Wednesday, July 20, 2016

I recently came down with a bad infection that kept me out of Ava's hospital room (due to her low immune system), off the computer, and in bed for a few days.

It was really hard and Ava cried many tears over our separation. We face timed as much as possible but every conversation had her wiping her tears away. The redeeming part of this sudden illness is that I got to spend the last 4 days with Gwen and Jude. Holy cow! They are so cute.

Since I last updated, something very special happened. A few nights ago, Ava and I were drifting off to sleep when she initiated THE conversation. She asked me what would happen if the chemo didn't work. I wanted to hear her thoughts first so I asked her what she thought would happen. She said she would go to heaven to be with Jesus.

Her candor and her sweet faith broke me and fixed me in the same instant. How pure and strong is her faith to anchor to promises that even well seasoned Christians might stumble through at times? How heart wrenching is it that her mouth forms around words like "dying" and "heaven" while her counterparts talk about summer break and vacations?

I asked her if she had fear. She answered that she was so excited to meet Jesus and to be in a place where she wouldn't be sick anymore. But soon, she began to wipe away her tears as she told me how hard it would be to leave us behind.

I don't want to walk this lonely road. The way is hard and broken. There are thistles and thorns and we step with tender feet. But to know that she is leading us with gentle attention to our shattered hearts, that she is not scared even though we tremble, that she knows where she will be when all is said and done, it lightens our load a fraction at a time until we realize that she bore the brunt of the burden all along. We were just spectators cheering her on in this wretched, wonderful race that is called life.

I have told her this before and I will say it and envision it for many, many more times to come. There will be a day, when she approaches the threshold of heaven and God will be there. He will scoop her up in his arms and he will whisper, or perhaps he will shout, "Well done, my good and faithful servant. Enter into joy!" For there is no one I know that has lived out the difficult lot given her with such grace, joy, and honor as my love, Ava Bright.

Thank you to everyone who has prayed for this particular conversation. It was so natural and so filled with beauty that I know it was not coincidental but a culmination of so many loving prayers.

We are currently waiting on Ava's counts to recover. In the next week we will redo a bone marrow biopsy and a pet scan to restage her disease and get a more accurate read on how well Mylotarg worked. At this time, the doctors are still uncertain which chemo they will pursue next.

With that in mind, there is actually another chemo that would possibly work even better than Venetoclax. This drug, called a Notch 1 receptor inhibitor, would be ideal because it would target the Tcell component of her disease which seems to be the most aggressive part of her leukemia. Ava has a Notch 1 mutation that would make the drug a truly viable option. The problem we ran into early on was how impossible it would be to get the drug. Venetoclax was already FDA approved and therefore its biggest stumbling block was getting a hospital and a doctor willing to administer it. With the help of so many of you, we were given great advice on how to pursue Venetoclax and we have possibly secured it for her.

The issue with the Notch 1 inhibitor is that the drug is in trials right now and therefore the drug companies keep a very tight rein on compassionate use opportunities. One example of why they don't readily allow individual uses would be that if they gave Ava the drug and she were to pass away from some unforeseen side effect, the FDA could pull the drug and the company could lose billions of dollars. That type of risk is not taken lightly.

So far, all three companies that have this drug (Eli Lilly, Pfizer, and Merck) have denied us access. Since time is not on our side, we are desperately seeking a way to expedite an appeal. Does anyone know of a way?

Last night I couldn't sleep from the pain of my sore throat and Ava's situation. I emailed her oncologist begging him to help us get the drug. In the morning, I was a little embarrassed at my emotion and sheepishly waited for his reply. His response was filled to the brim with kindness.

There are times when I wonder if the Lord will answer my cries with tender care. There have been more moments of silence these past few years than I have ever experienced in all of my time walking with Him. But I know, without a doubt, if Ava's oncologist can be so good to us than God's kindness will be immeasurably more.

I am expectant, face lifted up toward heaven, awaiting his response.

It will be good. I am sure of it.


Peter said...

Praise God for the blessing that Ava is to you and to everyone that knows her!
Praying for good test results, access to the right medications and for you to feel better soon too, Esther!

Linda said...

This is such a lovely post. I will keep you both in my prayers.

Unknown said...

I can't imagine what it was like to have that conversation with Ava. That is what Jesus meant about faith like a child. So moved.