The Begining

Sophia's Story

In the beginning of August 2005 Sophia developed a fever. We at first thought she was just teething. After 3 days with a rather high fever I took her to her doctor. He thought she may have something viral, like Roseola. He gave her a shot of Rocephin an antibiotic. He said if the fever is still there in 2 days come back. Her fever subsided for one day then came right back. We took her into our urgent care facility and saw a second doctor. He thought she could have strep throat and did a culture. Not strep. He gave her another antibiotic Omniceph. We were preparing to go camping in the Sierra Mountains. I asked the doctor if it would be okay to take her and he said "With her fever, if we do blood tests they will probably hospitalize her. You can go on vacation and give her the antibiotics there." Well we thought if there were something majorly wrong he would not let us go on vacation (now I know to always ask for the blood work).

We went to the Sierra Mountains, knowing if we needed it there was medical attention. We arrived on Saturday and Monday afternoon we were in Mammoth pediatric clinic. Her fever did not subside. After x ray,blood work and many hours of waiting we were told her spleen was enlarged, and all of her blood counts were dramatically low. Dr. Johnson said "I think she has Leukemia."

The next thing we heard was "If you don't pack up and leave first thing in the morning we will Life Flight her to Loma Linda or CHOC." We went directly to CHOC.

After a week of being seen by every specialists we sat down for a family conference with an oncologist,Dr. Torno, who said "We think your daughter has Hemophagocytic Lymphohistiocytosis (HLH) and we know she is dying." They handed us print outs from the internet and the journey began.

Eight weeks of chemo,steroids,immuno-surpressants and many other supportive meds. Genetic testing was negative. Sophia's counts never truly normalized, there was always smoldering disease activity. March of 2006 she underwent Bone Marrow Transplant, with her father as her donor. May of 2006 battled a massive case of septic shock. As of February 2007 her blood counts (white, red and platletts) have been severely low. She also has very low bone marrow density. She is 100% donor cells, there just doesn't seem to be enought bone marrow to adequatly supply her body.

So,August 2007 two years after diagnosis, we start another journey.