We got to see our friend, Thomas, and his family. We prayed and chatted for just a little bit. They were ready to head home. When I told her Thomas was coming she said "Yea, I like him." She was shy when they arrived, but after they left she said told me it was fun to see Thomas.
She had a short MRI that was scheduled for 3:45pm and a CT scan for 6pm, so Anthony headed out about 12 or so to get the kids and my nephew to come for a visit. It was good to see the kids...they had lots of questions and thought Esther's bed was pretty cool. Anthony stayed with Esther and I took the kids back down through the hospital with my mom. We checked out the amazing murals on the floor of the main level from the 4th floor, took a trip to the second floor to check out the lego version of Children's Hospital, and then made our way down to the first floor in the glass elevators. This facility is so beautiful and I'm really thankful to be at a hospital just for kids.
When I returned to the floor I saw our oncologist standing outside the door talking with another doctor. It was one of those tunnel vision things from the Wonder Years. I met them at the door and they came in, along with another doctor, to talk with us a little more about Esther's tumor and her bone marrow biopsy.
They have confirmed that it is a neuroblastoma and did find it in her marrow. The bump on her head is not her primary tumor. Neuroblastoma doesn't start in the bones, it starts elsewhere, usually in the abdomen, and often metastasizes in the bones. She has stage IV neuroblastoma. We will have a treatment meeting tomorrow afternoon sometime, but they said that treatment will need to include chemo, surgery, radiation, and bone marrow transplant.
After the doctors left and Esther was peacefully sleeping, we began to read more about what stage IV means and wondering what will the outcome of this whole journey be. Even now as I write, it seems utterly unreal, phenominally painful. As I watched this little girl sleep a peaceful sleep, I wondered how long has this cancer been in her body. She never had any symptoms...most neurblastoma's don't have a symptom until it's already spread. What an ugly disease.
This is so hard and we aren't even to the hard stuff yet. I'm scared. We met with a social worker who was comforting.
Esther's MRI was delayed, but that was a kindness because she was able to rest and they ended up being able to do the MRI and CT back to back. She just had to down an 8oz contrast in 30 min. We made a game out of it and she did well. The MRI was terrifying for her, but since they didn't need images too precise, they rolled her up in a blanket so she couldn't move and just gutted through it. We went straight to the CT scan and had some IV problems that caused her some pain. She wasn't as scared but her cries were enough to about kill you.
This afternoon felt like one blow after another. And one thing about hospitals is why do they have such crappy kleenex? It's like using a tiny piece of sandpaper to wipe away your tears.
We returned to her room, Anthony left to get some food and I was feeling hopeless. I pulled out a stack of cards from Frannie & Lydia's Sunday school classmates and in it was a book with pictures from a lot of the classes wishing Esther health. It has a short phrase under the picture of one of the classes and it says, "Dear Esther" "all of your friends" "are praying for you" "to a God who hears" "You are our sweet friend" "and we can't wait to see you soon" "We love you, from your friends at church."
A glimmer of hope...we have a God who does hear. He hears. And He promises to wipe away every tear...and it will be tender, gentle, with kisses and a loving embrace, not abrasive like the kleenex in this room.
We hung the cards in her room and as I read them to her one by one they said "Esther" and I remembered, her name means victorious. Another kindness in an afternoon filled with sorrow.
The song below is so good. A simply hymn put to a different tone...an honest cry. You can read the author's testimony as to her arrangement of this song. I love watching this video, the honest struggle. The pain in her playing, this dissonance in the chords. This world is harsh but there IS hope. It may be muted, but God is good. It doesn't match up all the time. About 3 minutes in she cries out,
"And I can't understand. And I can't pretend this will be alright in the end. So I'll try my best and lift up my chest to sing about this joy."
In the album version she ends with the lyrics to "It is well with my soul"
When peace like a river
Attendeth my way
When sorrows like sea billows roll.
Whatever my lost
Thou has taught me to say
It is well
It is well
With my soul