Saturday, June 30, 2012

A Reminder as the Next Year of Our Life Begins

Esther napping after a little bit of an upset stomach
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?

Friday, June 29, 2012

Humbled

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

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

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

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

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

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

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

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

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

 

Thursday, June 28, 2012

Some Good News and the Intense Road Ahead

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

Wednesday, June 27, 2012

A God Who Hears, Who Wipes Away My Tears

This morning was peaceful. We woke up expecting a really busy day, but it was mostly a day of waiting. Our tests were not scheduled as early as we'd hoped. It was a sweet time, though. Our day stared off from a visit from a Child Life Specialist who brought Esther a bunch of goodies...she got play dough, a princess tea party set, books, markers, crayons and fun things to color, a puzzle and a memory game.

We got to see our friend, Thomas, and his family. We prayed and chatted for just a little bit. They were ready to head home. When I told her Thomas was coming she said "Yea, I like him." She was shy when they arrived, but after they left she said told me it was fun to see Thomas.


She had a short MRI that was scheduled for 3:45pm and a CT scan for 6pm, so Anthony headed out about 12 or so to get the kids and my nephew to come for a visit. It was good to see the kids...they had lots of questions and thought Esther's bed was pretty cool. Anthony stayed with Esther and I took the kids back down through the hospital with my mom. We checked out the amazing murals on the floor of the main level from the 4th floor, took a trip to the second floor to check out the lego version of Children's Hospital, and then made our way down to the first floor in the glass elevators. This facility is so beautiful and I'm really thankful to be at a hospital just for kids.


When I returned to the floor I saw our oncologist standing outside the door talking with another doctor. It was one of those tunnel vision things from the Wonder Years. I met them at the door and they came in, along with another doctor, to talk with us a little more about Esther's tumor and her bone marrow biopsy.


They have confirmed that it is a neuroblastoma and did find it in her marrow. The bump on her head is not her primary tumor. Neuroblastoma doesn't start in the bones, it starts elsewhere, usually in the abdomen, and often metastasizes in the bones. She has stage IV neuroblastoma. We will have a treatment meeting tomorrow afternoon sometime, but they said that treatment will need to include chemo, surgery, radiation, and bone marrow transplant.


After the doctors left and Esther was peacefully sleeping, we began to read more about what stage IV means and wondering what will the outcome of this whole journey be. Even now as I write, it seems utterly unreal, phenominally painful. As I watched this little girl sleep a peaceful sleep, I wondered how long has this cancer been in her body. She never had any symptoms...most neurblastoma's don't have a symptom until it's already spread. What an ugly disease.


This is so hard and we aren't even to the hard stuff yet. I'm scared. We met with a social worker who was comforting.


Esther's MRI was delayed, but that was a kindness because she was able to rest and they ended up being able to do the MRI and CT back to back. She just had to down an 8oz contrast in 30 min. We made a game out of it and she did well. The MRI was terrifying for her, but since they didn't need images too precise, they rolled her up in a blanket so she couldn't move and just gutted through it. We went straight to the CT scan and had some IV problems that caused her some pain. She wasn't as scared but her cries were enough to about kill you.


This afternoon felt like one blow after another. And one thing about hospitals is why do they have such crappy kleenex? It's like using a tiny piece of sandpaper to wipe away your tears.


We returned to her room, Anthony left to get some food and I was feeling hopeless. I pulled out a stack of cards from Frannie & Lydia's Sunday school classmates and in it was a book with pictures from a lot of the classes wishing Esther health. It has a short phrase under the picture of one of the classes and it says, "Dear Esther" "all of your friends" "are praying for you" "to a God who hears" "You are our sweet friend" "and we can't wait to see you soon" "We love you, from your friends at church."


A glimmer of hope...we have a God who does hear. He hears. And He promises to wipe away every tear...and it will be tender, gentle, with kisses and a loving embrace, not abrasive like the kleenex in this room.


We hung the cards in her room and as I read them to her one by one they said "Esther" and I remembered, her name means victorious. Another kindness in an afternoon filled with sorrow.


The song below is so good. A simply hymn put to a different tone...an honest cry. You can read the author's testimony as to her arrangement of this song. I love watching this video, the honest struggle. The pain in her playing, this dissonance in the chords. This world is harsh but there IS hope. It may be muted, but God is good. It doesn't match up all the time. About 3 minutes in she cries out,

"And I can't understand. And I can't pretend this will be alright in the end. So I'll try my best and lift up my chest to sing about this joy."

 

In the album version she ends with the lyrics to "It is well with my soul"


When peace like a river

Attendeth my way

When sorrows like sea billows roll.

Whatever my lost

Thou has taught me to say

It is well

It is well

With my soul

Tuesday, June 26, 2012

Rerouted

A month ago we were enjoying a nice 3 day weekend. I emceed at church, we helped in Sunday school, I grilled some steaks, and we got ready for my mom to come into town.

Three weeks ago the girls had just enjoyed a fabulous tea party for Lydia & Frannie's 6th birthday.

Two weeks ago, Sam and the kids were in the thick of VBS week, we were thoroughly enjoying our new windows, and just had a little MRI that coming Friday that we were barely concerned about. It's probably just a lipoma or maybe a hemangioma at worst.

One week ago, we were preparing for our Esther to have a likely benign tumor and part of her skull removed in major surgery. She would have some metal in her head but it would be done and they'd do a biopsy just to be sure the tumor wasn't bad.

Today, we're spending our first night in Children's hospital as they determine how far the neuroblastoma cancer has spread throughout her body and how to treat this deadly disease. Esther had no symptoms but now she can't keep any food or water down because of her third round of anesthesia in a week and a half.

Esther was patient and brave today and did very well, has "good veins" and they were able to easily place her port and take bone marrow samples from her hips. We still do not have a final, conclusive verification that the cancer is neuroblastoma but they are very sure that's what it is. Tomorrow will bring a CT scan, a PET scan, an MRI, and blood work. The concern is that neuroblastoma usually starts around the adrenal glands, in the abdomen, and that the tumor in Esther's skull is not where it began. Pray the tumor would be abnormally isolated. We should have initial pathology results from her bone marrow biopsy tomorrow.

In less than a week our lives have been completely flipped upside down. Completely rerouted. Likely to never be the same ever again. It's still hard to believe this is all real sitting here in this hospital room with Esther and Sam. I'm frustrated and angry. Esther is getting irritable and this is only the beginning. She has been so brave and patient but she can only handle so much. Why sweet little Esther? Why not one of us? Why her? I have no idea. I have no clue how to handle this.

But the truth is that God is the same yesterday, today and tomorrow. He is good and his love through Christ has not changed. I don't know what He's doing but I know he is in control and will work all things for the good of those who love him. Am I struggling to believe that right now? Definitely.

But I also know that God willingly gave his own child who suffered that we might be free from sin, that we would know him and trust him. God willingly did this. Jesus willingly went to the cross for us. The greatest threat to us was never sickness or cancer or forest fires or even death. The biggest threat has always been our separation from Jesus and our inability to get back to him. God sent his own son to suffer and die to change that. He made a statement once and for all that he loves us and wants us to be with him.

We don't know why God is doing this (and doubt it not, he is over all this), but we know that he is with us. He is no stranger to suffering and tears. He understands. He grieves with us. He has not deserted us or forgot about us.

If the LORD had not been my help,
my soul would soon have lived in the land of silence.
When I thought, "My foot slips,"
your steadfast love, O LORD, held me up.
When the cares of my heart are many,
your consolations cheer my soul.
Psalm 95:17-19

Monday, June 25, 2012

Fingerprints Of Kindness, Unending Faithfulness

The days are running together and the waiting today is agony.  At first this morning I kind of forgot that we'd be getting news from Dr. Garrington, I've been so focused on Tuesday...that Tuesday we will enter the doors of Children's Hospital and it all gets very, very real.

Update (5pm)
Some good news: The test results so far indicate that the cancer is the Neuroblastoma type and NOT the sarcoma. They still have more tests to run. It's likely Esther will have 5 straight days of inpatient chemo starting Thursday or Friday. The doctor's concern is that because the cancer is in a weird location (in her skull) that it might have started somewhere else. Please pray that this is not the case. But praise God that all indicators are that it is not the sarcoma! We'll be at Children's Hospital starting tomorrow when she has her chemo port put in (surgery starting at 1pm) and more tests done and we'll come home after her first round of treatment is done. (update from Anthony)

The last week has been such a blur, so dull and so vivid.  I keep finding myself in a room and no idea why I'm there or stopping mid-sentence.  I am overwhelmed by fear in circumstances, sadness for a little girl who has really no idea the journey she will endure, heartbroken for my other four children who are doing their best to understand all of the new needs and who are scared for their little sister.

At the same time I am overwhelmed by the kindness and love shown to us.  Thank you for praying and asking others to join in prayer.  We are desperate for it and feel lifted up.  For the amazing friends who spent a hot Saturday afternoon scrubbing my un-airconditioned house, washing every sheet, towel, blanket, stuffed animal and piece of clothing they could find.  I am thankful for the generous friends and family who see our needs when we're just walking in circles.  We feel so unworthy of such love. 

I am striving to continually remind myself, from simple VBS lessons, I can trust God...no matter who you are, no matter how you feel, no matter what people do, no matter what happens,no matter where you are.

The morning of Esther's biopsy I was fighting to remember that God is a kind and generous God who willingly gave His son's life for my own, that He doesn't punish.  This trial isn't because of something we have or have not done.  The One Year Bible reading for that day was 2 Kings 3-4:17, there were three stories of God's kindness.  He united three kings & gave them victory against enemies even though they hadn't honored God's ways.  He generously provided for a woman about to lose her children to a creditor by multiplying the only thing of value she had...a small jar of oil.  She trusted God and He multiplied that oil.  He saved her sons.  Right after that is the story of a Shunammite woman who had shown the prophet Elisha hospitality when he was in town.  She was not a Jew and did not culturally follow the ways of the Israelites.  She could bring God nothing, she did not know the religious rules and standards, yet God had a kindness planned for her. She had no son and her husband was old.  Elisha inquired about what be a way for them to thank her.  She was too afraid to ask, it was just too painful so another had to tell Elisha her want for a son.  When Elisha told her she would have a son she said, "No, my lord, O man of God; do not lie to your servant." The next year she held her son.

I was right there...scared to hope.  From my journal..

"You poured goodness over undeserving kings and faithful people.  Yu are the same---you are my jar filler, my child giver--hope where none is found, the Shunammite woman couldn't fathom to believe--it just hurt too much, but you did it!"

God is good and kind no matter what.  I can trust God not because I am good and faithful but because HE is good and faithful.  I continually see his fingerprints of kindness.  There are two other families we know with children fighting cancer...God has given us friends to pray with, talk with, eat with.  While we'd rather be spending time together under different circumstances, this too is a kindness.  These families would love your prayers too and we'd love for you to lift up their lives along with Esther's.  You can read about Thomas' journey here: http://shapingheartshome.wordpress.com/ and Aly's journey here: http://www.caringbridge.org/visit/AlyzaConley.

Thank you for your prayers and support.  Pray we would continue to see God's fingerprints, that we would remember His unending faithfulness.





Friday, June 22, 2012

Victorious Is Her Name


We named Esther after Queen Esther in the Bible.  We have prayed for her that she would be brave and victorious throughout her life.  Queen Esther was beautiful, smart, calm, and stood up for what was right.  She risked her life for the good of a nation about to be unjustly destroyed.  She was brave.  She was victorious.

Thanks to Illumination Photography for a last minute photo shoot.
Today our 3 1/2 year old daughter, Esther, was diagnosed with cancer.  Over the last week she has been so brave, so calm.  She has trusted us and it has been beautiful to see. 

About a month ago we noticed a bump on Esther's head.  She hadn't hit her head that day and we thought it could've been a bug bite.  We waited a couple days and went to the doctor.  Because the bump was soft and could move a little, he wanted to watch it to see if it would shrink thinking it could be a cyst or a benign, fatty tumor.  I called back after a week and a half because it wasn't getting smaller and the doctor ordered an MRI.  The results of the MRI revealed that there was a mass going through her skull bone and that she needed to be seen by the doctors at Children's Hospital in Denver.  At this point we were still thinking it was something benign. 

We met with a couple of neurosurgeons who took a full skeletal x-ray and evaluated Esther's MRI.  They had a plan to do surgery to remove the tumor and portion of her skull.  However, after passing the images onto other doctors and oncology, the surgeons thought it was too risky to cut into the bone because if the tumor was malignant, it could risk spreading cancer cells. Instead, they scheduled a biopsy for today, Friday, June 22.

Esther was such a brave, calm, beautiful little girl.  Her biopsy was scheduled for 1:30am...that meant no food after 5:30am and no drink after 11:30am.  We woke her up at 5 and she choked down some yogurt and a few cheerios.  We actually didn't make it into the OR until about 2:30pm.  She was so calm and patient and never fussed about being hungry.  She was only anxious just before the biopsy when the anesthesiologist came to talk us through the process.  Esther asked for us to "leave now."  That was hard...to just hold this little girl and ask her to trust us, to tell her we love her and that Jesus loves her, and that it's going to be okay no matter what.  Especially when we know the road ahead could be extremely painful for her.  She did trust us.  We walked back to the OR, I held her tight.  When we got there, she laid on the bed and held our hands.  Such a gift of a sweet girl.

We went down to the cafeteria to eat some lunch and waited for a call from the nurse who was going to check in about half way through the procedure.  She never called, so we went back up to the surgery center.  Shortly after that the surgeon, Dr. Wilkinson, and our oncologist, Dr. Garrington, came out to tell us that the procedure was successful and they were able to get a conclusive result from the biopsy.  They found a blue-celled, malignant cancer.

We listened as best as we could, losing the fight with tears.  We had talked with Dr. Wilkinson the day before and he told us that they were suspecting this type of cancer, so we knew a little of what to expect.  The tumor is either a neuoblastoma or a Ewing's sarcoma.  We are desperate for prayer that it is a neuroblastoma because a Ewing's tumor is very dangerous.  I know it's a strange request to pray for cancer, but we covet your prayers.

We should know on Monday what type of cancer it is.  Tuesday we will go back to Children's Hospital and she will have a chemo port put in, a bone marrow biospy, and lots of other tests.  Dr. Garrington said that we should expect to stay at Children's through the weekend so they can run all the needed tests to determine if it has metastasized anywhere and what is the best treatment plan.  We can expect to begin chemo next week as both of these types of cancers have to be aggressively treated.  Dr. Wilkinson told us that when contained, neuroblastomas generally melt away with chemo. 

Please pray that the tumor is contained and has not metastasized anywhere in her body.  Initial blood tests and skeletal x-rays did not show anything alarming as far as we know.  Pray that this tumor would melt away and not come back.  Pray for her to handle it all with bravery, grace, patience, and trust.  Pray for wisdom as we figure out how to do this as a family and for Rourke, Lydia, Frannie & Zinnia to trust us, yield their hearts and to trust God.  Pray for us to be united and on the same team, to be selfless and patient with each other and our children.  Pray for Esther to be healed...Victorious Is Her Name.