Help!!!

Waiting is so hard.  We feel like the walls around us are teetering and could collapse at any minute.  We struggle with trying to lose ourselves keeping busy at work versus losing ourselves in sadness of a third tumor.  Every family with a sick child must go through this and it is completely unfair.  We feel so small but then we look at Eila, who is so small, and know that we need to assure her that we are doing all we can and that everything will work out.  But will it?  We are getting information daily from her oncologist, family, friends, the internet and it is so much to take in and think about; yet at the same time it feels woefully inadequate.  Why is there nothing out there that actually seems to describe Eila?  How do we know the right plan to move forward with?  How do we even know how to begin to evaluate that?  How will we know that we have truly done all we can for her?

From Mar/Apr2015

We are currently reaching out for advice/opinions from other oncologists (Memorial Sloan Kettering, Dana-Farber, St. Judes, Children's National) and hoping that they come back with a solid plan for Eila.  We have a promising lead on a very experienced surgeon that we intend to follow up with (and he's even considered "in-network" for our insurance, although he's 6 states away - thank god for the wonderful insurance available through OSU).  But we feel like we are still completely lost with nephrology.  We have had no real communication with her current doctor since we found the new tumor, and our last appointment with her left us feeling very frustrated (and that was before we knew our problems were changing).  It feels like we are the only ones who think talking about her kidney is also important right now.  Thankfully my Uncle Ron (a former kidney transplant surgeon) has been helpful in answering questions for us.  But we intend to make more phone calls about this and hopefully will find more information to help us feel better about her options.  We go back up to Portland on Monday to talk and plan to move forward ...



(Personal side-note: For those who know me well, you know I would never be described as an emotional person - I blame my stoic Nordic blood.  But I am scared, frustrated, angry, and so very sad right now.  So this pseudo-anonymous blog provides an outlet for me to express my feelings, and I really need that right now.  It also provides a way for me to document this all for our girls, since they're too young to really understand all that's happening, and a way to keep you informed.  Thanks for checking in and thanks for thinking about and praying for Eila.  We love her.)