Tuesday, November 27, 2012

Let Us Take Care Of You

God has provided wide measures of grace the last two days. I've felt like there are wider margins than there should be, and Esther has done so well.

Yesterday was a busy day of learning, talking, planning. The Bone Marrow Transplant team at Children's Colorado is very well respected among their peers and around the country. There are so many reasons why. We have felt so very thought of and prepared for. Every person on the team knows Esther's case and her days. Her primary doctor is the head of the BMT program, but he knows her schedule and has spent well over 4 hours just communicating with us. They have ushered us into this very sobering portion of Esther's treatment with assurance and comfort. In the midst of all of this cancer treatment, it can be easy to forget how sophisticated and specialized is Esther's therapy.

After our long day of learning about and practicing care of Esther's new central line, we arrived at Brent's Place and were greeted well. One of the members of the staff was busy filling a wagon with food and the director showed us to our apartment. We were delighted to see a sweet greeting. Esther asked, "Is that for me?!" Monday night is a great night to check in because it's family dinner night. Various chefs and regular home cooks volunteer to prepare a meal and all of the families are invited to come together to enjoy a meal together. The two women who cooked last night's meal made 4 or 5 different dishes, a delicious salad, bread, brownies and we even enjoyed a glass of wine. Last night was an extra special treat because it was one of the patients who live in the building's birthday. Brent's Place provided an A-MAZ-ING birthday cake and even had some gifts for the birthday boy who turned 11 today. It was nice to talk with some of the other families. I am realizing how much a gift it is that Esther will be getting her own stem cells rather than stem cells or marrow from another person. It will lessen the blow of her journey significantly.

The placement of the Broviac went pretty well. A broviac is basically an IV that doesn't come out. It comes out of the right side of her chest and has two different IV lines under her skin that flow into two different veins. One of the veins they like to use is in her neck, but for some reason that didn't work so well, so they had to use a vein under her collar bone. In the end it is placed well and was drawing just fine in the OR, but she did end up with extra incisions because of the difficulty of finding a vein that worked well. She also had a smooth bone marrow biopsy and hasn't been too sore this afternoon.

Esther was scheduled to have surgery at 9:30am this morning, but they called us yesterday afternoon to tell us her surgery was rescheduled to 7:30am. That meant we arrived at the hospital at 5:30am. It was nice to drive about 5 minutes, especially that early in the morning! Esther was pretty excited about her warm blanket. We texted pictures to my sister who was taking care of the kids. They thought our outfits were pretty smashing.

Getting to the hospital earlier than planned is quite the difference, especially since Esther has quite the appetite these days. She gained almost an entire kilogram in less than a week! That is over two pounds! She was pretty funny before going back to the OR. The nurse asked her what color popsicle flavor she wanted when she woke up. She said, "No, I want dinner." They all got a kick out of that...she didn't want breakfast or lunch, just dinner. That's good for her. As much weight as she can gain over the next couple weeks the better. The rest of the afternoon she was asking for that dinner. Unfortunately anesthesia makes her pretty nauseas, so as fast as she could inhale any bit of food, it came back up. She did manage to keep down her dinner...green beans and macaroni and cheese. About half a box of mac & cheese. Before that she kept down her snack...a cheese stick, a cup of applesauce and repeat.

Tomorrow will be some evaluation of her hearing and heart functioning. She will also have her MIBG injection for her MIBG scan on Thursday. Anthony went home this afternoon but will come back tomorrow with the kids. They are so excited to visit Brent's Place. It's another good night to visit because it's craft night!

When I was checking in with Allen from Brent's Place he walked through the financial portion of staying here. Because of generous contributors to the foundation that supports Brent's Place, our stay is free. As I was talking with Allen about this and how amazing it is to be able to offer this facility to families at no charge he told me that right now is the time to "let us take care of you." He then proceeded to tell me about how each family gets one outing per month and that even though Esther will be in the hospital, he'll organize a birthday party to celebrate both her and Zinnia's birthday and will send a small cake to the hospital for Esther and have a big one here for Zinnia.

I was reminded of these promises in Revelation 21:5-6

5And he who was seated on the throne said, "Behold, I am making all things new." Also he said, "Write this down, for these words are trustworthy and true."

6 And he said to me, "It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the spring of the water of life without payment.

God is making all things new. ALL things. Our big and little things, our hurts, our sin, our pain, our struggles. God can not lie and reminds us...these words are trustworthy and true. Write down, believe it! It is done, our assurance, our forgiveness, our eternity in Heaven, our cost to stay at Brent's Place. It is done and the water of life is given without payment.

We have done NOTHING to earn this gift of staying at Brent's Place, of having our daughter treated at one of the best transplant facilities in the country, with some of the most respected care givers. We could never give back enough to "make up" for the ways we have been blessed on this journey. We could maybe even it out monetarily but the effect on our hearts, the love we've been shown here and along the way from our family, friends, and strangers, the depths of it all could never be repaid.

As it is with Christ. We can not earn His favor, His forgiveness. It is a GIFT, it is waters leaving our every recurring thirst satisfied. Water none of us could ever buy. While this journey is so, so, so wearisome, God is faithful to give take care of us. He's faithful to take care of you. We have to stop trying to earn it or feel like we've done something to deserve it and just let God take care of us.

 

6 comments:

  1. I'm so thrilled that you have Brent's place during this part of Esther's treatment. It's not an accident that you guys live in Colorado and are able to have her treated at Children's. It's all part of the plan. In church on Sunday, one point in the lesson was that God cares about all the details of our life. Glad that you know that y'all are being well taken care of.

    Much Love!

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  2. God is good. So amazingly, awesomely good.

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  3. Sam, this post made me cry...they are taking such good care of you and I am so thankful for those good people. And I am so thankful for your choosing joy and thankfulness...so hard! You are doing such a great job persevering during such an unthinkably excruciating time. Love you guys and praying through your list.

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  4. Sam,
    I have tried to write you before, but really what would I say. I try to put my feet in your shoes. You and Anthony are so strong and your Faith has got you thus far. He is holding you up and even on the lowest days, you are strong, even if you don't see it, I do. I see Him shine through every blogpost.

    Our family has been in the adoption process for some time now and we have gotten weary, tired, stressed, some of the same emotions that you have experienced, maybe not as intense on either side but emotions all the same. You have posted music before and how that has gotten you thru a tough hour or day and I wanted to share with you a song by Sara Groves, "Eyes on the prize" As I was thinking and crying today again, I think and pray for your sweet Esther and you and Anthony and your sweet other children everyday, as I was listening to this song, it reminded me of your circumstance yet very different than ours, I think it would have meaning for you and your family too. Our prize is Jesus and no matter what happens in either of our circumstances we will have Jubilee because we have Him.

    http://www.youtube.com/watch?v=TPnWMymk9o4

    You are Loved. Your sister in Christ,
    Amber Schmitz

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  5. We've had such a busy week so I'm just catching up on your blog posts. I'm glad things seem to be going so well for Esther. Brent's Place sounds amazing, what a wonderful ministry to the families in your area. I continue to pray for you all. I will especially pray for you - I know firsthand how exhausting this all is. Andy had a transfusion today and when we got home I just felt like I'd been runover by a truck. Hospital appointments are just exhausting no matter how you slice it, but when you're getting a lot of new information, they are even moreso. Hang in there mama!

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  6. Thank you for reminding me of God's Grace.
    And that God makes things new. I can hold on to that.

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