Thursday, November 5, 2015

It's Worth the Pain

"It's worth the pain, " I heard her say. I turned around and saw the baby clawing at her face.

"It hurts, but I love him so much that it's worth it," she repeated.

I've been thinking about that a lot recently. I contemplated what life would have been like without my kids. I'm pretty sure it would have been less painful. When they entered the world, it was through searing pain, especially Ava's birth. I remember it like yesterday. My water broke and still no contractions after 12 hours. So I was hooked up to Pitocin and the drip was started. About 3 hours in, the nurse came in and asked if I wanted an epidural. This was my first baby and I was determined to give her the best start to life. I thought that meant to say no to drugs. About thirty minutes later the pain really set in and I frantically called for the nurse. "It's too late!" she said. Apparently I was already fully dilated and the pain I was feeling was Ava entering the world through the ring of fire.

I guess that was only the beginning of the pain that would come. As my heart grew in crazy proportions, there were growing pains. One time while sleep training her, I remember her crying for a solid hour. I pressed my face against that hard wooden floor trying my best to see her from the tiny crack where the door didn't quite meet the floor. Eventually, I saw her give up and lie down. I tiptoed in to give her that kiss I longed to give while she was crying. Instead I gasped and picked her right up when I saw that she was sleeping in her own vomit. I had let her cry so hard that she threw up. I wept that day. Right there in that room, in the middle of her nap time, I picked her up not caring that it would set us back a few nights of training and I held her tight, asking that she forgive me for letting her down.

Then there was the time she almost lost her life to cross contamination of wheat. Her face turned blue and epi-pen after epi-pen failed. I held her slumped body in my hands and begged her to look at me, talk to me, breathe with me. It took 4 epis to coax her out of that reaction. To this day, parts of my heart have not healed.

The day we heard the news that she would be fighting cancer at the tender age of 5, there was an unspeakable amount of pain. The kind that turns your knuckles white, and knocks the wind out of you. The kind where curling up into a ball and dying sounds like a better option than watching your baby die a thousand deaths.

But, now, here in this moment I can't remember a more searing pain than this kind. I look at her and imagine all the moments that will be cut short. I steadily store away the memories that will have to be called upon in moments of deepest weakness. The utterly despicable thing is, no matter how many years we were blessed to have her, it will never ever ever ever ever ever ever be enough. When laying there without her by my side, no amount of happy times will ever suffice to take the pain away.

Yet, would I ever trade my years with her for lesser heartbreak? No. Because love is worth it. Every smile that she's given us over the years is worth the emptiness we will feel if she is no longer here. Every...I can't finish this illustration. There are no words in my vocabulary to adequately explain the anger, the sorrow, the fear, and the desperation.

It's like we're on the outside of a tall tank of water watching her stay afloat but knowing she will eventually drown. And all we can do is pound on the glass and plead for her safety. But we can't exchange places and we can't get in to save her. We scream our protests but it makes no difference. We scramble up the wall but we slide back down. And then she looks at us with those trusting eyes and we look back willing her to know that she is loved, loved beyond measure and that she was worth it.

We haven't been able to sleep since we've heard the news. We wake in the night reaching for her, touching her hair, holding her hand, whispering prayers in her ears, kissing her soft cheeks, soaking her in, afraid to sleep for all the minutes that will be wasted.

We are in a difficult place. The biopsy came back confirmed for leukemia, the same one that wouldn't go into remission before transplant. We are in another rare situation where this only occurs in a tiny percentage of patients. Of course, this means there is no protocol in place. So we can do a few things. We can wait it out and give her all the healthy months that her body has left before the disease infiltrates her marrow. There is a very small chance that her body could fight it off but it seems unlikely due to the fact that these rogue cells escaped the radiation and the graft-vs-leukemia effect in the first place.

We can go straight to a second transplant and hope that since she is in a healthy state now, it will boost her chances for a success. The prognosis for a second transplant is still only a dismal 20-40% disease free survival. Knowing that her leukemia is so aggressive, the relapse rate would also be very high.

The third option is to give her low dose chemo and skin radiation with the hopes that we can put her in remission or wait for new trials to be opened up. There are currently no institutions that do this as standard practice so we are on the hunt for hospitals.

So the question is, which option will give her the best chance at survival but the best quality of life? We are stuck in so many ways. To even be contemplating this is too much for a parent's heart.

God, meet us. Turn your ear toward us. We have no eloquent words, just groans and shudders and tears. Please help us in our time of need.

Ava, I could never have imagined how much my heart could love you and how much it could hurt for you. It has been hard to see you go through so much, but it has been worth it to be a family. Every single second of your life is a gift and we will cherish you always. Love will win. Love will win. Love will win.




14 comments:

Love&Pray said...

With tears, love and pray

Love&Pray said...

Ava, you are God's angel!

Kimberly said...

Love always prevails!! May His love envelope you and strengthen your hearts through this difficult heart wrenching journey. You are not alone ... He knows...He sees...He loves you so much! Praying with and for you - the Chos

Anonymous said...

Don't feel guilty no matter which option you finally pick up. There is no truly RIGHT answer here. However, remember, the truth is Ava is TRULY loved, no matter she is on earth or in heaven... Tonight, my heart shares a tiny piece of your overwhelming pain. Lord, please help us!

Living Under Grace said...

My mama heart cries with you tonight, carrying you, your sweet Ava, and asking for father's peace to buoy your souls tonight. Our future and hope is held secure in His hands and we hold on to that for your family. Sending love from Chiang Mai tonight.

Beverly Tucker said...

Esther, just know that whatever choice do not feel guilt. God is guiding you, even when you feel empty and alone. Know also that while in your pain your words have truly helped me through mine. I look at how Ava is so young and should not be going through this, so while I am watching my mom slip away at 94, through your posts I can do nothing but praise God for allowing me this wonderful woman for all this time. I know Ava feels about you as I feel about my mom. "She loves you to the moon and back" God gave her you as a mom, a wonderful gift. My mom now even at her weakest worries about me, moms always put their children first. And you moms are first in our hearts. Thank you Esther for helping not only your family but me. I pray for Ava and the whole Lee family night and day.

Peter said...

Esther, our hearts break with this news, and we pray constantly for you, Mike, Gwen, Jude and especially Ava... With much love, Peter & Lily

Dan Cagua-Koo said...

Just saw this post from Stephanie Chang's facebook post. So sorry. Have you exausted all avenues? I know you have exausted the standard oncology protocols. But there are other protocols. :( Blessings to you. Other protocols are more based on concepts of nutrition, toxicology, epigenetics, etc. And have had some success,...but blessings...

Anonymous said...

I read your posts because some of my friends are friends with you. Praying for Ava. My 4 year old just said "Let's pray for Ava". My heart is heavy reading your posts. Thank you for being so honest. Praying for your family. Please keep us updated.

Anonymous said...

Though you may feel empty , alone , but continue to have faith in God and pray . Know that He is always with you and has perfect plan for you and also for Ava. Stay strong.:-) .

Anonymous said...

There was a British baby given genetically edited immune cells that beat lukemia in a world's first. Wish the best to Ava.

Anonymous said...

I am weeping with you....angry for you...and holding Great hope for your family. No parent should ever have to make the decision you and your husband have to make and no child should ever have to endure what ava has endured and no siblings should ever have to see their family suffer and suffer themselves. But here we are in our broken world and in our broken bodies. Praying this morning for miraculous healing for ava, the healing of all your hearts, and for God to grant you and your husband great widsom. Which ever decision you choose, know you are supported 100%...by the Father in heaven who loves you and ava dearly and by this community. You are parents who love your child and your decision, as unfair as it is for you and your husband to have to make, is a reflection of that love. You are an amazing mom and your love for your children gives me a glimpse into God's love for us.

mingshu said...

Praying for a miracle!

dress up files said...

praying for Ava and your beautiful family Esther...