We were admitted on Friday afternoon and Avery started her new chemo around 10 pm that night. Chemo went fine and yesterday she was her normal rascally self. We spent some time outside in the garden again and walked as much as we could. She has been on fluids the entire time and as a result woke up pretty puffy this am. For those of you that saw me right before I had her....that's what she looks like. Jeremy and I laugh as she finally looks like me! Of course the swelling will go down in a few days once they cut her fluids. For now, they are neccessary as we have all those crappy drugs in her again. She seems to have a fine appetite so we are hoping we have the nauseousness under control. No nap yet today -- we'll see how long she lasts. She seems to be a bit weak and lethargic today - but still full of attitude at the same time - trying to get around like normal. She and daddy are watching some football while she plays on a really loud keyboard piano. Makes me laugh.
We are anxious to finish this stint up so we can get back on the road and head home. Jeremy and I are having a better day today. It appears we needed a few days to catch up to the rest of you and now that we are there - we are ready to start investigating our options. Avery is too strong and too important to not make sure we check out every thing out there. I can't imagine a world where she doesn't exist so for now - we just won't and we'll move forward with the next steps. We are looking to see what protocols are available at other hospitals for children with recurrences of Medullablastoma. At the same time, we'll be looking at what changes we need to make at home to give us the best situation for the 3 of us possible.
This sucks. No one should ever have to do this. We are mad and frustrated, confused and disappointed, but mostly determined. Determined to make sure we give her every last chance we can. Determined to make sure she has everything she could possibly want. Determined to beat the odds....to be that miracle....to mystify the Dr's and shatter the expectations. If anyone can do that -- it's us. Avery has so much more to do in this world and we are going to prove it. With God walking right beside us the whole time -- we will make it through this - failing is not an option.
We need all the prayers out there that you all can muster. We need everyone to give this to God and know that he will make it right. And we are going to need a lot of support. We've asked so much of everyone already, but we need even more now. The gloves are back on - bring it.
Jenn & Jeremy