Feb 24, 2016 (Sara)
Day 8 is now almost Day 9. Two days ago, I would have said that I was more nervous about Day 8 than Day 9 but…well now it looks like we are discharging on Day 9 and it sort of makes my stomach queasy. A part of me is amazingly thrilled about going home. About seeing Maya see Lincoln – I know imma cry so bad. Excited about seeing our new home that my besties et al have set up, sanitized, and made comfy. About seeing Pelei the Poof…I miss her so bad. About sleeping on my sleep number, next to my amazing husband…also probably with Lincoln…also probably with Maya. Happy to eat home cooked food, drink a glass of wine, omg poop in my own bathroom. A part of me is really so eager to be home I can almost taste it. Then there is another part of me that is frightened. So frightened of so many things. I could mention the list of things I’m scared of but I actually don’t want to…I believe in the law of attraction and while I can’t seem to shake the fears out of my mind, I’ll avoid listing them. I’m fairly certain seeing the list would frighten me. I know we have the most amazing support a family can ask for. You have all proven that our people are a people of Love. I was raised with Love and encouraged to surround myself with Love. This has never been more evident in my life. I truly don’t know how to thank everyone.
My parents have been a strength like never before. They came to catch me when I was falling as they always have but this time…it wasn’t just me. While I’m not sure I will ever be able to express how much it means to me…I hope they can feel my gratitude in the hugs, tears, conversations, and silence. I understand this support will not end. I know we can do this. I know Maya is a Dragon Princess and she will give us the strength to do what we have to do.
I know that there will be good days, bad days, great days, scary days…we are hoping for wonderful days too. Maya and Lincoln will have a very different childhood. Very different than mine, than Scott’s, than most people I know. As Scott reassured me today while waiting for Maya to come out from her procedure…we are shaped by our experiences. After losing April (my childhood best friend) to brain cancer, I was different than I would have been if I didn’t lose her. I hold on tighter to those who I connect with knowing that it might be the last thing I do. I am grateful for the vast appreciation of friendship I gained from knowing her. I grew up to be the woman I am because of her…and because of the experiences she endured and I witnessed. I have to support Maya through this journey of hers. This is her Dragon tale and we all characters in her adventure. I want to be the Knight fighting beside her as much as I want to be her Dragon den where she goes to rest. I know we all will have a part in her story and I am so unbelievably, speechlessly, amazed at how much we have been Loved. Thank you from the bottom of my heart again. And again. And again.
Motherly assessment: LP (lumbar puncture) with chemo today. Introduced methotrexate into the spinal fluid. Infusion of vincristine (chemo) via buddah button. Hemoglobin 9. Platelets dropped to 85. WBC 0.4…ANC is not able to be calculated (aka: nada, zip, zilch). Appetite – ravenous though specific (continues with desire for noodles with butter and cheese plus pickle sammys). No daily weight today, oops. Some stomach distention likely due to fluid overload, increased intake of food, effects of steroids, constipation (poor girl). Saw her pee 500cc twice today – that is 1/2 a liter, I was very impressed. Mood….moody. Sometimes sweet. Sometimes sour. Sometimes….Dragon in all aspects of the creature. On our way to her LP today, I carried her over the walk way from one building to the next. I pointed out the Family House where we are staying and said “that is where mommy, Grandma, and Linco sleep”. She asked if he was there and I confirmed. Then she asked “is he looking at me?” as she waved. Ugh I can’t wait till they are back together. Love is Life. Soon we’ll be home.