9/27/13 Bone marrow biopsy led to a diagnosis of Aplastic Anemia. PICC line added to her arm. First ATG (equine) dose began in the evening.

We were so relieved that she was negative leukemia cells, but we failed to realize how serious and life-threatening her condition continued to be.  During these early days while she was receiving her ATG treatments, we researched Aplastic Anemia extensively and began to understand a little bit more what we were facing.  Too overwhelmed t move forward quickly, I remember shutting down websites and then an hour later being ready to read some more.  I went through moments like this for the next few weeks.  Everything was so overwhelming to me.  I could not do anything besides survive and continue to care for her as she needed.

9/28/13 Second dose of ATG

9/29/13 Third dose of ATG

9/30/13 Fourth dose of ATG and began cyclosporine

9/24-9/27/13 Multiple blood and platelet transfusions. Her bruising improved quickly, mouth sores disappeared and her energy began to return. She continued to have serious difficulty walking until the 27/28. One day, her siblings visited her, and with a desire to show them her strength she walked to and from the bathroom alone all day. By that night, her legs were so sore from being overworked that she was in tears. But the next day, she awoke revived and never complained about leg pain again.

9/25/13 Bone marrow biopsy confirmed no leukemia cells in the bone marrow.

9/24/13 Initial blood tests detected no leukemia cells in the blood. Bone marrow biopsy completed.

As I look back at this day, I shudder.  It was my first encounter with the oncologist/hematologist.  She was very matter-of-fact and gave me hardly a look.  She was late to perform the test and seemed like she was in a rush and I was not worth her time.  In hindsight, I know that most any doctor would have been unwelcome to me.  I was living a nightmare that I wished would end.  I had so little answers and wanted some closure.  Yet, I knew deep in my heart that something was terribly wrong and tht life was never to be the same again.

The relief I felt by the negative leukemia cells was countered by the uncertainty of what exactly we were facing.  I lost pounds during her first hospitalization.  The stress was huge.

I have been asked a few times since over the past few months this very question: “How did she present?”  Each time I was asked, I have to relive those days when she was ill and not improving.  When the blood tests were critical and required immediate hospitalization, I was happy to have professional intervention.  It was my worst nightmare though to walk into ER and hear that an oncologist had already been consulted for her.

Week of 9/9/13 Mommy and the children had a virus. Everyone recovered seemingly well, except Naomi’s illness was lingering. Mommy had begun to notice some bruising on Naomi and associated it with her gymnastics promotion and her new skills. She had been attending gymnastics two days per week for a total of 3.5 hours but continued to flip and tumble all over at home, too. We decided to skip gymnastics all week and we cut way back on homeschool for everyone to rest and recover.

When Naomi’s illness lingered beyond the rest of us, we paid a visit to a naturopathic physician who ordered a CBC. We went that same day to Qwest Diagnositics and had the tests completed.

9/23/13 lab results came back and we were instructed to report to ER immediately. Naomi was admitted to St. Rose Siena with pancytopenia. Transfusions were ordered immediately and administered that evening. Preliminary diagnosis of leukemia.