Still home : )

We are still home, yippie!  Yesterday was a day at home where I made breakfast, lunch & dinner.  Anthony and I had a real date.  A good day.  Today we have an appointment in Denver just to check her counts and schedule her chemo for next week.  No more time for blogging today, I get to be mommy for all 5 of my kids at the same time. 

The Princess Rock Star

Meet Esther, she's a rock star!

Hmm, what do you think about my style?

Check it out from the side.

See, it's pretty rockin' on the top.

I think.....

...I'm a rock star. Even Sleeping Beauty faints at my radness.

This Princess Rock Star broke out, ran for the door, jumped in the car and ate pizza for dinner at home. She even went wild and watched a puppet show put on by her groupies, Rourke, Lydia & Frannie. The stuffed animals swooned over the celebrity in their midst, this Princess Rock Star. She's scheduled for a quick encore performance Thursday at Children's in Denver, but we're praying to the Rock that she remains fever free. Her Stage Manager, Daddy, is primed to take out any thermometer reading above 101 and perhaps thrash a hospital room or two. You never know what will happen with these Rock Star types.

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Drinking Games

Sorry for the pun, I just couldn't resist.

Cuddling

A few nights ago I found this work of art. For a mom whose primary job while in the hospital is to make sure her daughter is drinking enough liquids, this is a masterpiece! It's this tricky thing, she needs to be drinking a minimum of 32oz/day. She also needs to be eating, but it's hard to eat when your tummy is full of water and you're not feeling thirsty because you're on IV fluids. So, we make games of out of it.

So far we have five main drinking games, please leave your ideas below. The oncology doctor today said we would get kicked out of the hospital if anything involved a red solo cup.

1. Cheers...we've all done it...tinked our glasses and said "Cheers!" and then took a drink. We've both found hydration successful through this tried & true celebratory event.

2. Glug, Glug. You know when the water cooler is dispensing the water and it glugs? Esther can make some awesome glugs with her princess water cup.

3. The Fish Game. There is a pretty incredible ball machine in the lobby of the hospital. It has tons of cause and effect events that make a ball move through a series of twists, turns & jumps. We like the red lipped fish. Everytime the fish eats a ball, Esther takes a drink.

4. There are some fun paths in front of the hospital with pretty landscaping. In the grass are some cement squares that make a path out to some small trees. In this game one of us jumps from square to square. When landing on a square, Esther takes a drink. If she's the jumper, it's totally adorable. When I'm the jumper, the people looking out their windows must think there's some crazy lady doing very uncoordinated exercise on the cement squares. But Esther sits in her stroller taking drinks and tells me good job when I land.

5. Turn the corner or go under a door. When on a stroller ride or walk every time we turn or go through a door, Esther must take a drink. That was our game tonight as we needed to stay close to our room. We did sneak down to take a peek at the ball machine.

Esther also likes to take "big girl" drinks. That means straight from the milk carton, cafeteria style. No pushing a straw through the side, junk. This is the real deal, folks.

Esther wasn't feeling great today. She was really, really stopped up and they've given her the full regime to try to flush her system. She ate apple sauce, drank apple juice, had fig neutons, no milk or salty stuff and lots of fruit in addition to meds to help it all along, the goal is to flush her system. She also had a fairly high fever most of the day and was just sleepy.

She perked up about 3 this afternoon and has been fever free since about 2pm. She will have an x-ray tomorrow morning to determine if her bowels have cleared enough to go home. If she's both fever free and and more regular, we might get to go home tomorrow.

Her ANC was 660 this morning, so they aren't so worred about infection that might pop up because she's got something to fight it with.

I overheard a sweet conversation outside our door today. The resident doctors were doing their rounds and I heard one doctor ask a nurse we had for several days last week if he had "sweet little Esther." He said, "I wish, but she (another nurse) got her." Then I heard the resident doctor say, "Oh man! I wanted to see her today, but I guess she's (the other resident doc on the floor) got her." About 15 minutes later they both came in to look & listen and confessed they both wanted to see Esther and decided they would share the job. What a sweet girl.

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New Mercies Each Morning

As Anthony wrote, yesterday was a hard day.  Maybe one of the most discouraging we've had.  This morning he shared Lamentations 3:22-26...

    [22] The steadfast love of the LORD never ceases;
        his mercies never come to an end;
    [23] they are new every morning;
        great is your faithfulness.
    [24] “The LORD is my portion,” says my soul,
        “therefore I will hope in him.”
    [25] The LORD is good to those who wait for him,
        to the soul who seeks him.
    [26] It is good that one should wait quietly
        for the salvation of the LORD.
    [27] It is good for a man that he bear
        the yoke in his youth.
(Lamentations 3:22-27 ESV))

Here's a few mercies this day...

Toothless beauty!

We went to dinner at one of our favorite places, Santiago's in Loveland. Lydia was enjoying a sopapilla and when she cupped her mouth.  We ran to the bathroom and pulled out right there.  What a cute girl!

The Logging Team

This morning a big truck pulled up in front of our house with a log splitter.  Shortly after came lots of strong hands with another log splitter and other wood splitting tools.  Away they went.  We have a woodburning stove that heats our basement in the winter and we had a huge pile of wood that needed to be split.  These guys from Anthony's office and our church split the wood, stacked it up, and cleaned up a mountain of bark and scraps.  They were so fast, they cut down a dead tree in our front yard THEN they cleaned out our garage which was has become a disastrous, dumping ground.  They installed a screen door that has been sitting along the wall of the garage for 2 years and fixed the drive through window on our front door which used to hold an intact screen.  When everything in life is so out of our control, a clean and tidy garage sure does make it feel a bit better.  Now, if we can figure out a place for all the bikes we might actually be able to park in that garage!

Rourke got to do some manly things like use a log splitter and then Mr. James took him and some of the other young muscle men out back to shoot the BB gun.  That's a sweet day for a 7 year old!

And our MOST exciting mercy thus far had us jumping up & down!  Here are the girls saying, "Thank you, God!"

Esther's hemoglobin and platelets were so low yesterday they had scheduled a blood and platelet transfusion for this morning.  BUT....her levels jumped up and her ANC went from 9.8 yesterday to 74 today!  My faith was so weak yesterday, I was sheepishly asking for something in the 20's.  If it's over 100 tomorrow, she'll get to come home and we have a week together before we have to start our next chemo treatment. New mercies, new mercies.

Maybe we'll get a bogo!

What a day. This morning Esther's counts were 160...that's GREAT and she was discharged. Uncle Casey was so kind to drive down to get Esther and her Daddy so the rest of us could go to church. I was really encouraged from the message when our good friend (and pastor) shared about prayer and why to pray. His rhetorical question was why do we pray if God's got it all worked out anyway?  

He shared from Luke Chapter 11 where the Lord's Prayer is found. Jesus gives an example and then goes on to exhort the disciples to keep asking...

5 And he said to them, “Which of you who has a friend will go to him at midnight and say to him, ‘Friend, lend me three loaves, 6 for a friend of mine has arrived on a journey, and I have nothing to set before him’; 7 and he will answer from within, ‘Do not bother me; the door is now shut, and my children are with me in bed. I cannot get up and give you anything’? 8 I tell you, though he will not get up and give him anything because he is his friend, yet because of his impudence he will rise and give him whatever he needs. 9 And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. 10 For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. 11 What father among you, if his son asks for a fish, will instead of a fish give him a serpent; 12 or if he asks for an egg, will give him a scorpion? 13 If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

Our pastor's encouragement was to be that neighbor and to just keep knocking. Not demanding, but to not give up on our requests. This was encouragement to me...I can feel like answer to prayer should be immediate and if the answer I want isn't coming about, God's answer must be no. I was encouraged to have the freedom to just keep knocking. God has good gifts for us!

It was so good to sing with our church body in Ft. Collins, be refreshed to knock, and remember Jesus' precious gift through communion. About 30 minutes after we got home, everyone was home.

Anthony and Aunt Margarita took the older kids to see a movie while Zinnia & Esther napped. When Esther woke up she had another fever...103. She'd only been home about 3 hours. I gave her some water and it went down to about 102.5. We're supposed to call at 101...that phone call really sucked.

We were able to drive to Denver this time. When we arrived they accessed her port and checked her blood counts. They jumped from 160 this morning to 550 in about twelve hours. The ER doc told me she was shocked to see a jump like that, calling it "miraculous." We were teased with a hint to discharge, but alas, they want to be sure she doesn't have an intestinal infection. They took x-rays and found she's really stopped up but the best way to look for this infection is a ct scan. The oncology doctor decided rather than expose her to more radiation from a ct scan, it's better to just observe her overnight.

I've been peaceful today through it all and am thankful for miraculous ANC jumps and see the humor in a big, smart radiologist having to look at pictures of poop. I just went to get something to eat while Esther sleeps...I got a "Beast" breakfast burrito. It was good and would've served my entire family breakfast...well, maybe not if Rourke was eating ;). So, if you're ever ordering from the late night menu at Children's, I'd reccomend it and this slogan..."prepare to share."

Another benefit of this overnight visit is I'm hoping to get some time with a child life specialist tomorrow. Esther's hair is beginning to fall and she's worried about it. They have some resources to make it less scary and help her understand that it will come back. I am amazed at her femininity in all of it. Her biggest fear is that she'll look like a boy....that's another post.

My biggest question for the night is if since she woke up here and is going to bed here, will we get a bogo?

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Feeling Exiled

Let me get this out of the way. I hate this blog. I hate that it exists. I hate that we have to use it to communicate about what our lives have become over the past month. I hate what texting and social media have turned us into.

I say all this because the past month has gradually felt like an exile from our previous life. We have been overwhelmed by the outpouring of support our way and we feel more loved than we ever have. But, at the same, I feel more isolated than I ever have felt in a very long time. Esther has been in our home for 2 nights out of the last 19 days. I have had a quality evening with my wife maybe a few nights in that time. We haven't been to church in roughly a month. I had to give up on one big opportunity and my wife had to yield another. I used to see a close friend of mine at least once a week and now I haven't seen him in over a month. I feel on the run nearly all the time except for when I'm staying at the hospital.

I say all of this not to say people aren't pursuing us or checking in with us. I get constant texts or emails. It has nothing to do with our friends or family. Even seeing visitors throws me off now. Tonight we had a few special friends visit Esther and I in the hospital and it was so good to see them even for a short time. But, because of Esther's continued low ANC count (still only at 9.2 this morning), I was very hesitant to give them hugs or interact with our friends' kids and I just felt bad and awkward. It's very angering but I have no one to be angry at except God.

Today I even found myself questioning whether Esther actually had cancer. Really? She hasn't been sick! Just a bump on the head! Even this week she's felt pretty good. Maybe this whole "ANC count" thing is just a lie. We should go home and she'll be just fine...

I know this is all temporary but it doesn't feel like it. This is only round 1. Is Esther going to spend 2+ weeks in the hospital for every round (3 weeks) of chemo therapy? I talked to a coworker yesterday and he shared about his wife going through chemo awhile back. He said she tended to recover worse and worse after each successive round of chemo. What does that mean for Esther?

I feel frustrated and cut off. I am thankful for the tons of support but I feel shut off from genuine fellowship. My older kiddos are frustrated by their lack of time with me. I miss my wife. What's the point of all of this? I do not know and I may never know. This I know:

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!" (Luke 11:9-13)

Notice a few things here. Jesus is not saying here that just by asking you'll get whatever it is you're asking for or whatever you're seeking. The last part is key: "how much more will the heavenly Father give the Holy Spirit to those who ask him!" Wait, what? I asked for an egg or a fish! I didn't ask for the Holy Spirit! That flips these verses on their heads! What's the point of asking! I want the counts to go up! Enough people are praying, shouldn't you take that into consideration? We need to get Esther home! That's what we need right now!

And then it becomes clearer. What would my kids' lives look like if I gave them all exactly what they asked for every single time? It would be a disaster. They don't know better. They would destroy themselves. It would suck the life out of them and they would be miserable and then resentful of my wife and I.

So I need to admit something: I am not God. This world is not in my hands. That has become more clear than ever. God never sleeps or slumbers. I do. My wisdom is limited, his is not. My love is also limited and tainted by my own selfishness and sin. God's love is very clear and constant and proven by the Cross.

So I will choose to trust that this is exactly where he wants us to be. This situation is from him. I will breakdown and I will get mad at him, just like my kids do to me, but I will try to move on and trust my tender, patient, loving Father. I will be grateful to be able to update you all through this blog. I will be thankful for texting and social media. I don't like it but I will trust. And I will, in that perspective, slowly surrender to this temporary exile and receive the gift of the Holy Spirit that he offers.

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Low Counts

It looks like we'll be here for several more days. Yesterday Esther's ANC was 9.6, and this morning it was just 1.8. I think tonight Anthony and the kids will come down for a visit and then I will head back home to Ft. Collins.

Needless to say, this has been discouraging.

As a mom of 5 little ones I've often felt like the walls are closing in and the first part of Psalm 139 has been an ecouragement.

O Lord, you have searched me and known me!

2 You know when I sit down and when I rise up;

you discern my thoughts from afar.

3 You search out my path and my lying down

and are acquainted with all my ways.

4 Even before a word is on my tongue,

behold, O Lord, you know it altogether.

5 You hem me in, behind and before,

and lay your hand upon me.

6 Such knowledge is too wonderful for me;

it is high; I cannot attain it.

 

He knows. He has searched us. He knows my heart, He knows my kids, He has searched and knows Esther's body.

He sees that most of the day I am not sitting but am giving my day taking care of the kids, the house, the meals. He SEES this and KNOWS it. My labors do not go unnoticed by God.

Often I've felt in a fog, like I can't really understand my own emotions in the weariness of life. But God discerns my thoughts from afar...He knows what is truth, He knows what is a lie, He knows what is fear, pain, joy, thankfulness, anger.

He searches out MY path. Each of us have a different path and stiving to walk on someone else's path is not going to bring any fruit. We each have different paths and I've often looked to someone else's sidewalk and thought my feet would like to journey upon it. But God has searched out MY path, He knows what's at the end, He has gone ahead of me and sees the shaded beauty ahead of the desert thistles.

God knows my words before I do. He knows my thoughts, my fears, my anger, my dispair. He knows it before it hits my tongue. I can be R.E.A.L. with God and it's okay. He knows anyway. He says, come, little one, let's reason together, approach my throne with confidence. You are in a time of need and I have grace for you.

Often that grace is not found in what I think I need, but in a hemline, carefully stitched. He lays his hand upon me. God is tender, He lays His holy hand upon me. There are a few lines in The Mud Song (did you listen to it yet?) that speak of his touch.

isn't it just like you to invite me into a warm house
isn't it just like you to stroke my hair as I fall asleep

Father you made me yours
Found my orphan heart and brought it home
and I'm safe here and I sing

isn't it just like you to make a slave into your daughter
isn't it just like you to make wine out of dirty water

I used to live in chains
my wounds bled to the ground
my bed was out in the rain
my hair in knots and soaked in mud

but you took my hand
and you led me in
and you combed my hair
you kissed my skin
and you gave me food
and you made me yours
you made me yours
you made me yours

credits

from Reckless, released 15 August 2010
CCLI song # 5588794
Laura Elizabeth Thornton & Tim F Thornton (Bricklayer Music Publishing, ASCAP)

Psalm 139 goes on.

7 Where shall I go from your Spirit?

Or where shall I flee from your presence?

8 If I ascend to heaven, you are there!

If I make my bed in Sheol, you are there!

9 If I take the wings of the morning

and dwell in the uttermost parts of the sea,

10 even there your hand shall lead me,

and your right hand shall hold me.

11 If I say, “Surely the darkness shall cover me,

and the light about me be night,”

12 even the darkness is not dark to you;

the night is bright as the day,

for darkness is as light with you.

I can not flee from God, He is always there. He will be with me in the heavens, in the dark depths of Sheol, early in the morning, or in the uttermost parts of the heavy sea. In the joys, bumps, and dark places of our daily lives He will lead us, His right hand will hold us.

And this is not just on a cancer journey, this is on all of our journeys. He is there when your husband travels, when the baby just won't stop dropping the food or the kids spilled the milk again. He is there when your co-worker does't follow through and you get blamed and in the sting of harsh words from your teenager. He is there in the sunrise, when He's showing off, whispering "look at that purple." He is there when a job is lost or a night is not spent in slumber. When health fails and babies take their first step. He is there in all of it, in all of our lives.

We can not flee from this God, our ugliest, crimson stained sins do not even separate us from this God because He paid the price to make them white as wool, sparkling in the moonlight freshly fallen snow. Jesus came and died, an innocent man, because He loves me. He loves you.

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