Yesterday was a very long day :)
We arrived at CHOP at 9:30 for our appointment with our doctor- waited two hours to see her (those neuro Oncologists- are very busy ya know), then went to Penn for her appt with her radiation oncologist.
Her neur oncologist secured a 7 pm appointment for Calli's MRI- hoping to finish it. This time- with NO meds! She can do it- we both encouraged her and believed that she could do it. They had scaled it down to a little over an hour, by eliminated some films, and they promised she could watch a movie!
She has never been allowed to watch a movie, and her doctor said, "WHY NOT?" I guess scans of brain include orbits- but they are not concerned about her orbits, so she could watch a movie!
By now it was 3 pm, and neither of us had eaten, she was exhausted and she went to Oncology's day hospital where they gave her a bed to lay down.....All she wanted was top ramen- all day, was asking if I could find her some. They don't have it here in the hospital, I asked, I went to Penn and asked them..nope, finally went to the gift shop in the hospital and they had it! Who knew?
After a snack, she slept for several hours. Then they woke her to....stick her again- we are losing count, but we believe it has been 12 sticks for IV's in the last three weeks! Nurse Amy took her time, and got a good vein. They could take her blood from that stick, so as to save her another one!
After resting we went to the MRi suite and got changed, picked a movie and waited our turn. She was happy, because the movie is thru goggles which totally block out all vision of the long skinny tube she is in...she also has headphone which block most of the jackhammer noise. All settled, relaxed and watching a movie...they start the test and....THE MACHINE BROKE! OYE VEY!
We just laughed, I mean really? What else could we do? So, off the table, back to the gowned waiting area, where all the other kids are waiting. They tell us that she has to wait another half an hour until one of the other machines opens up. half hour- you got it! She popped in a movie and in no time we were putting her on the next MRI...one glitch they mention at the last second...you cannot watch a movie on this machine! UH OH. Calli of course, is not ok with that, and starts to cry and is now scared. We talked her into at least trying it, with me standing holding her foot the entire time, and giving her a mirror so she could see my face and I could see hers. She agreed.
Back on the table, into the tube and she freaked out. Could not do it :(
So, they say that the next table would not be ready for another hour and a half, but she could watch a movie on that machine. We chose to wait, we had already been there all day and by now it was close to 9:30. We watched a movie and just as I started to relax, I remembered that I had parked at PENN! UH OH, I needed to move my car to CHOP, or I would not be able to get it out! So, I went across the hospital, stopped at McD's got her a cheeseburger, me a coffee and walked across the street to get my car. As soon as I pulled into the CHOP parking lot, Calli texted me that she wanted nuggets :)
After parking, I went all the way back across the hospital for nuggets and a shake for Calli. She ate just a bit, and then it was time to go! Laughing and relaxed, all the nursed and the Resident were all saying sorry and how patient we were...I kept saying that God was definitely trying to teach me patience :) We got in the machine, she did swimmingly! YEAH CALLI!!!!!
We were all done, got changed keys in hand and walking out the door when....STOP, they forgot to do one of the scans! Really? We just busted out laughing so hard, what else could we do? Right? So she got changed again, we all got screened again, back in the machine, movie back on and after about 15 minutes, she started saying in an unsure voice, "Mommy?, Mommy?" I was sitting in a rocker about two feet away from her, so I got up and held her foot,and rubbed it back and forth to let her know that I was there. The nurse said over the intercom that she had 47 seconds left,and she did it! Apparently the credits were rolling on her movie and she did not know how much longer it would be :)
So we got home, around 1 am- I think, I do not even remember.
It was a long, busy, but good day :)
Calli likes this song by Jamie Grace called hOLDING on
So, I made a little video of her