they were aware of a NIH clinical trial in which Edna could be a candidate for participation.
Because of the type of cancer Edna has it was possible NIH would be able to enroll her in the study and cover all of her treatment costs while advancing medical science on the most successful treatments for this aggressive form of lymphoma. Edna was released on steroids and anti-coagulants, feeling better than she had in months. She began to work again and took some time off to make it up to NIH. She was screened and officially admitted as an out-patient participant in the NIH study last week. The doctors have given her a very positive prognosis: with this type of treatment her cancer has an over 90% cure rate.
Now, however AuPairCare wants her to go home to Colombia. They announced they do not want her to extend her stay with us (something that until recently they were encouraging and framed as purely routine application process). We've explained Edna's healthcare needs will be covered, that she will be able to care for Jasper, complete program requirements and we are wiling to be flexible to allow for her to access this life-saving treatment – we’ve emphasized that she will be going for chemo 5 days a month Friday-Monday for six months. This will barely interfere with our child care needs, and our family and friends have already volunteered to pitch in where needed. Even my (new) employer has been incredibly generous and flexible. Her ability to take the 6 education credits required by her program will not be compromised.
AuPairCare has given their final word. After blindsiding us by deleting our application to extend Edna’s stay (which we noticed on May 9) they now are actively seeking to end her original contract early. They insist it is in Edna’s best interest to be sent home, in contrast to the judgment of her doctors, Edna and her closest living family members. and on Friday the 13th, the final outrage, an email to Edna telling her she is terminated effective May 18, 2016 and thus will lose legal status on that date, more than a month before her original visa was to end.
In fact if she returned right now to Colombia she would have no access to chemotherapy, as she has no employer in Colombia currently. They have displayed absolute callous disregard for Edna and my family in this process, not even talking to us about their decision before deleting the application materials we uploaded (including proof of her completion of this year’s program requirements).
This all has been a very personal struggle for us, not least because Edna has provided such loving and superb care to our one-and-a-half--year-old Jasper and integrated so seamlessly into our family. I can't bear the thought of Edna being forced to return to a place where she will likely also lose the battle against the kind of cancer to which my own father succumbed a decade and a half ago, especially when with the care offered by NIH she has such a good chance of beating this thing.
Against to the decision with AuPairCare in Edna Valenzuela case
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