Previously I mentioned Miss Ava had already had a long journey. But kids are resilient and funny and creative. My husband, her G-Daddy (he's too cool to be a Grandpa), shared observations and updates on his Facebook page often. She was always planning escapes. We had to keep an eye on her. Here was the first of many, in his own words: A little update on AVA!
So its been a while, no we still do not know when she will be released, Next week sometime is the earliest, however that is just the first hospitalization. They are very clear this will not be the only one. Today, she will do another intrathecal chemo treatment (chemo injected into the lumbar spine) I dont know what time yet, so she will be put to sleep for a short while again. Should definitely not be as long as the last time. She has turned a huge corner on white blood cell count, and as of yesterday they were a little over double normals, a far cry from the peak which was multiples of yesterdays numbers. She asked why she has to live in just this little room, she has been room bound this visit to the hospital however she remains in decent spirits about it. Plans she has devised 1st escape plan she has a roughly 4 foot stuffed unicorn. She was simply going to open the window and fly her unicorn out the window. I asked how she would get her things, she explained she could tie them to her unicorns tail. She told the doctors and they suggested maybe they needed bars despite the window not being operable : )
Escape plan 2. She noticed there are access panels in the ceiling. Yesterday she explained to me. We could hop up on the garbage can, climb over the clock open the panels and escape to the roof (I didnt tell her there were 4 more floors above her)
She is eating more, however she loves ramen noodles, while not the healthiest option.... we oblige anything that has her eating after a few days of not holding food down. She has declared One of the nurses as the best cook because she warms the water to the right temperature in the microwave (we are not allowed to use the stations because she had the cold virus, which is why we are confined and must practice all protocols to not get others sick)
G Daddy (that's me I'm too cool to be a grandpa) Has been taking turns with her Grandmother on her dads side at sleeping over. Mom of course has not left the hospital and barely leaves the room herself.
She also plans on dying her hair rainbow before she loses it. She is aware that she will lose her hair. And has come to terms with it. Its very common for kids to do wild things with their hair in this situation beforehand. And its even encouraged by the doctors.
She seems to be tolerating her steroids much better, they warned us her behavior would change. However she has remained mostly sweet with just occasional flare ups. Some other good things and signs happening. But this is well long enough and some things are personal.
Thank you all for everything. The family appreciates all the wishes and outpouring of love she has received. Be well Be blessed and hug your family today!
And then there was the KFC. She had trouble eating and was loosing weight. Anything she was willing to try to eat, she offered her. KFC fast became a favorite. Another G-Daddy update, in his own words:
Just a small update. Ava is still at the hospital. we are at 20 days and counting now I believe. We were hoping she could leave this last weekend but it did not happen. Her first series of treatments was to last 29 days, I guess I didn't expect her to be in one room for this entire time. ONE ROOM. Unfortunately she unlike many kids in the children's hospital cannot get out of her room and play in the halls due to a virus. As a side note, if you have never been to Vanderbilt children's and seen how they run a dedicated kids hospital, just know it as good of an experience as they can make it.
She's had some issues with Food so she told her mom she wanted KFC which to her is just the mashed potatoes and the Mac and cheese... well you know if they call G daddy she's getting what she wants. Sometimes these smiles are far apart.
My heart gets heavy at times, of that there is no doubt. But my daughter is doing an amazing job along with staff. Be well Be blessed. More recaps and stories to come I'm sure. Hug your family tight today. For me.
Be well, y'all.