Tuesday, November 6, 2007

11/6 1220 pm

Sorry no post yesterday as it was very upside down, drag out day, kinda like the colts game. But Mikayla, Sasha and I didn't blow it like the offense did (not the defense). Anyway about 6 am yesterday we found out the Port Placement was pushed back to 2 pm. But we were able to get the MRI schedule into the morning. She was fasting so when you take a 5 year old on steroids and tell her not to eat, it is not pretty. She got through the mri great, actually fell asleep. Then we occupied her time as much as we could the rest the day. The surgery continued to get pushed back until finally we took her down to surgery at almost 7pm. The port placement went well as expected.
The time in between the port and the mri was very hard. Mikayla wanted to go home and wanted to eat. She desperately wants to be back at school. Sasha and I did the best we could taking her for walks, crafts , games but it is hard. You can't blame her for wanting to cry. I think both Sasha and I cried inside with her. After the surgery she slept. Her primary food request was a soft taco from taco bell. She ate one at 1 am this morning and the 2nd at 4 am. Yummy!
No more headaches and vomiting since in the er. She is still clumsy and leaning head to the right. We talked with the oncologist after the MRI yesterday and he and the radiologist felt there was no change in size from the previous mri, which makes us think it was inflammation on the ct scan. for info - MRI can show much more detail than a Ct scan. I was unable to talk with neurosurgeon yet as we were off the floor when he came up. I don't want to get too relieved until I get his take on the changes. This has already been too much of a roller coaster of emotions for me to get too excited yet. Today, well, she still wants to go home and if things go as planned we should be able to break her out of this place sometime late this afternoon. She is starting her chemotherapy as I type this. She still needs to get her stitches out and I still need to meet with the neurosurgeon before we go. Sasha and I got a lot of information from the nurse educator, children's life specialist ( they coordinate activities and keep the playroom up to date for the kids) and the social worker. All had good information to help all of my family get through this journey. This continues to be very hard on Grace who got to visit on Sunday. Apparently another child at school told her Mikayla could die, so when we were rushing around on saturday to bring mikayla to the er Grace broke down crying. The only one who hasn't been too phased by this (except for missing mama) is Jacob. He is spaz and still high on candy (his new word) from halloween.
Thank you to Wayne Center (Mikayla's school) for rallying a pop tab collection in Mikayla's honor, there was even an article in the newspaper. All though we didn't sleep in the Ronald McDonal house this time I still went there to relax and eat a few times. Sasha stayed at My cousin Mike's house as I assumed my position next to Mikayla in the room. Thank you to all of those who have helpded with Grace, Jacob, patches and my home.
Mikayla also made a friend, her roomate Laney (4 year old, already on chemo) and her found a companion to lean on during each of their difficult times.
Please continue with your prayers, we are trying to keep our faith strong and know God has a plan for Mikayla that is out of our control, where this journey will take us we don't know but I can't imagine our father has anything but the best in store for her down the road. Certainly it is easy to doubt this the way I felt yesterday and Nov 19 when the radiologist called me about her CT scan.
Chris

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