The last two days, were very hard for Calli.
Monday, Mike and I took her over to University of Pennsylvania, & met with her radiation oncologist. He told her all sorts of scary things she, nor we needed tohear right before she was going to go into a room without us(no parents allowed_ and proceed to lay her flat into a position she is not able to be in, due to her surgery...then they would scan her, tattoo her and make a plastic mask to go over top of her entire face and head...and then bolt it down and scan her again for about 30 minutes. This is all necessary to line up her brain with her spine and make sure they are only radiating the areas needed.
Well, I asked the doctor is he could give me special permission to go in with her...I mean why is a social worker allowed in to comfort her,And I am not? So .....he said yes! I went it, but she did not fare so well, was in terrible pain from the flat position, and could not go thru with it.
I will say, that I am a strong person, but it was so hard for me to see her writhing in pain. We tried for over an hour to get her in a position where they could still line her body up appropriately...no go. we came back to the room, exhausted and she slept for hours. That evening I was so thankful for God and Mike, and the encouragement that He gives us, because we went through some more hard stuff that night. After that passed, at 11 at night, Calli tells me she wants her hair cut. What? Now? yes,now. OK.
It was hard for me..... smelling her hair, combing her long beautiful locks, braiding each one...then cutting. It was a first step for her, an acknowledgement....For me, I was so very proud of her determination, her strength & dignity.
So yesterday, we decided to try the radiation simulation again, and at first she was in the same pain, but they figured out how to put a squishy thing under her ...then suck the air out of it- so it molds to her body. well, it really helped and her pain was gone They just have to make sure it is in the same spot each time she gets her treatments.
Last night was hard for us both, as Mike went home :( First time in almost two weeks without him, and I was a bit of a mess....I miss him, he is such a support and has really been making all of the decisions here, and about things at home too. He went home to be with Aidan,- much needed father-son time :)
Our roommate's mom, blessed us today, she is a wonderful Jewish woman. Her daughter has been such a fun person to be around, she tolerates me, likes to keep things tidy,a dn it has been such a family atmosphere in our room. SO her mom came today and came in with a turquoise SPF wide brimmed sun hat for Calli for the summer. Due to radiation, she will not be able to get in the sun, unless she is completely covered. Then, she came back from doing her daughter's laundry and brought Calli back an encouragement quilt, and some warm crocheted winter hats for her, that someone had donated.
She also gave us this poem, I cried...a lot...this poem is my daughter Callahan Mae Derstine
THE OAK TREE
by Johnny Ray Ryder Jr.
A mighty wind blew night and day.
It stole the Oak Tree's leaves away.
Then snapped its boughs and pulled its bark,
Until the Oak was tired and stark.
But still the Oak tree held its ground
While other trees fell all around...
The weary wind gave up and spoke,
"How can you still be standing Oak?"
The Oak tree said, I know that you
can break each branch of mine in two,
carry every leaf away,
shake my limbs and make me sway.
But i have roots stretched in the earth,
growing stronger since my birth.
You'll never touch them, for you see
they are the deepest part of me.
Until today, I wasn't sure
of just how much I could endure.
But now I've found with thanks to you,
I'm stronger than I ever knew.
We have been so encouraged by so many that have encouraged us and built us up- thanks! We are getting so many scriptures and songs, and are so blessed that the Lord is using you to encourage us and lift us up.