Saturday, January 5, 2013

Taking a deep breath

We finished our first week of radiation therapy today. 31 total treatments, 4 this past week, 27 more to go. Our calculations are that we finish on Feb 12. Seems like an eternity away.

We wake up at 5:45, I go off to work on Mon/Weds/Thurs, Jeannie/Sophie head to Procure. They are usually there until around 9-9:30, then head back home for a few hours, before heading back out for rehab in the afternoons. Unless it's Tues, when we head downtown right after Procure for our clinic visits, where she will start to receive chemotherapy next week.

It's been a taxing week. We had a bit of a scare that first day, but Thurs/Fri/Sat were better. I can't believe that Sophie can get thru the day when waking up at 5:45, and long days of treatment without taking a nap. She just needs the iPad, and she's good. She's not eating a ton, but we are really trying our hardest to get her to eat. We've been frequenting Jamba Juice to try to get some calories in her. Despite the lack of food, she is an incredibly strong girl. I am amazed every day.

We have a day off tomorrow, before 5 days of radiation next week. Selah and I will also be off to Washington, DC on Thursday for my sister's wedding. It'll be bittersweet leaving Jeannie/Sophie here though. If anyone can give me, my parents, and Selah a ride on Thurs around 11:30am to ORD, and/or pick us up on Sunday at 6:30pm, it would be much appreciated.

Otherwise, we're plugging ahead. I wake up each day and cannot believe that my 4.5yo daughter has brain cancer. It's really, really unbelievable.

People have been asking how to help. I'll point you to our meal train which has been great. You will have to sign up for an account, for privacy concerns. People have been bringing us food or having it delivered almost every day, and it's been a great help. It's nice to not have to worry about cooking or getting food. And with my mom here, she is taking care of cleaning up, watching Selah during the day. It's also really great to connect with people when they come drop off food. Sophie gets energized when kids come by. It's almost equivalent to therapy in my mind, b/c she tries to walk around more and play with the kids.

Please also pray about Sophie's loss of hair. We think it will start next week. Jeannie has been explaining to her, but we are not sure how she will react. Her hair is sort of her security. Ever since she was a baby, she would run her fingers thru mom's hair, and hers. Not sure how she'll be when it's not there. This will be sad for us. I will shave my head to try to make it light and goofy for her, but it will be hard.

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