There are no words to describe how I am feeling after yesterday. A little lost and grateful we are where we are.
I watched and held my first-born darling red head screaming over the finger prick to get her blood counts. I had to hold her legs with my leg and her writhing body with all my strength (my dad helped too). Then as we learned she made her counts and was looking good, we heard great news. She gets to begin the maintenance phase of treatment. After that I had to hold her down for port access and then talk her through the different medications. I watched as they lightly knocked her out. I watched as she was rolled into fetal position for her spinal tap, her eyes were crying silently. I spoke to her and sang the entire time to help soothe her. As she awoke she was loopy and feeling silly. Thankfully, she didn't consciously remember the spinal tap.
So what is this maintenance; This means that for the next 2-2.5 years she will continue with finger pricks, chemo taken orally, spinally (intrathecal), intravenously (in her port), steroids, antibiotics, and various other medications. After all that she will have scans and tests to see if cancer comes back. And then forever and ever she will always be at a higher risk for various cancers. What does that do to a person? Well, since she is four she doesn't have to worry about it right now. But you know what? She does. She frequently talks about hating chemo and how the medicines are disgusting and they make her feel weird. She's talked about death and God and how she feels like she is dying at times. SHE IS FOUR(well almost 5). The greatest thing to come from all these sad talks is we tell her to keep fighting, keep being brave, keep finding peace and to continue to trust. Because honestly the only way we hold it together is trust.
This week we are getting ready for her Make A Wish trip to Disney World and all I could do for the longest time is worry about if we will actually get to go. Now I am feeling like we are going to get to go and we are going to forget all about cancer for awhile, as much as we can. We are going to appreciate life and love and really get to dazzle Ainsley and George. I am grateful for everyone's prayers, help, time, food, donations and I am excited for this upcoming opportunity. We will keep you updated and again we couldn't and wouldn't be here without you all.