Today went well. Mchalie is feeling pretty well, too. A few yucky symptoms, but thats chemo. It was a long day, but overall, all good things. Mchalies counts were good (oncology). I forgot to let nephrology know our appointments had been switched to make sure Mchalie could do Mondays appointments, but they quickly adjusted and came to see us. So grateful! (Well get kidney numbers later.) Then, they added in an echocardiogram appointment today, because nephrology would like to look at several things and oncology would be doing one soon, too. It was interesting because Mchalie has a new oncologist. Ours left. We had heard from another parent that they thought our oncologist had left and Mchalie was sad, but our new oncologist seems fantastic, too. There seems to be a plan in place for the end of Mchalies treatment. Next month, Mchalie is supposed to have Vincristine and a final spinal tap with Methotrexate; however, since she is sedated, it would be a great time to remove her port. BUT - that is a lot at once for her - especially with how we cant predict lately how much she can tolerate. So - next month - Mchalie will get Vincristine. A month later, she will be sedated and have surgery to remove her port AND give her the final spinal tap with Methotrexate. Her at home oral chemo ends February 7th. We had very special visitors today. We met our friend, Rae (finally in person! :) ). We also had my former student, Hannah, come to be with us and play with Mchalie. These were 2 important highlights to our day and made things so much easier. During Mchalies echocardiogram, she had a major meltdown when he was near the end of the echo. Later this evening, Mchalie shared that seeing her heart on the monitor made her think about death, and it scared her. It was the same room where she had her very first meltdown (at her first echocardiogram the days after her diagnosis and treatment starting). Hannah came to the rescue and started showing Mchalie pictures on her phone, and she was able to calm her down to finish the echo. Theres a really ironic aspect to today, because we found out some things yesterday that explain why we often see a different Mchalie at the hospital. Overall, it feels good to have a potential plan in place for finishing. Still taking everything a day at a time and believing in the best. Heres my photo and post to my personal Facebook page as we pulled into the hospital this morning: Gratitude: Understanding that people (& children) with health issues are fighting every day for good moments. Words of wisdom from Mchalie, I am worried about my chemo today, but my daddy says I am a champ. Tell your kids you believe in them today. Self talk is important & helps us all through the trials; we will all have them. #gratitude #nochildfightsalone #realheroine #glitteringold #believe (And a photo of Mchalie with Hannah before the echo - hiding from dinosaurs in a cave, of course.) Glitter in gold. Believe.
Posted on: Wed, 07 Jan 2015 02:08:06 +0000
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