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Scarlett Update June 27, 2015

We are starting to receive feedback from the numerous tests that Scarlett has been given this week.  The preliminary results from the BAL shows that she has PCP Pneumonia.  She tested positive for the parvovirus and the herpes virus. Earlier in the week, she tested positive for a MRSA infection on her finger.   Infectious disease is testing for other bacterial and fungal infections which take time. We have to wait and see if the cultures grow for a positive result which takes days.  We are also waiting for a final finding for the other infections and viruses.  Because Scarlett is (oddly) asymptomatic for pneumonia and overall looks really good, the doctors decided to discharge her last night!  Unlike some other serious infections, PCP Pneumonia can be treated just as effectively with an oral antibiotic as an IV antibiotic.  We have to stay close to the hospital and go back immediately if she has a fever or experiences any breathing difficulties.  Although I was excited to go home, the thought of leaving the safety net of the hospital was something I needed a few moments to wrap my head around.  Being discharged was definitely unexpected and was definitely NOT happening until Candy Cart Frank visited our room!  With that said, it did not take us long to change course and we quickly packed our bags and got ready to leave.  As the news started trickling out to the nurses, they stopped by our room with huge grins and thumbs up signs.  I can’t say enough about the staff at MSK. They are not only professional but also truly lovely people.  Their gentle touch, patience, kindness and empathy make such a difference in the lives of our children.
Scarlett has been through so much. Her little body is fighting so many things.  She is so sad and mad about receiving the PICC line. She told me it’s like starting over.  I quickly reminded her it was temporary. Her chest is tender and it’s uncomfortable.  I remember after her port was removed how wonderful it was to hold her tight and not worry about pushing into her port which hurt. Last night, I held her as tight as I could without touching her chest.  Robert and I reflected on the last 20 months and what she has endured.  Scarlett deserves a break.  She is strong and there is no doubt that she will get through this rough patch.  One of my first questions to the doctors is, “Is this treatable?”  When I hear the answer is yes, I know she will be okay.  She is up for the fight. We are up for the fight.  The doctors are withholding chemotherapy until we get all of these viruses and infections under control.  For now, she will rest and give her body time to heal!
Thank you so much for all of your support. I write these updates not only to keep you informed but also because I also receive a lot of much needed feedback from you.  At times, your notes of encouragement and kind words are what inspire me to keep my chin up and keep pushing forward.  In the words of Robert Frost, “The best way out is through.”  Enjoy your weekend!