Monday, December 17, 2018

Larisa’s report on Lily’s Leukemia

Parents of ill children go through so much!  Hold this family in your prayers!

“Lily had clinic today. It was her typical monthly check up. Her numbers still look good. I’m waiting for the day they are all in the normal range but that will probably be a while.

We have been working to get her infusions started for her IGG treatment. The process has definitely tried my patience—it’s been 2 weeks now. Not only are Lily’s numbers extremely low which is dangerous but we have a vacation planned at the end of this month and I’m nervous her traveling with such a low immune system.

We have been blessed overall with good insurance and Vandy who has fought for Lily. However these home infusions go through a different provider that works with Blue Cross for approval and then CVS to set up the infusions. I work in the insurance world so I understand the hoops they put up, but the process has been exhausting. I’m pretty sure Blue Cross and CVS wish they had never heard of us as I have set up daily calls with them to discuss their progress with approval.

Finally we got approval today. They say we can start soon. My definition of soon was today but I understand their definition maybe more like later this week. Ha!

Anyway prayers for these infusions to get started, Lily to tolerate them, and for her to get enough prior to our trip for her to be at a safe level would be appreciated.

Later this week, Lily returns to the endocrinologist for a follow up on the issues with her thyroid.”

No comments: