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)


  1. Our God Is Awesome & I'm praying for y'all still! :) All will be well! In Jesus Name Amen!

  2. Sam, praying for you, your family and especially little Esther. My Anna is just a handful of months older and I can't imagine. Thanks too for keeping up the blog, I hope it's helpful for you because I know it keeps you on our minds and gives us information for specific prayers. Thanks! Also, love the OT warrior reference. I'm not a biblical scholar, so there may be exceptions to my observation, but it seems when God ordains a battle that he leads his people to, he doesn't drop them off at the front, he leads them through to victory. I read this this morning...

    And he said, “Listen, all Judah and inhabitants of Jerusalem and King Jehoshaphat: Thus says the Lord to you, ‘Do not be afraid and do not be dismayed at this great horde, for the battle is not yours but God's.. .You will not need to fight in this battle. Stand firm, hold your position, and see the salvation of the Lord on your behalf, O Judah and Jerusalem.’ Do not be afraid and do not be dismayed. Tomorrow go out against them, and the Lord will be with you.” 2 Chronicles 20:15-17.

    I cannot imagine how difficult, both physically and spiritually this next year will prove but you have good advice here...Stand Firm! Hold your Position! See the Salvation of the Lord on Your Behalf! Do not be Afraid! Do not be Dismayed! The Lord will be with YOU! Also if you keep reading ch 20, God obliterates the enemy, to the point that when they looked on the horde, none had escaped. I pray that through this next year, God fights for you and your little girl, and at the end of the treatment doctors can look on her cancer knowing that nothing has escaped and it was God that fought for you.

  3. Sam and Anthony,
    I will join you guys in praying exactly what God has laid on your heart through His Scripture! God hears!!
    Much love,
    Kathleen Nelson and family

  4. Your faith inspires me. Your knowledge of scripture floors me. Thankful for your story and perspective.

  5. Sam and Anthony,
    Trevon, Avery and I are on our knees fighting with you. God's grace is so evident in your faith--in your authentic pursuit of His goodness in His Word.

    In faith,

  6. Elizabeth BarberJune 29, 2012 at 7:03 AM

    More tears. Sheesh. Thankfulness at the grace of God as evidenced by the bump on her head. Amazed at the parallels of the treatment plan to the exact type of eradication you asked for...He hears! Happy to see five little smiling Alvarados!!!

  7. I know this isn't how you thought the next year would look. I just keep thinking that God is going to do incredible things through Esther and all of you. We are praying for peace and comfort that only He can provide.

  8. And so, because you will be in this intense fight against cancer, that tool of darkness, these verses ares especially for you and we will all join you:

    Finally, be strong in the Lord and in the strength of his might. Put on the whole armor of God that you may be able to stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. Therefore take up the whole armor of God that you may be able to withstand in the evil day, and having done all, to stand firm. Stand therefore, having fastened on the belt of truth, and having put on the breastplate of righteousness, and, as shoes for your feet, having put on the readiness given by the gospel of peace. In all circumstances take up the shield of faith, with which you can extinguish all the flaming darts of the evil one; and take the helmet of salvation, and the sword of the Spirit, which is the word of God, praying at all times in the Spirit, with all prayer and supplication. Eph 6:10ff

    Love to you all.

  9. I have been so troubled to learn of three Cancer Kiddos in the Fort Collins area all of us linked by location, faith and now Cancer. My daughter, Macie just passed her two year post diagnosis date from Wilms Tumor. She is in remission now and doing great. My heart breaks for you as I can relate to the newness and fear of it all. We will add your precious Esther to our prayers. If there is anything I can do to support you please let me know.

  10. Anthony - you, Sam, Esther and your family are in my thoughts constantly and I am willing positive thoughts, strength, and patience your way during this difficult journey. We are all here for you.

  11. Hit it with a Fire storm like no one has ever seen.. Gpa

  12. Amen, brother! God is on the move and he is for you!

  13. If you end up in Philadelphia, it is about 2.5 hours from our house - depending where hospital is. Let us know if you need a place to stay.