Monday, May 23, 2016

This Is Where We Are

It's so hard to write. I've tried for many nights to get motivated to update on Ava but each night I'm so exhausted that I'd much rather curl up next to Ava and sleep.

But tonight I felt a nudge from the Holy Spirit to wake up and write. I was inspired at 3:00 a.m. after taking Ava to the bathroom. Here I am now, though, just looking at this cursor blinking away and all this white space left to fill and it reminds me how impossible it will be to live the rest of my life without her. Pages and pages of my life are filled with Ava's presence. Her life intersected mine after 28 years of living without her and, yet, it seems our story would abruptly end if she no longer held a part.

We are in the worst of a vicious sandstorm. I want to open my eyes and see what is happening so that I can cherish this time with her. Because even though it is stormy, she is by our side and I don't want to miss a thing. But I can't. The sand, it burns. It stings our eyes. There is no escaping the tiny rocks pelting us and reminding us that we are not safe; there will be damage. It's impossible to see from the tears. Still, I want so much to stand in this storm and know joy for the sole reason that it may be our last time together. 

Everything is done with this reality. This may be our last summer together as a family of five. This may be the last bike ride, the last time running through the grass, the last time swinging on these swings, the last time playing doctor and building legos and reading books, and... Every night, I breathe her baby scent in deeply and try to memorize every detail about this little girl. 

I pray that she gets to celebrate her birthday in August. I plead with her in my heart. Don't go in the summer, baby. It will be too painful to face any more summers of laughing, splashing, icecream eating children without you here to enjoy the same. Don't go in the fall, baby. It will be hard to see all the children starting school, another year older and taller, while you are forever seven. Don't go in the winter, baby. It will be wrong to celebrate Christmas without you next to Gwen and Jude delighting in the wonder of the season together. Don't go in the spring, baby. It will be too much to see the flowers bloom and things come to life knowing you are gone. 

Don't go, baby. Please.

We celebrated her birthday this past Saturday. Since we didn't know what her situation would be like in August, we decided to have her party early. She wanted a tea party and I was so thankful for this opportunity to plan for something, to look ahead for once. It was life-giving to see her enjoying her friends and playing with abandon. Thank you to everyone who came to wish her a happy birthday and to celebrate the life of our precious girl. 

Ava is having more pain at night and throughout the day. This is a new development but we are keeping her comfortable with pain meds. There are more tumors inside and outside of her body. We are fighting with everything we have, but the doctors say there is not much left to do. We can try Mylotarg but it will be intense. It will leave her in the hospital for a month. If we only have but a few months, how can we ask her to spend it tethered to a pole? And yet, if we do nothing, she may decline even sooner. We are stuck between these choices that cannot be fair. How do we choose?

Yet somehow Mike and I have been making decisions, leaning on each other when it's too hard to stand. We process things so differently but our hearts beat together for this child. With Ava's help, we have decided to stay in Chicago for 3 more weeks, and begin radiation in hopes that the leukemia on her skin will respond to that. She will also start high dose steroids to try to suppress the disease while pursuing radiation. Ava has asked for more time before going to Seattle to start Mylotarg. But eventually it is in our plans to try this last ditch drug to see if we can eradicate the tumors on the inside so that she can go to transplant. 

There is no right answer. There never has been with her disease. The doctors can't say much about how to treat her but they know, for the most part, she has responded best to ALL therapies. Now that we are out of options with those, we are moving to AML directed therapies with the knowledge that she does not respond as well to them. Mylotarg is an AML therapy and that is why there has been hesitation and doubt regarding its efficacy. But we are straight out of options. We have been told that we can go move to hospice and try palliative measures or we can give Mylotarg a chance. The hope is to get to second transplant because it can be curative. The transplant team will not take her unless every single tumor is gone. Donor cells don't stand a chance against extramedullary disease and the team wouldn't put her through a second transplant unless they felt she had a fighting chance. If all fails, we can try phase 1 trials or we can bring her home to rest easy.

So this is where we are. 

You, Mike, and I, we have given her much. She has known joy, laughter, and good things. I constantly ask if she is a happy kid. She always tells me that she is. Yet, she is scared. She's not afraid of where she is going but the idea of being separated from us is far too much for her seven year old heart to handle. Every new bump, every new pain, has her looking up to me with concern. "Will I be okay?" she asks me.

I can't ask for much, knowing that we have maxed out on all of our favors. You have been by our side through the worst time of our lives. You have poured your love out as an unending and beautiful sacrifice before the Lord. You have been our lifeline, keeping us above the waves that won't stop crashing down. But if you would allow me one last request, we humbly ask that you have hope for Ava. Help us give her hope by donating to organizations that directly fund research for childhood cancers. One of the most painful things is knowing we are on the cusp of finding a cure but it might be too late for Ava. Donate your blood and platelets to keep children like Ava going when chemo depletes them of these things. Pray that God would infuse hope into this desperate situation. Hope with us that this dark night would end, and the sun would rise with healing in its wings.

I don't believe that God is holding out on us until we have a more contrite heart or until one more person prays. No, I believe God has the best in store for us. I believe that His plans are good even when it doesn't look that way at first. I believe that He has the final word in all situations, especially life and death. So we look to Him, keeping our focus on His word and His promises, anticipating His goodness to flow down into the deep cracks of our devastated hearts. 

In the meantime, I reserve my sobbing for the car, the shower, the aisles of Target, for any moment when she is not with me. This is my gift to her. She will not know the grief that we suffer because she has already suffered enough. If she knew how hard this was on us, even if the time came for her to go, she would hold on with every straggling breath. So we will show her that we are brave, that we can go on, that we will be okay, even if it won't be the truth for a long, long while. 

She looks up to me with her beautiful, brown eyes, tears streaming down, and asks for help. "Mama, please, help me," she says when her pain is out of control. And my insides shrivel up and die because I am unable to fix this problem. I have no control and it makes me crazy. It undoes the unspoken pledge we have made as moms, the promise to protect our children from harm. I want so much to make things okay, to promise her that she will be fine. But I am painfully helpless to help.

Father, please, help us. Only you can make a way, where there is no way.

Feeding the baby with the classic "open your mouth" expression. And there's a sharps container in the background...on the floor. #suchisourlife

Family Dinner! Thank you to Mike and Gwen for really making it a great picture! ;)

Ava thought these were hilarious!

Accompanying Ava on her first school field trip

Passed out on the bus afterwards

One afternoon, Ava had the idea to sell lemonade. "Let's sell lemonade and donate the money to find better treatments for kids with cancer, less painful ways!" she said. 

Our very first customers, who also happened to be our awesome neighbors!

Through the help of our community, we raised $186.88! All the proceeds went directly to Allistaire's Obliteride Team, Team Baldy Tops to obliterate blood cancers, in memory of Allistaire.

Ava standing with the very best school principal, assistant principal, and librarian a kid could ever ask for!

With Dr. Moreland and Mrs. Schenk

With Ava's first grade teacher, Mrs. Daley

This guy is already 15 months old!!

Ava's tea party setup

The only thing on this table Ava cared about was the fondue fountain

Showing off their Tea party attire

With the lovely ladies

Happy early birthday, my love!

Celebrating Ah-ma's birthday!

Gettin' some love from halmuhnee and halahbujee

Happy Birthday, Ahma! You bring so much joy to Ava!


Anonymous said...

There are no words! Just sharing tears of sorrow and hopefulness that Ava will be free of pain

Amber Peters said...

Ava what a beautiful tea party for a precious princess. I am so proud of you for selling lemonade. You girls really raised a bunch of money. That is so amazing! Mom and dad praying like crazy for this precious little love. What a smile and energy she has to light up any dreary day.

Jean S said...

Your sweet Ava means so much to me although I've never met her in person, because following her story on your blog has helped me keep my eyes on the Lord through difficult times these past couple months. I also started following your friend Jai's blog after you shared her story; two such inspiring mothers and women of God, with beautiful daughters whom the Lord loves greatly. I'm also facing some difficult decisions right now for my 18-month-old son with a serious heart condition. But I have such hope for all our children both in this life and in the eternal one. Prayers, tears and love for you and your family.

M. Lo said...

Thank you for writing, hard as it is to read. God moves through your words, wrenches me abruptly back to what matters, what is important. We are standing wth you and your family. Love you Ava.

Lisa said...

Hello We have never met in person ,but i have been reading your blog for awhile and also follow your friend Jai's blog when you asked for prayer for Allistaire. i too have faced a long chronic illness. I understand the heartbreak of living a life where you appear "different" than others and worry about things that others take for granted. One thing i have learned through my journey is, when I desire to live a quiet contented life, this is when the Lord usually asks me to "live loudly " for him. This is what you are doing by faithfully writing on your blog and sharing your experiences with your precious daughter Ava.I am praying for Ava and for you sweet Mama.I have HOPE FOR Ava.

Anonymous said...

Hello, you write beautifully, you describe so perfectly how this feels and it makes me feel less alone. We are in London, my beautiful son is 5, in second relapse AML, this time last year he had a cord blood transplant, it worked for 9 months. Now, post mylotarg we have nothing left. Our beautiful children deserve so much more. Praying for Ava and my beautiful boy. Thank you for helping me to feel less isolated.

Anonymous said...

Others have said it before, but you write so beautifully. I am so inspired by each of them as you pour your heart out. I am praying for you and your whole family. May God continue to strengthen and comfort Ava and all of you.