1/13 Madeline Update

This week flew by with school starting for all of us. My mom flew in on Tuesday to be at the house with Madeline during the day and to be here in the afternoon when her amazing teachers come and keep her up with her classes. Tuesday she had a doctor's appointment which turned into a long day since she needed a blood transfusion and we didn't get home until 8pm. I wasn't quite prepared to be at the hospital all afternoon but it worked out okay. On Friday, she had another appointment and given the events of Tuesday, I packed ALL the things and of course, we didn't need to stay (which was a good thing) but I was prepared!!

This week Brad and I are having a virtual consult with an osteosarcoma specialist from the Cleveland Clinic just to hear what his thoughts are about Madeline's case. There seems to be a lot of discussion about how to proceed after surgery so we would like another opinion. It is so frustrating that these treatments are over 40 years old - isn't that ridiculous?? What is also ridiculous is that only 4% of all cancer funding goes toward childhood cancer - it makes me so frustrated. I am a researcher at heart and it is so disappointing that there is really nothing to research.

On Thursday she will have an MRI and chest CT and another appointment to check her counts. Most likely we will be able to meet with the surgeon on the following Tuesday to go over and schedule the surgery. Our prayer is to have options and that limb salvage surgery is not only a possibility but a clear choice.

For my local friends - we are not doing a MealTrain right now.  I may do one when Madeline has surgery in a few weeks to be sure Ben has food to eat at the house. I promise to let you know if I decide to do this. We do pick up food when we are at the hospital because Madeline refuses to eat the food there and to be fair the food service schedule usually doesn't align with our day. She loves: Zoe's Kitchen, Chick Fil A, Cane's, La Madeleine, Whole Foods, Chipotle and breakfast from Starbucks.

Thank you for the prayers, good thoughts, and support. We are so very grateful.