Sunday, March 22, 2015

cousin selfie.
While we wait for that crystal ball that we ordered, we weigh the information we have, we walk as far down a path as we can go, and then we guess. That’s the best we can do, because you know what - it changes the next day. So…. after I stayed up most of a night last week writing out a detail explanation of that last week - the hospital trips, the treatment plan that was re-routed, the back-up treatment plans B and B2 - the very next day Louisville called and said that the second half of our Plan A was open. Remember, we liked the Louisville trial, but it was closed and the hospital had no time frame when it would open. So, we liked it enough that we wanted to buy some time with radiation. When radiation was taken away, we didn’t have time to wait for an unknown timeframe, so we moved on with Plan B and B2. So as of Friday, our Plan A is back. Now, I guess, we have Plan A, A2 and A3. Is it not amazing that Eli relapsed 14 months ago, there was nothing available. Someone helped us find something to prolong his life in the hopes something would come along. Two things that we have been watching opened up the very same week that we need them to. (and to be clear, just because these are available doesn’t mean they work. Those two trials obviously have no results. We are just excited that novel treatments are open) The NOAH protocol - our now A3 - has been in in the works for three years. It opened up Tuesday, while we were at St. Jude discussing options. I have no idea how long the Louisville trial has been in development. I can only imagine about the same amount of time, and it opened up the day we were sending paperwork to our other choices. The devil is responsible for evil and hardship in this world. He is the evil one who is inflicting these children, and any amount of hate that my body and soul can muster is reserved for him. But, the Lord our Creator, the loving craftsman of this precious boy, has carried us in His hand all along this journey above the flames. I think often about stories in the news of people - adults and children - who have decided to either stop cancer treatment because it isn't working, or forgo treatment altogether because it is not curative or it might be hard. And, that is a free will decision, quality of life and happiness is part of the formula. But if we had decided that Eli’s life was over when he relapsed (there is no cure), we would not have him right now and we would not have him to try this. If we had decided that his life was over in 2012, Caleb would not remember his brother (he was 4 years old). There often comes a time to call it, and we will face that one day - but not today. Today, I pray that we will pioneer something or eliminate something. Either way, progress is made and Eli’s story has been a light.

Eli’s files have already been reviewed at MD Anderson and Louisville (we had started that process the week before which is why they knew to call us when it opened), and we have it in the works at Sloan-Kettering. We are pursing all three at this point and hopefully as the process moves along, the right choice for Eli will shake out. So, just keeping you updated because you know it changes often. I am praying that we will be in Houston and Louisville next week. New York is not as quick to move things. MDA and Louisville of course would love to get started on something right away since they just opened, so I’m sure that is why they are being a little more pursuant and responsive. But New York is phase two, so they’ve got patients already. It will be Wednesday before his case is presented to the review board there. Meanwhile, guess what besides his hair is growing.

I stayed with my mom some yesterday and last night to make sure she is steady as she recovers from her hospital stay. We will be working on the house, finishing moving, shopping for spring shoes and clothes this week. Trying to get things in place if we have to leave suddenly. So, I expect it to be yet another busy week. Please, remember to get in your t-shirt and Eli Bear orders in. The car show must go on!!

I want to close by copying a part of one of my favorite Bible events in the Old Testament. It is recorded in Genesis 22 (and notice Abraham’s confidence when he talks to his servants “WE will come back to you”):

“Some time later God tested Abraham. He said to him, “Abraham!”

“Here I am,” he replied.

Then God said, “Take your son, your only son, whom you love—Isaac—and go to the region of Moriah. Sacrifice him there as a burnt offering on a mountain I will show you.”

Early the next morning Abraham got up and loaded his donkey. He took with him two of his servants and his son Isaac. When he had cut enough wood for the burnt offering, he set out for the place God had told him about. On the third day Abraham looked up and saw the place in the distance. He said to his servants, “Stay here with the donkey while I and the boy go over there. We will worship and then we will come back to you.”

Abraham took the wood for the burnt offering and placed it on his son Isaac, and he himself carried the fire and the knife. As the two of them went on together, Isaac spoke up and said to his father Abraham, “Father?”

“Yes, my son?” Abraham replied.

“The fire and wood are here,” Isaac said, “but where is the lamb for the burnt offering?”

Abraham answered, “God himself will provide the lamb for the burnt offering, my son.” And the two of them went on together.”

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