https://isabellasantosfoundation.org/wp-content/uploads/2016/06/beat_grow_live.jpg 400 600 Erin https://isabellasantos.staging.wpengine.com/wp-content/uploads/2020/02/logo-animated-purple.gif Erin2016-06-07 20:03:152016-07-01 18:49:14Cruel games and Taylor Swift
We arrived safely from Disney and settled into a beautiful, quiet, clean house with a stocked fridge. It is really how you should come home from any vacation. The roller coaster that is Isabella continues to play cruel games with us. She goes through these moments of a dark hole, to a sit up in the bed with full conversation and food requests. There has been no pain complaints in the last 48 hours that have required break through pain medication. She even wanted to sleep in her own bed last night. We considered the break for a moment but then Stuart ended up sleeping on the floor next to her bed just in case. This morning she slowly walked downstairs which shocked us all. She seemed to do well this morning but when hospice came to put her line in, she spiraled out of control. Shaking, anxiety, nerves.. I just couldn’t settle her. There was a small discussion that needed to be had without her in the room and she just wouldn’t let go of me. She was grasping on to me with all of her strength and would not let me go. I read into everything these days… maybe she knew what i was going to hear and didn’t want me to hear it? As heartbreaking as it was I had to peel her off of me to discuss her private matter on the porch. As she watched me through the window I told the nurse.. “She seems really good! I feel like I’m second guessing things here.. Maybe she might pull through this?”. I know that the nurse wanted to agree with me, but we were warned of this rally that she would get near the end and that we should not be fooled by this last cruel game that her cancer will play on us. I was told that most of them rally before they finally commit to the process of dying. The fact that she now closes one eye to see, indicates that the cancer has spread to her brain. She has not yet lost some of her abilities to walk, use the bathroom, etc.. but they will soon be taken from her. I think Stuart and I have just lived for so long being an advocate for her and getting her to pull through when doctors throw in the towel, that it just seems to go against everything we are to accept this. Afternoon visits from friends and a last minute request to go as a family to a Japanese Steakhouse filled the rest of our day. But as I laid her in my bed tonight, I knew that hospice was right. She is trying for the last time to live.. but her body will soon lose the fight. I feel like I’m coming to peace a bit with the fact that we are going to lose her soon. The community of people supporting us doubles daily and her reach is growing nationwide. It seems fitting for her as Isabella always thought that she was a celebrity her whole life, but just wasn’t sure why. That point was made very clear today when my phone rang with a blocked number.. Taylor Swift was on the other side of my phone and she had heard of Isabella and her fight. Isabella is a huge fan of hers and a month ago, she would of screamed bloody murder to hear her on the other side of the phone. But, this disease is taking all the of things about Isabella that made her so wonderful. It was all should could handle to just lay on the couch and listen to this women she loves speak to her through the phone. She could barely speak, she just looked at the phone with one eye closed as if she would trying to see Taylor in the phone somehow. If you could of seen Isabella at her concert a couple of months ago, it would take your breathe away to see her now. How just a couple of months and a horrible disease can steal more and more things from her every day. Makes me so sad to see it. Even the revolving door of loved ones who leave and I know they are thinking it is the last time they will ever see her. This is my day.. my heartbreak, Isabella’s heartbreak, and heartbreak from everyone we come in contact with. I can only think that through her life, so many are changed that it will make the difference.. maybe even save another child’s life. Isn’t that what we all want? Our life sacrifice. knowing it can save someone else’s? That is an amazing gift. One death for the sake of millions? I know that is what Isabella would want in the end. To know that because of her, another little girl will not have to miss her last day of kindergarten. I selfishly wish that my daughter was the one being sparred. That her last day of kindergarten tomorrow would be filled with laughing and running and playing. Instead we head to the clinic for a full day of blood and platelets. Another memory, stolen. How unfair her life has been, but how beautiful it has been as well.