Saturday, January 12, 2013

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.

8 comments:

  1. Your need to control has to be increasing the further you are mired in the muck of Esther's treatments. Her health and responses to each and every stick, poke, prod, zap and medication is entirely out of your control. It is only natural to want to control something. But as you have already realized, those tender hearts of all your children are in need. They are young and we can, of course, teach them to rest in God and turn to Him when they feel neglected, but they are, well, young and human. That is so very hard to do, sometimes. I will be praying for them to find that place of being our Lord's beloved when their earthly parents are spent. I will pray that you and Anthony continue to find the strength to give each of your children the time, attention and love the so crave right now. I will continue my prayers for Esther and your entire family. God WILL get you all through this. And who says you can't celebrate Easter with a few Christmas decorations hanging around. ;)

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  2. Oh my friend <3 Praying for you. We can do this! One day at a time.

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  3. I can completely relate to the emotions you're having. I find myself caught up in smiliar ones too even tho our life is finally calming down at this juncture. I will continue to faithfully lift you up in prayer as well as your children and husband. We sang the song "Our God is Greater" this morning in church and the song really ministers to my soul. As the lyrics say:

    Our God is greater, our God is stronger
    God You are higher than any other
    Our God is Healer, awesome and power
    Our God, Our God...
    And if Our God is for us, then who could ever stop us
    And if our God is with us, then what can stand against?

    Hang on, you're DOING it! One day and one step at a time. Continue to cling to the Lord as he carries your family through this valley. As hard as it is to see when you're stuck in the midst of this ugliness, God being glorified through Esther's cancer. You family is doing Kingdom work. Hope your sleep was wonderful in your own bed and your mind feels fresh and renewed on this beautiful Sabbath day.

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  4. You are such a strong inspiration to your family and all of us watching you go through this process. You have our prayers and your family is always in my heart. Stay strong my friend!

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  5. I think of these Scriptures as I read your heart speech -
    Isaiah 35 -especially the 3rd and 4th verses.
    Strenthen the weak hands and make firm the feeble knees. Say to those who have and anxious heart,"Be strong: fear not! Behold, your God will come with vengeance, with the recompense of God. He will come and save you."
    It's God's promise and my prayer for your heart and the loved ones on this journey with you.

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  6. Hi Alvarados. I'm reading and I am praying more.

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  7. Hey Alvarados! I'm also praying for you and it is good you recognize your need for being in control and bringing it to God. You're showing how every thought - especially the anxious sad ones and making it captive to Christ really helps. I'll be praying everyone keeps doing that!

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  8. I vote "yes" to the mask in public :) People will think you have something bad and stay far away.

    I'm praying for you dear sister. For your kids hearts and that God would multiply your love and time with them into their hearts. And for you to have a soft heart through it all. Remember, He will carry it on. Love you!

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