In the Meantime

In a previous post, I talked about feeling exiled and isolated, like life has just come to a halt and we just got sidelined for awhile. I've been wrestling with especially watching Esther go through the treatment and circumstances get harder. Today, I realized our garage door is slowly breaking down, our washing machine is about toast, and, at some point today, our internet was down (when I was trying to work from home)! Those things are not really a big deal but when you've already had a stressful morning trying to give Esther her Neupugen, the kids are getting stir crazy, and you're feeling the weight of perfection when it comes to our germophopia to protect Esther, it all felt like this was the scenario for the invention of the phrase: WTF? I keep expecting our cars to breakdown or to get more bad news about Esther. This feels harder than anything I've ever experienced and we're only at the front end and I'm not even the one with the cancer! Just writing this blog post right before dinner I already feel drained and wiped and I can't even pin down exactly why.

But in this "exile," as I've been grappling with my anger and the point of all this and just trying to see God's face, I was encouraged yesterday and this morning by 2 things. The first is a key connection that a book helped me see. The second is a thought I had first thing this morning as I walked out to check on our chickens.

The Exiles of the Old Testament

I've been reading a book called "Wednesdays were Pretty Normal: A Boy, Cancer, and God" by Michael Kelley. It's about the author's own journey with his 2 year old son being diagnosed with Leukemia and the path thereafter. It's a very honest account from Mr. Kelley and it has started to help me wrestle with and process some of my internal world as so much of what he writes has resonated with me.

In chapter 9, he digs into the topic of hope. What do I really hope for during my child's cancer? For circumstances to get better? For heaven? Heaven is definitely something to look forward to and trust God for, but there's a problem with heaven:

You only go to heaven when you die.

The promise of heaven when we die doesn't mean this life won't be hard. So, seriously, what to hope for? What do we, with a child with cancer hope for in the meantime? In the weeks since Esther's cancer hit us like a hammer, we've realized that our lives will never be the same. There's no going back to before. If God brings Esther through this unscathed, we will still have that lingering fear of relapse, especially with her type of cancer. Even apart from that fear, we won't be the same as before for good or for bad. What will the normal Sam and I tend to hope for now even look like? When we will get there and be done with this exile? Well, Mr. Kelley brought me to 2 Kings 24:10-14, a situation that looked eerily familar:

At that time the servants of Nebuchadnezzar king of Babylon came up to Jerusalem, and the city was besieged. And Nebuchadnezzar king of Babylon came to the city while his servants were besieging it, and Jehoiachin the king of Judah gave himself up to the king of Babylon, himself and his mother and his servants and his officials and his palace officials. The king of Babylon took him prisoner in the eighth year of his reign and carried off all the treasures of the house of the LORD and the treasures of the king's house, and cut in pieces all the vessels of gold in the temple of the LORD, which Solomon king of Israel had made, as the LORD had foretold. He carried away all Jerusalem and all the officials and all the mighty men of valor, 10,000 captives, and all the craftsmen and the smiths. None remained, except the poorest people of the land. (2 Kings 24:10-14)

In this passage, most of Jerusalem is exiled to Babylon by Nebudchadnezzar. The nation of Judah would not completely fall quite yet, but it's leaders and city dwellers were taken away. Daniel and his friends were likely a part of this group of people. Jeremiah was a prophet to Judah at this time.

The people were just yanked from their lives and set down in Babylon. What were they supposed to do? What were they supposed to hope in? Return? Would it be the same if and when they got back? Not likely. They had to see the writing on the wall as they left. Nebuchadnezzar was in control now. Their city was barely intact, the temple still standing but with no protection and the city was in chaos. For them, the question really wasn't why they were there or who's sin had put them there. The questions were: Where is our hope? What do we do now? God knew their struggle and their wrestling and had a word for them through Jeremiah in chapter 29:

"For thus says the LORD: When seventy years are completed for Babylon, I will visit you, and I will fulfill to you my promise and bring you back to this place. For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope."

Strap in!

Read the whole passage. What does he promise? What does he tell them to do? He says I have good for you! I have plans for you! But he doesn't say necessarily what they wanted to hear...

Unfortunately, the rest of what he said wasn't quite as palatable. I wanted God's message to be something like this: "Hang in there; it's almost over. The meantime won't last long. I'm about to return everything you have lost, and pretty soon you can move into the future." But that's not what He said. God refused, both then and now, to give some pie-in-the sky version of hope that denies the pain of the present. He was real in His words. The word of the Lord reads something like this: "It's going to be seventy years of meantime, friends. It's going to be so long in the meantime that I advise you to get used to it. Settle down and make a life in the meantime. Build a house in the meantime because you are going to be there for a while. So strap in." (Wednesdays were Normal, pg 142)

God says the "meantime" is going to be awhile. He says to strap in. He doesn't give them a simple answer. He gives enough. Strap in and live in the meantime. Not in the past the way it used to be. Not in the future that you dread some days or look forward to unrealistically the next. Live in the now. I am with you. I have good for you. Right now. This was to be the exiles' hope. This needs to be my hope and my family's hope. Our situation is truly not that different than these exiles. They miss home. They probably forgot what the temple or their house looked like. We get discouraged because we forget what Esther looked like before she lost her hair. We miss what we had just 2 months ago.

But God has better. He always does. Jeremiah reassured me of this. God has reassured me of this. But not necessarily in our circumstances. Reading that passage from Jeremiah and thinking about it right now, it feels like a note straight from God to us. I love how he remembered the exiles in Babylon and just reached out to them to remind them he's for them and working for their good.

My second reminder this morning (though I struggled to heed it today!)? To worry about today. Not the past, not tomorrow or 6 months from now or 5 years from now. Today. His grace is enough for today. He has more for me tomorrow. But he's only given me what I need for right now. His future grace will be there for days to come. But every morning is a choice to trust him just for today. Today is enough.

Hope is the confidence that even during the meantime God is still busy. (Wednesdays were Normal, pg 146)

God is still busy in the meantime. He has not deserted us in the meantime. He is with us in the meantime. He is working in the meantime. Esther and our family are never far from his mind in the meantime. I pray we will trust that he has plans for us and a hope for us. I pray we will renew that trust every morning every day.

 

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Bubbling

It has been a quiet weekend at home.  First, Anthony got this video of Zinnia Thursday...pretty cute!

We played lots of drinking games to try to keep Esther hydrated and running smoothly...it seems constipation comes easily to her body and can make her really sick, so we need to be on top of her meds and hydration.  Her favorite game this week was watching our VBS video and taking a drink when we saw friends we know from church. 

Overall, she's felt pretty well, not too pukey, fever free, and happy.  It's so nice to be home.  I'm pretty sure she'll have bloodwork done on Tuesday to check her counts, but they might let us wait until Thursday.  She is looking a little pale and has been sleeping a lot, so I'm a little worried her hemoglobin is low and may need a blood transfusion.  She needed two the last round, so it's likely she'll need another.

I feel some emotion bubbling under the surface.  It's hard to define.  Hopeful dread?  Every family I've met at Children's is coming for treatment because they've had a relapse.  We wanted to stay away from knowing much about the long term prognosis for neuroblastoma, but it's unavoidable because the ugliest part of this cancer is that it often comes back.  I'm trying to not look to the future, seek grace for today and for the most part have been successful in not predicting Esther's future in this life.  But it's hard, when I teeter down that path and meet yet another family who is fighting their 3rd or 4th battle with this disease, I shut down.  It's more than I can bear. 

I am comforted that her eternity will not include disease and pain.  My honest fear is that she will suffer and lose the battle with this disease.  I want to hope and find God's goodness in it all regardless of Esther's journey.  I don't know His plan and question. But I know the character of God.  God is love.  God is kind and good.  So are His plans. A friend sent me a link to a song by Mercy Me, "The Hurt & The Healer"
I posted it at the end if you'd like to listen. 

Why?
The question that is never far away
But healing doesn't come from the explained
Jesus, please don't let this go in vain
You're all I have, all that remains

So here I am, what's left of me
When glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into your arms open wide
When the hurt and the healer collide

Please pray for our hearts.  Anthony misses Esther.  He stayed home from church today so he could get some time with her.  We've been short with each other and the kids.  My heart is numb, tired.  I feel emotions bubbling, but they seem so far off.  The song continues...

Breathe
Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord, take hold and pull me through

I can't do this.  I can't muster up faith or trust.  This can only happen when my eyes are not fixed on the doctors, the treatment plan, journeys that belong to other kids, or my own desire for Esther's life.  For my family's life.  I miss being mommy.  It breaks my heart that instead of teaching Esther to greet people at church, to look in their eyes and say good morning, I am teaching her to tell her nurses and doctors thank you, to greet them when she knows they may have to do something that will cause her pain.  I have to teach her not to scream when a needle is near, that those times when the numbing cream had worn off or the ER nurse had to poke her twice don't happen every time.  That she doesn't have to be terrified of a bath because the aquaguard is going to tear her fragile skin only to be met moments later by alcohol because a dressing must be changed.  She used to love taking baths, now she is terrified of just a few seconds in a gentle shower.  

Please, Jesus, keep my eyes fixed on you.  I need Him to hold me up and pull me through because this journey is unbearable.  I pray the rest of this song would be my hope, not in this life.  Esther's hope is not in this life or in her survival, this is a temporary dwelling.  Our home is not on this earth, our happiness and satisfaction will not be found here even in the best of circumstances.

It's the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood

When mercy takes it's rightful place
And all these questions fade away
When out of weakness we must bow
And hear you say "It's over now"

Lord, would you please give me the grace, pour mercy over my heart, that I would bow and bless your name when you say about this journey, this life, "It's over now" regardless of Esther's future.  The song finishes with a plea...  

Jesus come and break my fear
Awake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide 

Sunflowers

On the morning drive we pass a field of sunflowers. The rising sun and eager faces of the yellow blooms make me smile. I look forward to reaching the end of 470 where we exit onto Pena, not so much because we're only a few miles away from the hospital but because of this cheerful field of sunshine.

 

Today our soundtrack for the drive was our friend, Katrina's lovely melodies. As I stopped to take this photo, her song, "Swim" started to play.

The chorus says, "I can't see a sunrise in the middle of a hurricane. And I can't hear the symphony amidst the thunder and the rain. Yeah, life don't get no easier if I pout and I complain. So I'm jumpin' in I'm ready to swim."

I'm thankful that God speaks louder than hurricanes, thunder and rain and His voice this week has been a field of sunflowers. Right now in a time of no control, our attitude is just about all we can control. It won't be easier if I pout or complain, worry or fret.

Thinking about these sunflowers, I was reminded of Luke 12: 24-31. "Consider the ravens: they neither sow nor reap, they have neither storehouse nor barn, and yet God feeds them. Of how much more value are you than the birds! 25 And which of you by being anxious can add a single hour to his span of life? 26 If then you are not able to do as small a thing as that, why are you anxious about the rest? 27 Consider the lilies, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. 28 But if God so clothes the grass, which is alive in the field today, and tomorrow is thrown into the oven, how much more will he clothe you, O you of little faith! 29 And do not seek what you are to eat and what you are to drink, nor be worried. 30 For all the nations of the world seek after these things, and your Father knows that you need them. 31 Instead, seek his kingdom, and these things will be added to you."

The weight of the "need" is different. In this passage, it's more about material things, food & clothes. But the principle is the still the same. I love where it says "your Father knows that you need them." He knows our needs. Whether or not I needed that cheerful field of flowers to help me remember He is still there, I can't say. But it was a tender mercy on our morning drives, and this passage is an enouragement that the Father knows my needs.

Yesterday was a fun day with Lydia. We princess-uped our infusion room with tons of glitter from princess coloring pages. I was impressed not to find glitter this morning in the room. Lydia's suprise was a Calico Critters lamb family and her imagination was fun for Esther. The mouse and lamb families went swimming, swung on a tree swing, and picked flowers in a field. So sweet. Zinnia also got an elephant family and all four girls were delighted to play mouse, bunny, lamb, and elephant families last night.

 

Our nurse was awesome and FAST today. We were done in 5 hours flat. Tomorrow begins the medication to prepare for stem cell harvest. Esther will have a daily dose of a growth factor that will cause her body to create lots of stem cells and release them into her bloodstream. We have to give this through a shot, but tomorrow at our short visit at the hospital they will place a small cathedar (sounds scary, but it's pretty minor) into her leg and then there will be no pokes for her shots. She'll be monitored pretty closely because they need to catch the number of stem cells at thier peak level to get as many stem cells as possible. This will hopefully happen in about 10 days or so.

Esther is tired today and the effects of the week of chemo have increased her nausea. She took a long nap today (actually is still sleeping), so I hope this helps her feel better this weekend. We were the first patient in the infusion center, so she got her pick of the toys in the toy room. I like to be there early...I know they are clean! It was fun for her to pedal this big, heavy car around the clinic.

My attitude is important, "life won't get no easier if I pout and complain." God is kind. He knows our needs and this week He gave us safe drives, beautiful sunflowers to brighten our mornings, and a reminder that He knows.

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More than half way through round 2

Frannie joined us for chemo today. Everything went smoothly and Esther only threw up once after dinner. Sadly the iPad was also needing to be charged, so I don't have any cute pictures to post. Frannie was pretty excited to get a bunny family that matches Esther's mouse family from her Gabby's Bag. They snuggled to watch some TV, rolled up the tissue paper from Frannie's surprise and tossed it back and forth like a ball, and of course, played Calico Critters.


We also enjoyed visits from Emily, Thomas' mom and Uncle Booie had a meeting nearby and was able to stop by for a bit.

Esther was running around the house tonight with her siblings, dancing in the living room, and has been eating great (aside from throwing up once tonight). It has been a blessing to be home even if it makes for a long drive.

Tomorrow Lydia will join us and I get to learn about giving shots and do some practice on a teaching doll. I wonder if I should use down time at the hospital to take some online courses. There has to be some medical degree to go along with all of this, right?

We only have two more days of chemo! Praying to be peaceful if we are admitted again for a fever, for her counts to not drop so low this next round, and for her to drink enough fluids. We have a long way to go on this treatment plan and I'm already so over the drinking battle. Please pray I would be patient and discerning when to push and when to hold back. Sometimes if she drinks it makes her vomit...then she's afraid to drink. It's also a control issue and seems very grey to know how to parent under these circumstances.

We are doing ok. Feeling like we're right in the middle of coming to an understanding of the length and intensity of this journey. I feel like that might not be the point, though. We can't really anticipate this journey or understand the depth by which we will all change and it won't be neat and tidy at the end of this next year. The impact of this on all our lives will be vast. I just want to know how much this with change us, i want to control it. Ephesians 3:16-21 came to mind as I am writing this,

16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge —that you may be filled to the measure of all the fullness of God.

20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

This journey is not about the depth and width of the impact on our lives. It is not about gutting it through the next year and making it out okay. God is never purposeless in our lives, there is a reason he walks us through joy, sorrow, struggle, pain. Although it does not feel like it at times, there is love that surpasses our ability to understand amongst our journey. Through this we want to know Christ's love deeper, to trust the God who is able, who has power. He will strengthen us to know the length, height, and depth of His love.

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Rourke & Esther

Rourke joined us at the hospital today. When we checked in the secretary said, "You must be Rourke." We were both surprised she knew his name. It's nice to be in a clinic where the staff makes efforts to know more than the patient's medical needs. He felt very special! Overall it was a good day, chemo was timely today with no vomit.

Rourke did a great job and was so kind to Esther. God has given him a tender heart. He was flexible and sacrificially yielded to her in their play. We wanted to do something special for each of the kids, so I brought a gift all wrapped up. He even carried it in the hospital. He asked what it was, and I told him he just had to wait. He assumed it was for Esther. I told him and daddy and I know this has been hard for him too and that because we love him so much, we wanted to bless him with the gift. He was so sweet and asked, "This is for me?!" His face when he opened the new lego set was priceless.

I'm so glad he was with me. I struggled today, feeling just sad and worn out. He was a cheerful addition to our chemo day. I intended to do school, but they were enjoying each other so much, I wanted them to just play. I think Esther was pretty excited about having a day just with his brother, what do you think?

 

 

Yep, she loves him!

 

Yep, she loves him!

 

Yep, she loves him!

They moved over to the bed by the window to watch the cranes and use the window sill as a roadway. They even scored some Colorado Rockie's hats!

 

The drive home has been a nice time for Esther to nap a bit. Rourke didn't sleep long this way, but got a nap after an early morning.

 

 

 

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House of God, Forever

This weekend was great. It felt like a vacation to be at home for 5 full days! On Sunday we all went to breakfast with my parents and then to church and then out to lunch. I was worried about being in so many public places. Anthony reminded me we'll be on lockdown for the next couple weeks, so we should take advantage.

Later Sunday afternoon we had a great showing of help to rearrange our kids' bedrooms. They moved a twin over full bunk bed to the basement, a twin bed along with it's trundle upstairs, and Rourke's loft bed was moved over to the girls' room. The strong muscles and expert bed makers made the process go quickly. The end goal was to give Esther her own space for this next year. The kids were such troopers and understood the need for all the change.

Today Esther started her second round of chemo. She'll have an infusion starting at 7:30am each day for the rest of this week. On Saturday morning she'll start a growth factor med causing stem cell production and release into her blood stream. Those meds will continue the following two weeks until her stem cell production peaks and then they will extract her stems cells, filtering out her red and white blood cells along with her platelets. Those cells will be returned to her body and the stem cells will be stored to help her recover after the MIBG therapy and again following high dose chemo in December.

It was overall a good day. She handled chemo well and only got sick once. I think it was because her anti-nausea meds lapsed a couple of hours due to of a dosing issue. She lost a little weight and they had to re-dose her chemo and meds. It's not a huge loss, she was just 0.1kg under the previous dosing requirements but our doctor thought going with the lower dose might help her counts not drop so low after this next round of chemo and it's appropriate for her weight either way. I like Dr. Garrington, he's kind and Esther loves him. He had her giggling and playing peek-a-boo. Her ANC counts today were phenomenal, 6,111. I am thankful she's so high right now and hopeful these counts will give some wiggle room during this cycle.

Our friend, Thomas, is also recieving a 5 day treatment this week. He along with two cousins and another friend from our homeschool group are taking a logic course right there in the infusion center. Their instructor, Thomas' mom, Emily, is doing an excellent job! When they left, these four teens were growing lots of brain cells from all the learning they did. Tomorrow Rourke is going to join Esther and I and we're going to do a little school of our own. Lydia and Frannie will also get a turn to join us. What a fun and strange circumstance that something so normal to our lives, school, is happening in an oncology clinic.

We are planning to do this week of chemo outpatient and will drive down each day. Since it is likely she'll be admitted again at some point over the next three weeks, we are savoring each possible moment at home.

A friend from church whose daughter had leukemia when she was about the same age as Esther said as she walked through the halls of the hospital they were at she thought of Psalm 23 "Though I walk through the valley of the shadow of death, I will fear no evil." We sung a song at church that is based on the this Psalm "House of God, Forever." It's a beautiful, hopeful song and accompanied me throughout the day as we walked out of the hosptial the line "Surely goodness, will follow me" sprung into mind. A sweet reminder fromt the Lord that He is right there with me. You can read the lyrics and listen below.

 

House of God, Forever by Jon Foreman

God is my shepherd

I won't be wanting

I won't be wanting

He makes me rest

In fields of green

With quite streams

Even though I walk

Through the valley

Of death and dying

I will not fear

'Cause you are with me

You are with me

Your shepherd staff

Comforts me

You are my feast

In the presence of enemy

Surely goodness

Follow me

Follow me

In the house of God, forever

 

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Accomplishments & Generous Children

Today felt like a huge milestone.  We had our final check up before our next round of chemo and everything looked great.  Esther has completed the first of six rounds of the first part of her chemotherapy. 

I am a box checker and it felt great to check a box.  In many ways I remember back and am blown away that Esther was diagnosed less than a month ago.  She only started chemo 3 weeks ago, it feels like a year.  However, when I walked away from the hospital today I was encouraged.  I wanted to find someone to high five and shout, "We made it!"

Although there is a lot ahead, but just making it through the last month feels like I've survived a hurricane.  I honestly feel like it's a miracle to be alive.  One of the first passages someone ever shared with me after I gave my life to Christ in 1999 is Isaiah 43: 1-4


But now thus says the Lord,
he who created you, O Jacob,
    he who formed you, O Israel:
“Fear not, for I have redeemed you;
I have called you by name, you are mine.

² When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.

³ For I am the Lord your God,
    the Holy One of Israel, your Savior.
I give Egypt as your ransom,
    Cush and Seba in exchange for you.

⁴ Because you are precious in my eyes,
    and honored, and I love you,


A friend whose child is going through treatment described to me feeling like waves just pounding her against a rock, but she doesn't drown.  Somehow she is still holding as the water pulls back from the rock.  I totally understand what she's saying.

We're only surviving those waves because God created us, redeemed us, called us by name.  I belong to Christ, I am his.  He will be with me when the current is violent, when the fire is more than I can bear.  He is My God.  He gave Christ in exchange for me.  I am precious to Him and He loves me.  He loves Esther.  He loves Rourke, Lydia, Frannie & Zinnia.  He has created all of us and His love is limitless.

I can say that I walked out of Children's Hospital today encouraged only because of God's grace.  Everything seemed to go wrong, my tied up with a bow, easy cancer journey did not play out the way I wanted.  I've never felt so out of control or paralyzed.  It is not because we are so amazing we can shake the water out of our hair and rub the salt from our eyes when the wave shrinks away, it's because God has promised that we won't drown, we won't be burned. This is His grace in our lives.

Esther's day in the clinic was full of sweet treats.  The hospital does a program called "Beads of Courage."  Each bead represents a different peg on their journey, hospital stays, surgery, tests, chemo days, fevers, neutropenia, losing her hair.  As she laid on the bed and strung her beads it was such a visual for me that we survived all of that.  It's already a necklace, a journey, far to long for a little girl.  But as she finished stringing the beads and I tied it up, I realized, we made it through all of this.  All of it.  The beads were far more therapeutic for me than her. 

She also received a bag the Oncology staff called "Gabby's Bag."  It is a HUGE backpack that was stuffed full of toys and activities that are perfect for hospital stays.  The program is called Bags of Fun.  It was started by a 6 year old cancer patient who wanted to give something to kids like here.  The bags are all age appropriate and gender themed.  Gabby lost her battle with cancer but has left a sweet legacy for children like her. Esther's bag has lacing dolls, block puzzles, little mouse figures, a bubble maker, a book to paint, a DVD and portable DVD player, blocks and more.  I was speechless by the perfect items in the bag and when Dr. Amy told us about Gabby I had to sit down.
 
I heard another story a few months ago about a girl who used her Make A Wish money to create "Joy Jars."  She wanted to give something to kids in the hospital who were sick like her, something to bring them joy.  She stuffed each jar during her final months of life and they were delivered to children in several hospitals in the US. 

Oh that we would be so generous!  So many of you have delivered us backpacks and joy jars.  Thank you for being hands and feet to hold us up, to bear our burdens when the waves are strong and the fire is too hot to bear.  Such a grace, such a gift.

Rourke, Lydia, Frannie & Zinnia spent the day with Aunt Lexi and Connor.  They had such a fun time together.  I think I want to make them their own Bags of Fun, make them their own necklaces.  They've handled this struggle so courageously, they're enduring hardship too.   

The plan for next week is to begin treatment at 7:30am each day.  She'll have 5 days of chemo and about two weeks to recover.  During that third week before she begins her next round of chemo she'll have her stem cells extracted.  This is still so unbelievable to me, that we can extract someone's own stem cells and use them to rescue their body out of trauma.  God designed this and knows us far more intricately, we are only at the tip of his understanding.