Sunday, May 16, 2010

Broken Hallelujah

A friend brought me a CD today with a song by this title. It sums up perfectly how I feel on this Sunday night. I am full of gratefulness for a weekend of sunshine and normal things like yard work and laundry and cleaning house. Dan and I were blessed with last evening alone as Delaney stayed overnight with her best friend, Lauren, and Danica stayed with my parents. We had dinner out and then sat on the porch and talked for hours about anything except what is facing us, and then we slept 10 hours. Today it was back to normal, and so many of you have asked what is going on. I guess I never posted the "Iowa" post on facebook which I am finding is how most people want to read this blog and others who are even less technologically literate (I'm not naming any names ;)) have wanted to "follow" the blog but can't figure out how to sign up. I apologize for not emailing out some of the posts or sharing them via facebook. I am pretty scattered these days and yes, a little broken.

Tuesday afternoon we found out Danica's appointment at the University of Iowa with Dr. Menezes is scheduled for Friday, May 28th at 2:30 pm. We now know that people wait months to even see this doctor, and he turns many cases away, so the fact he not only took her case after reviewing what Dr. Carson forwarded him but also scheduled Danica so quickly is telling.

Dan and I drove to Cleveland on Wednesday to review the 3D CT from Cincinnati with Dr. Cohen and get his opinion on spinal fusion in Danica's case as well as hear what he knows about Dr. Menezes. Dr. Cohen spent over an hour with us reviewing the history of Danica's case, reiterating how truly rare her Chiari and congenital bone issues are and, much like Dr. Carson, telling us he is not the surgeon for fusion. BUT, he said that Dr. Menezes is truly the only neurosurgeon in the US, even the world, who may have operated on a case similar to Danica. He told us to go see him and do what he says. There are no other opinions we should seek. He did discuss what he considered options--like perhaps operating on her Chiari first, opening the dura, putting in a graft and coagulating the "tonsil" to see if it might give her a few months of relief like the first decompression. His thinking being it might buy us some precious time for her to grow more before we try to fuse. His general school of thought still being Danica has two separate issues that may be aggravating one another, but he is not convinced the assimilation of her skull to her neck vertebrae is the primary cause. At the end of our time with him he said he would put a call in to Dr. Menezes and get back with us when he heard from him.

Thursday afternoon Dr. Cohen called after he had spoken to Dr. Menezes about Danica. Dr. Menezes took a different stance than Dr. Cohen from reviewing her file. He believes although Danica clearly has a significant Chiari malformation her bones are the main problem. He did not express if he was going to recommend immediate fusion in their conversation. What we know about Dr. Menezes is that he is painfully direct, in complete control of any phone conversation or meeting and does not leave much room for "discussion" with his patient's families. A sweet mother who's son was just operated on by Dr. Menezes spoke with me on the phone Thursday night. She gave me all kinds of wonderful information about how to navigate our visit with this man, how to best use the hospital system, etc. and most importantly she said, "DO WHATEVER HE TELLS YOU TO DO FOR DANICA. TAKE THE APPOINTMENT HE GIVES YOU AND HAVE THE SURGERY!"

In our minds we pictured going to Iowa weekend after next and then purusing Dr. Menezes' calendar to find a surgery day that suited us both--one that also gave us time to come home, get Laney finished with school and settled with my sister and her family in West Virginia, pack, give proper notice to our jobs and arrange the dozens of other things that must be figured out before we leave our life and head back. What we now know is that this man travels out of the country extensively, he has families who come from other countries and bring cash to pay him to operate on their loved ones. This is not a situation where we have any leverage in finding a "best" date for us. We are going to have to make it work.

I can't even explain to you how insane my head is thinking we might have to stay or come home and then turn around and head right back. We don't know how we will work out our employment. Dan is eligible for FMLA which is unpaid time off but must keep paying his insurance premiums and of course we still have all our bills here to pay. I have been a contractor for 2 years before taking a full time position recently with my current employer. I am not eligible for FMLA and am the most likely to need to be completely off for some time--the weeks, possibly month, in Iowa in the hospital and then the grueling recovery time here at home. I also make the most money, so me quitting my job or just not being paid is almost an impossibility as well. We can't wrap our heads around how this will work.

The most painful thing for me in planning is the fact I have to be apart from my Laney. I have done this before, for weeks, and it hurt me so deeply in a place I cannot even bear to go with my thoughts anymore. It hurt her too. Here we are, needing to say goodbye, missing the library reading program and swimming and days at the park and icecream not to mention our cancelled beach trip and what feel like so many lost days of her life to help her sister have the best chance at hers. It hurts so badly I can't breath sometimes--the seeming unfairness of all this to my Laney.

The next two weeks will be uneventful with news but full of trying to figure out as much as possible how we will survive after the appointment--putting the pieces out on the table as best we can so they can quickly be placed together when the doctor says it's time. Please pray for us. We need to find some kind of peace. We need to focus on what truly matters big picture but also somehow still have the strength to take care of all the details. We need to find a song, however broken, and keep singing.

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all.

E. Dickinson


  1. Oh dear Monica and family....You will get through this one moment at a time, with the focus of your mission of healing Danica, through the strength and grace of our great God...

    A song? Understanding that I am the mother who spoke to you last week, about how Dr. Menezes saved our son, and how wonderful his skill was, I must share an inspirational story with you from this morning. Nick, 9, during church service this morning, weaped tears down his face, with eyes closed while our congregation sang his favorite song..."Mighty to Save" . My older daughter 18, with 5 other girls sang..."By Your Side" by Tenth Ave. North. These should suffice to squash some of your anxiety.

    God will provide all of your needs, just ask him to burden this struggle for you...and He will...

    Sleep peacefully...God loves all of you..

  2. Monica, I have just found your blog so I don't really know what all is going on but plaease know that I will keep you all in my prayers. I can't imagine facing what you are facing. My "children" are grown: 39 and 41 now so I am a Mother and know how HARD and gut wrenching it can be. God bless. I will pray and follow your blog now. XO, Pinky