Recovering

Tonight is my first time home in almost four weeks. It's nice, I think. At the same time, it feels strange, disorienting. I think it's because I want everything in order, I want to be in control. Yet, time will not allow, and I must choose to engage in the hearts of the three girls here with me rather than find peace in putting away the Christmas decorations and purging toys.
This is a strong clue that I am operating in a mode of anxiety. It is just like an eating disorder, it's not really about being thin, it's about control. I can't change the circumstances of life right now, so what is in my reach?
The last month, the last seven months have been pure survival mode. Just make it to the next day. I find myself living in a reality that is not looking ahead to the next seven months. I feel like it should all be done. Esther has already endured so much treatment. Her body, destroyed by chemo, is being sustained by other people's blood and an IV with liquid nutrition each night. Shouldn't this all be done? Can't our family be together?
I see the frailty of Esther's body, and I am beginning to see it in the hearts of my other kids. This chaos, time away from us, from me, is leaving them threadbare. The last few times I've seen the kids have been heart wrenching for a mother. To have them cry, honestly, that they don't want to leave me, that they miss me is horrible. Pray for them, for Rourke, Lydia, Frannie, and Zinnia. Pray their hearts would remain soft and tender, gentle, compassionate and that we'd give the time they need to rest in our love, rather than hurt them by choosing to find security in what we can control.

We are working out a plan to be able to spend more time with them over the next 6 weeks. Beginning January 22nd, Esther will have radiation five days a week for a total of 20 treatments. Because there were some calcified lymph nodes on her pre-transplant scans, she will need more than the original 12 treatments we were expecting. Her radiation doctor, Dr. Lui, said that in those cases there can be microscopic cells that are not detectable until they've grown and become a life eating tumor. With a cancer as aggressive as neuroblastoma, it is never wise to err on the lighter side treatment.
So, we move forward. Esther will remain at Brent's Place because she needs to be near for her daily radiation and frequent clinic visits and transfusions. Due to the need for her to lie perfectly still, she will be sedated for each early morning treatment. We will share the time in Denver and as of now, siblings are allowed in the clinic, so we'll have a variety of siblings there with us.
Esther is doing well. It is a joy to see her running on her tip goes and laughing with her brother and sisters. She is, and will be, incredibly vulnerable to illness. The pressure of staying healthy keeps me up at night. I want to lock our family in a bubble. The thought of illness robbing us of further time together is more than I can handle. Pray for health, my worry will not help one bit. I might start wearing a mask in public. You never know what you might encounter, like the creepy guy at Walgreens who hit on me and then tried to give me a hug. I practically shrieked, "Don't touch me," but it was because I was more afraid of what germs he was carrying than the fact he had just put his arm around me. I will confess I took a bit of satisfaction in telling him my pill crusher and gloves were to take care of my daughter with cancer, not "for my nursing friends." <insert shudder>.
Anthony, Rourke, and Esther are at Brent's place for a few days. The girls and I get to spend the weekend at home with Aunt Teresa and Aunt Margarita. Pray for rest and a bit of recovery for all of us. Tonight will be the first night in my own bed in 28 nights and it's calling.

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