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JAM THE GYM FOR LULU WAS A HUGE SUCCESS!! THANKS TO EVERYONE WHO CAME OUT -Jesse
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Natalie Scheffert Johnson

I know everyone is wanting an update because my phone is blowing up...between people texting and me on the phone with children’s...we spent 6 hours getting scan...s and X-rays and xrayed again and then in lab...we have a lot going on...we have some answers coming in and others that will take a day or so...for blood work on Lulu Ysarua Martinez we have WBC count still high and a 0 for ANC....she has no vitamin D in her and no calcium..her iron is off the chart high...they are stating NED (no evidence of disease) has pneumonia with fluid in lungs the right worse then the left and whatever else the doctor saw reading scans we are being referred to a pulmonary doctor... a sinus infection ...we will be going to childrens or centra care weekly for the next 3 months to work on iron levels where they remove some iron from her blood and we also have to limit red meat and stop vitamins and make sure that her food is not prepared in any cast iron pans....we are being referred to the heart clinic for stress test to make sure she has no damage on heart...her liver function is also a concern so a scan/test being set up for that...with all of this being said if all these tests would come back normal and she is still sick and run down and the WBC count and ANC count and liver number does not fall in the normal range at the end of month 3 we would have to consider a bone marrow biopsy...they said after counting all of her blood transfusions they know that is the reason for the higher iron level..they usually see it come down by now when a person has been off treatment for 2 years but in our case it hasn’t...we will have more answers on the March 15 appointment because of testing that will have been done and more blood work results...so some answers and some meds and some more tests....hopefully we can get some more answers and get her feeling stronger...

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Natalie Scheffert Johnson is feeling nervous at Children's Minnesota.

Hoping for answers.....

HospitalMinneapolis, MN
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