Shout it from the rooftops

We have officially had our first few days of good news without the typical onslaught of bad news and complications. Julie had to do her 3 a day clinic visits this weekend in order to obtain her release so that was difficult and time consuming, but totally worth it. I visited her Sunday around 11 when she had just finished her 6am appointment, she told me that her evening one from Saturday ended at midnight, I then took her to the next one at 2pm which lasted until 4, then she went back at 9pm. Lots of in and outs but remarkably she seemed happy, healthy, and pretty normal. We walked to and from clinic, she went to the grocery store with me, and made some dinner. It was a refreshingly new way to spend the day even with the appointments.

Monday she was able to start her home care so the clinic was only a morning visit and she could self administer from there on for the rest of the day. She has been doing that today as well and today marks the fourth day of not receiving blood. Her platelets have actually risen. Of course her red counts have dropped daily but they are still above the threshold of needing a transfusion so maybe tomorrow they will stay stable or even improve. All I know is not getting blood since Friday, only having to go to the clinic once a day, and hitting day 100 this Sunday are signs of dramatic forward progress. I am hoping this is truly a sign that Julie is getting close to being able to come home and finish any necessary treatments with Dr. Frakes down here.

Finally some good news.

Donna Matzenbacher

Thank you God!!!!! Best news we’ve had in a long time! Keep this coming! Love Julie so much and continue to have her at the top my my prayer list. Julie is a very special person in my Merced prayer group. Love you all!

eve beutler

Sweet Julie. I just read your journey.I can promise you, Dr. Levine is a dear friend of mine, and Dr. “Cowboy” Eisman saved my life many times. I also had the Kalunian and Kaplan experience. Bottom line, I was told I had just a short period of time left to live about 8 years ago…remember how big and swollen I’d be from the steroids? You sure know that gig now. A new drug came out about 7 years ago and here I am…still with some”undiagnosed” issues but who cares…it’s about buying time. I believe that you are going to be like our Sharlie and a “black box” like me and outlive us all…ok? We are living proof of miracles and so are you. I so badly want to see you…waiting for the green light, praying every day.
love you. Mom has my info.

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