Friday, August 23
We had the most restful night so far since being admitted to the hospital. With the EVD out, there was no longer a need for IV antibiotics or steroids(Yay!). There was a mix up however, so she spent the night hooked up to IV fluids. This wasn't a bad thing.... just a pain every time she needed to get up.
The team did their rounds and confirmed we were definitely headed home today! I had not started packing as to not jinx us, so I immediately started packing as soon as they left the room!
Dr. Friedman and the Nurse Practitioner from Neuro-oncology came by to meet with us shortly after 11. Avery's official diagnosis was Medullablastoma( https://www.stjude.org/disease/medulloblastoma.html ), a form of pediatric brain cancer. Although based on the initial report from the surgery, we knew the results were not good, it still felt like a swift kick to the stomach to learn that our daughter did in fact have cancer. We learned that our next steps were a Spinal MRI and Spinal tap to determine if the disease had spread. We are also waiting on the final pathology to learn the sub type of the disease. We will meet again the week of Labor Day to discuss all of the additional findings and determine next steps in treatment. They typically begin treatment within 31 days of surgery.
After that, we were free to go! We packed up our 2 wagons(we accumulated a lot of stuff), and I carried our sweet girl out of the hospital for the first time in almost 2 weeks. Our first stop before heading home was Steele City Pops. I had promised Avery a Coffee Popsicle all week,, and we were finally getting to have it! She had been battling nausea the past few mornings, so she quickly threw up said Popsicle, but it didn't break her spirit!
When we arrived home, our first order of business was a bath! Between getting sick in the car and going 11 days without washing her hair, she definitely needed it! I was prepared for a difficult task, but a bath bomb and lots of conditioner made it a smooth experience. She even let me look at her incisions for the first time. She soaked in the tub until the water was cold and enjoyed every single moment!
The big girls arrived home a few hours later, and they spent the resting of the night playing together and being silly! Avery fell asleep in her own bed before I even had a chance to lay with her. She finally got a much needed full night of sleep!
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