Today was a long exhausting day. I have a feeling just one of many. When we got down to Children’s this morning Ellie kept on yelling me. I said to her “Don’t yell at mommy, be nice” Ellie responded with “Its not your birthday” So I guess I only get treated nice on my birthday. Only 365 more days till Ellie is nice to me again. I can do it. Dr. Goldman came in to throw us a curve ball. He wanted to do a spinal tap procedure on top of inserting the Port. Basically he is concerned that Ellie's face droopiness could be a result of the Cancer spreading through her Spinal Fluid. We obviously gave the thumbs up and let them do the additional procedure. We will get the results either Thursday or Friday.
As far as Ellie, she was extremely cranky and violent when she woke up from anesthesia. She is also has extreme pain in her back when she stands or walks. For you that don’t know what a spinal tap is. Think of it as an Epidural but they go much deeper in the spine to retrieve fluid and examine the contents of the spinal fluid. They said she needs to just rest for the next few days to get herself back on her feet and feeling good. We did get a chance to speak with the nurse in the oncology department while Ellie was in surgery today. Ellie will be doing Chemo treatments for one year. She will start with a 10 week strait cycle and get two weeks off for good behavior as the doctor put it :o). We are expecting some hair loss but they said for the most part she will just thin out her hair. Because her hair is already thin that might pose a problem in the future. But for now we are thinking on the positive side.
As the nurses went over all the side affect and what I need to be watching for I felt my head spinning. I felt like throwing up that I have this precious life. I realized that I am a care giver to this very sick little child who is relying on me to take care of her. For next week we only need to watch her temperature to make sure it doesn’t go over 100.5, if it does it could be a sign of an infection in the port. Not scary in the least. Dave keeps on asking me how I can watch Gray’s anatomy and it doesn’t freak me out but taking care of Ellie and watching for side affects makes me sick to my stomach. I informed him that it’s just too close to home; you can always turn your head when the TV is on.
The next year is going to be a rough year with many ups and downs. I am doing my best to stay strong for my little girl. I just ask that everyone hold your children close and appreciate how healthy they are because this horrible disease can strike anyone at anytime. So cherish every moment.
I will be posting once I know what the results are from the spinal fluid. Thank you to everyone for following our story. Like I said I get great pleasure out of seeing 900 hits a day. We feel so loved and feel the support. Ellie needs me so I really must go. I will post video and pictures tomorrow but for now God bless my sweet child and Thank you for your support.