Sunday, June 12, 2016

It Is Well

It is so strange to walk these halls, dragging our suitcases behind us toward our room. Almost 2.5 years ago, we arrived here in such a different way. Sirens blazing, the ambulance raced toward Lurie's with a very sick Ava on board. Her blood was chock full of leukemia cells. We couldn't biopsy her marrow at the time because of the tumor that rested up against her mediastinum. It didn't matter though, we knew that the cancer was there. It declared itself by vomiting its cells right into her blood stream. She was days from dying, the doctors said. 

We settled into our room, 1719, and looked out the window at the city. The cityscape became a constant companion through those first 3 weeks in-patient. It was our entertainment during the day as we looked out at the little people, going to and from their destinations. Where were people scurrying to? What was the purpose of their steps? To see the world walking and breathing while our lives stood still...It grieved us. It helped us. It was a reminder that the world would still turn even when ours had screeched to a halt. It was a symbol that one day, we might be able to take that first courageous step back into life even with our shattered hearts. More than anything, I remember longing to be on the other side of that window away from this place.

That first night, I excused myself to a lounge far away and I howled. I started off on a chair and soon found myself on my knees, head to the ground, hands at my sides letting the weight of her diagnosis rest on that floor. I do not know how I got there. I do not remember how long I stayed. But then a voice pierced that room's sorrow and a woman gently guided me up, repeating in Spanish "Dios es bueno." God is good. 

Her son's name was Angel and he had cancer. He couldn't have been more than 10 years old. Yet, she wanted to encourage me and help me up. 

Angel ended up passing away a year later. But, I believe she wouldn't recant her statement. You see, she also had a paraplegic son. She would push her teenage boy into the hospital, up the elevator, down the halls to Angel's room so that she could care for them both. So I believed her when she spoke. These were not sentiments she tossed about lightly. They were felt and experienced through the darkness and sorrow of her story. And even while carrying those unspeakable burdens, she had time to see a mom grieving in the lounge. She stopped her world for a moment and stepped into mine. She took hold of my elbow and lifted me up. "Dios es beuno," she encouraged me. "Levantate. Dios es beuno." 

God is good. Stand up. God is good.

Since that day, so many of you have stopped to give us your hand. The moment we learned of Ava's cancer, we stepped into quick sand. It would be a long, hard process to break free. The fight to gain ground would be slow and taxing. For every step up, we would sink inches down and soon we noticed that our chances of escaping were dwindling. Yet, every vine tossed our way, every branch thrust toward our hungry hands gave us hope. And even if we succumb to this pit of death, the last vision we will have is of everyone surrounding us, reaching out toward us. We will not go alone. And this is how we know that God is good. 

The other night, Ava woke up to use the bathroom. She was running a high fever. Before even taking her temperature my mama senses picked up the heat radiating from her body. I cuddled her, coaxing her back to sleep but she was distracted. She wanted to tell me something. 

"(I'm so thankful) for my cancer going away, for daddy going to Seattle to make sure it was a good hospital, for you finding plane tickets and talking to the doctor and to daddy, and for all the people in Seattle like Auntie Kelly and Auntie Lam and Auntie Stephanie and Uncle Mike and Liz and Micah and them letting us stay in their guesthouse, and you guys trying to find a way to make me feel better...and yeah." 

It's like she was jolted awake by gratitude and could not rest until she expressed her thanks to anyone who would listen though it was the dead of night. I say it often; Ava has taught us much. But this lesson is so vital, so important for our survival. Once thanksgiving ceases, the pain will compound and break us. When we lift up our hands and our faces we are forced to look upward and away from the desolation of the ground we stand on, toward the silver lining that only God could have painted in the skies.

So I begin my thanksgiving here and I type these words to remind myself that we have been given much.

Ava needs an air ambulance to get to Seattle. Her condition has worsened so much that she has spent the last week laying in bed sleeping away her pain. Through a friend of a friend, we were introduced to someone at AeroCare who worked so hard to ensure that Ava would have safe passage to Seattle. Because her situation is so critical, she would have been unable to fly without medical support. With our without the approval of insurance, we will get there via a medical plane equipped to provide Ava with all the support she needs. This was the assurance given to us by our friends at AeroCare. It means that the pilots and the nurses would be donating their time to Ava as a gift. It would mean that the vendors and the CEO would be granting a life saving transport out of pure kindness and compassion toward us. It is unbelievable still. 

Even though Ava is set to receive Mylotarg in Seattle, there is still a team of doctors pouring over the genetics of her leukemia looking for weaknesses in the disease. Her marrow is sitting in test tubes, swirling around with chemotherapy drugs to see which ones will work best against her disease. This newest technology, barely open to the public, was gifted to us on a compassionate use basis. That means all the doctors working on her case, the technicians monitoring her marrow, the labs being used to test chemo drugs against her disease are all working for free. All this because someone knew someone who wanted to help Ava. We are speechless.

The messages are pouring in with almost identical introductions, "I don't know you, but..." 
"I am praying for you." 
"I would like to help your family." 
"I would like to buy tickets for your trip to Seattle."
"I would like to send you a meal."
"I would like to send you a care package."
"I would like to cover the cost of boosting your page so that you can raise awareness."
"I would like to make a special set of googles so Ava won't be scared during radiation."
"I would like to suggest a supplement, herb, medication, treatment, to help Ava feel better."
"I would like to offer my services, in any way, to your family."
"I would like to help you find a medical flight to Chicago."

These are the words we read on a daily basis. 

In many ways this has been one of the harder days of our whole journey. We left the house for the possible last time we will ever be together again there. Ava was in so much pain, that we hurried out without a backward glance. As soon as we settled into room 1717, two rooms down from the room we stayed in at the beginning of her disease, there was more howling. Except, this time, it came from Ava's increasing discomfort at the tumors pushing against her scapula and her arm. Only morphine quieted her down. I tuned in to Allistaire's celebration of life, via livestream. I listened while her parents, her sister, her grandparents spoke of a beautiful girl whose life touched so many people. Yet, she is no longer with us. This will be my friend Jai's reality until heaven is no longer a dream away. And just now, the nurse walked in to tell us that Ava's disease increased to 5% in her blood. 

It is true, we are nearing the end of the road. But there is a path. It is narrow, dimly lit, and barely trodden. Yet, there are people who will guide us through the thick forest down this trail and many more like it until we have truly searched the world over for our girl, Ava. And at that point if there is still no way, we will give thanks for the distance we have come.

For a brief moment we were on the other side of that window, tentatively putting one foot in front of the other, fiercely hoping that Ava would never have to fight this battle again.

Somehow, we are back on this side. But, somehow, it is well with my soul. Because God is good. We will stand up. God is good.

Ava didn't know I was recording her, hence the blackout. These were her words in the middle of the night while running a fever. #sheteachesme

Ava sleeping her pain away.

Last night's star gazing adventure before the mosquitos forced us inside. Ava said, "Aww, this was so much fun."

"Mom you remind me of me." - Gwen
Truer words were never her.

Jude taking some of his first steps. His punishment for not walking until 16 months is to wear spandex pants that are stitched together at the thighs. #therapypants #helearnedhislesson #flylittlebird

What happens when you have an aunt and uncle who are both nurses...#squeakyclean #getthosegermsout

There is a plaque right next to this window labeling it the "window of hope." It truly is just that.


Robin Luckenbaugh said...

What a beautiful and painful testimony you are sharing with us. I am praying for your precious, precious family. May you walk this narrow road sensing Christ's presence in each step.

Anonymous said...

There are no words to express the pain you are feeling, and yet you find them!
No matter what faith we all are, there is one God and HE is good

Anonymous said...

Dear Esther and Mike, been quiet but never stopped thinking and praying for all of you and particularly Ava. "But the Lord stood with me AND GAVE ME Strength " 2 Tim 4:17.
love, hugs & best wishes, SK & Jeff.