In October, 2016, during a routine blood draw, it was discovered that Naomi’s platelets were below normal in the 80s and her red blood cells were slightly low at 3.6. Her lymphocytes were elevated and neutrophils low. Over the following 8 weeks, she continued frequent follow-ups. In December she became transfusion dependent receiving platelets every week and red blood cells every 14 days. Between early December and late January she went to City of Hope on 2 different occasions for a bone marrow biopsy & aspiration and also to have run every test imaginable. The results were that no detectable viruses had been found and engraftment above 90% in all cell lines but her vulgarity was decreasing. There was no cause given.
Naomi was put on Promacta (eltrombopag) in mid-January and continued to receive frequent transfusions. On Feb 10, she woke with severe bruising and petechia. She had never had such severe bruising like that before. She was admitted at St. Rose Siena with 0 platelets and less than 200 ANC. She received transfusions and was released. Her parents reached out to Dr. Margolis at Children’s Hospital of Wisconsin and on Sunday evening, February 12, they decided to transfer her care from City of Hope to Dr. Margolis in Milwaukee, Wisconsin. With 9 people in the family, including 7 children, the logistics still needed to be worked out and became a matter of prayer.
The next morning, on February 13, Naomi woke with a fever of 103.6. Again she was admitted to St. Rose Siena but with ANC<100. She received IV fluids, antibiotics and cultures with every spike of fever. All cultures came back negative, but she continued to have fevers for 3 days. She was started on February 15 on G-CSF to help increase white blood cell count. Plans to transfer her to Children’s Hospital of Wisconsin continued to evolve over the week. She is currently awaiting her ANC to climb to make a scheduled flight to Milwaukee on Monday, February 20. If her ANC does not climb then she will likely be transported with a medical care team.
The most difficult aspect of this has been the separation for the family. Severely neutropenic she has not spent time with her 4 sisters and 2 brothers the past few weeks as she has been in and out of the hospital. She will transfer to Milwaukee with her brother, Micayah who was her donor in 2014 and her mother, Kristy. The rest of the family will stay home in Henderson, NV. That is a long distance between them and they don’t know for how long that will last.
Any donations to Naomi will be used to help pay medical bills, allow her Daddy and siblings to travel to visit or stay with her while she recovers, and go towards the increased costs of having Naomi and Kristy across the country from the rest of the family. Micayah will travel with them to Wisconsin and is awaiting the results of a blood test that will confirm he is still a good match for Naomi. He will then return home to Henderson a few days after he donates bone marrow to Naomi. Any donations and prayers are much appreciated. Blessings abound.
You can make donations at her one to one fund: https://onetoonefunds.crowdsterapp.com/naomiwilson