Friday, August 19, 2016

For Such A Time As This

Surprise!!! We are at home in Chicago this week. It was intended to be a quick break away from labs and hospitals while we awaited Venetoclax to work. And, to be honest, I really, really didn't want Ava's only trip home to be on hospice. So as soon as we got the okay on Tuesday, we bought tickets to fly home on Saturday.

It feels like we are stirring awake from our nightmare. Waking up in our own beds and walking this familiar floor plan, seems like a dream come true. We know it is temporary but something about being home brings hope for many more years with Ava.

Yet, there are still daily reminders that we are living out the most uncertain days of our lives. These past few nights, Ava has been crying about the pain in her knees and in her head. We are left with doubt wondering if Venetoclax is even working.

I've been thinking about the story of Queen Esther these days. She rises suddenly from out of nowhere, an ordinary girl turned queen. But it is not without a divine plan, a story that was orchestrated before time began. As the narrative unfolds, we find that Esther is in the exact place, time, and position to save all of her people in the land. And, the crazy thing is, she goes for it.

It looks heroic and brave from this side of it all. But I can imagine the heart thumping fear she encounters as she steps up to the throne of the King, wishing she was somewhere else, wishing it was someone else in her place. I can imagine the terror that must have gripped her by the throat as she wondered if she would die that day. But I also see the determination of this young girl to obey her calling.

Though our lives in this generation might not play out as dramatically as Esther's, we learn through her how we ought to position ourselves to carry out God's purpose in our lives.

As the second child to ever receive this medicine, we realize that it is experimental. We know that Ava's results will give much insight into the medical world. When we reached out to one of the doctors following her case at St. Jude's, he was so excited about Venetoclax and what it might do for the future of leukemia. But it is so new that even St. Jude's has not begun a trial of it yet.

So it is with fists clenched tightly that we hand over our beloved treasure for someone else's benefit. Maybe what the doctors learn from her disease will save many other children from suffering in the future. Perhaps, children diagnosed as early as next year won't have to lose so much quality of life because of what we learn from all the children bravely entering trials today.

Perhaps, we have come this far, for such a time as this.

One year ago, Jeremy Lin sent Ava a card. He had heard of her story through a friend of ours and his response was to sit down and write out an encouragement to her. In November, after she had relapsed, he invited her to a game where they met face to face for the first time. Since then, they have kept in touch. I will always remember her hunched over her little pink laptop, typing away with two fingers, intent on writing to Jeremy but struggling with her limited spelling from missing so much school. I can imagine Jeremy, typing away on his own device after a busy day, tired but intent on responding to Ava's questions and many emoticons. Because, honestly, the girl types two sentences and then fills the rest up with different smiley faces. :)

Last week, Jeremy stopped by for a visit. He and a few of his family/friends sat with us for a while. Ava and Gwen tried to stump him with (corny) jokes, and Jude just sat around in his Jordan jersey (he's so passive aggressive). When I came back to the table after stepping away, I saw Mike laughing with these men who chose to lean into our lives when we were probably the most scraped up we had ever been. I can't tell you why Jeremy decided to befriend Ava but I can guess it was in obedience to God. And perhaps it was all orchestrated for that moment when Ava and Mike would create a special memory together with one of their favorite basketball players during our most fragile season of life.

Perhaps it was for such a time as this.

We go back to Seattle on the 22nd to see how well Ava has responded to this treatment. Yesterday we traveled to the Children's Hospital of Wisconsin for a second opinion regarding transplant. The reason we are considering transferring hospitals is because if we are embarking on the end of life for Ava, we want to be close to home. We spent hours discussing Ava's case in Wisconsin and the verdict came out the same. It is unlikely Ava is curable. But we can try; we can go down swinging if we choose.

So it is here. It looks like we are heading into the final chapters of this story. Of course, our stories continue into eternity as we anticipate life forever with God. But, I won't lie; right now, there is fear and sorrow. There is unmistakable turmoil. We desperately throw down every anchor we have and pray that God will hold us still during the storm.

Yet there is also joy as we see Ava live with abandon and courage, delight and wonder. And there is all of you, entering the Throne Room with us, pouring out prayers for Ava, reaching into our lives with your kindness and love. These days have been filled with incredible moments thanks to all of you.

The next few posts will express our gratitude to all who have jumped into the arena as we fought cancer the last two years. In anticipation of this, I asked permission to share about Jeremy and Ava's friendship in order to thank him.

The response was this: Yes, but please direct the focus to God.

I could not have asked for a more suitable permission.

Thank You, Father, for 8 years with Ava Bright. Thank You for almost one year of life after relapse. Thank You for every person who spoke into our lives. Thank You for every prayer uttered on Ava's behalf. Thank You for every gift of love offered to bring Ava joy. Thank You for every day we woke up to her smiles and for every night we've fallen asleep to her breaths. Thank You for being near. Thank You that death does not win. Thank You that love will.

And thank You for preparing our faiths for what is to come.

For such a time as this.

1 comment:

Jenzilla said...

Esther - what an incredible gift you are offering by sharing this journey with us. Wish i could articulate how powerful these words are...thank you.

Ava and Gwen - I have two daughters, Chloe - 7 and Emery - 5, pretty close to your ages! While they can be pretty good friends sometimes they also get super cranky with each other. It looks like you girls are really close! I saw you hold hands at your party and how sweet you were, taking good care of each other. That is so very special! I bet you have lots of fun playing together! Do you have favorite games? My girls like a card game called Sleeping Queens, and have just started playing Uno (I used to play it when I was your age - it's been around a LOOOOOOONG time!!!!)

Hope you are enjoying your summer with your family, both in Seattle and with your trip home to Chicago - that must have been wonderful to see your house and friends again! Have you been cooking much? Hope so!

Hugs and best wishes,
Jen Ingram