Inpatient for awhile

Nora’s port was removed. Her catheter put in. She just wasn’t really getting better. She acquired another infection and her catheter needs to be removed. She now has three IVs in her arms so she can receive the antibiotics, antivirals and blood product. She has been getting around 20 infusions a day. 

Her marrow has failed.

The doctors are actively looking for a match and they have a few prospects. Right now they are trying to get Nora stable so she can begin the transplant process again. This time she will be getting full chemotherapy, and full total body irradiation prior to transplant. Last time she had a reduced dosage to try and minimize the toxicity of the poisons. Unfortunately, it wasn’t enough to kill her T-Cells. 

She is not her usual upbeat self. She is angry. She is lonely. She is tired of being a lab rat. 

Our goal the next few months will be to help her manage the pain and try to make her smile. She has not really been smiling at all these last two weeks. She is feeling depressed and scared. She just wants all of this to be over.

Please keep praying… I don’t know what else we all can do.  

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4 thoughts on “Inpatient for awhile

  1. I know exactly what you are going thru. My son had his first transplant on 8/1/2012 last year at cohen’s children’s med ctr. we stayed at the ronald mcdonald house in new hyde park as well up until the weekend after they started easing up on the gas restrictions after sandy hurricane. I came to Atlanta as i had no support base anymore in nyc. john john had a relapse this year in March and so endured yet another transplant on april 30th… this time they included radiation therapy on top of everything else to prepare him for transplant. I have diligently been trying to raise money for his expenses as i am a single mother of 3 others as well. I will keep your daughter in my prayers!! 🙂

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