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How it All Started
Liz went to the Doctors office back in June for her standard 7th grade physical. Thanks to the grace of God, they happened to do a CBC (complete blood count), blood test which is not a part of the standard test. We got a call from the nurse that same day saying that they wanted Elizabeth to come back the next day to be tested again because they wanted to be sure that the first test was accurate. The next words we heard were "You might want to sit down" from the Doctor, and immediately both Erika and I panicked. The Dr. said that Lizzy's white blood counts were very low and that they wanted to admit us to the hospital that day. We went home and did numerous searches on the internet on what some possible causes were so we wouldn't be blindsided by anything. After 10 days in the Hospital, with nasty food (that was from Liz), and after numerous "Could Be" diagnoses, they finally came back and said that she has been diagnosed with Myelodysplastic Syndrome or MDS. This Means that her white blood cells are not maturing and living long enough in her body. They say the problem is in her 8th Chromosome. It is what is called Trisomy where the normal Chromosome has 2 copies, Liz has 3 copies. This is what is Causing the problem. This condition is extremely rare in Children. Fewer than 100 cases are diagnosed in children Per year. So, since this is such a rare thing, Kaiser is Going to be sending us to the National Institute of Health in Washington D.C. on August 7th. Liz is Very stable right now. The day before we left the hospital, her white blood count was at 0.2. That night they gave her Neupogen, which is a hormone given in shot form, and that raised her white count to 1.3. Since that time, we give her a shot every other night of the Neupogen and the last report came back at 3.2. The minimum functioning range that they like to see is 4.5. She is up and about, however our diet has changed dramatically as you can see on the nutrition page.
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