Seattle Meals

Thank you for your continued prayers for Ava and the Lee family. There are many unknowns at this point about Ava's current health status and treatment options/best course. Your prayers for God's wisdom to be revealed are especially appreciated.

In the meantime, some Seattle friends are graciously coordinating meals for the Lees. If you are interested in helping out in this way, please contact Amanda at:

There will likely be other tangible ways to support the Lees, so we will share those as they become more clear.

Ava has been complaining of difficulty breathing (though her oxygenation has appeared to be okay at this point), and experiencing some nausea and loss of appetite. The Lees should be arriving Seattle any minute. Ava is scheduled to be seen on Wednesday, though her symptoms may call for a sooner appointment. Your prayers for God's orchestration of Ava's care are coveted. Thank you.

Going to Seattle

Sorry for the delayed updates, here are some Facebook posts from Esther the past couple days:

Feb 27:
I'm thankful for this spring like weather that allowed one more day of bike riding memories. Due to more leukemia cutis we have decided to leave for Seattle on Monday (Feb 29) forgoing our Florida trip and Mike's trip to Haiti.

Thank you God for your small provisions like warm weather in February for one last bike ride with my three babies. Hoping with all my heart that there will be many more days like this.

Feb 28:
Ava just told us that she was stressed out about going to Seattle for treatment.
"Kids shouldn't be stressed out, kids should be as free as a foal running into the sunset," she said.
Last night at home with these sweet girls by my side. Please pray for Ava.
‪#‎cancerkillskids‬ ‪#‎letsfightback‬


Feb 29:
Ava's last day at home. There were some tears this morning as she processed everything. But when she brushed her hair back, she was all smiles as she realized that she looked like her pre-cancer self today!

Thank you so much for your prayers for our sweet Ava. We hope to get to Seattle without delay as Ava has been complaining of difficulty breathing. So we pray that the upcoming snowstorm doesn't get in the way!
#teamavabright

Thank you so much for standing by for an update. 

We just got Ava's results back from her bone marrow biopsy on Monday. The disease in her blood is stable at the moment at .02%. This is very good news and I want to remember to thank God for everything! 

The really hard news is that due to elevated LDH levels, there is demonstration that the tumor burden in her body is now greater. This test is really non-specific but the soft tissue masses in her face and the growing bumps on her head have our doctors in Chicago thinking that this is clear indication of disease progression. The doctor said that it looks like her relapse is behaving like a lymphoma. There is no confirmation but from what she is seeing, the cancer cells seem to be collecting and forming masses rather than going into the bloodstream. I wish I had the answers to the many questions that are running through our heads. We were told that survival statistics are around 10-20%. But, as we know, statistics don't tell the whole story. It will either be 100% or 0% (you make it or you don't) and we really ask the Lord for His favor. 

What is clear is that we need to do more imaging of her body to see if there are any new masses. She will hopefully be going in for a PET scan this Monday. 

Our plans are to leave for Florida (just me and the girls and Auntie Sofi and Uncle Mark) on Tuesday for one last fun trip before it is back to hospital gowns and lines. Our trip will coincide with Mike's missions trip to Haiti. Once we are all back in Chicago around the 8th, we will head to Seattle. We haven't decided if we will drive or fly. We think driving would be a really great family adventure but if time is of the essence, we will forgo all of the stuff I just said and fly out sooner. Hopefully the PET scan will help with some of those decisions.

Obviously there is a lot of logistical stuff that we need prayer for, but most importantly we pray that we would dwell in God's presence and know that He is near. 

We really, really pray that Ava will be well enough to go on this last minute trip to Florida. She really wants to swim in the pools, visit the beach, and go to Epcot (again). 

We could really use prayers that:

1) The growths on her head and in her cheeks are not leukemia cutis. We know this is far-fetched but none of these new bumps have been biopsied and we know that anything is possible. The bump in her cheek actually feels smaller...

2) The PET scan reveals no cancerous masses in her body. 

3) That we would make it to Seattle safely and that Ava would receive all the support and treatments she needs to get better

4) That we would be able to make it to Florida for a fun filled and safe week without worry of doctors, pokes, or disease. 

5) That Mike would have a safe and blessed trip to Haiti and wouldn't be delayed on his way home to us

6) For Ava, Gwen, and Jude to adjust well to the changes. We are packing and planning like crazy and there are only a few normal days left for them. They are playing with each other right now and I am so thankful that they have this time together.

7) All the logistical, financial things would work out for our family as we make this move.

8) For Allistaire, Jude, Madeleiene, Ella Joy, Sophie, Kelly, and any other friends that are fighting cancer at this time.


We are truly thankful to you for your prayers, love and support. We know the love is pouring in from all over the world and we stand in awe of God's provision for us. 

The God of small details

(From Esther, 2/22/16):

Ava was scared today so we prayed that God would take that fear away. Guess who her anesthesia nurse was today?? Her favorite auntie Sue! We see Sue every time we are here but she has never been our nurse until today! Her sweet voice and butterfly kisses helped Ava feel so much better. Thankful for a God who cares about the small details.

Ava is heading into a bone marrow biopsy now. We will never stop praying for the miracle that she would be cancer free. Thank you for praying this with us.

Surrender

Okay, so I've been mad. Like raging, pissed off angry. Last night's shower revealed another leukemic lesion, the second one in her private area. The first one was excised and I cried that this disease would dare infiltrate in such a sensitive place. But now, another is growing right above the first and I feel sick that there is no place that the leukemia would call sacred. It knows no bounds. There are no boundaries to its ugly desire to destroy. More reading of the same articles keep me up at night. It seems no one with Leukemia Cutis can escape from the devastation of it.  

I've been telling God that He has it all wrong. He's got the wrong family. I traced back, looking sideways and under into my life. What was hiding in the darkness that would make him so easily toss us under the bus? Did we have some kind of unconfessed sin? Did we require discipline so hard that he would need to leave scars on us for life? What was the purpose, the reason for this unrelenting trial?

In desperation I called one of my dearest cancer fighting moms. Vent, whine, vent, I tossed my words over the phone. How could this happen? Are we dispensable? Why is He so silent? And on and on. I laid my faith bare. I needed honest answers and I showed my real state of faith-shaken despair.

"Hey, I've been thinking about saying this to you for a while now...From our conversations, I really don't get the sense you have surrendered Ava to God yet," she carefully ventured.

Oh. My. God. She had gone there. She had challenged me in the one area that no one else ever could. But I heard her and my ears turned in toward the loving call. My heart opened up to hear this much needed truth because of where she was telling it to me from.

See, I know she has walked this specific path we are on. She has fought cancer longer and harder than we have even begun to. She has watched her daughter face death straight in the face countless times. She has written tribute after tribute for the friends that her daughter lost to cancer. And I have seen her lay her own girl down with such fierce trust that God's ways are truly, truly far better than her thoughts and desires for her daughter. She is only a month or so out of a second transplant, a miraculous journey that we have had the privilege to witness as we prayed alongside thousands of people for her. The road to healing will be long and the fear of relapse constant so please join me in lifting her up before the good, good Father.

It seems that at least half of Ava's life has been spent on a hospital bed, laid out in a most vulnerable state. We've had to lay her on a cold hard table many times leaving her to the mercies of the radiation machine, hoping and praying it would only target the bad cells and not bounce into the innocent and clean cells everywhere else. And then I think of a day that may come, when I might have to say goodbye to the shell of her being, laid out on a table in a similar fashion except with no ability to return safely into my embrace on this side of heaven.

I wonder if Ava's story has to unfold in this exact way so that many hearts would turn back to the Father. I confess that I am reluctant to give Ava over to God to be used in this way. In desperation I plead to God to spare her, even if it means that many won't hear, and taste, and see that God is love and that He is good. There are all these faceless and nameless people that I imagine benefiting from the fate of my girl and I want to scream. But, I am wrong, so wrong. Who am I to tell God how He must work and who He is allowed to use? We were all created for His glory. The End. He loves us with abandon but He is also the one who will allow what He will allow, as our stories are woven into His perfect one. And this is where our faith will be tested in the most fiery of ovens.

I am thankful for my friend speaking into my life when I am in my deepest pit. But who knows if it took all the hell that she has been through for her to be able to say truth and for me to accept it from her. I needed those words to set my heart straight and refocus my sights on Him and she was the only one to be able to say it. Was it for moments like these that she has had to endure such unspeakable things? I am in a place of humble recognition that I am one of the nameless and faceless ones benefitting from the wisdom she has gleaned from such low places. Lord, thank you that no one is nameless and faceless to you. Your love seeks out ways to bring our wandering hearts back. Remind us that you have something you are working out, something that we know not and that our finite minds can not fathom.

To top it all off, my sweet friend reminded me that if it is true, if we sincerely believe what we profess, then there is no simpler, no sweeter thing than to yield Ava to Him. He is the one that loves her more than I ever could. He is the creator and the sustainer and the finisher of our faiths. And though it seems crazy to put up the white flag of surrender, I am not afraid of who I am giving in to. He is the good and loving Father. And there is no one I can trust more with her life and death than Him.

Please pray that our faiths would increase at a time when faiths can become fragile and crack from the heat of the trial. We aren't sure of our next steps but we continue to seek Him out. We thank God for His never-ending love and patience as we fumble our way through. 

Update

Ava had a CT scan done of her face yesterday showing 3 soft tissue masses in her cheeks and chin.

Today, she is happily playing, eating fried rice, and watching Netflix. We don't know what tomorrow holds and it hurts like hell to imagine a world without Ava in it. But we have chosen to take things day by day. 

Yesterday, I held Ava down while they poked her 3 times to get a good vein. She struggled for so long, crying out for me to please, please make them stop. When all was said and done, she looked at me and asked me why I would allow them to hurt her like that. She told me she won't struggle anymore because it's useless. We are much bigger and stronger, she says. And with resigned, tearful, eyes she cuddles into me, the same mom who held her arms down while they poked her again and again.

The doctor walked in a few minutes later to tell me that her opinion is the same: Ava should begin treatment immediately. There are no guarantees, she may die in the process, the disease will likely come back. She tells me all this with a straight face but still insists and insists that this is the only way for a chance at survival. But what is life? Is it just breathing and existing, tangled up in a mess of tubes that protrude out of the body that assist the back and forth of chemicals into her blood, damaging her heart, lungs, and organs? Or is it more than that? Is it laughing, and playing, and opening up her eyes like she did the other day to say, "Oh, I feel so good today, Mama!" Is life just your heart thumping rhythmically or is it the joy of stretching out next to your sister anticipating another day of putting your baby brother in a toy crib and running him around the house? 

I told her this with equal fervency. She has one piece of the puzzle where the medical urgency pushes her to give treatment despite any of the negatives. And I hold the other piece, where I see my first born child, now a little girl, asking for one more day to wake up in her bed, in her house, with her family. She is old enough now, at the age of assent. "It's my life," she sometimes reminds us. It's true, it is hers but it is also ours because she has been given to us to love, to protect, and to nurture. There truly are no separate entities here. We are so, so tied up together, five hearts beating in sync. If she dies, a part of us will die too. We are too selfish to give her up so easily. Yet we know, that she will gently guide us. 

We look to you, Lord. Give us the clarity and the fortitude to walk forward without regret. We don't have to say much for you to know that there is actually no way to say it at all. Our souls cry out in deep agony, with moans no words could match. 

And to everyone who faithfully reads our blog searching to know how we are, how you can help: we want to thank you for the tremendous support and prayers. Not a day goes by where we don't feel moments of peace that we believe are a direct result of your sincere prayers for us. Will you continue to pray for a miracle for our girl, Ava?

Ava calling out "ACTION" for our interview with Cal's Angels.

Playing side by side...with Jude's toys. What the heck, girls?

This is their new torture toy for baby brother

Nobody cares that Jude is not having the time of his life

And, another toy that will now be used to torture baby brother

"Save me from these crazy people!!!"

Happy Birthday, Jude. I think he has given up on being happy.

Dressing up for Jude's birthday is, again, not thrilling for him

Happy Birthday, Prince Jude

Eating his cake all chill

It was hard for me to post this picture because I kept judging myself for all the stuff in the background. Don't judge my messy life. 

I love that Ava's half birthday falls on Valentine's Day. We celebrate the love of our family, the life of our daughter, and the hope that we will light candles on her birthday cake in 6 more months.

The aftermath of 3 pokes. Mom-guilt for holding her down. Ava-guilt for kicking and screaming.

Thank you, Uncle Jeremy, for "small, cute things!" It was a happy way to start the day!

Hope Is A Box Of Diapers

We are almost out of the diapers I bought from Costco in December. I remember hesitating before picking up the 180 count box. The marrow relapse in Seattle was so jarring and disorienting that simple life decisions weren't so clear anymore. It was true that Jude needed diapers but I wasn't sure if I should just buy a smaller pack at Jewel. It felt safer to stick to smaller amounts...in case we would have to pack up and move our lives back to Seattle. In the midst of such huge decisions we needed to make regarding Ava's care, this diaper thing totally stumped me.

I decided to buy the larger pack that day, but I doubted we'd get through them. Finishing the box would have meant that Ava had been healthy enough to live in Chicago for at least 6 weeks. This would contradict what we were told when we left Seattle, opting not to treat her immediately. Our intention was to come home to celebrate Christmas before heading back west to begin intensive treatment for a disease that would likely return. Our doctors were wonderful and gave their full blessings but not without the warning that this choice could significantly alter her options if the disease progressed quickly while we were home. But with trembling hearts, we put our family back on a flight to Chicago because we needed to do right by Ava. Sometimes making the right decision can look so wrong to everyone else. But we knew that blindsiding Ava by turning a trip to Seattle into an extended stay with no end in sight would have broken her spirit. So we came home, we relished the familiarity and we continued to pray for clarity. Then one bone marrow biopsy after another showed that the disease was somehow being held back from overt relapse.

It's now February and I just bought another Costco Supreme, size 4, 180 count box of diapers.

Hope is...buying and getting through a Costco sized box of diapers.

I should probably end my post here. Because the truth is, my hope is still so small. I wish I had more. I wish there was so much that I wouldn't lay awake at night crying into the pillow fearing her death. I wish there was enough to cover me during the day when I brush her hair and tie it up for the first time in two years, only to imagine it falling out and this time not being able to see our promise fulfilled-that she will live to tie it back again one day. I wish there was enough hope that all the sickening statistics that tell me that my girl will die from this wretched leukemia cutis, won't send me into such depths of sorrow. That as I touch her head and feel one, two, three bumps that are suspect for more LC, I wouldn't want to simultaneously puke and scream and cry. I wish it wouldn't wreck me to know that this aggressive leukemic clone may not stop growing on her skin and will threaten to reseed her marrow again and again and again no matter what we do to stop it.

We see her running around, finding joy in this and that. It is so so hard to believe that her body is turning on itself, determined to self-destruct, forgetting that its sole mission is to keep her alive. And we are humbled, heads bent low to the ground, knowing that we are powerless against what rages in Ava's body.

I am usually awake at night between the hours of 2-4 a.m. I want to say that I'm praying and it looks pretty but it's more like silent wailing, ugly crying, asking God if my fears are true, that we are somehow dispensable to him. That somehow in this whole transaction he forgot that we were still balancing between light and dark, mere fragments of who we were when we began. Did he leave us hanging in our fragile state simply because he forgot? Ugh, I know it is lies and more lies but as I hold my child close in the night wondering how many more days we have together, it is not difficult to be utterly lost.

We went to the radiation oncologist today hoping to hear that we might be able to push back against the leukemia cutis by targeting radiation just to her skin. Instead, we came away with the knowledge of the horrible side effects of radiation. One being, literally burning away her sweat glands to leave her skin completely powerless to moisturize itself.

"Do you know how it feels to have extremely, flaking, dry skin in the winter? Imagine that for the rest of your life," says the kind, well-meaning doctor. Oh my God. What have we done to you, sweet Ava? We have left you infertile, growth stunted, and now our hand is pressed against the choice to ruin your skin, your beautiful, soft baby skin. When you make it through this, will you wish we had made different choices for you, precious child?

We also left with the recommendation to immediately image the bump on her cheek that I had been eyeing warily for the past week. I know Ava so well. My eyes scan her from head to toe every morning and I poke and prod hoping to come across nothing in my daily checks. But recently as I looked at a picture of her smiling wide for the camera, I saw it. "There, right there. Do you see it?" I asked Mike. "It's so subtle but the rise of her cheek on one side is different from the other," I explained.

"Yes, I see it," remarked doctor after doctor in the past two days. Ugh, ugh, ugh. It is not good, not good at all. I will not go into details about why because I'm just so tired. But we need prayers that it would be something simple, like an impacted tooth. And not another leukemic growth inside the bones of my girl's lovely face.

She had been talking about how excited she was to watch the assembly of the 3rd graders singing. Of course, timing would have it that when I picked her up for her doctor's appointment, she had just sat down to begin watching the show. She fell asleep in the car with tears streaming down her cheeks that she had to miss it. The very next day was her Valentine's day party and her face fell when I told her that she needed to go with us to the radiology consultation. She looked up with tears forming again and told me it was okay because there would be other parties to go to. And I wanted to run out of the house and scream up toward the heavens that this was more than our hearts could handle. How much lower must we go before we can unbend our knees and tilt our faces up toward his face shining on us?

Ava wanted to join an after school club and she excitedly told me all about it. She had me fill out the paperwork and attach the check. I did it willingly as I saw her surge forward with such radiant joy. We were turing in her paperwork kind of late. The thought of her heart potentially breaking when she found out that the club was filled, prompted me to tell her that there might be a chance that she wouldn't get to join. I wanted to buffer the blow, just in case. I knew it was a mistake when her beautiful eyes turned down and she quietly said, "Mama, I wish you didn't tell me that. I just want to believe it will happen and if it doesn't, I can be sad then."

I can unintentionally be an unbelievable a$$ at times. I profusely apologized but not without being totally schooled by her again. She teaches me things that I should know by now-things I should be teaching her...like how hope moves beyond what should be and reaches for what could be.

She made it into the club and I'll never forget her squeal as she turned to me and said, "See, I just knew I'd make it!"

I am hoping, against all hope, that we will look back at all this one day and say the same thing.

Door to door service

It is a joy to see her grow

Sitting with the help of daddy

Sad to be missing out on school the Valentine's Day party

Dr. John-one of the kindest doctors we have ever met

We made it to the party!!

These are the best years of my life

I can not even handle the cuteness

These two.

This family makes my heart soar (We love you too, Jude! It's just that you had to nap...like every time we took a picture)

With my love, Ava

Hope...is going to school even with leukemia lurking in your bones. It's learning your math facts when you don't know if you should even bother. It's tying your hair up for the first time in years not knowing if you'll lose it again.

Hope is many things. Today, hope is living life with the courage to look forward.