Sunday, March 16, 2014

Allow me a moment...

This post might be depressing, but please allow me a moment of anger, frustration, and complaining. I know the moment will pass and the peace will return but tonight I am in a pit of despair...just wallowing there. 

Ava had a difficult day with a lot of pain from the chemo and high fevers. I spent most of the day in bed with her as she battled through leg, neck, and chest pains. Mike took on Gwen-duty because Gwen had been expressing fears of abandonment lately. 

For this hospital admission, we were given a room with a spectacular view of Lake Michigan. During a rare pain-free moment, Ava and I climbed onto the couch and looked out over the waters. There was a full moon out in the middle of the day and so we began to count the airplanes that were flying close to it. 

Me: (looking up at the clouds) Ava, where is God?
Ava: In heaven?
Me: Actually, God is all around us. Not just in heaven.
Ava: Oh yeah, God sent his son Jesus down to earth. That's my favorite verse in the bible. 
Me: Why?
Ava: Because it shows he loves us.
Me: Where is heaven?
Ava: Way up there. (pointing past the clouds) But I'm scared to go to Heaven alone.
Me: Ava, in Heaven a thousand years is like a day. No matter who goes first, we won't have to wait long for each other.

And then we were distracted by another airplane flying close to the moon. But my biggest dismay is this: that I might have to send her alone to heaven. 

It seems like a long and serious journey and it's against every parent's natural instinct to wave goodbye as their child departs from them. I know it's irrational to think she will be scared because in heaven there is no more pain, no more crying, no more suffering...but the idea of my little girl being apart from us seems so wrong. Before her diagnosis, Ava would often ask if we would ever ever leave her. And we always answered that we never never would. The fear of losing Ava is strong and the possibility of not being able to fulfill that promise is crippling. 

Last night, Mike had a conversation with Gwen that was incredibly sad as well. I had not seen Gwen since we were readmitted to Lurie's the same day we had been discharged. As we ran out the door to take Ava back to Lurie's, Gwen screamed from the door, "Mama, please don't leave me. Please..." This feeling of abandonment must have overtaken her because when Mike went down to play with her the next day, she would not let him out of her sight. After a few hours of playing, she initiated this conversation with him.

Gwen: Daddy goes to church and Mommy goes to school everyday so nobody gets to see Gwennie.
Mike: Oh Gwen. That's not true. We are at the hospital for Ava because she is sick.
Gwen: Oh. Well, after we play, then are you going to leave me?
Mike: No, today I will stay with you.
Gwen: Oh. Then tomorrow you will leave me.
Mike: No, then tomorrow mommy will stay with you.

And with that, Gwen bounded off to play with some security in her heart. It is with incredible guilt that we attempt to balance our time between our sick child and our healthy one, knowing that both are delicate and need the love and attention of their parents. God help us to give them what they need despite our significant limitations.

Tonight, I took Gwen to the Water Tower so that we could spend some time together. I didn't realize how much of an impact it would have on me to walk through the same stores that I had gone to with the girls when Ava was still healthy--a mere two months ago. As Gwen and I built Lego people inside the Lego Store. I ended up weeping right there on my knees and we had to leave. 

The thing is, I can see Ava everywhere. She has left a thumbprint on every part of my memory. The fact that just two months ago we were a healthy and happy family and that today we are praying for a miracle for her life is surreal. Every step that I took outside of the hospital today required effort not to collapse and beg God to take this all away. Because if God's promise is that he will bless those that love him from generation to generation, what is going on right now? I continue to meditate on the truth that God's ways are higher than our ways. And my finite mind can not begin to understand his infinite wisdom and grace.

And although my faith is not shaken, I stand at the bottom of this mountain and look up with shaking knees. If it only takes a mustard seed of faith, why hasn't this mountain moved? Why is the bad news being piled on us to the point of suffocation? Why is it that we can't get up for a breath before the next wave of uncertainty sends us reeling under?

It is foreign for me to have so little hope to cling to. He has saved me time and time again in the past and yet lately, he seems strangely silent. And I continue to ask, how much more can we endure? So this is the timeline that I have put together in my anguish. 

Feb 26 around 6:00 p.m. - Ava gets admitted to the hospital for a wound that would not heal. She is no stranger to hospital admissions and we casually get settled for what we think is another typical hospital stay.

Feb 26 around 10:00 p.m. - Two residents enter our room to say that Ava needs to have her blood drawn again. There must be a mistake, they say. Her white blood cell count is very high but most likely it is an error.

Feb 26 around 11:00 p.m. - Those same residents lead us into a small family room to tell us that Ava has Leukemia.

Feb 27 - The oncologist meets with us and tells us that we have nothing to worry about. Leukemia is a common childhood cancer and although it sucks to have cancer, we will beat it. He assumes that Ava has ALL because it is the most common type of Leukemia.

Feb 27 (later in the afternoon) - Ava's scheduled bone marrow aspirate is delayed because they have found a mass in a gland near Ava's airway. They are afraid that sedating her will cause the mass to possibly make it difficult for her to breathe. However, she has enough blasts in her blood to send to the labs for a diagnosis.

Feb 28 - Another oncologist visits our room in the morning to regretfully inform us that Ava has AML (Acute Myleoid Leukemia) and that prognosis for survival is 50% with a possible need for a bone marrow transplant. We immediately prepare to transfer care to Lurie's.

Feb 28 (later in the evening) - We meet with Ava's oncologist at Lurie's who reiterates what she has heard from Lutheran General about Ava's diagnosis of AML but that there is a need for further study of her blasts. Her white blood cell count has raised to 90 some thousand and there are close to 99% blasts (or cancer cells).

March 1 - We get a call from the oncologist that, actually, the lab reports have come back to reveal that Ava has a very rare type of cancer called Mixed Lineage or, otherwise known as, Biphenotypic Leukemia. Lurie's sees about 1 case like this every year or so. She assures us that she feels like this diagnosis, although it is known to have a poor prognosis, can have a good outcome if we begin treatment with ALL therapy. 

March 2 - Ava begins ALL treatment. Her WBCs spike to over 100,000 causing her oncologist to immediately stop treatment fearing that more treatment could cause breathing problems and changes to Ava's mental status. Ava is switched to AML therapy and Gwen is sent to have her bone marrow tested for a match.

March 12 (early morning) - Ava goes into anaphylactic shock to her platelet transfusion. She is given an epi and doses of other medications that bring down the reaction. From this day forward, her eyes look sunken in.

March 12 (later in the afternoon) - We find out that Gwen is not a match making a BMT that much more difficult. A bone marrow donor with a perfect match may not be realistic as multiethnic patients have a lower probability of finding a perfect match.

March 13 - Ava's blast count is around 45% and trending upwards which is disappointing and concerning to her doctors. A blast count of under 5% at the end of induction is the typical standard for a "good" outcome.

March 13 (later in the afternoon) - -Ava gets to go home for 5 hours before having to return to the hospital to be readmitted.

March 14 - Her doctors begin to discuss changing her therapy back to ALL and doing a Bone Marrow Transplant depending on how Ava responds by the end of this month. Ava's hair begins to fall out in chunks and she begins to express her fears of being embarrassed and ashamed.

We have asked ourselves over the last few weeks, why couldn't this diagnosis have been ALL with a cure rate of over 80%? 

Why couldn't it have been AML with a cure rate of about 50%? 

Why did it have to be MLL-a Leukemia so rare that there is no standard protocol for treatment? 

Out of the types of MLL, why couldn't this be the one that responded well to the ALL treatment? About 80% reached Complete Remission with this therapy. 

Why is she not responding to the AML therapy? About 50% of the kids achieved Complete Remission with this therapy. 

Why is she one of the few that possibly needs both therapies? In a St. Jude's study, only 2 kids needed both therapies and both of those children ended up dying. 

Why couldn't Gwen be a match? There is a 1/4 chance of siblings matching. 

Why did Ava need to suffer through an anaphylactic reaction when her body was so weak? 

Why did we not even get to spend one night at home before having to rush back to the hospital? 

Why? Why? Why?

I sit here humbled that I don't know one answer to all of the questions we've asked. I don't have a clue--not even an inkling. But I do know this. There are two things that will result from this.

1) Ava will be healed even with all of these odds stacked against her and God will get all the glory.

2) Ava will die with all these odds stacked against her and God will still get all the glory because she played her part in his perfect plan.

And I will continue to be humbled that I was given the utmost privilege of being Ava Bright Lee's mama. We were smitten since the first gaze and we continue to thank God for the gift of love and life he gave us these past 5 years with her as our daughter. We ask that you continue to pray that Ava has more time to make a difference in this world and that we might have more time to enjoy her presence in our lives. 

Thank you for those that are in the trenches with us during this time.


Mint said...

awww Esther, Ava and all of you are already in my prayer request list. Our mighty God surely has the best plan through these difficulties. I believe, you believe. thanks for the blog which make me here in Thailand able keep you guys in touch and update the prayer requests. love you love you - Mint

Darren said...

God bless you guys, Esther. Thank you for your post. I can't imagine what it's been like... I love Ava's response, "God sent his son Jesus down to Earth. That's my favorite part of the bible."

willlynilly said...

God is being glorified through your faith in this impossible trial. Thank you Esther and Mike for continuing to remind us of that importance, and my continued prayers for you and ava lee.
-matt rhee

Beverly said...

Esther, I have been praying for Ava and Gwen and you and Mike since following your post. I am a small group leader for 4/5 year olds at Willow Creek church and I will have my children pray also.

I currently feel quite selfish as I am watching my 92 year old mom battle for life, because God has given me this wonderful mom for so many years and Ava is battling at only 5. It makes no sense. I thank God every day for his generosity and I ask him to give Ava the 92 years my mom has had. Just know that He is there every moment, even when we are in our darkest spaces. Pryaing. Miss Bev

Tracy Gordon said...

I hope you feel all of our arms wrapped around you, every single second of every day!
Praying Praying Praying!
Love, Tracy G.

Chris Hoover said...

Sending so much love as my heart aches for the suffering Ava, Gwen, Mike, and you are living through. There are no answers, but there is boundless hope and prayer.
Love, Chris

ces said...

Dear Esther, it all makes no sense and as your brothers and sisters, all we can do is grieve/walk alongside you and carry this burden to our Father. Continuing to lift you up in prayer. May you find Him to be the Father of compassion, who suffers with you, and the God of all comfort, even when you cannot hear His voice or sense His presence.

The Lord is your shepherd, you shall not be in want. May He make you lie down in green pastures, may He lead you beside quiet waters, may He restore your soul. May He guide you in paths of righteousness for His name's sake.

Even though you walk through the valley of the shadow of death, may you fear no evil, for He is with you; may His rod and His staff comfort you.

Hannah Alterson said...

If any family is due for some good news, it is yours. Hoping with all my heart that you find a treatment that works very soon.
Love, Hannah

mingshu said...

Esther, it's ok to ask questions and express your pain. My heart goes out to you, Mike, Ava and Gwen. Ava has been in my prayers and on my heart everyday ever since we got the news. Praying for miracle!

ekc said...

Hi. I don't know you, but I've been following your family's journey since I've seen links and posts on Facebook. My heart aches with you and your whole family, but I do know that our Lord and Savior loves you, your husband, Ava, and Gwen so much. Our family is praying for your family--for healing, for comfort, for strength, for joy, for understanding, for love to transcend all of this.

sandalin said...

Esther, I grew up with Mike's family. His dad was our pastor and his parents are close friends of my parents. We have been following what is happening with Ava and we are covering her in our prayers. My husband and I are praying for all of you, along with our children. We cannot even begin to imagine all that you are feeling. But we pray that our God of comfort and healing will provide the most amazing miracle. We pray also for Gwen that her needs and comfort are met.

Anonymous said...

Lee family... I don't know you but I have been following Ava's progress due to a friend sharing your story. I have not stop praying since seeing Ava's picture. I lit a candle for her at church yesterday and I continue to pray for all of you. Stay STRONG!!! We will continue praying for beautiful Ava's health, wellness and joy.

Jill Reed said...

Esther, I'm not very adept with words. I wish I could say, or better yet DO something to help make things better in some way. Know that I'm thinking of your family all of the time, reading every word/update, and praying.

Anonymous said...

I dont know you, but like others, have been following from shared links.

thank you for you brutal honesty. i just cannot fathom what you are going through, but your openness makes my heart tremor and knees to shake right along with you.

i am absolutely, so entirely sorry that you have to go through this. my heart is breaking a million times over.

the only thing i can do is pray, so i will desperately pray for Ava, your family, and for you.

may the Lord, with overflowing power, pour His peace and love upon you, Ava, Mike, and Gwen.

Grace Y. said...

Dear Esther,

I am so encouraged by your incredible vulnerability and your faith in the God who saves. I cry with you now. God bless you all.

Grace Yu (in Houston, TX)

Unknown said...

Dear Esther/Mike,
Our hearts are with you all these days. Every day when I check the blog, tears came up as I am a Mom myself and I can imagine the pain. For consecutive weeks in Children's Sunday school, we talked about Ava, her love for God, and what our little ones can do for your family. Even the most naughty kid in class will pray sincerely for you. And the next week, they will remember and ask how Ava is doing. We don't understand why this happened, but what I saw in the eyes of my Sunday school children is that Ava's story is already working in their heart...

Yue and Junjiang

Anonymous said...

Dear Esther, we have been praying for you and your family. Ava is not alone, God is with her, and so many of us Chinese Christians are with you. 1Co 12:26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. (EW)

Anonymous said...

Dear Esther

Feeling your sorrow :-(

Once I had babysat a little girl of 2 years old, because her parents went on a business trip. She was singing by herself, “No, never alone---no, never alone--, He promised never to leave me, never to leave me alone….”
I was so shocked when I heard her clear and confident voice. Many years passed. She had experienced many bumpy roads of life and now a mother of three teens. Recently, she said, “...I am still singing that song sometimes.”
Letting the children know the fact that their parents are limited, yet our hope is trusting in our heavenly father who loves us more than anyone else in the world and rest assure in whatever His loving plan takes.

We are praying for all of you the peace of God, which surpasses all comprehension, guarding your hearts and your minds in Christ Jesus.

Sharing a song that rings in my ears, hope it helps:
Love to Ava, Gwen, Pastor Mike
Esther P.

Christine Lee said...

Hi Esther, heard the news from Chris Kim. I don't know if you remember me but I was there with you when we were on a panel with the high school students a while ago. I am so sorry to hear about this and pray that God would put hope in your hearts in this difficult time. Goodness.

Christine Lee

Anonymous said...

Dear Esther,
I can't stop crying every time I read your posts. when one part of the body of Christ suffers, we all suffer! I am humbled by your unwavering faith and hope in Christ! Praying for healing on Ava, for strength and peace in her to endure all the treatments. May you all be filled with GOD's strength and HIS peace! Phil 4:7 and the peace of GOD, which transcends all understanding, will guard your hearts and your minds in Christ Jesus
Kathy(I am Marilyn's cousin in CA)

amanda said...

"He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away." Rev 21:4

There are two options...Ava is healed here or Ava is healed in heaven. But Ava will be healed even with all these odds stacked against her, but it just might not happen this side of heaven, and God will get the glory regardless.

Praying for the Great Physician's mercy and that the healing and removal of all pain happens this side heaven, so y'all can have a million more moments together. Praying that God continues to strengthen your faith even in the darkest moments of doubt.