Thursday, March 3, 2016

Update

We met with the doctors today to talk about the results of Ava's scans. We learned that the disease is widespread in the lymph nodes of her head, neck, armpits, groin, and in her chest, thorax, and lungs. The most concerning area is the tumor that is growing in the Thecal sac which threatens to impede her walking and ability to control her bladder. We will be looking to radiate that tumor immediately. 

We don't know how the cancer spread so quickly...it was contained in the marrow but somehow spread in extramedullary sites totally under the radar. We are shocked and grieved and angry and confused. But the doctor told us that we made the best choices we could for her minute by minute. I know the million dollar question for us is "would this have been different if we treated earlier?" He told us that there is a chance we would still be here having this conversation even if we had done chemo right away. Leukemia cutis is really that aggressive and ugly and insidious. There really is no way of knowing what could have been and the hardest thing for Mike and I to do is to forgive ourselves for missing the signs.

Without immediate treatment, we are looking at only one to two more months with Ava. She would die from her major organs being compressed by the leukemia. And I can't believe I am typing this disgusting sentence out.

So we are choosing to treat aggressively with chemo. The doctors will reassess with another PET scan at the end of this chemo cycle. If the disease does not respond, at that point, they said it means that the cancer is terminal and they will likely suggest stopping treatments. We could go down in flames while we treat or quietly hold her hand as the cancer chokes the life from her. It is up to us, they tell us.

For seven years I have made choices for her about what she ate, what she wore, what schools, what shows, what shoes, what activities and each of these choices were made with love to see her thrive. How then can you ask me to choose how she will die? 

We will do it though. We will choose to watch her lose that gorgeous, hard earned hair, in clumps and strands. We will subject her to transfusions, chemo, radiation, neutropenia, side effects, and possibly toxicity, all for the chance that she might live and breathe and grace us with one more day. The statistics of her reaching remission is under 20% and then to stay in remission even with a transplant is under 30%. These are just numbers but they are really messed up numbers. To think that our children can die is so wretched that my heart physically feels like it's tearing.

I spent the majority of last night vomiting up my dinner. I kept throwing up and throwing up as my body rejected this awful season of life. It's like knowing that you are scheduled to drown in 3 weeks and you try to anticipate it, to feel it so that you can prepare. But nothing can get you ready to experience your throat closing up, your lungs to burn, your heart to panic, your nose to sting. And the merciful thing would just be to die and to pass from this temporal pain into eternal glory yet the impossible thing is, we do not die. We just sit in this perpetual pool of sorrow drowning each day with the weight of the pain.

I want to die. There, I said it. I think of Ava passing on to heaven and how glorious it will be but also how sad it will be to send my tiny 7 year old on a journey so far without my hand to hold hers. She's never even been on a sleepover. She has yet to spend a night apart from us. And yet, we may be called to let her travel the expanse of the skies, so far from our reach and our embrace. It seems wrong to let her go. And if she must go, isn't it only right for one of us to go too? At least one parent with each child has been our motto as we journeyed down this stupid cancer path. To think we must break that pact...I want to scream. No. Stop. Please stop this madness, Lord. Please, please make a way. How will we behold her bed, her things, her books, her toys, her bike, her clothes, her bear, her notes, her videos, without wishing for death so that we can hold her, talk to her, have her near? How will we drive back to Seattle without sobbing as our eyes glance back at her empty car seat?

But, oh, to know that the Father weeps with me. To know that He is not aloof and afar but on the floor holding back my hair, one palm on my back as I weep and surrender and scream and fight. This is to know peace. He is at the helm. We will keep Him there. 

After the appointment, we came home to eat dinner and gather our things before heading back to the hospital for admission. Mike and I cherished the few hours knowing that our life is on the cusp of changing so dramatically. It may be the last time for them to play while Ava still has hair and feels healthy. Once admitted, we will begin the difficult chemo regimen that will probably make Ava feel miserable and weak. So it was sweeter than anything to see them run and play and find joy in each other. Ava cried while Mike strapped her in the car seat later that night because I had to stay behind with Jude and Gwen. Ava cupped my cheeks in her little hands and told me, with the saddest eyes, that she did not want to leave me because I was the love of her life.

There is this phrase I say to her in Korean all the time, 끝까지 사랑해. It means, I'll love you to the end. I say it to her often so that she will never doubt that my love will stay for her, it will go with her. In the same way, I will pray until the bitter, bitter end that God would save my girl Ava. And He will. For we know this earth shall pass away and we will meet again one day because God made a way. It is only for that reason we can say, "Oh Death, where is your sting?" For though weeping may tarry through the night, may the Lord, Himself, bring the joy in limitless measure as we abide in Him and trust in His unfailing love.

My prayers have been short and to the point. They have been breathless and strained. They have been screamed and whispered. I find myself, not asking, but demanding that the Lord be good. 

"FATHER, YOU BE GOOD TO US." I have pleaded on countless occasions these past few months. Maybe I am wishing to be struck down but, really, I am just a child asking her good father to be true to His nature. I am on the ground, a teeny thing, wanting His goodness to look a certain way but He is above and beyond and willing to let His goodness flow. If only I would trust that even if it doesn't come the way I expect, it will come.

Please pray for Ava.


49 comments:

Anonymous said...

Praying from Germany...

Unknown said...

We are praying for sweet Ava. Please stay strong and hopeful that God will make his way. Amen.

Anonymous said...

praying from San Antonio...

Kathy said...

Praying for you, your family and Ava - May God grant you peace and grace through this journey. <3

Jill said...

Prayers of peace for you all. I saw your blog shared today for prayers you have mine. Cannot imagine your journey but know it will be a journey of endless love.

Janice Lee said...

My heart is so broken and desperately in prayer with you.

Unknown said...

Praying for your precious family from Arizona

Unknown said...

Prayers from Houston. May Christ's love and peace envelope your family.

Anonymous said...

Prayers from Denver. Christ is right there with you and your family. May God wrap Ava in Him.

MD said...

Praying for you Mrs.lee, the family and especially beautiful Ava. My prayers and thoughts are with you in this difficult time.

Hugs and kisses from the Delgado family

Anonymous said...

Prayers for Ava and the Lee family.

Anonymous said...

A mutual friend has been sharing your blog. Thank you for sharing your heart with us. I am a grown man crying at work right now thinking about Ava and your family. Dear Ava has a piece of my heart today and I will pray for her.

KC Ye said...

Praying with an aching heart from Orlando...
Love, KC

just Erin said...

Prayers for your entire family and your beautiful Ava. My mommy-heart weeps for what you are going through. God's peace to you and praying for His intervention.

Pastor Ben said...

Prayers from St. Louis. thank you for your willingness to allow all of us into this painful journey so that we can lift you all up in prayer. Tears were coming to my eyes reading and thinking of you guys and it does just move me to pray more. God's presence and comfort continue to be with you

Anonymous said...

My heart hurts so much as Im reading this. We are praying for your sweet angel and your family.

Sue Spreckman said...

Praying for God's grace.

Jeremy said...

Sending love and hope from Chicago.

Prayers from CA said...

My mommy heart aches with yours... You are in good hands surrounded by good neighbors (my parents live right next door ;)) & will be deeply loved & cared for. Praying for you & your family.

Cathy said...

Sending love and prayer Ava's way. Thank you always for being so open and sharing with us.

Ann HisGraceToMe said...

Praying for courage, wisdom and peace for your family.

Anonymous said...

May you find moments of peace on this most difficult journey. Ava is such a treasure and I will pray for her and family

Anonymous said...

Praying from Boston

Biljana Barbir said...

Praying for Ava and your family. You are in my prayers nightly. May you find peace in your decisions as none have been easy but all have been made with love and hope. Praying for Ava.

Anonymous said...

I came across this article. I am sure Ava's doctors are aware, but wanted to post, just in case.
https://www.theguardian.com/science/2016/feb/15/cancer-extraordinary-results-t-cell-therapy-research-clinical-trials?CMP=share_btn_fb

Sek Pang said...

I have been praying Ava for such a long time, I can't imagine how you felt at this moment. When my second son was born, he had been going through a lot of health issue, I still remembered when he was in the intensive care room, his whole body connected with so many tubes, all of sudden the next room a little baby passed away, and next thing I heard the baby's mom was crying loudly. At that moment, even though I had not knowing Jesus yet, but I prayed to our father, if you want my son live you can, however if you wanted him to die, I have to accept because you are the creator, at that moment I totally surrendered my son to him.
Til today he is growing up as a teenager 19 years old, still he is learning disability, as a mom I constantly has to care about him.
But I always know that the reason we are here is truthly grolify him.
I can totally relate the pain and sorrow that you have, but I believed our father also know it all...he knew how pain and suffering Ava has been going through,may be he wants her no more in suffer. Sorry to say things as this way but I believed our father has a plan that we are not able to see....



Tasia Bradley said...

Praying from Minnesota. I attended church with Matt & Jen and saw your blog. Sweet Ava is in my prayers. May the Lord be merciful to her.

Pastor Eric said...

Eric Forsyth, praying from Maryland.

Anonymous said...

Ava is my hero; her courage and perseverance carry me and lift me up in ways you will never know. I'm praying hard for you Ava!

Anonymous said...

Thank you for sharing and please stay strong. Praying for sweet ava and the Lee family from San francisco.

mags said...

Send you big cyber hugs and love from Chicago!! Please tell Ava I love her😘

Leslie said...

I don't know you at all, but tonight I took my son to Starbucks for a "date" because he's almost 7 and my heart is weeping just thinking about you, your family, and your sweet, sweet daughter. Thanks for sharing this and reminding me that at any moment the tide can turn and the time we have been gifted with our children is short no matter how long it is. I would love to send something to your daughter -- if you feel like it, please email me at leslie@limelifeplanners.com with your address. I want to send along some little notebooks that she can write in (maybe during treatments?). Praying God's peace over your family and that God would work a miracle in your little girl.

Hans Sun said...

The Lord bless you and keep you; the Lord make his face to shine upon you and be gracious to you; the Lord lift up his countenance upon you and give you peace.

Anonymous said...

May God be with you all in this difficult journey!

Anonymous said...

I have been following Ava's story since the beginning. I am heartbroken to hear of the mountain in front of her, yet I will pray that He will carry all of you on a path through this mountain and out to the other side. You are an amazing family and I hold all of you in my prayers.

Peter said...

Our hearts ache with your hearts, but Lily and I are praying that God would comfort Ava and bring your family a peace that surpasses all understanding...

Anonymous said...

Crying out in desperate prayer from Illinois for your family right now. <3

Anonymous said...

Our hearts are with Ava and we send our prayers to Ava and family. We pray for the Lord's mercy on the little Ava.

Anonymous said...

I was left speechless after reading your update. There are simply no words to express the pain and heartache we are feeling for your family. We prayed together tonight for Ava and for your family. Then again during bedtime prayers. We will continue to pray.

Anonymous said...

Prayers from California for you, Ava, and the rest of your family...I am so sorry for all your family is going through. Thank you for opening up about your life and reminding us about the love of God.

Anonymous said...

May the prayers being rallied by the body of Christ around the world give you a moment of peace and rest. i pray a huge measure of grace fill you. Your story reminds me that if we can love our babies like this, how much more the Father did love His Son. I pray He will keep filling your mind with good, hopeful, promising words and the HS will be ministering to you unceasingly. Father please have mercy on this family!

Anonymous said...

I can't imagine what you are going through. I am so humbled by your strength and trust in God. Praying for little Ava and your family.

Greta LaMountain Biagi, Esquire said...

Mama, there is nothing to say after reading your words, so horrifying and profound, so exquisite. You and Ava have captured my heart and will be on my mind and in my heart.

David Yoon said...

Praying and sharing this from Chicago. Much love Ava!

Lorette said...

Prayers for Ava and her family!

Anonymous said...

Oh Ava! My heart is broken...I pray for you.

Anonymous said...

Praying from Chicago

Anonymous said...

Thank you for your raw honesty. "I am just a child asking her good father to be true to His nature." I will be praying the same with you.

Anonymous said...

Prayers from OHIO. May God grant you peace that passes all understanding. I'm sorry you have to go through this. God is holding you and this pain is temporary. Keep your eyes on Him.