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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