One *new* Day At A Time

We had the same day time nurse for the last 4 out of 5 days.  He was great!  Yesterday as he was leaving for the day, his last day before a mini vacation, I felt like telling him how thankful we were for his care and that it was so nice to meet him.  We did express a lot of gratitude, but when he said, "Have a good night and I'll be seeing you around," I nearly had a panic attack.

Yes, Esther's cancer treatment will be somewhere around a year.  I know this, but it just hasn't been real.  Our nurse knows our journey, he knows it will be long and that we'll see him again.  I just can't wrap my mind around this reality.  It feels so unreal.  Last night I went to bed, fighting tears.  I have been really just living one day at a time, but the gravity of the coming months of treatment is overwhelming.  Living one day at a time is good...pretty sure there's a Bible verse about worry that's pertinent here. I took some deep breaths and succumbed to my utter exhaustion.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

In the night Esther woke up afraid and hurting a bit.  She asked me to cuddle with her, she held me tight and I slept with her for a couple of hours.  This was a gift to my soul.  She's been a bit standoffish toward me and it's been hard.  At a time when all I want to do is hold her and try to shield her from any more pain, she hasn't wanted me all that much.

We woke up and skipped breakfast because Esther's MIBG scan was at 9am and she needed to be sedated to be still for the imaging.  This scan was to find any other hidden cancer cells and determine if her cells take up the agent that will be used in her MIBG therapy next fall.  Ten percent of the time neuroblastoma cells don't take up the radioactive dye.  The scan was a bit frustrating.  There is a nation wide shortage of a drug they use to sedate children without putting them under general anesthesia, so Esther had to go under general anesthesia.  She has not handled this well, waking up very nauseous.  I just didn't want to add another variable to make her sick.  The scan took an over an hour longer than we anticipated and ended with a difficult interaction with a nurse and Esther was hysterical when she woke up.  Because today was the 4th of July, the scan won't be read until tomorrow.  However, because the nurse made me worry, we asked the in house oncologist covering the inpatient kids take a look.  Her cells did take up the dye (that's good) and there wasn't anything majorly alarming, a couple of other areas that may have cells, but it's best left to a radiologist to read.  All in all, it's not a huge concern.  The purpose is to find every hidden cancer cell we can possibly find.  Sounds a bit Jehu-like, no?

When we got back to our room Esther ate a little bit and started her 5th day of chemo.   She did well, enjoyed a visit from Aunt Margarita and Uncle Wayne.  The chemo is doing it's job.  On Tuesday her uric acid levels were high...this is good and bad.  Good because that's evidence that the cells are dying bad, because it's hard on the kidneys.  They were able to lower the levels with some meds and extra fluids.  The bump on her head is quite a bit smaller already.  Praise God!

We packed up our hospital room.  Thank you for all of the cards.  They are so sweet and an encouragement to us and the hospital staff that entered our room.  Esther loves her new snuggley friends.

We took our giant bag of medicine and hit the road.  Esther and I headed to my parent's house and Anthony and the other four kids are at home in Fort Collins tonight.  Tomorrow Esther has a check up in the oncology clinic and a shot to help her body build new white blood cells.

Pray for all of us to stay healthy in between chemo treatments and for us to give each other a lot of grace as we learn to navigate the new reality of our life.  Pray we'd take one day at a time in our new reality and give over those anxieties.  I found myself singing a song from one of our Seeds Family Worship CDs.  They are awesome, we highly reccomend them.

"Do not be anxious about anything.  But in everything, by prayer and petition with thanksgiving submit your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7

You Get to Drink From the Fire-Hose!

Yes, a firehose to the face roughly describes our day! We met for over 2 hours with a teaching nurse going through the ins and outs of caring for Esther when we get home, dealing with and watching for low blood counts, watching for signs of infection, and protecting Esther during those next 7-10 days where she'll be especially vulnerable to illness. We then picked up all of her medications that we'll take home with us, trying to keep track of which is for what issue and when to take them and for how long. We're ready to be out of here and home but it's a lot to take in and we didn't even dig into diet too much.

Esther had another great day with an increased appetite eating a good breakfast and even a little bit of dinner! The Phenergan is proving to be a key part of the recipe to helping her nausea. She got to spend some quality time with her Manga (Sam's mom) and her big brother while we were learning more about caring for her. She also got to see her Auntie Margarita, and Uncle Booey and Aunt Lexi right before bedtime. Tomorrow we'll have the MIBG test at 9am and then one more session of chemo before we should be able to take her home (to Manga's tomorrow night). The MIBG test will pinpoint the location of the neuroblastoma even more accurately and finalize whether the actual MIBG therapy will work for her.

Speaking of MIBG, we put in our preference for that treatment (likely in November) to go to Cincinnati. We've had multiple offers of places to stay there and the hospital is newer and very family friendly. It is likely the best location where we can have our kiddos very nearby and yet be rotating in helping Esther during that crazy 3-5 days prior to her radiation levels dropping. But we likely won't know for a little while still if we get our preference or get sent instead to San Fran, Ann Arbor, or Philly.

As I reflect on the past week here as we get ready to go home, I am amazed at how God is able to fill your weaknesses and how much peace he has stored up to give you. People have told us they can't imagine what we're going through right now but there are times already where it just feels normal. Stresses push on every side but even in the severity of the trial, we have felt peace and we have generally felt encouraged. Yes, there are times when it has felt like hell. But we have had plenty of laughter as well. Our older 4 have hung in there as well as can be expected and then some with their Manga and Papa and Auntie Margarita really just lavishing love on them as we get all this as figured out as we can.

As I've read the comments on our blog, on Facebook, and in emails from folks praising our faith and expressing amazement at our attitude, I've been surprised and wondered if we are being real in our blog posts. Is our faith really that solid? It doesn't feel that way much of the time. I feel God's tender hand on us at times and then at other moments I just feel overwhelmed and anxious. We've been praying but it's not like we've been anymore faithful in our relationship with Jesus, just more desperate!

Honestly, God has been so gracious throughout the past two weeks. Our support through the people and family he has given us has been such a boost. Esther has been such a gift. The side effects so far have been minimal (this is just the beginning!) and you could not ask for her to be more trusting. But God has been so faithful. There have been so many moments of panic, loneliness, hurt, worry, anger, discouragement, confusion, and that sunken feeling in the pit of your stomach, but every single time, I have felt God restore his peace to us very quickly. God has made it difficult to stay discouraged for too long.

And all of you have also made it difficult to stay too discouraged for very long as well. Thank you.

 

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Come Now, Little One

I remember when I first began a relationship with the Lord and was just reading the Bible for the first time I was so horrified by the way the Israelites just couldn't remember what God had done for them. I remember sharing at a Bible study that I just couldn't imagine forgetting thinking that I was so much better than the Isrealites.

Well, 13 years later, I am such an Israelite. I need constant reminders. Thankfully, God knows this and in His kindness, gives them to me. He reminded me tonight that He does hear me. I was reading the One Year Bible in 2 Kings when God heard Hezekiah when he was sick. Hezekiah was about to die, he was ill. Isaiah came to tell him he was going to die and Hezekiah "wept bitterly" and had a conversation with God. God was tender to Hezekiah.

...I have heard your prayer, I have seen your tears. Behold, I will heal you. ... 2 Kings 20:5

What a kind reminder from the Lord. He heard Hezekiah's prayers, He saw his tears. He hears me, He sees my tears. And Psalm 56:8 says, "You have kept count of my tossings; put my tears in your bottle. Are they not in your book?" He hears you, He sees your tears.

Today was a good day for Esther. We tried a new med to help her nausea and it worked, she did not throw up once. I could tell she wasn't feeling great, but a chemo day without vomit is a good day. She didn't eat much at all, but that is normal and as I'm learning, okay, she just gets to eat lots of bacon and they even suggested giving her half & half to make up for the calories this week. The doctor today did mention that she needs to display more signs of taking in enough fluids before they'll let her go home on Wednesday, so please pray for that. We took walks around the floor, went down to the ball machine in the lobby and took a wagon ride around the hospital. It was nice to see her walking around a bit.

As I've become a mother I've seen the character of God more and more. When a newborn baby is fussing because you're changing his diaper, he is only aware that he is naked and ticked off that you keep bending him in half and wiping his behind with a cold thing. He yells & screams. That clean diaper is good for him.

Esther doesn't feel all that well, threw up the two days before, and is being pumped full of liquids. She doesn't really want to drink anything because she might throw it up and she doesn't feel all that thristy, so why does her mom keep telling her to take a drink. She was pretty annoyed and cranky with me. This has been fairly true of this whole journey, it's been hard to take.

How often do we scream like a newborn and tell God "no" in a sassy three year old voice? He is good, He knows. Clean diapers and drinking liquids are good things but our circumstances decieve us into believing it's all wrong and we're righted to a bad attitude. I'm thankful for the reminder that I've thrown fits and sassed God plent of times, but His love is bigger than my attitude and His goodness transcends all circumstance.

One of my life verses is Isaiah 1:18, "Come now, let us reason together, says the Lord; though your sins are like scarlet, they shall be as white as snow; though they are red like crimson, they shall become like wool."

I love this verse because of the imagery of snow, freshly fallen and sparkling in the moonlight. That God changes my scarlet into such dazzling beauty. But what has been encouraging me most recently is "Come now, let us reason together." God wants to reason with me, he says to me, "Come here, little one, let me show you. I know you don't get this, let's reason it out together."

What a patient Lord who sees all of my circumstances and Hebrews 4:15 tells us that "We do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are yet without sin. Let us then, with confidence, draw near to the throne of grace, that we may receive mercy and find grace to help in time of need."

God wants relationship with us, he wants to reason together, welcomes us at his throne. He wants to reveal His goodness, He listens to us and sees our tears.

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Hospital Perk

One great thing about the hospital is the ice. I love munching on ice and here I have an unlimited supply of soft, barrel ice. We've been trading nights staying with Esther, one of us going to my parents to be with the kids. Tonight we're having a hospital date in our new room with a view of city lights.

Esther was moved to a new room that is more chemo friendly. She did pretty much the same as yesterday, lots of fluids and getting sick. We're on the track to finding out what nausea meds will help her keep food down. We'll see...I'm sure by the time we figure out what works for these specific chemo drugs, it will be a new game for the next combination. Isn't that how a lot of parenting goes? Right you when figure it out, it all changes!

Tonight we tried a new visit with the other kids...they came to the hospital in their PJs and Anthony read to them from the Bible and continued their adventures in The Chronicles of Narnia, The Horse and His Boy. These kids have an awesome dad and I know they are learning so much about the Father from his love.

The next couple of days will be more chemo and lots of education for us. Thank you again for all of your love and support, we are tremendously grateful. It really does help.

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A Reminder as the Next Year of Our Life Begins

Esther napping after a little bit of an upset stomach

Today was both a very eventful day and yet a relatively uneventful day as well. It was the first day of chemo of the first cycle of the next year of Esther's life.

She started with 2 hours of fluids to help keep her urinating and thereby protecting her bladder from everything flushing out of her system. It's amazing how much hydration is important in this process of chemo treatment for her!

After the hydration, then came the chemo. It was a half an hour of cytoxan followed by a half hour of topotecan. An hour and just like that, the treatment had started. Then came another 2 hours of hydration.

The biggest thing was keeping her going potty to clear her system and then just watching how her system responds. She did great. She got nauseous towards the tail end of the day but she was given some Benadryl to help settle her stomach and she proceeded to take a nice, long nap (as cute picture included illustrates!).

Overall, it was a pretty low key first day of chemo filled with a few encouraging visitors. It was a day that again illustrated what courage, patience, and endurance, God has gifted this little princess with. She got a little irritable after she threw up twice, but I can assure you that I would have acted much more miserable and needy than she has. She threw up again later but is in good spirits as she drifts off to sleep.

Thank you for your continued prayers on ours and Esther's behalf. We continue to just be blown away by the love and support of those around us. We are extremely grateful!

Today I finished the book of 2 Kings and was intrigued again by thoroughness of a leader. This time it was King Josiah who rediscovered the Word of God and tried to reset how Israel had just forgotten about God. Be patient with me here, this all leads back again to what's happening with Esther!

And the king [Josiah] commanded Hilkiah the high priest and the priests of the second order and the keepers of the threshold to bring out of the temple of the LORD all the vessels made for Baal, for Asherah, and for all the host of heaven. He burned them outside Jerusalem in the fields of the Kidron and carried their ashes to Bethel. (2 Kings 23:4)

You can read the rest of the chapter where Josiah does his best to lead Israel back into relationship with God but the key for me was later...

And the king commanded all the people, "Keep the Passover to the LORD your God, as it is written in this Book of the Covenant." For no such Passover had been kept since the days of the judges who judged Israel, or during all the days of the kings of Israel or of the kings of Judah. But in the eighteenth year of King Josiah this Passover was kept to the LORD in Jerusalem.

It's wild how you can look at how what Josiah did in trying to wipe slate clean, even what Jehu did, but how that's not enough. They were still missing something. Even Jehu still worshipped false gods after he wiped out the Baal worship. Even great kings like David, Solomon, and Hezekiah forgot something and it might have been something the contributed to their nation just falling apart. David knew God and knew his forgiveness but still neglected even this... The Passover.

Not a big deal you say? What Israel & Judah did in forgetting the Passover would be like us neglecting the 4th of July for hundreds of years! The 4th of July is a huge holiday of remembrance! It calls us to remember why we are a nation. It reminds us of our freedom! Better than that, it's our nation's birthday! The Passover is practically the same. Except, it was also to remind them of where that freedom and birth came from:

And when you come to the land that the LORD will give you, as he has promised, you shall keep this service. And when your children say to you, 'What do you mean by this service?' you shall say, 'It is the sacrifice of the LORD's Passover, for he passed over the houses of the people of Israel in Egypt, when he struck the Egyptians but spared our houses.'" And the people bowed their heads and worshiped.

The Passover was to remind them who gave them their freedom after 430 years in slavery. It was to remind them that God loved them. They were no more deserving than the Egyptians yet God spared them. All the kings prior to Josiah forgot this. They forgot who brought them into the land, who rescued them and freed them. At the very least, they didn't celebrate it and their gratitude diminished.

2 Kings 23 tells me that Esther's healing is not the most important thing. Her suffering is going to be hard. Today when her stomach was visibly bothering her and she was becoming irritable, it was very hard to watch. You just ached for her. But her suffering is not the worst thing in the world. If God wipes out the cancer in her body like Jehu wiped out the system of Baal and Josiah restored the kingdom to God, and yet we then move on as if God doesn't exist, we miss the issue of real importance. If God only exists to us when we're hurting, we're missing it.

For I delivered to you as of first importance what I also received: that Christ died for our sins in accordance with the Scriptures, that he was buried, that he was raised on the third day in accordance with the Scriptures, (Paul in 1 Corinthians 15:3-4)

I hate what Esther is going through and what she is going to have to endure. It's dreadful. It makes my stomach knot up. It gives me moments of panic. But in all her suffering, and even if she loses this battle, it's not the worst thing. What's much much worse is being separated from God. What's worse is trying to do this life on your own apart from Him. What's worse is not knowing the enduring joy that Christ has for you. What's worse is not walking in the freedom that God has provided through His Son's death on the cross. Don't receive this as a condemnation. Honestly, I just want you to have what we have. And 2 Kings 23 reminded me of how easily I forget how amazing it is that God came to us as man, walked in our shoes, and died a horrible death for my freedom, so that I could be with him and know him. That's no small thing.

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?

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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.

 

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Some Good News and the Intense Road Ahead

Our kiddos this evening in Esther's room at Children's

Today we were able to see the results of the past two days of testing and we received decent news. The source tumor is, as the doctors expected, on her right adrenal gland and is about 5x7cm in size. Yes, that is probably just a little smaller than a baseball! However, they saw no other tumors nor much activity elsewhere. This means that while she is still a very dangerous stage IV, there is simply the source tumor on her adrenal gland, the tumor in her skull, and very trace amounts in her bone marrow. A stage IV could be much much worse than this for sure, especially given that her blood analysis was clean and that she has had no symptoms other than the bump on her head. The bump on her head is very much proving to be a grace straight from the tender hand of God. There's no other way we would have known until even later!

Judge not the Lord by feeble sense,

But trust Him for His grace;

Behind a frowning providence

He hides a smiling face. (William Cowper, "God Moves in a Mysterious Way")

This good news does not mean the treatment will be any less intense though. We met with the oncologists later in the day for about an hour discussing the treatment. It includes an initial 6 cycles (5 days each) of chemo followed by a month in the hospital for Esther while doing a high dose chemo phase, then 2 weeks of radiation (honed in on the source tumor location), and then 6 months of "maintenance" chemo and immunotherapy. It all adds up to about a year of treatment.

There is one nuance they want to add though to the initial 6 cycles. It is called MIBG therapy. It is specific to fighting neuroblastoma and has shown to be promising when applied in recurrence situations. With neuroblastoma, the big fear is indeed the recurrence. If recurrence happens, chemo will not work because the neuroblastoma will be immune to it the second time around. What the doctors proposed to us today is to introduce the MIBG therapy after the first 4 cycles. After 4 cycles, Esther would have the source tumor surgically removed and then move to the MIBG therapy when recovered.

But there are two key things to note about MIBG therapy. First, it has to do with applying specific radiation in the system that is unique to neuroblastoma. MIBG is an agent connected with neuroblastoma, so you attack it and you can attack the cancer. But the radiation is such that it limits your contact (while wearing specific clothing) with your child for upwards of 2 weeks while they stay in a lead reinforced room (but looks like a standard nicer hospital room). Sounds scary but in researching it, parents have stated that boredom is the hard part. Second, there are only 4 hospitals in the country currently equipped to handle this: San Francisco, Cincinnati, Ann Arbor, and Philadelphia. Each of the doctors was heavily in favor of this treatment though, including one who started in Philadelphia where the therapy was pioneered.

The treatment proposed is intense. MIBG makes it even more intense. But it's designed to absolutely weed out the neuroblastoma so it doesn't come back. It's like if we knew Osama Bin Laden (while still alive) was in Fort Collins and we sent in the entire combined armies of the rest of the world to find and kill him and completely wipe out his associates with him. It was wild processing the treatment plan later with Sam as she reminded me what I read and prayed that morning: that the cancer in Esther's system would be eradicated with a Jehu-like thoroughness.

Then Jehu went into the house of Baal with Jehonadab the son of Rechab, and he said to the worshipers of Baal, "Search, and see that there is no servant of the LORD here among you, but only the worshipers of Baal."

Then they went in to offer sacrifices and burnt offerings. Now Jehu had stationed eighty men outside and said, "The man who allows any of those whom I give into your hands to escape shall forfeit his life." So as soon as he had made an end of offering the burnt offering, Jehu said to the guard and to the officers, "Go in and strike them down; let not a man escape." So when they put them to the sword, the guard and the officers cast them out and went into the inner room of the house of Baal, and they brought out the pillar that was in the house of Baal and burned it. And they demolished the pillar of Baal, and demolished the house of Baal, and made it a latrine to this day.

Thus Jehu wiped out Baal from Israel. (2 Kings 10:23-28)

Baal was a worthless fake god of Israel's in which part of the Baal system of belief was to sacrifice infants along with other despicable acts. This system was particularly encouraged by King Ahab (contemporary with the prophet Elijah). God raised up a particularly zealous man, Jehu, to wipe out the Baal system along with Ahab's remnants who still initiated it. Jehu proceeded to go above and beyond this with great cunning to wipe out Baal from Israel.

Our treatment plan sounds like Jehu to me. The latest numbers on neuroblastoma stage IV put it at about a 60% survival rate. MIBG therapy could raise that. this is not a situation for hesitancy or holding back. We need God to raise up a Jehu in Esther's system that will leave her with clean scans 25 and 50 years from now. This is what we're praying for. Along with endurance and a trust in God for our family beyond what Sam & I have been able to fathom.

But we are not of those who shrink back and are destroyed, but of those who have faith and preserve their souls. (Hebrews 10:29)

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