Friday, June 29, 2012

Humbled

We can not express the gratitude we have for the outpouring of support for our family. We are humbled, feeling so unworthy of such love. The comments on this blog, on facebook, and emails have truly been cups of cold water to thirsty souls. Many of you have cleaned our house, brought frozen meals, come up with amazing ideas to spilt our woodpile, fed our chickens, mowed our lawn and shown such generousity and eagerness to meet our needs that when we take it all in, it's hard to breath for such gratitude.

Yesterday our oncology doctors were asking us about our support system and I just cried. I could not even get through it and nearly whispered, "I feel so unworthy of such love." Thank you, we are humbled. Humbled.

I know many of you are eager to help in tangible ways and we're working on that. We're just really not sure what our needs will be, but the next week will help to reveal what ways would be helpful.

One thing you could do anytime is to donate blood or platelets at Children's Hospital. I've seen many signs that they need platelets. Because chemo kills both cancer cells and healthy cells, most kids need some sort of blood or platelet transfustion. You can read about donating blood at Children's here and about donating platelets here. Platelets are especially important for cancer patients.

Today was a day of learning for all of us. I stayed the night at my parents' house where the kids are at right now. Rourke, Lydia, Frannie & Zinnia came to the hospital late in the morning and got to meet Miss Ashley, our child life specialist who is sort of like a teacher about medical things in the hospital. She talked to the kids about what was going to happen to Esther, showed them a therapy doll with a port just like Esther's and they got to show off their understanding of anatomy from our school with Classical Conversations. It was neat to see that they remember the purposes of blood, where some of their organs are located, and that lymph nodes catch bad cells. It was totally the classical model of learning played out today...they had the grammar (basic vocabulary), and were able to be dialectic and talk about it/understand it, and then they were rhetorical by showing us on the therapy doll.

We learned more about the MIBG therapy and decided it was a good option to encorporate into her treatment. It will probably be sometime in November we will have a few weeks in a new city. We don't have a lot of choice in our location because it requires a lot of special things...like a lead room and lead boxes and radiation safety managers...they have to schedule us for when they can get us in. Even though the radition is a lot, it is actually relatively safe. The exposure is about one CT scan. Children's Denver is actually going to have a room in thier new wing for just this purpose and we have access to an MIBG expert here, it was great to hear from her and see that the potential benefits for Esther's recovery FAR outweigh the risks.

I learned about our first 21 day cycle of treatment, the drugs she'll be given, and what they do to prevent side effects. She will begin chemo tomorrow. She'll have about 2 hours of fluids and some medicine to help protect her bladder. She'll have two different chemo drugs and then another 2 hours of fluids to dilute the chemo to a level that will allow the most killing of cancer cells and preservation of her healthy cells. We will repeat this process again for the next 4 days. Then she'll have some labwork and check ups in between chemo. We can do some of this at Poudre Valley Hospital, so that is nice. The second 21 day cycle is the same expect they will extract her stem cells after that second cycle. Sometimes I get amazed by the technology of it all but then remember that God holds all things together...stem cells, the chair you're sitting in, the mountains, the seas, all of it, by a word. He is in control of it all and created it all. The technology is amazing but God far more awe inspiring.

This weekend we'll be learning about chemo, potential nausea, nutrition (did you know yogurt and other probiotics are actually bad for chemo patients...I learned that today). The staff here is so great. They are kind and encouraging. I have found our doctors really wanting to be on our team. Esther is such a sweet girl...Dr. Garrington said he's sure the nurses will be fighting over her. The night nurse just told me she hopes she wakes up a bit tonight because she has such a cute voice and another nurse she had earlier in the week came to visit because she was so excited to see Esther again. Our nurse today was a classmate of mine from CSU. I find myself loving these people already.

We are so humbled. So thankful that this journey is not alone. Thankful for friends, strangers, and medical staff who have poured us cup after cup of cold water. God sees and is pleased. He sees your tears as you grieve with us, He sees your eagerness as you prepare a meal and think of ways to help. He sees your prayers and is blessed.

 

6 comments:

  1. That is so cool that you are feeling God's love obviously through His word and His community (The Church) I laughed when I read about the others nerding out with the Child Life Specialist! Heee heee heee! Your kids are awesome!

    One thing I've been praying is that you all will be a light of the Gospel to the staff and other families at Children's. Philippians 1 talks about God using Paul for the Gospel even when he was in prison. That made me think of you!

    ((HUGS))

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  2. Thank you for your continued updates. You inspire me daily with your courage and how you are handling this trying time. I will look for ways to be supportive despite the miles between us. You are in my constant thoughts.

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  3. “Only the Word is the answer to rightly reading the world, because The Word has nail-scarred hands that cup our face close, wipe away the tears running down, has eyes to look deep into our brimming ache, and whisper, “I know. I know.”

    The passion on the page is a Person, and the lens I wear of the Word is not abstract idea but the eyes of the God-Man who came and knows the pain.” (One Thousand Gifts)

    Thought of all of you when I read this....wanted to share it with you:)

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  4. Thank you for the updates. Though we have never met, your story has touched us (through my sister, Jenn Schmidt) and we have been praying for all of you.

    Should Cincinnati be the place of the extended treatment, I would like to offer you my home to stay in. My family and I only use it during the summer months and at Christmas, and the rest of the year it sits furnished and unoccupied as we live in Orlando, FL. We have two young children ourselves, so we are set up for children. :) Please know that it is there for your using, should you need it.

    Blessings to you all,
    Christy Reynolds

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  5. ... And WE are blessed to witness His presence working in, through. and around you. Glory!

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