Yesterday and today were pretty typical days for us here at St Jude. Yesterday she had her MRI, PT and OT follow ups, labs and a Neuro Oncology visit. She was a pistol...like she has been for the last few weeks. She wants down - she wants to walk - she wants to go this way and that - and let me tell you she is not quiet if you don't let her. The terrible 2's have reared their ugly head and with each temper tantrum, we quietly thank God that we get to experience these moments. Unreasonable, irritating, and completely illogical as they are -- they are also NORMAL. More than anything we'd love to have a little more of that word in our lives.
Today she had her ABR and LP, a eye Dr visit and a visit with Dr Armstrong. Results for the MRI and LP will be in tomorrow. Once we have those we will share. The Dr's have discussed with us and regardless of these results, we will continue down the path we are already on. This includes the Clinical Trial at Sloan Kettering. It's been a tough day today. We learned the prognosis of a child that was here with us last year is not good. The tumor is very quickly taking over his little body and although he is fighting with every ounce he can muster, they haven't given him long... Our hearts ache for this family. I can't pass the mom in the hall without crying and it is so completely devastating to know that there is not a single thing I can say to make her feel any better about things. All of us here know that the chances of losing a child are so very likely, but it doesn't make it any easier to deal with. As strong as each one of the parents of St Jude are when we return home to our family and friends, here we are allowed a little more freedom to grieve for the lot that life has thrown us. It sucks. Cancer sucks. There is just no better way to say it. IT SUCKS.
Surgery is scheduled for Friday. We have to be there at 7:30 am for admit and then it's a hurry up and wait game until Dr Boop is ready for us. Post Surgery she will be moved to the Neuro Floor and observed for 24 hours. If the surgery/recovery is done by 1pm then we will get released Saturday at 1pm. Regardless, we will be leaving Saturday (pending any complications). Sunday will be a big day of unpacking and repacking for our journey to NYC. Out flight leaves at 7 am on Monday morning. We are excited to see the big city and get a chance to hang out with one of our buddies from St Jude, Colin. We also are looking forward to meeting up with one of my close friends, Laura from high school and college that lives in the city. With a whole city full of walking to take on -- I think Avery is ready. Question is what will NY think of this absolutely adorable blue-eyed baldy from the Midwest with a definite plan of what she wants to do? I suggest getting out of the way City Slickers....
Jenn
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