Zaiya's medical story began in July 2018 when she suddenly had yellow eyes. A trip to urgent care led us directly to the ER and a week in the hospital in Sacramento as the pediatric gastroenterologists diagnosed her with unexplained hepatitis (inflammation of the liver). She skin and eyes turned more and more yellow as she underwent every test that the doctors could think of. They ruled out all infectious causes and the known autoimmune causes and decided that it was most likely caused by an unknown virus. She was eventually released from the hospital, but continued to worsen daily with blood tests showing very severe liver disease. We drove to Stanford (2.5 hours away) for a second opinion and ended up staying for a week. She was hospitalized again and underwent many, many more tests. The team of pediatric hepatologists explained that she had a very rare disease called immune-dysregulation hepatitis. It is similar to autoimmune hepatitis, but involves a different branch of the immune system (T-cells in this case). She responded very well to their treatment of IVIG, steroids, and other immunosuppressives. Her liver numbers eventually returned to normal and all the yellow left her skin and eyes. Once home, Zaiya started third grade and life went back to normal until weekly bloodwork began to show low platelet counts. The hepatologists removed her from some of her medications that could have been the cause and we all watched and waited. Over the next couple weeks, her platelets dropped very low, followed by her white blood cells. Back to Stanford to find out what the hematologists thought. Unfortunately, they strongly suspected Hepatitis-associated Aplastic Anemia which was confirmed after a bone marrow biopsy and many other tests. We discussed in great detail the options of intense immunosuppressive therapy (ATG and cyclosporine) vs. bone marrow transplant vs. wait-and-see. Eventually Zaiya's blood counts dropped to the point that she was dangerously low on platelets, WBCs, and RBCs. They began prepping her for a bone marrow transplant. Zaiya is incredibly fortunate to have found over 600 full 10/10 matches in the database. That gave the doctors the chance to narrow that group down to a few people that are the very best matches in every possible way. They found their 11 favorite and the database contacted the first few. Though plans change and schedules may be adjusted, Zaiya is scheduled to be admitted to the hospital on 1/13/19 for ten days of chemo and radiation before her bone marrow transplant on 1/23/19. She will be in the hospital four to six weeks. After that she will be moved to the Ronald McDonald House across the street from the hospital to heal and recover until she reaches Day 100 on 5/3/19.
Today is the two year anniversary of Zaiya’s transplant. She is happy and healthy. She does not take any medications or have any restrictions or symptoms. Life is good!
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With her cat Simon