Yesterday was by far one of the longest days yet. We had to get up extra early (5:30) because Jimmy had his PET scan at 8 and he had to check in at 7:30. So we got to the clinic an hour before it opened.
The nice part was that she was first, so we got our choice of where to sit in the infusion room.
So they took her blood, she picked a toy out of the toy closet and we sat in the infusion room.
It had been about an hour and a half since they sent her blood to the lab and Kayla asked me (told me) to go get her some funyuns from the cafeteria.
On my way back I ran into one of her nurses and she said "Oh her levels just came in!"
She told me that Kayla's ANC was 1100!
It went from 422 to 1100!
So she was approved to get her chemo. She got AraC and Cyclophosphamide (CPM).
With the CPM she had to have 4 hours of fluids after. So we knew that we were going to be there for a while.
Because by the time her levels came back and her chemo was started we had already been there for almost 4 hours.
We were moved to an examination room to see her Dr. and he said that he wanted to do her spinal tap that day. I told him that she had eaten. He told me not to feed her anymore and that he would do her spinal tap at 5.
Surprisingly Kayla was not that mad about not eating, I was expecting her to be really mad.
She got about 2 hours of her fluids and they told us to go across the street to the hospital so that she could finish getting her fluids and go get her spinal tap.
We went over there, got checked in, got her hooked up and waited for her chemo to be drawn up so that she could get her spinal tap.
She got Ativan to relax her and she got methotrexate in her spine.
As always she was loopy from the ativan. She was asking where she was and if she had already had her spinal tap.
The worst part (for me at least) is after when she is loopy, because she has to lay on her back for 30 minutes. I asked why she had to lay down and it is so the medicine can distribute through her whole spine.
After our 30 minutes we left and headed home.
ugh it was such a long day. It is a lot of "hurry up and wait" kind of stuff.
Oh and she also has to take Thioguanine which is chemo in a pill form.
And to top the chemo sundae with a cherry I get to give her shots at home!
AraC shots to be specific. It's not the shot part that she doesn't like, it is the fact that the chemo stings when it comes out of the needle.
It upsets me.
So that was our day.
What did you do?
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Dear Sandra, A long day for everyone. My love and prayers are with you always, remember the serenity prayer it does help. I wish I could be with kayla and you to hold you and love you and tell you that it will be okay. Each day is another day closer to recovery.
Love Grandma Anne xoxo
Our Thursdays were quite similar! We did not have CPM this week, but we had a spinal tap, and ara-c, but Isa gets hers pushed thru her port along with Zofran.
I've been waking her up to give her the 6TG. It is supposed to be given on an empty stomach, and with out any milk products, so I wake her up.
Sounds like you handled it well. I have a pretty good idea when all the spinal taps are coming, so we try to schedule them as early as possible.
Good luck on your journey.
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